Looking for your long term issues w bmx without recon

Not sure if this is the right place to share my experiences, but since Epicsquirrel is about to make some critical decisions, here goes:

I was diagnosed with IDC (Stage One; so tiny that I needed a special biopsy to confirm it) in December 2015. I had a lumpectomy, then radiation. No chemo since the cancer was so containable. I had the "Canadian" course of radiation: three and a half weeks. I knew that radiation was a common post-lumpectomy treatment and thought nothing of it.

Long story short, I ended up with massive, excruciatingly painful third degree burns to my right breast and armpit. The radiologist said he'd never seen such a reaction, and despite being empathetic, offered no solution to what I was going through. Eighteen months and innumerable specialists later (much of this time spent bedridden with my breast an open, bleeding and seeping wound and narcotics barely touching the pain), I found a world-class breast surgeon who didn't mince words: the breast had to go. By this time, it had shrunk to half its normal size, and still had open wounds.

In April 2017, I had a mastecomy and DIEP flap reconstruction. For those who've never heard of this, the procedure entails removing the entire radiated area--skin and tissue--and replacing it with a large swath of flesh taken from one's abdomen (or other area). It was a 9 hour surgery and the recovery was extraordinarily painful and long. Now at six months out, I still have pain and it may well be long-term. My surgeon did the best job that he could with what I presented him with, and the final diagnosis was "Radiation-Induced Necrosis" with some indicators of Scleroderma.

I know this is a discouraging tale, but I am sharing it because I want others to know the dangers of radiation. My condition was said to be rare. Even so, I believe every woman should question radiation (and maybe share my story with their radiation oncologist). Insist that you be tested for any Scleroderma indicators before starting it, and be sure to get a second opinion. I live in Maine, and ultimately had to go out of state (Sloan Kettering and Brigham & Womens) to get an answer to why this happened to me.

epic

I had bmx, my tumor was on right side and lymph 2-3 involved , I did chemo first , then surgery.. my drs all urged me to consider recon

I chose not to and to remove both.. good thing as a new microscopic tumor was forming on the left that would not have been discovered for another year or so...but I am 63

However I had a plastic surgeon do the closing stitching instead of the BS, and have decent scars , one is higher than the other but they are ok.. a few small poofs on side of chest under arm where nodes were removed but all in all looks ok

Anyway , they also removed 29 nodes on right side 3 were positive

I then did 28 rads. Had 3 week interuption due to hurricane Which I finished Oct 6

That said, I am fine with my decision, I use lightweight poofy inserts in cooby bras for now as After radiation my chest is still tender.. but really no one would know I dont have breasts ...fortunately my husband was on board , I do however keep my bra on in intimate moments and it works fine

More surgeries were not what I wanted, I was told with radiation I would have to wait at least 6 mo after radiation to do a recon surgery , meaning keeping expanders in all the while, which would be a year before having anything done

Also would need my own tissue placed on radiated side to heal tissue first... just wasnt in the cards for me

This past year has been traumatic enough with out further pain for cosmetic reasons

All in all the recovery from surgery was not bad most of my discomfort was from lymph removal , I had drains in 2 weeks after

I have gone to physical therapy for my right arm range of motion and cording in arm from scar tissue all from nodes.. I still have numbness under my arm and my arm still aches , but its all doable.

I now am taking arimidex which is causing other issues but that is bone issues and my ribs and joints ache this from the medication so unfortunately its an ongoing process with new decisions on how to deal with various new side effects from radiation and AL meds

Best of luck to you its all very personal and everyones story is different

leapfrog! Let us know how yoir new prosthtics work out and what you chose, Im still trying to find a happy medium between the poofy fluff and heavy silicone

😊 Thanks

Leapfrog, I do the same. I don't even use "real" prosthetics. I use silicone bra liners, intended to boost and existing breast. In front of the liner, I put a shield, like the ones that come with the coobie bras. It gives a tiny bump, but it is plenty to make jackets hang right etc. It is also light, easy and cheap. Because I can't wear regular bras (the band sets off lymphedema in my trunk), I use yoga tops that have a double layer in the front, cut a slit to put in the filler and I am done.

thanks leapfrog! I will investigate the info!

I wear the coobie bras and really like them

they make a nice cami as well

Castigame....what a sensible idea! Thanks for sharing that. I'll be doing that in future as I have a lot of tumours and stress fractures in my ribs and tumours in my sternum, plus my sternum area is still very tender from the severed nerves. As it is, I find the seat belt painful. I can't believe I didn't think of that so thank you so much. I have a small cushion (in a plastic bag) under each foot so that I can brace myself against them, a cushion at my lower back and another at my shoulder blades, plus a neck guard when I'm in the car. It takes a while to get me in and organised but the trip to my cancer centre is quite long and plays havoc with the tumours in my spine. This way I'm quite comfortable but, with your idea, it will also be safer. At the risk of being repetitive, I can't thank you enough.

Momine....that's a good idea. I have tried some of those things they call chicken fillets but they don't work for me. I bet we could all have a prostheses site on Ebay and do quite well out of it. I'm getting quite a collection but it's all trial and error.

wow girl you need some R and R!!!

Momine.....your chicken fillets sound a lot better than the ones I tried but I'm going well with my coobie bra and I think the prostheses I put in sound more like your chicken fillets. Mine are, I think, only for ladies with small breasts who want to wear a push up bra and give themselves a cleavage. I was given an education in this by my son's ex-girlfriend. She had really sexy looking bras which were thickly padded in the lower half of the cup and she used a chicken fillet in there as well! I don't know if this is interesting to you but I was fascinated when I washed them and hung them on an airer for her!! I'd never seen anything like it but it's been useful to me to know about this now.

Castigame....I second MamaOz. That's a LOT of surgery xxxxx

MamaOz don't forget I might have some good news for you on that front (excuse the pun...haha...weak, I know!) when my husband and son get back from your country in two weeks. My current chicken fillet things don't fill up the whole cup on the coobies so I have to hope nothing causes it to get a dent in it!

I tried putting my heavy silicone prostheses in the coobie today just to see but it was uncomfortable and, like you, I don't think coobies are strong enough to hold the weight. I can just imagine myself trotting happily around and hearing a thud, looking down and seeing a pink silicone lump on the floor!

MamaOz....glad you're like me and not taking it all too seriously! When I want to impress someone I wear my Amoeba bra (I forget the model) with the prostheses that are the size I used to be. Actually it's not so much about impressing anyone because, for myself and my husband, we don't care. I tend to just wear the good ones when I'm seeing someone who might be embarrassed by my flatness. The coobie and chicken fillet combination, as you say, just gives enough to help clothes sit more the way they should.

Actually, on a serious note, I think I learnt this from Erica. The silicone ones needn't be so heavy. My mobile prosthetic bra lady who came to the house to fit me was lovely but she had me completely convinced they need to be so heavy because breasts weigh that much. I found that hard to believe for one thing (or two!) but, on further reading I've figured out that that's fine for ladies who have had a unilateral mastectomy so that they don't feel lopsided and unbalanced but if you've had a bilateral mastectomy who's to say we need to cart all that weight around?? My poor bones can certainly do without anything more to carry than they need to so I think she was wrong there.

Glad you got a laugh out of my weird imagination. If you lived inside my head you'd go nuts!

leapfrog- my bra fitter actually told me that I was lucky I had a double mastectomy- now I wouldn’t be lopsided! I think I would have preferred to skip massive cancer and 24 positive lymph nodes in that other breast and been lopsided!

You can get lighter silicone- also silicone that sags a little when you lie down i think. I look totally perky in yoga class! I wanted them to feel normalish when being hugged as a criteria. Luckily there are lots of options. - sounds like you are figuring it out well. My favorites have changed over time.

MamaOz.....I was diagnosed de novo Stage IV with bone mets. I had a massive tumour in my right breast which didn't show on mammograms and must have been growing for at least 6 to 8 years from calcifications that were reported at my first ever mammogram. I saw a BS at that time and she made the call that they would remain benign and put me down for normal, two yearly mammograms, without reporting to the mammogram clinic that I was at risk. There were absolutely no symptoms all those years except that I was getting sicker and sicker. I saw physicians and one after another said my tests all showed up as normal, there was nothing wrong with me and I needed anti depressants. I knew I was physically ill and not depressed so I refused them,at which they all washed their hands of me. I gave up on doctors and tried to get well by lifestyle means. I'd always had a healthy lifestyle anyway but I was sure I could get well if I really tried but no,.....by 2016 I was so ill I couldn't get out of bed and I was fading away; I knew it but couldn't convince anyone. Then suddenly my left breast changed shape and there was an obvious tumour in it. I knew I had cancer then so I had a CA15.3 blood test which came back as metastatic breast cancer. I was shocked. I expected cancer but not metastatic. The next day I went for investigations and found there was a 10cm tumour in the right breast. Both were primary tumours, which is apparently unusual; the left one wasn't a met. I had a BMX the following week, followed by a CT and a bone scan. The CT came back reporting that my organs were clear but the bone scan showed that my entire torso was completely involved with tumours. At the operation 29 out of 29 lymph nodes removed were cancerous. That's my story! So far the Letrozole/Ibrance combination is holding it. In the nine months since I started on Ibrance there has been no progression but no regression. I'm an optimist. I believe every month that my TM will go down but I don't get anxious about it because I know this treatment is slow acting.

Nkb...I can understand why you feel that way. You'll see by my story above that I had no choice but BMX immediately as the tumour in the right breast grew larger in the ten days between dx and operation! By that time I could feel it but before that I couldn't differentiate it from the normal tissue, not that there was much tissue not involved with cancer! Even if I hadn't had the 2cm tumour in the left breast I would have had BMX to be on the safe side. I had pain in my back for the six months previous to dx but put it down to a bad flu and pleurisy that I couldn't recover from. Of course, once diagnosed, I knew why.

Luckynumber.....it's crazy, isn't it? I've started wearing my coobie bra all the times that I don't go flat and it's a size A cup so hardly noticeable. It just sort of lifts my clothes so they fit a bit better. I'm small built so my clothes were hanging on me without it but I used to be a 34B which was quite a good size for my small body so I guess my own breasts were "negotiators" hahaha. Men are so easy to manipulate! My husband doesn't care and neither do I; we just want as long a life as I can get! It's strange; when I was younger I would have been devastated to have been told I needed a BMX but when I was diagnosed I told the surgeon that's what I wanted. It was his number one plan anyway. On the humorous side, I tried stuffing a chicken fillet and a push up prosthetic for under-endowed ladies into my coobie and the chicken fillet popped out of the top when I moved! Imagine sitting down to dinner with some posh friends and having your chicken fillet land on your plate! Or, worse still, on someone else's!!! My imagination runs wild when I think about all this stuff hahaha.

Nkb.... that was a tough gig too. I wish I had had a little voice that told me about BC. My little voice told me I was very sick but didn't give me any details....highly inconsiderate of it, I thought.

I've just bought some lovely lace coobie bras (my computer is certain I want to say "cookie"...you'd think it would have got the message by now!) from Zulilly on Facebook for $15 US so I stocked up. We might as well have something beautiful, I think.

After my operation I told my BS I'd decided to get Dolly Parton sized prostheses haha but, on reflection, thought it might look a bit weird unless I bought a wig with blonde, "big" hair as well!

I love NZ. If I could have one wish granted it would be to tour NZ in a luxury camper van. We were there for six weeks, working, in the early 1990s and I loved it. Perth, where I live, is pretty, mainly because of the beaches and the river but it's very dry in summer.

Better go. I love talking to you girls but I need a nap. I couldn't sleep well last night. My husband and son are on their way to your country, a conference near Washington. Getting my hair done today, with fresh foils and layered up again so it will look thicker, which will cheer me up. Yay!

Have a good day/night? It's almost 1pm here.

Mama....I try very hard to believe in doctors and trust them but sometimes they make it difficult! The MO I was assigned to on the Ibrance/Letrozole Australia and SE Asia trial is wonderful so that's a relief. He's Indian and trained in the UK. I don't think he's been in Oz for very long and he's very experienced, kind and compassionate. I think he worries more about my pain than I do! And I agree that once you're experiencing weight loss and persistent pain it means you should have been scanned some time before that. That's what was happening to me before I was diagnosed.