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Topic: My choice--refusing treatment

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jan 24, 2017 12:34PM - edited Jan 28, 2017 12:00AM by Monetswaterlillies

Monetswaterlillies wrote:

Hi everyone,

My post won't be too popular but I'm entitled to feel the way I do--to fight cancer or not. Im 50 and recently dx with IDC. Clinical staging is in the works but regardless of the results, I just don't care to treat it. I have my reasons, and would like to talk with others who feel similar feelings.

Thanks so much, everyone.


Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Nov 4, 2018 01:23AM PebblesV wrote:

@Jadedjo - Peace of mind with your decision is the best thing and what you need to persevere. I was super anxious and unsure until I made a decision to not do chemo but do the radiation and tamoxifen (I will try and brave through the side effects yes) and do what I can with nutrition and exercise. Once I had that path, I just felt more clear-headed, the anxiety went away (I was SOooo anxious before, I can't even explain it, when I got a good reason to back up my no chemo decision it was like a cloud had lifted) and I feel ready to tackle this now.

Something interesting I read from people who beat cancer naturally, they just decided they would succeed. Not that thinking that works every time, but I like the point of view. I chose this path so I'll do everything I can to succeed at it!

By the way, I've also had reasons I couldn't exercise (lumpectomy, then pulling eggs etc.) so if it helps, I lost 6 lbs this past month without exercise, and 12 lbs total the past 2 months (about 6 lbs a month)! Changing up the diet goes a long way. I do plan on exercising soon and that should help get me past any plateau. I have lost 20 lbs (just on nutrition changes alone) and have 20-30 more to go, so maybe we can do this weight loss journey together!

Anyways wishing you the best with next steps and glad you feel so set in your decision. I know you don't think you're strong but actually making that decision and holding to it is strength! I hope you feel encouraged along the way. I'll share any tips I find on boosting metabolism because I have to do the same thing.

And, re: not feeling alone, here's my little emotional support pup hanging out with me during my first week of radiation treatment (which went fine, no side effects so far). I still stand by my reco for you to think about rescuing a dog who needs you as much as you need him / her! 🤗🐶




Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 4, 2018 02:54AM Jadedjo wrote:

Thank you  

Your pup is totally adorable. Sadly we aren't allowed pets where I live under no circumstances.also with financial issues it's unfair to the animal I may not be able to afford to feed.

I wish nutrition changes worked for me.

I have made huge changes to my diet for years now, I was exercising 1-2 hours a day for 6 days a week for the time I waited for surgery eating mostly protein   and I still didn't  lose a pound just stayed within a certain number which Is why I say dead metabolism instead of slow. 

This has been an issue my entire life. I can have a perfect diet and be highly active and I will not lose any weight. Only time I did was when I couldn't eat solid food due to severe acid reflux for almost 4 months in 2015 and was living on 500 cal a day. All together 60 pnds I lost most of it the first 45 days the rest until almost the end of the fourth month then I was able to start eating again and even though I was still barely able to take anything that solid or that much  in for a couple months afterward was definitely only about 1000 a day and I was exercising hard the weight just kept coming back fast. I think within 4 months I had gained 45 back and stayed there didn't go up but didn't go back down either. i gave it up in defeat by spring  2016, I wasn't going to put all that work just to go back to where I was before I put the work in.the acid reflux had/ has restricted my diet so much that I wasn't eating much that could be considered unhealthy at that point or that much period. Yet still gained and gained fast. 

To give you an idea of how discouraging it is when I went to night class three days a week I walked to either the place that was more then halfway there or to the school itself. One was a 90 min walk the other was a touch over two hours, this included home dvds on non school days.made gluten free muffins and ate nuts or any snack I could carry in my backpack without too much space taken up and considered that one of my meals of the day.gained weight. The entire time I did it In summer. So add sweating to that.  the little amount of food intake  has a lot to do with not enough money for 3 meals a day sometimes at the end of month not even twoI tend to have one decent meal then scrounge up little things for the other. Right now my daily diet is plain activia yogurt (or plain whatever is on sale which right now is the activia for $2.50, that isn't over $3 a large container)with protein powder and occasionally a peach fruit cup for one meal and then veggies and some kind of protein for the second with the occasional half bag of Orville's microwave popcorn tossed in if I still feel like I'm hungry. I know I know the last isn't all that healthy but it's definitely filling. Thankfully acid reflux has killed my appetite mostly dead so I don't feel hungry most days even when I barely eat and am only able to afford one meal a day with a bite or two of whatever else I can scrounge up. This is the cost of me eating mostly healthy.I honestly don't know what I would do if my appetite went back to normal. Feel like I'm starving everyday I guess.

The ginger ale they gave me at the hospital for surgery was the first thing other water and almond milk and a few attempts at trying  different herbal teas ( still cant stomach them)fruit plus juice  for awhile but stopped eventually cause of the sugar content. 

I mostly only drink water, the almond milk is for when after I get sick of it and I look at my reusable water container and say I need something different cause I can't look even at water right now. I actually had a doctor say to me if you want to lose weight you have to cut junk food like pop and fast food out of your life. He didn't believe me when I said I hadn't drank Soda in years and I couldn't afford fast food cause I call McDonald's 'food poisoning r us'which is the only one I could probably afford and the rest is too expensive.

I actually had someone when I told them all I had and chose to do the past 3 plus years say to me "if I had done everything you have and are doing  I would be a size 6 by now" I didn't know whether to laugh or cry.ya I don't lose a pound, tone up from exercise yes but no weight loss even after constant exercise.

Worst part is I've told every doctor I've seen since I realized what was happening and not one believed me "less calories in then you burn" is the answer and mine is "what part of I'm between 1000-1200 a day, according to the calculators I'm way below the burn rate" none believed me just said eat less calories and exercise harder completely ignoring what I had told them. There are reasons I don't trust doctors.

And now they tell me well if you do this and take this it will reduce the chance of reoccurance to this and I'm saying unless that number is zero don't bother talking, buddy .i will take my chances and live each day with some quality of life even if it's shorter cause my quality of life already sucks and I'm not going back to that place I was in 2015. Which both chemo and tamoxifen would do. I can't stomach simple normal medications, the tamoxifen which considering the risks and side effects I suspect is harsh on ones system. Now add that to a barely controlled acid reflux issue that's left me with almost daily nausea at varying degrees of intensity for over three years.the day I feel ok is a rare one.

The choice for me is dead by my own hand within a year because I've gone back to my 2015 experience,(I am not even willing to risk trying it for a short time to see what happens because there's a huge risk it would trigger  and once triggered it will take months or worse won't be able to be controlled again) or do  nothing and maybe eke out a few more. Lesser of two evils thing for me.

Here I go being long winded again. I'm so Sorry.

Best hope and wishes that things keep going well with the rads when it comes to side effects and is fully successful destroying what it needs to and that the weight loss continues. And give your pup a little cuddle for me, would you please? 

Thanks 


This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 4, 2018 10:46AM PebblesV wrote:

  • @Jadedjo - my Dad always said if once you fail, try try again. All you can do is keep trying, if something isn't working for you, change it up and try again. I had lost 30 lbs by 2015 and told myself I would never gain again, and lo and behold 3 years later I gained that back and more! I'm trying not to beat myself up over that but just lose it again, although more with lifestyle changes that I can stick to so more slowly. I'm also averaging 1,000-1,200 calories a day right now. It's weird, I go through periods where the scale stays the same even though I have really good days and mad exercise, but it stays and stays, and then a week or two later I'm down a lb. so then I rejoice. I'm weighing myself daily right now.

In your case, I actually think there are some new things you could try if what you're doing now isn't working. When I read your post, it stands out to me that you're still eating a lot of processed food. For me, the thing that made the biggest difference was cutting the processed food, not the calories. Also on some other thread, I read about a women who was struggling losing weight on Tamoxifen and tried diet after diet (Jenny Craig, Weight Watchers, etc. - all processed) and couldn't lose weight. Then she switched to an all natural diet and finally lost weight!

I figure next you are going to say you can't afford all natural. So I found these suggestions for you:

- Instead of the activia yogurt for $2.50-$3, try an organic banana in the morning which is about $0.35 cents at Ralph's. Plus it helps overcome acid reflux - I found this: https://thatsitfruit.com/blog/foods-that-fight-aci... and this https://www.google.com/amp/s/www.sepalika.com/gerd... and more, you get the idea. Bananas are good to fight breast cancer AND good to fight acid reflux AND inexpensive, even all organic! Melons too.

Instead of the Orville's microwave popcorn to feel full, try an avocado. It's a superfood - guess what also fights acid reflux (https://www.healthline.com/health/gerd/diet-nutrit...)... it's impact on breast cancer is less proven but it's been known to fight other cancers (https://www.healthline.com/health/breast-cancer/do...). Anyways, it should help with the full feeling, maybe even drizzled with olive oil, and is 99 cents to $1.50 at Ralph's.

Instead of a peach fruit cup that is processed, why not replace with a whole, natural fresh peach? On Ralph's online, a Dole peach fruit cup is $3.39 while a whole peach is $0.92 cents. I think peach fruit cups come with extra processed ingredients that don't help with your weight loss goals.

Instead of protein powder, cook a fish. Salmon is good for fighting breast cancer, and one of the less expensive varieties.

Ginger is apparently really good for acid reflux and beating breast cancer.

The time you couldn’t eat because of acid reflux sucked but also showed your body can actually lose weight. So now it’s about figuring the right things your body needs to lose weight in the right way, not by being sick, but by figuring what works for you.

It does sound like you need to get your metabolism revved up again. I'm just learning more here as I need it too, but in exercise I hear it's less about the cardio and more about the strength training to rev up your metabolism - more lean muscle, body burns more, something like that. I also found these helpful articles:

https://www.wellwithinbeauty.com/blogs/volume-6/to...

https://www.healthline.com/nutrition/9-fixes-for-w...

BTW I'm not a nutritionist, I just took your specific case and researched stuff that might get you past the walls you're running into. It's how I figured what works for me - a lot of trial and error. I've cut red meat, dairy and processed foods because of the breast cancer. Apparently sushi (with no rice, the pups get the rice) works for me in losing weight. And lots of fruits and veggies, some which I juice and some I just eat. I gain weight eating nuts for some reason so trying to avoid too much of those. I tried the Ketogenic diet and lost weight the first week and then never lost weight again so I stopped that, regrouped to what I’m doing now. Berries and carrots and broccoli l are awesome for fighting breast cancer! Carrot - tomato juice is a yummy, healthy combo for me that helps with my salt cravings. Oh and I still crave crispy bacon, but I’m trying to be disciplined for now

A FREE tool is MyFitnessPal. You don't need to pay for the premium version to get everything you need out of it. I started to log in what I ate and was surprised at the calorie count of some stuff. Anyways I just log it and it lets me look back if I gain or lose weight and see what I did to help or hurt that, then I adjust accordingly. It's all about figuring out what works for you and it's just a free tool that helps with that.

These are just suggestions, I have no idea if they will work or not, we're all snowflakes here, each one with our own individual make up and you have to find what works for you. I just think in your case, all hope is not lost, and there are some things you can try that it sounds like you haven't tried yet, and it's possible to do it within your constraints. So why not give it a go?

Also, my reaction when I read your story is not at all like that person who said they would be a size 6 if they did what you did. Some people would, but not me and not you. I actually look at the stuff you're eating and think,"OH I get why she's not losing weight, it's all processed. It's not McDonalds, but it's still processed foods." Then I look at the exercise - which ROCKS by the way - but I wonder if cardio isn't working for you, and they say strength training is better to boost metabolism, maybe there's a different KIND of exercise that would help your loss in metabolism? I totally agree by the way that you killed your metabolism when you were eating 500 calories a day so now it's about how to bring it back, and also that you are making the right decision not taking tamoxifen for your specific case because tamoxifen can cause weight gain and you would hate that, and your case is so early stage with no lymph node involvement that you are probably not taking a lot of risk saying no to it. Suzanne Somers is famous for doing the surgery but refusing chemo and tamoxifen like you and she's doing great some 15 or 20 years later!

Oh - my little pup Domino sends you many hugs and licks! And wants you to know that if one day you want a pup, emotional support letters mean your landlord has to allow that even if the place isn't pet friendly. But also thanks you for thinking responsibly about your financial ability to care for a pup first. Again, sounds like you’re being smart. Maybe one day you can.

Sorry everyone else for the novel. To make up for the long post, here’s one more cute dog pic 😜


Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 4, 2018 03:37PM Jadedjo wrote:

Thank you.

I will try changing more after New Years which is my switch over time, pretty much live it up until Jan 1st then buckle down, but I can tell you right now because I live in Canada and because of where I live fresh fruit costs a whole lot more then that especially organic which I don't even bother with cause I'm already stretching things out. I buy them but I buy them when it's in sale same as I do with the fruit cups when I say the diet is recent I mean litarally like the past month because that's what's been in sale at my grocery for an extended time. We have to get our stuff shipped in from the states and we pay out the nose for it. I may try buying frozen fruit instead of fruit cups from here on out. I should also add I lived in bananas for awhile as I do t have much more able to eat due to food restrictions and I made myself sick of them, hopefully after the new year I can look at them again without cringing.

The activia may be processed but it's surprisingly actually reduced the amount of acid reflux attacks I've had recently when things and should have gone nuts due to medications I was taking after surgery and then afterward. The protein powder is hemp and it's supposedly natural and estrogen free.

I haven't had a mostly settled stomach in awhile and it makes me reluctant to stop it which I'm going to have to once it goes back to regular price.my cancer dietician told me that the amount of estrogen in dairy is not that much to make a difference and I'm holding on to that because otherwise all I got is quinoa and veggies left to eat and the quinoa is expensive so I don't have very much. Until I have a better income many cancer fighting and non processed foods are off my grocery list. I get frozen where I can but fresh stuff is more what has a great sale when I go and if I have the money for it.

I think I might have also forgot to mention the cardio I do uses light weights, I was at 3 pounds when surgery came but will have to restart at one once I get the go ahead. I have no way to do heavier as I can't afford a gym pass even at the Y but the work outs I do are a mix of cardio and strength training with light weights and towards the end I was doing them I think both came up to almost 90 min a day with a half hour Pilates and yoga afterward to stretch out the muscles and sometimes I would do light yoga at night to try and relax but inability to lie down or sometimes even go on my hands and knees because of nausea pretty much killed that and I was trying to find an alternative when surgery came. 

Sadly Not just the landlord, it's one of the tenants living here who would make my life so miserable I would have to get rid of the pet anyways. not worth the war that would start even if the landlord had allowed it which since its clearly and expressly stated on the lease I highly doubt.( I believe it says absolutely no pets of any kind) I would have to move which I also can't afford right now. Possibly ever the way things are going. I wish I could afford to do an al natural diet but at our prices I would run out of food money by day ten of the month.

I'm actually at higher risk because my ER/PR is almost at 100. So it's fully fed by estrogen.i  think Susan Somers might have been one of the lucky ones. I will be talking it over with the oncologist but I would straight up say I don't want to go on a medication where I have to take other medications to reduce the side effects or risks involved. I was reading a thread where the people there had a ok response to the medication but one thing I saw through out was a lot of them were on Effexor or Zoloft which I have had a bad reaction to both so it's not even an option for me to help in any way. The doctor and cancer care people may end up pressuring me to "give it a try"  by saying they won't help me unless I do, the agency that financially supports me right now may even threaten to hold my funds unless I take it I wouldn't put anything past them but it's pretty much lower dose then normally prescribed and the second I get a side effect I can't deal with ( aggaravation of my reflux and constant nausea which I have lived with for a long time now and I'm really tired of ) I'm opting out. And there would have to be some serious serious sweet talking/ blackmail to make me even consider that. I don't want to deal with the chemically induced  hot flashes and night sweats when I haven't hit menopause yet but probably would  be on a five year tamoxifen plan so will get it from two sides even if the chemical one fades eventually, i don't want to deal with muscle cramps which seems to be a norm, I don't want my already fatty liver going toxic because the tamoxifen made it worse. I don't want my blood sugars going crazy because tamoxifen does that too.i won't even go into the heart  attack and stroke risk rising. It sounds like I have to sacrifice what little health I have left just so I can survive another decade or so. Because with what I have right now in my life another decade or so is looking like a nightmare instead of a blessing.

I'm not saying 100% no, I'm saying right now in my life i feel it's not worth the price paid. If I had a child or husband I would probably say I will give it a try for them stonincrwase my odds of being around but I don't have either one and no hope of it after this mess.i made two lists one was is it worth the risks/side effects I would have to endure? And the second one was what would make it worth enduring for 5 years. I highly doubt it but I could possibly be one of the ones not get much side effects. I still do not think it's worth risking it. My entire life has been suffering and sacrifice. And I'm tired of doing them both. So I looked at the answer at the bottom of those lists. The first one was big fat No, the second one pretty much was everything I will never have after this and honestly finally admitting that there will never be a chance. When I looked at the list and it said might help you live longer I literally wrote "not a selling point for me!!!" I knew from that point out the answer at the bottom was gonna be reasons to endure it:none.

Unless something really  good happens in the next two months ( because I straight up said I ain't doing xmas on that crap even if I was considering it,xmas is hell for me to begin with)that was on that second list my mind is not likely to change. Hopefully if I get a reoccurrence it's localized and not distant but I go in accepting that reoccurance may be mets And who knows maybe I will be in a different mind set then. Unlikely but possible.i don't know how long you have before it's not feasible to even try taking it anymore I imagine there is a cut off where it wouldn't help afterwards so even if down the road I changed my mind I couldn't take it.

Truth is only having a 50% chance is not worth it because I'm that unlucky person that tends to be the other 50%, to have to go through that and have it happen anyways. Ugh.I will talk stats and everything with oncologist when I see them but I would say my mind is 75% made up at this point.

Your  adorable pup looks like a happy one.always smiling :)

I also apologize for the novella I been rambling lately and can't figure out why. 

Best wishes.


This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 4, 2018 05:32PM WC3 wrote:

When I went on a weight loss diet I ate a lot of lean protein and vegetables and fewer simple carbs. If I did have fruit, it was something fairly low or moderatw on the glycemic index like nectarines, and always with some protein. When I originally started, I limited my calories to 900 per day and was going to the gym...I did 20 minutes on the treadmill and then about 4 exercises with the weights, both free weights and the machine. I gained weight the first two or four weeks or something like that and felt horrible so I increased my carbs slightly and my calories to 1200 per day and that is when the weight came off, but that was before I had thyroid problems.

With the hypothyroidism, my weight started creeping up when I was walking 5 miles per day and I kept reducing my calories until they were ridiculous low, and the only thing that happened was I started losing fitness getting fatigued. The weight gain with hypothyroidism is primarily fluid retention and "connective tissue byproducts" whatever that is. In any case my jeans were too tight and I felt like crap.

So I totally believe you say you are doing the right things and they aren't working, and I completely understand your frustration.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Nov 4, 2018 07:39PM Jadedjo wrote:

WC3 

Thank you

I believe my problem is health issue related too I shouldn't have to be to be only in starvation mode to lose weight, but my thyroid came back normal and they didn't want to bother looking further.i kept asking to be sent to an endocrinologist especially thanks to my hormone related symptoms but every time they test it  its normal. I shouldn't have to be in severe starvation mode to lose any weight.like sometimes I'm there accidentally because for the past 15 months my appetite has faded to nothing  and I can go on an accidental 15-18 hour fasts Still not feel hungry and then finally remember I haven't eaten until I get really dizzy but still.

I don't think people on here realize how expensive food can be where I live  and how little money I have to buy it. Especially recently I don't know what blight landed but fruit was off the wall with the prices and that's at the cheap place.meat has always been which is why it's  not huge part of my diet anymore.

I know microwave popcorn is bad for me and a high carb but they were on sale $3 bucks a box  at Walmart recently there's 6 to box and I only eat half the bag at a time and store the rest in a storage bowl with a lid for the next day. So a 6 pack box can get me through 12 meals. As much as I would love to replace them with avocados or another fresh fruit or veggie , $3 would get me two avocados especially if it's  out of season.say half an avocado a meal. 4 meals compared to 12 isn't a contest for me.as for fruit for  a bag of six peaches I was craving I once paid $7. For $7 I can buy 2 packs of fruit cups (which I rinse the juice off of cause too sweet) I don't have to eat it within a week cause it will go rotten, I don't have to get there and prepare it for freezing by buying baggies try to find space in a freezer I don't have much space in cause it's occupied by the veggie bags and ice trays which yes I need. Water is my main liquid intake.warm water tastes like stagnant pond water to me. I do it if I have to but otherwise handful of ice cubes go flying into my daily reusable water bottle that keeps things cold for hours.

I can be smarter about it and once I use my last box  I will be buying the Orville brand again because it has no artificial preservatives like no names do but I will get the smart pop instead of butter and I will use bulk brand cinnamon as a topping,maybe buy a small bag of off brand nuts to toss in for protein. So I can go smarter with the cheaper processed food but when i can stretch it out for half a month more actually cause I don't eat it every day just when my appetite perks up or I digest what I ate that day too fast, I can't give it up. Not living on the money I do now.

Same reason I'm not giving up yogurt, I can keep it to a cup a day( right now I use my mini bowl which is little. Ore then a cup)two in the blah days with whatever plain yogurt is on sale (sometimes I hit the jackpot and get a $2 one for a week) and the protein powder I have left from before surgery which I spent good money on it and am using til the bitter end. (Literally that hemp yeah stuff is awful) then will find a cancer dietician approved affordable alternative.( still working on the hemp one and it's been 7 weeks I don't use much a one or two heaping tsps at most depending  on how much I'm eating) because I don't always have quinoa I try to use it sparingly and I need some kind of daily protein. 

It's also my alternative when my appetite is so dead it's a blah day that I wouldn't be able to stuff an actual real meal down my throat so I toss in a tsp or two of protein powder depending on bowl size and now I will be changing to frozen fruit so defrost a cup of that toss it in and that's a meal for me. Two on blah days. With the frozen fruit I can stretch that out for 3-5 meals depending on how much I use.there are days I have to force myself to eat because food just seems ..eeech.. it's an appetite thing not a stomach thing.also a cost thing. I can't do organic and I can't do natural foods as much as I would love to. But like I said I can be smarter, we will see once I can start exercising again if it's smart enough. Right now I just need to look at something longer then ten seconds and I've gained a pound.

i envy Americans who live near the places it's grown where they get the fruit and veggies cheaper. We have to get it transported here and pay for it with higher prices . And recently the prices have been ridiculous.

Best wishes I hope you found or can find something that works. Take care.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 4, 2018 08:50PM - edited Nov 6, 2018 08:48PM by obsolete

Weight loss is so very challenging, heavily influenced by our DNA / physiology & our exposure to environmental toxins. Oh yeah, soooooo frustrating!

No matter how aggressive I am, I cannot lose weight unless I first CLEANSE my LIVER. Otherwise, liver becomes overwhelmed. There are different kinds of liver cleanses, but I prefer the natural lime juice, grapefruit juice, and lemon juice with olive oil 2-3x/day.

Also occasional teaspoon or 2x daily of ORGANIC unfiltered apple cider vinegar with a tiny bit of organic natural honey added to hot tea. Also add organic banana separately to compensate for any possible depletion of potassium. Check with docs as apple cider vinegar can interfere with some meds. ACV cuts my appetite in half if taken about 30 minutes before meal.

Please avoid drinking any water with fluoride & chloride added help to arteries clear of plaque buildup.

There's so much stress in our lives, in addition to bad GMO foods, processed foods and fast foods with artificial colors & additives. We're surrounded by bad crap in our water supplies, nano-particulates & toxins in our air and carcinogenic fertilizers (Round-Up, for example) in our already nutrient deprived garden soils.

YouTube video with 2 doctors claiming that 1/2 of BC recurrences & 2/3 of BC deaths follow after completing 5 years of Tamoxifen use. (Minute 46) AROMATASE INHIBITORS & BREAST CANCER THERAPY - MILESTONES IN ONCOLOGY youtube.com/watch?v=PNbIfbMIM94

Note: Edited to add video info & link

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Nov 4, 2018 09:12PM obsolete wrote:

Cleansing of our pineal glands also helps with stress management and Spiritual growth, which ultimately contributes to our emotional health, mental endurance, etc.

Human pineal glands can become clogged with multiple calcifications from the minerals & crap in drinking water, which consequently clog up our pineal gland. Taking a drop of skate liver oil, made from bottom-dwelling ratfish, helps to decalcify pineal gland. Also organic eggs and organic dairy butter oil help. I also eat organic egg whites daily.

Healthy pineal glands are important for spiritual health, something the ancient indigenous cultures practiced. These tribes had zero tooth decay & no cancers.

Dr. Weston Price DDS had authored a book on subject regarding degenerative diseases from the wrong nutrients & carcinogens.
What's

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Nov 4, 2018 10:46PM - edited Nov 4, 2018 10:56PM by Marymc86

PebblesIV,

I'm not a Nutritionist either, but I am a Health Educator and a Certified Health Coach. I'm impressed with your research and advice PebblesIV. You are spot on!

I have had a weight problem all of my life. In spite of my efforts, and for the most part I followed a healthy diet since college 32 years ago. I've gained and lost over and over. I told my doctor I'm doing the best I can and can't lose. I could tell he didn't believe me. Almost 6 years ago, I'm 55 now, I decided to give it one more try. I really didn't change the way I ate because I had been eating what I should. I did try to stop eating be fore bed. A habit I had gotten into. Snacking on cheese and the like. The only other thing I changed at first was I stopped using a microwave. I was trying a new recipe. I was making sweet potato chips in the mocrowave. They were good, but they caught fire in the microwave. If I had been in the other room, it would have set my kitchen on fire! I never replaced the microwave. Ive now lived 4 years without one. Kind of scared to have one now. Anyway, I suddenly started losing weight. I had been trying for 2 years and no luck. But 2 to 3 months after I stopped using the microwave, I began losing and I dropped 15 lbs. Not because I was eating unhealthy processed food. I used the microwave mostly to reheat things and they were healthy things I had made. But a microwave makes it easier to go back and have more. Thinking about the way you are going to prepare your food on the stovetop or oven forces you to think about your food overall. After losing the 15 lbs, I plateaued again, but I kept on going with the good eating pattern. It took me almost 2 more years to drop another 10 lbs, but it did come off. What was different in those 2 years is, I slowly added in exercise. I had broken my ankle and had surgery. I couldn't walk for 3 months! I did not gain during that time either. In physical therapy, I saw how they added small exercises to rehab my ankle. I began adding more exercises to the rest of me other than the ankle. I began to lift free weights. I also did sink ups ( modified push up off the kitchen sink) I did squats, planks, crunches. And, it became a routine I enjoyed. I didn't do it for hours. I actually did it for about 10 min 2 or 3 times a day. Then, I ramped up my walking routine. I fit it into my life. I did it at home and it worked! Six years and I have maintained the lowest weight within 5 lbs. Yes, the cancer surgery and radiation kind of messed up my routine, but I'm getting back on track. I told myself, focus on being heathy and strong. Focus on building the muscle, not on what the scales say. I weigh everyday, but I try not to get down when the scales don't move. I measured myself with a tape measure when I started 6 years ago. It's great to measure now and see a 7 to 8 inch difference in the measurements compared to then. I have lost 40 lbs! Yes, it took 6 years. But, the muscle I built weighs more than fat and takes up less room. This means, my clothes fit even though the scales say I haven't lost that much. 40 lbs is a lot, but the clothing began to fit better way before I lost 40 and that motivated me to keep going. I didn't set out to lose a set amount of weight. I just set out to see what would happen if I try this or that.

This just shows that age doesn't mean you can't lose weight. Just don't give up on your routine. Plateaus will happen. Age does mean those plateaus will last longer. Just focus on getting stronger and healthier. It will happen. Believe it. I almost gave up. Then I said just one more try. You know what my cancer doctors said? They said, "Well, you are not obese". WHAT? I've never heard that before. Do it ladies!


Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Nov 6, 2018 05:37AM - edited Nov 6, 2018 11:50AM by WC3

Jadedjo:

I actually do live where it's grown, including the avocados, and if $3 gets you two avocados, that's pretty good! When I was a kid, avocados weren't carried in the markets much but the fruit stands sold them, 4 for a dollar. The fruit stands are gone these days and they are carried in the markets. The good ones at the expensive market are $3.99 each and the iffy ones at the cheaper market are usually $1.99 each. I've read that avocados are not recommended for breast cancer though.

Nectarines around here are usually $2.99/lb to $3.99/lb, but sometimes the super cheap market sells unripe ones that won't actually taste good when they ripen for 99 cents/lb. Grapes can be as low as 89 cents/lb or as high as $4.99/lb.

I was food insecure most of my life so I know what it's like to walk in to the market with $20 and have to try to find a a way to get a weeks worth of meals out of it. When I was on my weight loss diet I had a food budget of $250/month. I did spend a lot of it on protein, which was mainly in the form of Boca burgers (soy), extra lean ground turkey, canned tuna, chicken breast, and low fat cottage cheese. My carbs ususlly came in the form of Crispix, Cheerios, or Special K if I could afford it, bread, low carb buns, rice, or sometimes potatos. My vegetables were broccoli or canned green beans. My fruits were pears, nectarines and apples. I had the misfortune of only being able to get to the expensive market most of the time, and that was about the same time I developed my hatred of cooking, but occasionally I managed to get to Costco and buy a few things in bulk.

I generally can't eat shelf stable meals or snacks because something frequently in many of them triggers my acid reflux.

Years later when I had to redirect funds to my cat's health care though, my food budget dropped to about $60 a month for three or so months. I survived on pita bread and hummus but I really don't recommend it.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Nov 6, 2018 02:49PM Warrior2018 wrote:

I hope no one minds me posting this here but I’ve been following along and can understand how things can get tight sometimes. So I just wanted to post a couple of things I found when googling cheap vegan meals. They include healthy simple ingredients. Here’s one link- https://sweetsimplevegan.com/2018/01/easy-vegetable-ramen/

That looks yummy. He’s an example of what a day could look like and cost:


Regular milk would work for non-vegans. ;) The site where the example is from is called penny hoarder.com but I saw it in Pinterest



AKA- Paleo Unicorn 🦄😊 Dx 3/14/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2018 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
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Nov 6, 2018 10:19PM Jadedjo wrote:

Thank you WC3, I actually saw peaches for over $4 for an LB and gave up that's when I bought the fruit cups, they were around $2.00 each at the time because of a sale. Doesn't take many fresh  peaches to hit a lb.between reflux triggers, weight triggers and now breast cancer triggers I think I'm going to have to find a way to eat air because that's all that's going to be on the list.

I live near the cheaper market but it's not a place you want to buy your fresh foods as almost everything looks beat up and half rotten, no use almost paying prices equal to the more expensive store and only able to use half because of the state of it.pretty much what I'm living in now is beans, broccoli, the occasional eggs, and occasional popcorn and my yogurt and fruit mix with protein powder with quinoa tossed in every so often.Same thing here I find stuff with heavy preservatives triggers so I try to find ones listed no preservatives and I rinse off what I can before I use it. I had to do that myself scrimping by in the cheapest items for close to a month, I can't look at either item now without my stomach turning.


Warrior 2018

Sounds good,although I got to admit I never heard or seen of vegan ramen. Thank you.



This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 7, 2018 01:57AM WC3 wrote:

Jadedjo:

No it doesn't take many fresh peaches to hit a pound a pound does it! And the market I lived near back then got the big peaches and nectarines so one of them would take up a good chunk of that $20. That is when I started to hate cooking because of the stress of trying to figure out how to afford all of the ingredients for a meal.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Nov 7, 2018 12:49PM Jadedjo wrote:

I know :/

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 7, 2018 01:09PM IchangedMyName wrote:

hello! I am curious if there are any people diagnosed with stage 3 BC who have refused conventional medicine and how you are doing?

How long since your initial diagnosis?

Any changes to the tumors (shrinking, staying the same, enlargement)?

How are you feeling overall (energy? Pain?)

Thank you

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Nov 8, 2018 08:26PM PebblesV wrote:

Hi all - just checking in! I've been busy still working (from home at least) while I go through radiation treatment so it's been nutty, but I just told my boss that I need to take at least 1 day a week to myself to focus on health and healing and he was fine with that, so one day at a time.

@marymc86 - thank you! I just feel we are our own best advocates so I've "nerded out" a bit with this bc diagnosis and am trying to learn as much as possible to get myself to a healthy state all around. I've always fluctuated with my weight, I'm trying to go down now and do it by lifestyle changes that mean once I lose the weight, it will stay down vs. the ups and downs I've always bounced around in. I think it's brilliant that you didn't give up, did one more try, and interesting that without a microwave to allow for easy temptations, you lost weight! I eat sometimes because of habit and something is there, bit by bit I'm trying to cut the temptation foods from being easy to reach to.

And congratulations on losing 40 lbs! What you did is exactly what my husband is encouraging me to do - just keep going and sticking with it and don't rush it. Make lifestyle changes that you can then stick to, don't think you have to do crazy exercise all the time (b/c then you'll be good for a little bit then stop, I did that). I also do a lot of workouts at home and it's encouraging to know that adding just a little bit of the right exercise helped you push past your plateau. I just hit a 22 lb. weight loss! But I also need to lose 40 lbs. so I have a ways to go... thank you for your encouraging story and being an example that was able to push past the plateau.

@Jadedjo - it sounds like you are starting to find something that works for you, so that's what's most important. Find what works for YOU! And if at some point you hit a wall, I just want you to feel empowered that you DO have options and can always change things up. This is such a life altering and stressful thing for all of us that hopefully feeling that there are things you can control help even the littlest bit. Sounds like you have lots of great suggestions from others on this board and I have one more, are there any local Farmers Markets? Usually they sell better fruit for cheaper. I found this site that helps you locate your local Farmers Market - anyways, just options! http://www.localfarmmarkets.org/CNONfarmmarkets.ph...

Also, I do a lot of workouts at home instead of the gym (a lot so I can be home with my husband and the pups too). I have a set of free weights at home to help with that, maybe that's a thought for you so it's a one-time, hopefully not expensive investment, and you don't need to worry about paying for an ongoing gym membership?

@WC3 - that's SO interesting that you gained weight on 900 calories per day and then lost on 1,200 per day. I think that gives credence to what they say re: eating too little gets your body into fast mode and slows down your metabolism, and just right could be better for your metabolism, so it's all about finding the right balance for you. Thank you for sharing and I hope you've been able to find another balance with the thyroid problems... I did decide I would do the tamoxifen hormone therapy since I'm not doing chemo, and I'm a bit anxious about side effects of weight gain from fluid retention and low estrogen allowing fat to bind to the fat cells more...

@Warrior2018 - cool find on the recipe, vegan ramen? I have lamented that I can no longer have ramen (for now, I'm not saying forever, just for now) so maybe I will look into this too. :-P

@LovefromPhilly - I do have a story to share but it's not stage 3, it's my co-workers Aunt (so a real person, not an internet story) who was stage 1, but I want to share because she did not do any treatment at all, shrunk her tumor entirely until it disappeared, and has been cancer free for 2 years! It took her 3 years to shrink her tumor. She did not even opt for surgery. She sent me a text of what she did so I will pass along her tips - this is what worked for her, and I've adapted some of it, but not all of it, as I believe we all need to do what's right for us. I WILL say that when they did my ultrasound, they thought my tumor was between 2-3cm and when we did the surgery, it measured 1.8cm. I don't know if I shrunk it but I was adapting some of the nutritional changes already (3-4 weeks between the biopsy and the surgery) and my friend's aunt thinks I shrunk it. She herself had a 1.6cm lump measure in ultrasound that was 1.1cm in the MRI 4 weeks later. She also lost 10 lbs during those 4 weeks.

Anyways, here is the advice she had passed on to me! These are her words so I'll put them in quotes:

"First and foremost, I did not panic, and strong believed that I would heal myself holistically. Then I decided that I am not doing any toxic treatments, and I used google to research my options and find a holistic practitioner. I tried everything!

1. I excluded processed sugar and any food that turns into only sugar in my body, like white rice.

2. I ate organic fruits, vegetables, legumes, nuts, beans and eggs.

3. I ate products of grass fed animals only, and no later than 2pm to give my body 8 hours needed to fully digest.

4. I used organic apple cider vinegar, and I ate a lot of pickled food.

5. Stopped eating bread with yeast, because cancer is a yeast.

6. I stopped using any plastic containers, and drank spring water delivered in glass bottles.

7. I did treatments with magnets followed by foot bath.

8. I did whole body cleansing, like juicing and coffee enemas.

9. I did walking,exercising, and relaxation.

Basically I changed my body from acidic to alkaline in order to boost my immune system. But I think what helped me the most is the intermittent fasting. Everyday I fast for 16 hours on liquid, from dinner to lunch the next day."

Anyways, that is what she did. She was also stage 1.

The things I adapted from her protocol were to exclude processed food, eat fruits and veggies and mostly organic, no bread, more juicing, tried the glass bottles but not sure if I'm sticking to it. I did a little bit of intermittent fasting too but not regularly as I don't want my metabolism to go down. And based on more learnings from sites like ChrisBeatCancer.com and FoodforBreastCancer.com, I decided to cut red meat and dairy entirely for now. I still eat fish and white meat like chicken and turkey though. I'm trying an 'integrated oncology' approach - I was fine with the surgery, fine with radiation, and I'll do the tamoxifen hormone therapy, but no chemo, and yes to doing everything I can from a nutrition and exercise standpoint to improve my odds! It's all about just doing what you can control.

Hope this helps!




Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 10, 2018 01:53PM cyndijack wrote:

Hi

I'm new to the site, so I'll do a quick intro. I'm nearly 62 and live in Bulgaria and also not having treatment after being diagnosed 3 years ago. My reason for this is mainly financial, I simply don't have the money to pay for any treatment. I haven't gone down the route of alternative therapies, I just accepted my fate and waited for what would come (defeatist attitude I know, but as the original poster said, I have my reasons)

However, I recently noticed that the lump appears to be getting smaller, the afternoon nap has become a choice rather than necessity, and my appetite has improved. I told myself I was imagining things until today, when I stepped out of the shower and hubby commented that I look 'less deformed'. Which is why I've joined this forum, because I have no one to talk to and need some perspective on this. The one friend I talk to about everything else also has breast cancer, and it seems insensitive to say I think I'm suddenly getting better without any treatment when she's had the most appalling treatment (I don't like to generalise but Bulgaria is not the best place to be ill) and is not getting better.

What does anyone think about this? Am I deluding myself or has anyone else experienced the same?




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Nov 10, 2018 02:54PM IchangedMyName wrote:

pebbles thank you for all that information! I am curious about people diagnosed Stage 3 - if anyone has been given this diagnosis and refused conventional treatment, would you mind please sharing your story? Thank you!

Cyndijack - perhaps you are having a “radical remission?” What stage and type of breast cancer was your diagnosis 3 years ago? That sounds amazing and wonderful!! Hope it’s not too early to say congrats!!

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Nov 13, 2018 02:31PM cyndijack wrote:

Sorry for slow reply, I haven't quite found my way around yet.

Thanks for your reply Philly. Medical matters in Bulgaria are very different to what I was used to in England, and what I imagine is the norm in many places. I didn't get a diagnosis in the way you mean, just a ton of paperwork and scan photos that mean nothing to me, and a surgeon telling me, via a pretty inadequate interpreter, that it was cancer and I had to be operated on next Monday, URGENT, URGENT!!!!. I have to wonder now if anything I was told that day was true, although I can't dispute the lump which had reached the size of a tennis ball and is now closer to a golf ball. Having felt like I had a death sentence hanging over me for 3 years I'm now totally confused.


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Nov 13, 2018 05:00PM Salamandra wrote:

cyndijack,

That sounds like such a nightmare of incomplete information and constrained options. I'm so sorry. I hope that you are right and some how things are getting better!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2018 05:46PM 53nancy wrote:

Hello everyone; I am just checking in to see how you all are. The last three months have been SO busy with projects and funerals to go to and another recent CT and Bone Scan; the CT scan came back as negative for disease, and my oncologist did not anticipate anything with the Bone Scan; in fact, she said she thought they were overstating the possibility of metastases in the spine, as she believes it is calcium build up because of osteoarthritis. I had the Scan yesterday and she said if there was no change, she would not order any more. So my "happy news" is that I am 16 months past surgery and 11 months past radiation therapy, and everything seems to be good. That doesn't mean I won't worry about what the next scans will show, but at least I can "rest easy" for a little bit. This has been a crazy week with four appointments in four days, but hopefully we can sit at home for a while and have some quiet time. Hope to have some free time to catch up with everyone these next few days. Thinking of you all, and hoping those of you who are celebrating Thanksgiving today have a very good one.


Surgery 7/18/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 8/16/2017, DCIS, Right, Stage 0, Grade 3, 0/0 nodes Dx 8/16/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (IHC) Radiation Therapy 11/20/2017 Whole-breast: Breast
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Nov 22, 2018 09:42PM - edited Nov 22, 2018 09:46PM by Rosabella

I'm stage 3 and can't imagine refusing tx unless maybe if I was way older or had a terrible disease which my prognosis isn't good any way. I was dxd at 50, just turned 54 and am on tamoxifen with no harsh ses.

Dcis and stage 1 folks don't need chemo, it's the stage 2 and 3 where you have to really think about it. If you decide no conventional tx then you can't look back if you progress. Make a decision you can live with, be at peace with whatever happens, and cont living your life.

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, PR+, HER2- Surgery 8/6/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy
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Nov 29, 2018 12:51AM PebblesV wrote:

Hi ladies - hope everyone had a happy Thanksgiving! I made my first gluten-free dairy-free pumpkin pie from scratch. The sugar came from honey and dark chocolate, which are recommended to help fight breast cancer, and it was actually pretty good!

LoveFromPhilly - You're welcome! Hopefully others who were stage 3 can get back to you. I've heard a lot of positive stories re: stage 3 and 4 survivors who are years out from bc and thriving. I think there are some on the board topics there? Also have you checked out ChrisBeatCancer.com? While it's not breast cancer, he was stage 3 plus lymph nodes for the cancer he had, he did surgery but refused chemo and went a natural path, and I just read his book and listened to his Square One program. While I'm not as religious as him, I think there are some really good nuggets on the nutrition / lifestyle side that I found similarities in other articles too (another favorite of mine is FoodForBreastCancer.com) and he's interviewed breast cancer survivors that were all later stage and beat it naturally. Might be worth checking out?

53nancy - Congrats on being a year out from the radiation therapy, and for the clear CT scan! Did you receive your bone scan results yet? Wishing you all the best... I remember the 4 appointments in 4 days, I think that was one of the hardest parts of this process (that and the anticipation...) - I give you props for having such a positive attitude with it.

Rosabella - Really helpful to hear you have not had any harsh side effects on Tamoxifen. I am supposed to start taking it after the radiation treatment is done. Any advice? Take it morning or night? Did you wait to take it or start right away after treatment? I am nervous about the potential for side effects...

Jadedjo - Just checking in on you, how are you doing?

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 30, 2018 12:21AM Jadedjo wrote:

Pebblesv

Thanks for asking,Physically I seems to be mostly healed, although one of my foobs is "crinkling" big time and looks like a half filled wrinkled baggie is in it. Definitely  gonna need some revisions which means more surgery. Mentally not so good, my usual holiday blues has turned into holiday despair. When you make your counsler cry you know your in a bad place. 

Basically I been losing myself in mystery theatre 3000:the gauntlet and soon the return ( thanks to my friend sharing her Netflix with me)and playing word Crossy app by mind drift. Actually I got a ton of free word game apps and I just lose myself in solving them so I can forget I exist in some way.

Haven't changed my mind about tamoxifen, the fact that there's only a 5% difference in my survival percentage without it and that it would only be 30% effective pretty much cemented my decision.

Hope things are going well for you.

Take care.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 30, 2018 06:02AM - edited Nov 30, 2018 06:05AM by helenlouise

Hi jade,

I had a BMX in July and the result is not very attractive at all. At first I had two nice foobs but one was a seroma (that I had drained several times) and the other a hematoma. Plus I am puckered on both sides.

I am still reluctant to wear even a soft post mastectomy bra because the side I had rads is still sore. Not sure how I will go with real prosthetics because I am not even. Plus it just feels so weird having a bust!

Think I would be best with a revision but not sure I will ever get there. I am quite use to being flat. I am finding summer a bit challenging with less clothing to conceal my bustlessness. But everyone i care about knows my story...

I have a neighbor who had a BMX at 38 and she has gone through reconstruction and has just had nipples attached and awaits those to be tattooed. So we have great conversations. At that age I would do the same. For me the additional surgery is a big negative. But I admire her and wish her the world.

Hope your doing ok.

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 8/28/2018 Xeloda (capecitabine) Radiation Therapy 8/28/2018 Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Dec 1, 2018 08:26PM Jadedjo wrote:

Helenlouise

Thank you. Sorry about your experience. I've been told I qualify for nipple tattooing but I just look at them with "so yourjust gonna ignore the boob rippling like a pond with a rock just tossed in then"  I literally look like fat ugly barbie cause that's how they shaped my foobs.

I'm starting to realize they put in the implants I didn't want the ones shaped like a wee hill instead of the over inflated pancake one even after I told them I wore sports bras daily to tamp down how much my real boobs protruded from my chest. I'm uncomfortable with  what I have now and I hate it. I've been calling my chest the freak show. Could it be worse?yes but I'm the one that has to live with what I got now and all I'm thinking is it wasn't worth sacrificing the nipples for because I did that to go smaller and the doctor did the last thing I wanted which was make my boobs more obvious.im not kidding when i say Barbie boobs that's how they stick out and without the nipples kinda look the same except one side is crumpling in on itself. What's worse is the last time I saw him he never even mentioned revision. I hope he doesn't expect me to just accept that this horror on my chest is the way it's supposed to be.

I didn't think it was possible to hate my body more then I already did beforehand but, yep, here I am.

Take care.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 2, 2018 06:09AM - edited Dec 2, 2018 06:13AM by helenlouise

Jade I am so sorry. It's very disappointing that your reconstruction has not gone well. Heck I have only had the mastectomy and I hoped for a better flat chest than I have.

It seems many in the discussions are happy with their new breasts. It appears lots go straight to BMX or UMX from the first diagnosis. I wasn't given that option with DCIS in 2013.

My neighbour seems to be struggling some with the last op and now waiting for nipples. I am not sure how many have a really perfect outcome. I spose we would all rather our own breasts back.

For me I have mostly accepted my new normal. I am sometimes surprised that I am not more devastated or angry cause I really did not want the op and the aesthetic outcome is less than good.

Anyway here we are. Try to get past disliking yourself. I know it's really hard when the physical is so front and centre of our lives. The outer means so much to so many. But there is more to you and I.

Wishing you all the best xx

2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 8/28/2018 Xeloda (capecitabine) Radiation Therapy 8/28/2018 Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Dec 2, 2018 10:54AM Rosabella wrote:

pebbles. Don't be nervous taking it. I read folks here talking about bad ses and was scared. The thing is those who are doing well most don't post anymore. So there are more this sucks posts than doing well ones.

I waited a couple weeks after radiation to start. I just popped the pill. Initially I had some uterus cramps on and off. Had u/s to make sure all is well. Found many fibroids which tamoxifen can make angry. Never popped a pain pill though. Hot flushes so I bought a hand held fan called opolar foldable power bank fan model f22 series off Amazon. Very well made and blows great air on first of 3 speeds. So I have it with me when it strikes.

Side effects can be at the beginning, middle or toward the end of your time on any med. Just report stuff to your onc. If you go in scared you may experience things that really aren't there. Anxiety creates and magnifies physical symptoms too. I was on celexa before bc. I take it in the am and tamoxifen in the evening. Experiment as to when is good for you. Remember if you expect something to happen it probably will. The mind is that powerful. With my profile I'm on the at least 10 year plan. 2.5 years in. While there is no way to accurately tell if it's working as you can still recur on it or an AI, I'm at peace throwing the book at it. It can reduce your cances by 50% so I'm in. Combine it with exercise and diet to reduce chances even more.

Good luck

Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, PR+, HER2- Surgery 8/6/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy
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Dec 3, 2018 07:10PM PebblesV wrote:

Rosabella - thank you SO much for that encouragement. That's a good point you make that most who do OK likely post less. That's good to hear about waiting a couple weeks before starting... a few other people who seem to be doing fine on tamoxifen waited anywhere from a couple weeks to a couple months so I will definitely ask my doctor about that. Do you make an appointment with your regular doctor before starting tamoxifen or are all the follow ups with the oncologist?

You and I are similar minded... I feel that I'm getting at this with the surgery, radiation and tamoxifen, and if I add the diet and exercise that should reduce the chance of recurrence even more. And you never know what can happen but at least I would be doing everything I can, while maintaining my sense of self and quality of life (also important). I've actually lost 24 lbs since I was first diagnosed with breast cancer! I just didn't want to wait to start with the diet and lifestyle updates. There's so much waiting we have to do waiting for appointments and waiting for test results and waiting for treatment, so I figured I could at least address the stuff I didn't need to wait for which was the diet and exercise. I'm not depriving myself but I have cut red meat, dairy and processed foods for now, and juicing a lot more. I'm trying to make it a lifestyle change instead a quick weight loss because I've been up and down before... so I need to lose weight and stick to it this time. I have more to go, but the weight loss so far is making for a more fun Christmas as the husband is getting me some nice new clothes! :-P

Jadedjo - I'm glad the body is healing physically at least, and sending hugs (and Domino cuddles!) to help with the emotional side. I also have this crinkle on the scar of my lumpectomy - it's dented and wrinkled in. It's gotten a little better actually with radiation, which is weird but I'll take it, and I hear we don't know what our breasts will really look like until at least 6 months in, something like that. So we'll see. Did they say anything like that to you regarding timing before you do revisions? BTW if you want more free app recommendations, I've discovered I can play Bejeweled Classic and Genies & Gems (not word games, but fun app games) without needing to pay up for anything, so those are also a couple entertaining ones. I think in your case, you are spot on with your decision on tamoxifen, I totally understand it from where you're at. Plenty we can do with diet and exercise to prevent a recurrence. For me, I'm going to give it a go, but since I seem to be skating through radiation with no side effects, I'm really, really hoping that I can be one of those who skates through taking tamoxifen with little to no side effects as well. We will see! We all have to do what's right for us, and I really feel that no one knows us best except - well - ourselves.

I think it's up to you as well whether you want another revision or not, so I hope the docs will respect that!


Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 3, 2018 08:42PM Rosabella wrote:

pebbles, my docs make appts for me. Generally your onc will see you every 3 or 4 mo the first 5 years out from diagnosis. Then every 6 mo then annually for life. But every onc is different. If there are no concerns, your appts will be more apart. My bs sees me every 6 mo for the first 5 years out from diagnosis then annually for life. I had bilateral mastectomies so he's my mammo. My plastic surgeon has his own schedule for me depending if I have issues or not. He'll be annually for life too. Pcp is every 6 mo if I have nothing to keep tabs on for life.

But again all docs are different. My pcp does routine labs on me while onc will order scans if needed. I'd ask your docs the plan they have for you to routinely check you.


Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, PR+, HER2- Surgery 8/6/2015 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy

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