Team ILC Warriors
Comments
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Thank you all....X
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Lily~
Sending **HUGS** , prayers and good vibes!!!!! Will be thinking of you! Peace of mind always comes with making a decision that resonates with you personally!
XXOO0 -
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Good luck Lily!
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Nancy,
The more info prior to "big decision" the better. The 1st BS I had only wanted to do an MRI and then go in blindly to do a sentinel node biopsy and lumpectomy. I was no comfortable with choice so I got a 2nd opinion. He was way more proactive, MRI, CT, BONE SCAN, Sentinel node biopsy all prior to making the final decision. I ended up having a BMX because sentinel node biopsy found 2 nodes with cancer in them so I opted for a modified radical mastectomy and a prophylactic on the left side and did not want to take any chances that it had spread elsewhere. Use prayer too God will guide you he faithfully and gently reminded me how anally retentive i am about symmetry. I only wanted to deal with this monster once unfortunately my left TEimplant became infected so I had a 2nd sx 2 weeks later. Still recuperating but much less painful now that the infection is gone.
I know making this huge life altering decision is scary and needs to be made any and all info you can gather. These awesome ladies won't let you down that's why they're all here because they care and love you!
Hugs, love and prayers as you and other make the choice that's right for you!
Melinda0 -
just a comment on bone mets.. they are bone mets and it doesnt matter if its idc or ilc or even another type of cancer, they show up on bone scans the same way pretty much, either lytic or blastic.
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My first day on the forums and, actually, while I was reading the above, I was thinking, "I REALLY like this woman!" This is about Lemon who wondered in the post I read if she was sounding nutty.
I had mastectomy June 27, uterine cancer surgery August 2012. The craziness of finding these cancers! Last year "something" on mammogram that on ultrasound was deemed calcification and no need for biopsy. Then this mammo, same spot. Ultrasound showed suspiciousness and it was biopsied. Deemed IDC near nipple and would need lumpectomy. Surgeon spotted another lump by feel and recommended breast MRI for my dense breasts. I could not fit in their machine and BS said, oh well, MRI's have lots of false positives anyway. Long story short, I had four tumors, another BS did the surgery, and none of them were IDC. They were ILC and one pliomorphic. ER and PR +. Margins positive on plio as it was right against chest wall muscles. No chem recommended. 25 radiation treatments coming up. And then estrogen-inhibitors. Should I be worried that chemo was not recommended?
HollyBoo Age 64
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Lily,
What is a circulating tumour cell test? I just had mastectomy with three ILC and one pliomorphic. Very complicated finding all these tumors and identifying them----post surgery actually.
HollyBoo
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ok so I have a question for all... have stage IV from the get go, femara and almmost 2 years of NED.now some progression in the bonesso beginning Afinator/aromasin.... While I was NED my onc wanted me to decide if I wanted MX or not... I decided not to as the "horse was already out of the barn ". I f I already have mets I didnt feel it would matter..
now I had some progression so wondering if the MX would have changed things??? positive for lymph nodes also , so didnt want to have that whole lymphadema stuff to also worrry about.
what do you think ?
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HoolyBoo,
If you have questions you may want to seek a second opinion. Never hurts to have extra info all Drs are different.
Hugs, love and prayers! Melinda0 -
HoolyBoo
I too was advised against chemo and was nervous about that decision so I saw three oncologists, all who agreed. No chemo. Made me feel better knowing it was more than just one! Good luck.0 -
Us lobular girls are more sensitive to hormones than chemo in my humble opinion......
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so is it safe to say when you have exhausted the relam of ALS... its time to just do nothing? as chemo isn't really effective for most of us righ t?
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Rosie - when people talk about chemo not working as well for lobular, it doesn't mean that the various chemos are useless. There have been studies that show a better overall response to neo adjuvant (before surgery) chemo with ductal cancers vs. lobular, but that doesn't mean that it's impossible to gain any benefit. With metastatic disease, doctors usually start with the gentlest options which is why many women with any kind of ER + breast cancer might start with tamoxifen or an AI first, but chemo may prove to be an effective treatment if the AI's are no longer doing their job.
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For myself I would look at natural hormone balancers and also stay alert to the fact that cancer can decide it no longer needs hormones and change its needs......if I get scared I remind myself of how much I am doing different to when I got little c before, and its a lot, though of course I tend to only remember my bad habits (red wine, anything with sugar etc,,..) but in reality I have made a lot of little changes......
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Lily, I am trying to comfort myself too by thinking of the little changes I made. I Cut caffeine, alchol, and processed sugar. But I'm still scared. My fear du jour is that I'm having the wrong chemo protocol. TC was recommended instead of AC-T. And it looks like a lot of Stage IIIa-ers like myself get the latter.
What natural hormone balancers do you use? Is there something called DIM? If I did get the wrong drugs I'd like to think I can find another line of protection from recurrence.0 -
Lily
I am a firm believer that alcohol was my main causative factor for ILC.
I have managed to Only have 2 glasses in the last month. Which I feel very comfortable with. Hopefully I can keep that trend going.
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Nocompromises,
Well done! I too have cut out alcohol. But I think my BC was because I was exposed to above-ground radioactive fallout as a child. I lived in the fallout path of our Nevada nuclear test site.
Nevertheless, I dislike having to be so hyperactive about not having alcohol at times. I did love my red wine from time to time.
Claire
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CinAZ
Well yes prehaps nuclear fall out compounded by EtOH would be a pretty potent combo
Hope you are traveling well.
NC x0 -
Ann Fonfa of Annie Appleseed who has been in remission from stage 4 ILC for 20 years after taking Dr. Wong's herbs has shared her current protocol with me...
Ann's protocol..."I take Usana multi-vitamin HealthPak100 which turned out to really help resolve a lifelong constipation issue. My next door neighbor separately reported that she was taking the same thing and it had helped her Meuneres disease (spelled all wrong - balance issue). I also take garlic tabs and eat raw garlic or juice it daily. I take milk thistle one month each quarter to cleanse the liver. I do coffee enemas daily, and try to juice organic veggies plus green apple most days. I am currently taking alpha lipoic acid, gingko biloba, CoQ10 (400 mgs), magnesium, vit D, D&K, a green drink, brewer's yeast, ip6 (rice bran), chlorella, B6, B12, vit C, potassium salts added to juice, juice plus green/red, 50 mg niacin, berry complex and B complex, Iodine protocol, 95% vegan, occasional non-fat plain yogurt over potato. Rarely a free-range/cage free egg. Never meat, or fowl, very rare - wild salmon."
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Today's post on Annie Appleseed on facebook...this is truly inspiring!
Inspiration TODAY: (well yesterday) Ann F. got a call from Marijo. Because she was dealing with a recurrence of lung cancer and was granted a scholarship (free entry) to the Annie Appleseed Project 2013 conference, MJ called to tell us the... news. At the conference she met with Dr. George Wong, Chinese Herbalist and started taking the herbs in March. She just got word that her latest scan was COMPLETELY CLEAR!
Photo shows her in 2010 before original diagnosis of lung cancer.See More
Sandi GoldYEAHHHHHHHHHHHHHHHHH! Please take in and feel the good you are doing Annie in the role that you are playing!
Elyn JacobsIf the 2014 conference is funded, likely Dr Wong will be there....you don't want to miss out on this opportunity--many experts will be there...donate today http://www.annieappleseedproject.org/index.php/aboutus
www.annieappleseedproject.orgAnnie Appleseed Project provides information and advocacy on natural strategies ...for cancer risk reduction, recurrences, reduction of toxicities, and alternative cancer medicine. Located in Delray Beach, FL.See More
Carolyn MadisonI have been under Dr Wong's care since I met him at S.F. Annie Appleseed Project, my first mammagram post BC treatment is clear! Yay! So happy for you Marijo!
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Hi Everyone,
I sure did miss you all, wondered how everyone is doing. Congrats Claire I am so glad your surgery went well for you. Lily, that is great you were able to make such a tough choice. Welcome to everyone, I have enjoyed reading and catching up, feels like coming home.
I needed a break. I am feeling good and its just what I needed to feel like me again. So, now I have changed MOs and have found a specialist at the Cleveland Clinic I instantly liked! I have 3 opinions all the same the Ovaries need to go. I am 44, blood work shows at even close to menopause.. high estrogen.. I am not taking tamoxifen and have intention on trying it again. What do you all think? How many of you have done this and what was your experience like after? Reading alot of positive and negatives.
Thanks so much. Hope everyone is enjoying the summer.
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Hi, Lemon,
I think my situation was similar. My estradiol levels went way up while on tamoxifen (not what you want w BC) After six awful months of chem suppression of ovaries w Lupron, I had an oopherectomy, laparoscopically. Stayed on tamoxifen for another year (I had been 49 at dx and not yet menopausal) I switched to Femara this past January. Im totally fine. Any questions, pm me.
Shari0 -
Lemon! Welcome back! Did you doctors give any negatives to removing ovaries? My MO warned me it may not be such a great idea at such a young age, trading one problem for the next. I am 45, and if you remove them too early can cause some heart problems and a host of other things not so favorable. The idea is not to deplete all of our estrogen, we need some estrogen to be healthy! I think the idea is to 'balance' the estrogen instead?
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This hormone issues is bugging me - I changed to Exemestane and am starting to get same symptoms I had on Letrozole after just 3 weeks.....!!! Apart from normal hot flashes etc the worst are I feel depressed again, can feel it creeping over me like a cloak, at times I cannot get my breath all out of the blue just sitting and then my heart starts to go crazy again (remember I had stress test on heart and all was fine apart from a mild mitral valve prolapse I´ve had for years), and I get breathless even walking fast.......I so believe in exercise to avoid recurrence and feel frustrated I get breathless and have daily sensations of simply not being able to breathe on zero exertion.......and weight gain without eating more!
I know I could not be so disciplined as Ann Fonta........and I know I need to address the hormone issues so I am feeling frustrated as hell and have surgery next weekend and OH has gone all stressy again and describes it as a "nightmare" but will not say more.........
BUT LEMON I AM SOOOOOO PLEASED TO SEE YOU AGAIN I AM SHOUTING FROM THE HOT ROOFTOPS HERE!!!!
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*pokes head in and waves at lemon*
Lily so sorry you are having a rough time. I'm getting closer to that t-bottle and am really anxious about it. I hope you find something that works soon. Sending you big hugs.
Kay0 -
so happy to see all of you. I have thought of you so many times.
Lily- I see you up on the rooftop!!
have they put you on anything for the anxiety? I have been offered Cymbalta, Effexor and now Paxil. I have not taken any of them, I take my half a xanax at night and I sleep well. I know your not here in the states where they pass out drugs like candy on Halloween. I am not sure what to do about the hormones either but I dont even want to try if I am going to be miserable, there has got to be a happy medium. Is the surgery the fat transferring surgery? If so I want to hear all about it!Joelle- I have been reading alot about the ovary removal, lots of negatives. He did share with the menopause symptoms and a need for bone density tests. He said no drugs just supplements like Vitamin D and Calcium to keep bones strong. No mention of heart issues but I have read that also. I am 44. So, my OBGYN told me she would do whatever I want but felt keeping them until age 55 is best. But she also said she would take them both or only take ONE... I have read somewhere to only take one makes the other work harder and doesnt get the estrogen down. What have you read? I know you are our Chief Investigator! If the option of taking the one with the 2 little cysts would work I feel like that is something I would be comfortable with.
None of our options are any good.. they all SUCK! Talking with all of you is the best medical advice and CARE I could ever ask for. XO
Waving back at you Kay!!!
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Shari
How did you body react going into menopause so suddenly? Was it gradual or did you immediately feel the changes? Are you having bone density test? I have a million questions...LOL
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Lemon...Unfortunately, I haven't done a ton of research on the ovary issue since I had decided against it...Have you thought about contacting Dr. Wong? Or even joining Ann Fonfa;s FB page to ask? She has it under Annie Appleseed...
I also know that the Iodine Protocol helps to balance the hormones!
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Lemon, I was catapulted into menopause+++ by having the ovaries out and going on femara.
It is not super-fun and I felt quite strange for quite a while. The greatest annoyance was night sweats and hot flashes. It messed with my sleep.
As for the downstairs equipment, it felt completely dead for a while, but has since recovered.
I would say it took 6 months to a year or things to settle and for me to feel like I was fully "back."
As far as cardio disease, it has to do with both heredity and lifestyle. So if you are overweight and have blood pressure and/or cholesterol problems, for example, that might be a reason to keep your ovaries for protection. If half the women in your family died of cardio problems, when they were in their 60s, that could be another reason to leave the ovaries be.
In my case, we have a massive family history of cancer but no history of heart disease. My weight and diet are good, I exercise regularly and I have no other health problems than the stupid cancer. I was 48 when I had the ooph. Although the transition was interesting to say the least and I had a couple of freak-outs along the way, I am immensely relieved to have one less worry (ovarian/uterine cancer). It is also pretty nice to be PMS-free finally.
Joelle, how does iodine balance hormones, and what does "balance" mean in this context?
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