Team ILC Warriors
Comments
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Good morning everyone! Good luck to those starting rads this week. Remember to eat extra protein to combat fatigue. I hope everyone has a good week. Another snow storm expected here in PA
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Should I push for removing my ovaries and uterus? I will be on taxoxafin for 10 yrs. Being ILC and the SEs from tamox is that the way to go?
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Skigirl, it really depends on a number of factors, including age and family history (or not) of heart disease.
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Good morning Lobulitas! Welcome to everyone who is new! I'm just sorry you have to join us.
Lemon is going in for her first rad at 9:20. Let's send her all the good vibes we can! I go in at 10:30 for number 1. It's nice to know I have a rads buddy even though we're in two different states!
I hope everyone has a happy Monday! Slay the dragon, warriors!
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Hi Skigirl- my mo said it was ok that I got my period back, after about a year in chemopause, the last three months of that on Tamoxifin. But, when I got my period the next cycle and it was unbelieveably heavy (changing tampon at least once per hour) my obgyn had me in that day for a uterine biopsy. Biopsy was fine, but my ob (my aunt) insisted on a complete hysterectomy. My MO was hesitant at first, but they had a discussion and my MO was on board, even insisting that it be done immediately. It was a good call on their part. Pathology was benign, but my uterus had abnormal cellular changes that would eventually lead to no good. So, I'm very happy I had it done, and don't have that concern. I had it done via the DaVinci robot and was Christmas shopping two days later.
Had this not happened to me, the plan was (according to my ob and mo) to have vaginal ultrasounds every six months.
I do remember, a few years before BC, having my regular checkup, which led to my aunt saying that my uterus felt larger than it should. I was send for an US, and had a biopsy. The US was fine, but my endometrial stripe (?) was thicker than it should be. Biopsy was benign...and that was the end of it. That was about three years before BC.0 -
Happy Monday, Lobulitas!!
Feeling bad about the snow in PA, cause it's going to be in the 80's here and I am going for a bike ride.......in shorts!
Happy to see we a collecting new members. Welcome to everyone! Very sorry you are in a position to join us, but happy you are here.
Deelaw, I am headed for an endometrial biopsy and CA 125 test today due to an ovarian cyst that started out simple and now appears to be more complex. Thanks to a couple of trans vag u/s (aren't those fun?) they found that the uterine lining has thickened, hence the biopsy.
Any suggestions or info appreciated.
Tomorrow is my birthday.....the big 55. I am celebrating by getting my final fill and plan to be heavily medicated as I join the ranks of senior citizenship. Yes, I have received my card from AARP. :-D
Again, welcome to all the newly diagnosed. Hard to believe, but it does get better. Meanwhile, life is for living!
As they say in AA......we are not a glum lot. :-)0 -
Amy and Lemon, will be thinking of you both today as you venture into the world of rads.
It can be scary and a bit impersonal, but it is gonna zap any cancer cells that dare to remain.
As a friend told me yesterday......it's a good day to eff up cancer. :-)0 -
Kestrelgurl, Happy birthday! I turn 55 this year...senior citizens? Us? No way! We're just beginning to live!
Amy/Lemon, good thoughts from No. Az--and it is pretty easy altogether, I found, to get through rads...use the creams they recommend and Vit E oil before you see any change in your skin. I found it helps a lot.
And ask your RO about taking supplements or not during rads...mine recommended no anti-oxidants during tx.Welcome to the newbies. You'll find we are a pretty good group of lobulitas to hang out with and you won't feel so alone and scared here. Hugs to you--you will get through this.
Naturopathic oncologist today. Will report what he shares when I get back...
Claire
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Amy Lemon and Claire - good luck today, I used a lot of imagery in Rads to get through, telling cancer to "take that" and "get lost" but I found it very tough emotionally............
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Thank you for all the well wishes and advice for Amy and I as we go and zap these fricken roguees hanging out!!! Went okay for me, ugly icy, snow mix today, DH came with me, he was more scared than me! I didn't feel a thing just as you all said, my nipple maybe at the incision is itchy, might just by psychosomatic? Lily- I agree I am finding it to be emotional its like a reality slap! AMY- how did it go???
WELCOME to Deelew, Loriio and Kaydeesmiles! glad you found us if you had to be here. Deelew I have 2 ovarian cysts and have not yet started tamoxifen.. Skigirl- not sure how old you are but my OBGYN refuses to remove my ovaries, etc at my age, even with the cysts. This may change once I start tamoxifen if other things crop up.
Kaydeesmiles- 4 days, I am so sorry. I remember 4 days and you have ever right to feel freaked out. I didnt know where to turn, frozen in fear. Your going to learn alot here from these women, I honestly dont know what I would do without them. I know though not with me they are holding my hand for each procedure and drying my tears when I need them to. Xanax is also helping, I take 1/2 a pill and find it much easier to cope and stay relaxed, you might want to ask for a prescription, feels good to know they are there even if I dont need to take it. Glad you are getting the MRI.
Loriio- What are your receptor percentages for ER PR? Mine were almost 100%. It scares me when someone isnt given the hormone therapy. I did recently learn if ER PR although+ are low sometimes they dont.
Gail- get that last fill and have a WONDERUL Birthday!!
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All went well for me today, too! Just a little itchy at my incision site like Lemon. Normal? Looking forward to zapping some more bad guys tomorrow. ;-)
On the ceiling in our rads room they have a beautiful scene of the mountains by a lake (reminds me of Banff). But they ruined it by adding cut out pictures of wildlife! Gah! I did let them know it looked a wee bit tacky.
Happy birthday Gail! I hope you enjoy your day!
Claire, how did your naturopathic oncology appt go?
Welcome to our new sisters! Hugs and love to all Lobulitas!0 -
So glad to hear that the rads sessions went well for both of you. I also found it more of an emotional strain than a physical one; especially in the beginning.
I just got home from the ob/gyn and the biopsy went well. I should have the results soon. Hopefully this week.
I did talk to her about just yanking everything out and she said we could discuss once the results are in. She did think that in light of my DX's and possible insurance issues that it might be a good idea. For me it would just be one less thing to worry about.
I did enjoy a very pleasant 30 mile ride this morning in beautiful weather. Please remind me of this come July! ;-)0 -
Welcome to all the new girls! Seems weird to use "welcome" because I'm pretty sure none of us want to be in this club!
Amy/Lemon: Glad everything went well. As terrible as cancer treatments are, I kind of looked forward to radiation treatments. You have no choice but to be still and relax. Every other session, I would have "spa" day. That's when the techs would cover me in hot wet towels as a radiation boost. My center also had one of those murals on the ceiling and I would get lost in it or close my eyes and just chill. BTW the itching is normal.
Deelaw: I am struggling with weight gain now too. I am currently on arimidex as I had my ovaries removed so I'm not sure if the weight gain is from the meds or menopause. Either way, I hate it! Just gave my favorite bathing suit I bought 2 years ago to my 11 year old.
Kaydeesmiles as everyone has already said, you are in the worst part of the whole ordeal. It will get better. The fear is the worst, but once you get your plan in place and start executing it, you will feel better. I'm 2 1/2 years out and still dealing with fear and anxiety, but nothing like the first week. Hang in there!
Last, but certainly not least, Happy Birthday Kestrelgurl!!! They mean so much more now!
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Hi I have been meaning to post on this site. I was dx with ILC 1/2011 with a 3.8mm tumor, grade 1, stage 1, oncotype score of 1. I had microcalcifications that were picked up on a mammogram. Anyway, I decided to have a bilateral based on worry, fear and family history of breast cancer. I had one step ns reconstruction. Anyway, I have tried debated and suffered with to tami or not. I had un-pleasant side effects- dryness and stupidity plus many others. I thought about a oopherectomy.... Anyway, I did get to see Dr. Kevin Fox at U Penn 3 weeks ago. He reviewed my entire situation and let me know that I just need to follow up with the surgeon twice a year. He said 98.5 chance of no re-occurance with out tami and 99% with it. So I am hopeful for the positive and I am doing what I can with a good diet, metformin and some supplements. Anyway, I thought I would share my story. Yes, he said the recommendation for me is not the same for everyone else. I do hope this helps someone. The best to all. I will keep reading.
CR
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Hi Chocolaterocks:
Wow, my profile is almost the same. ILC 10/2012 with a 2mm tumor, grade 1, stage 1, no nodes involved, everything else ok. I had a BMX instead of radiation and other side for preventative. Now, I have had many, many second opinions (even went to MD Anderson and John Hopkins (which was great)) all say the use of tamoxifen is up to me to try it and if I have any SE stop. So I am on it now a month and have terrible fatigur and head aches. I am going to give it another month. I did not have the oncotype it was to small. (which I guess was good) Recurrence in the breast area is 1% and distant is maybe 1-2%. I also met with a BC dietician at John Hopkins it was great so now my diet has changed, big time.
Who put you on metafomin? just wondering.
Sharon
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Sharon,
Wow, very similiar to me. I get the metformin from a regular doctor. I tried to get in a study at Dana Farber but you had to be a 1c and I am a 1a so I did not qualify. Thanks for responding and sharing similiar data for top professionals.
CR
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Chocolaterocks,
Could you tell me what dose of the metformin you are on? I will ask my doc about it.
Sharon
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Happy Birthday Kestrelgurl. I hope you had a blast today.
Welcome to all the new lobulitas. To those who are newly diagnosed I wanted to tell you that you have plenty of time to get second opinions or scans or tests or anything that is needed to get a plan to beat this. I panicked when I was diagnosed and remember being angry because they werent taking me straight to surgery. I didnt understand that the best plan was to find out exactly what I had and where all it was. If you have any questions please ask away and we will be glad to help you and support you. Hugs
Healing hugs to all.
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I am chancing things here but the lobulita tag really up sets me - i cringe inwardly. It sounds too much like Lolita for me - sorry team
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why dont you like lolita ? are you asking for something or making a statement ? not meaning to be rude just trying to clarify what the issue is.
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Rdrunner, Lolita is a story about sex abuse, so it may be upsetting to some people.
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I don't like lobulita due to its asociaciones and i don't want to be reduced to the kind of cancer i HAD.....that is only a tiñy part of me and i want to keep in its place
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Chocolaterocks - I am in the same position as you. I had an initial diagnosis of LCIS in both breasts and elected to have BMX. At the time of surgery, the pathology also showed ILC of 3 mm, stage 1, node negative, Her-2 negative. My oncologist also gave me similar stats to yours regarding Tamoxifen. With all the side effects of Tamoxifen, I also opted to forego Tamoxifen. I did struggle with wondering if I made the right decision but after meeting with my oncologist and reading articles, I am comfortable with no Tamoxifen.
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oh I didnt know that about lolita sorry,.. Lily we are more then our cancers!!!! I think everyone is just trying to be lighthearted and find some humour in the mist of all this cancer stuff we have to deal with which at times is really hard to do.
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Gail- Hope you are having a wonderful Birthday today. Also hope the last fill goes well and you are pain free!!
Claire- What did the natural onco say? I think a bunch of us want details!!!
Lily- I like the lobulitas, but you have every right to your option. I like to think that each of us are strong, beautiful women. I imagine us all with the boxing gloves on, tough as nails when we need to be but also soft and kind to others.
Day 2 of Rads. I met a man and who was waiting for his wife. She was on her computer and suddenly felt like she had gotten a novicane shot in her mouth. Thought it might be a stroke he took her to ER. It was a brain tumor that had metastisized from her lung. She had immediate surgery, no brain damage! She is getting rads first then chemo for a year.. she is 50. I think I will stop and get him a treat from the bakery tomorrow, he was kind and kept me company while waiting. Gave me a strong heartfelt hug and I just of course cried like a baby! He said he would be there every morning and looked forward to my company. What a kind soul.. is this type of thing our silver lining? I know all of you are for me but stopping to talk with strangers and having human touch, contact is something many dont do anymore. Gave me Aquaphor today for my boob,, oily greasy.. I dont like it. Think I will use the aloe gel instead, any recommendations? I dont want a ointment.
Interesting conversation on the Tamoxifen, DX similiar to mine. Havent been giving it yet but its coming and I dont want it. I have read about metformin, I think Lily correct me if I am wrong had some knowledge about it?
Much love to you all~
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Hi--homies?
I came up with the lobulita thing all, I was just trying to be lighthearted and address the specialness of our dx and didn't know I would offend anyone. I made a joke about lolita early on in this thread, but I speak a little spanish and live in Arizona, so for us the "ita" is a term of endearment. We call our children mijito and mijita, roughly translated means "little dear", or "little love"...anyway, it was just a play on words. If someone wants to come up with something else, feel free.
This post might be long, so if you want to you could bookmark it and read later--sorry for the length,but I was at the NO for 2.5 hours (in his office) while he took an exhaustive patient history and then drew blood.
He is going to work up a complete directive based on my blood work and my pathology and recommend supplements.
Diet: he said that basically what I've been doing (eating pesticide free), mostly vegan, was the right thing to do. He said that its the pesticides that really threaten us--they are found in "oily things" like coffee and dairy, so if I want to keep eating those from time to time I should go organic. He stressed that a lot of dairy isn't really great for us (b/c of its high fat), but that he didn't have a problem eating meat from time to time as long as it was organic. He told me 1x a week was fine if I wanted to, but to remember that "meat was a treat" and not something to have every day.
I eat a lot of fruit and he was okay with that. But he said refined sugar is something to again realize that it is a treat and not to indulge much.
He looked at my BMI--it hovers around 20--and said that I was fine there, that he recommends being on the low side of a normal BMI, so I may try to get down to 19 if it isn't too much of a struggle.
I was taking green tea caps but he said unless they are standardized extract, I might as well not waste my money. He said the cheaper green tea caps are from the leaves and don't have any of the good stuff (ekg?) that I need. So I'll probably just up my green tea drinking or get some high quality caps from him.
My exercise routine--3 x week bikram, weights, 10 miles walking per week, etc.--terrific he said.
He said I didn't need to do a 21 day detox even though I asked him. Because of my active bikram practice--sweating profusely 3x a week for 90" at a time--was all the detox I needed, he said.
The alkaline-acid thing--he said that our bodies balance that out nicely and that it would be nearly impossible to change our ph for more than a few minutes at a time. Because of the way I eat (mostly raw, mostly vegan) I'm good to go there.
Things I remember from ALL the info: IV Vit C, filtered water, and positivity.
He recommends IV Vit C therapy for about 5 months--1-2 x a week to start then tapering off. I don't know if I'm going to do that, since I'm 2.5 hours away from his facility and I don't know if anyone here in my small city does it plus--insurance of course doesn't cover any of this. He explained to me how it works--drew pictures, even--and it makes sense but don't ask me to explain it here
I have information on it that I haven't read yet. Apparently it can stop tumor growth; he's used it with pancreatic cancer patients and has had remarkable results.Filtered water: we should all be drinking it to avoid the estrogenic compounds that municipal water sources can't remove. He recommended a reverse osmosis system and add in some river rock to balance out the alkaline. DON"T drink bottled water.
Finally, he said that the people he's seen do the best post-cancer are those who don't even entertain a thought of recurrence. They take care of themselves and enjoy life but don't fixate on what might happen.
He's checking my Vit D levels again and my thyroid. He didn't say that taking thyroid meds would increase risk for BC but being hypo for a long period of time could put someone at a slightly higher risk. He didn't seem too concerned about this issue. He's also looking at some other stuff so that he can formulate a plan.
In short, I'll share again when I get my own supplement list tailored to my high risk ILC.
I'm sorry I can't give you all the research links etc for this post but to be honest, I'm overwhelmed by the information. All I can tell you is what he told me. I trust him though, and it was a relief to know that I'm going to be followed and I have a plan to follow by someone who specializes in naturopathic cancer tx and understands that I'm using both "regular" tx (MO) and "complementary" (him).
That's all for now.
Claire
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Wow thank you claire - i am not offended so please don't think that i sat with it for a few days and just had to speak up in the end ....
In too am doing a naturopathic regime but diet is a hard one as i don't like cabbage etc ....i think the don't entertain idea of recurrence is a tough one!!0 -
Lemon I had really good luck with Miaderm. It is expensive, about $30 a tube, but very soothing and not greasy. I went through about 3 tubes during the 6 weeks of treatment.
I agree about the Aquaphor, it seems sticky and gooey....not pleasant.
Lily, I understand your feeling about Lobulitas, but for me it's kind of a way to minimize or reduce the magnitude of this disease. Sort of like I am poking fun at it. Maybe that seems weird, but I do tend look for humor in most things.
My fill went well. Not nearly as painful as I pre medicated and only got 25 cc's. Did get my exchange date- June 7th.......is it here yet? ;-)
Now I just need those test results to come back good and I will be a happy camper.
Hope everyone is having an awesome Tuesday!0 -
hi ALL
ok, Question for you ladies- trying to understand this once and for all. OH and this is my MOM I am discussing, not me, so no confusion.
Alright- she had her BMX, 2/14/13, she starts RADIATION next week 3/27/13-
BUT
she is not currently on ANY Hormone Therapy- she is ER/PR +++ HER-, we like the sound of Femara (she's 76), but WHEN does she start it??????
*she doesn't have a MO (short story- we went to a multidiscplinary clinic last wk ref by her surgeon, it wasn't at all what we were led to believe it would be, apparently the random DRs attending are then automatically your Oncs. We LIKED the RO, but were less than thrilled with the MO! the medical oncologist sat in chair and talked. about? she didn't examine my mom. she only disc Hormone Therapy b/c I ASKED. she said NO to the chemo b/c of Moms lab results/surg, and only said yes to an Oncotype Test after I asked about it and said we'd like to know her score, also we wanted a bone density test before the radiation began. Otherwise she didn't say much of anything. I guess we want a MO who TELLS us, yes allows us to ask Qs but we want to know they know. Of course this MO is knowledgable, she was tops in her class etc etc, but we just felt like idk- if we hadn't asked- she wouldn't have mentioned much of anything. and then the assumption she is the MO? doesn't feel right.
I mean, she didn't start my mom on any meds etc or order any tests etc, and said we could come in to her office this wk. well what the heck was point of seeing her then????? oh well.
oops. that a bit of a rant?
my Qs for you all-----
when do you start HT??
and what TESTS should be ordered before HT and Radiation? and also- I asked about a bone scan and was told that wasn't necessary.... I know how sneaky this ILC is. I actually met a gal who had NO nodes involved yet her BC met to GI... sooooo I was thinking body scans are necessary? help?
thanks to all for all of the support.
I feel time is of the essence and we need to get moving along here!
hugs!
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Lily, we are all in many ways defined by our cancers. If we were not, we would not be here after our radiation ended. The truth is, we all know deep down that, as much as we might hope otherwise, our cancer is an ever present danger we must live with.
When we watch what we do or do not eat or how much we exercise we do so because of our cancer.
We may not like it, but our lives are changed for ever. The trick is to have the best quality of life we can, learn not to dwell on the risk of recurrence and laugh as often as we can.
Lobulites may me laugh and that is good.0
