Looking for your long term issues w bmx without recon
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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.
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Thanks McCusker I'll file that info away in the back of my mind should the occasion arise. It's always good to be pre-warned.
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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
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There are a couple of similarities in MamaOz's story and mine, except I was put straight onto hormonal therapy and targeted therapy...no chemo or rads...because my cancer was so highly hormone receptor positive and I was diagnosed Stage IV de novo with bone mets. Hormonal and targeted therapies are slow to work so you can't expect overnight miracles.
I knew as soon as I received my diagnosis that I would have BMX without reconstruction at any stage. For one thing I was too ill to have a longer operation than necessary and for another I had always said that if ever I had life threatening breast cancer, my only priority would be to preserve my life for as long as possible but my main reason was that I don't want anything that might hide a recurrence. I'm in my late 60s so, really, I'm not overly concerned about being flat and my husband is perfectly fine about it.
I did cry a lot in the ten days between diagnosis and surgery but then I dried my tears and got on with it. I also have some little puffy things under my arms and cording in my armpit. Actually, I don't have a right armpit, just a deep indentation and the cording because I had 29 nodes removed and all were cancerous. Like MamaOz, that's where most of my pain was focussed. My BS did quite a good job with my scars, although at first I didn't think so; however one year later and they have settled quite a lot. There's no way I'm going to put myself through another operation for vanity reasons either but of course, that's just my personal decision. I quite understand that most younger women would find it very traumatic to go flat.
I spent a lot of effort massaging the inside of my right arm in an upward direction to encourage fluid drainage to find new channels because I have no lymph nodes to drain the fluid away so I was fortunate and avoided lymphodoema. I had three drains; one was removed when I left hospital 3 days after surgery, another two weeks later and the last one was in for three weeks. I had to have aspiration of the site about 8 times and about 75mls of fluid was drawn out.
I didn't have a lot of pain from the actual breast surgery but the lymph node removal felt as though I'd been scraped with a spade! The pain I had was from my bone mets and that was horrific and made it difficult to carry out the exercises the physiotherapist had taught me in hospital but I did my best and now, a year later, through persevering gently, I have full range of movement in my arms again. It has taken a lot of time and patience, though, so for anyone new to this, that's my main advice. Don't expect too much too soon and don't push yourself too hard. I've always been very conscientious and hard on myself but in this situation I couldn't do any better than I did and, to my surprise, I haven't needed to. My right arm and part of my right chest is still numb but it's not a problem for me; in fact, it was great that the whole area was numb because the nerves were severed at operation because the needle used for aspiration didn't hurt!
I've tried wearing an Amoeba bra with silicone prostheses that I bought in Australia because we don't have a large selection here, as far as I could tell. I had to buy online and had a mobile bra fitter come to the house but I find it very heavy to wear and it's painful on the puffy bits under my arms. I asked around on various threads on these discussion boards and discovered coobie bras which, like MamaOz, I find comfortable and kind to the scars under my arms. I put lightweight prostheses in the pocket and, although these are smaller than I used to be (I have a small frame but took C cup bra), they give me some shape. I'm quite excited because I was given advice by Erica on another thread. Erica has a website and knows a lot about prostheses and guided me about prostheses. I've found that the US has a terrific range and, because my husband and son are visiting Washington next week on business, I've arranged to stock up and arranged to have them sent to their hotel. I'm very impressed with American websites' efficiency in general because of their helpfulness. They guided me on whether the prostheses run true to size and a range of other issues I was concerned about.
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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
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MamaOz....I'll certainly do that. I won't know until December but I'll make sure I do that.
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😊 Thanks
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MamaOz....so you can do some googling I've chosen from Mastectomy shop.com Trulife 616 Featherweight Breast Forms and Trulife 611 Tri-Leisure Mastectomy Forms on Erica's recommendation. The Tri-Leisure form apparently has a small amount of weight in it while the Featherweight lives up to its name. I've chosen from Still You.com the Illusion Breast Form 2900B and Illusion Tri-Form. Also the Alise Tank Top which has pockets for the prostheses and the Post Surgery Tank Top which also has pockets because several people have said they're great to wear instead of a bra a lot of the time.
I've stocked up quite a bit because this is an opportunity too good to miss. These companies don't ship to Australia but they have shipped the parcels to the hotel my husband and son will be staying at next week.
It just occurred to me that it might be useful for you to have a look at the websites and when I get them I'll let you know what I think. Meanwhile I'm wearing a little coobie bra with light silicone prostheses in it. It's only an A cup size and I was a C cup size even though I'm small but it's enough to make clothes fit a bit better around the neckline and just give me a little bit of shape. I bought the silicone prostheses from Yours Truly Lingerie.com and they're very light. I really like the coobie bra because it doesn't cut into those puffy, sore scars under my arms. At first I thought it looked as though it would come up too high but it's quite ok really.
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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.
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I am happy to be flat since Feb '17. No bra no foobs. One drawback about no recon is in case of car accidents, I am more prone to rib fractures. I have made multiple pillows in varying sizes since BC dx. I keep a couple in my car as well as hubbys car. Before any car engine I get in starts, I put one of my pillows between seat belt and my chest.
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thanks leapfrog! I will investigate the info!
I wear the coobie bras and really like them
they make a nice cami as well
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good idea mimi on the pillows!
How did your latestsurgery go?
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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.
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thank ladies.
Mamaoz,
I just had surgery #7 for this year.- Biospy, port implant, explant, BMX w nodes removal, elbow lump removal, colonoscopy w endoscopy and total hyst. So far no issue. Done and nothing more to be done for the next 40 yrs!!
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wow girl you need some R and R!!!
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Leapfrog, I know what you mean by so-called chicken fillets. The ones I found are meant to add a fairly thick silicone layer through the whole bra cup, if that makes sense. Like a large, thick bra shield, only made of silicone.
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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
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leapfrog , so cute on the bra thing .. I use the coobies as well .. my chest is still tender from rads 4 weeks out , so by end of day I need to wear nothing.. still havent found the perfect insert
I currently use tlc pads that have an open back and u can stuff or remove the fluff as desired. I got some micro beads and have yet to try them in one to see how that works. The silicone foobs I got #2 are still a bit heavy but look and feel better .. but Ill need a sturdier bra to hold them in place. So the on going search.
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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!
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oh leapfrog !! You made my day!! I got a real chuckle over your visions of foobs on the floor!!
And yes those things need sturdy bras! I found the aomena ( karla) bra works ok. But Ive decided to just use those silicone things (with the above mentioned bra )with my husband as we are finding the whole process hilarious...
For Everyday the light stuff is fine. Just the illusion.. so my clothes look ok
Let me know how you like your new suff when you get it!!
Again thanks for the laugh😊
Mamaoz
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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!
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Leapfrog I see yours became bone mets.. was that initially or after first dx? All too scary. How are you doing ? Is the Ibrance making a difference.. some of these new drugs are amazing
Mamao
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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.
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I have a story along the lines of Leapfrog's pink silicone lump on the floor - years ago I used to play bunco and we gave a "boobie" prize to the person with the fewest wins. I was having a particularly bad night, couldn't win a thing, sure to get the boobie. Then I won a game and said "Oh, no, I think I lost my boobie". The girl playing next to me instantly dove down under the table, hunting around. What the heck? She said her cousin had BC and was always losing her prosthetic. We laughed all night over that one.
A friend told me she used the adhesive type of prosthetics when she went swimming and apparently the adhesive doesn't work when wet because she saw her prosthetic go floating by. How mortifying and funny at the same time.
I've named a couple of my prosthetics. My chicken fillets are my "As seen on tv" boobs because they came from Genie Bras - As seen on TV. My big size 8s are my "negotiators". I wear them when I'm trying to get a good price from tradesmen. Probably never helped but itgives my DH and me a good laugh and we gotta laugh about all this craziness.
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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.
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leap- I had no choice either -I had bilateral multiple > 6 cm lesions and 24/25 nodes on one side and 12/24 nodes on the other. None ever showed up on mammogram or ultrasound and even surgeon said you’re fine, it’s just a cyst. We want to hear that we are fine, but , deep inside know that we are not. That is the voice to listen to. ILC is often bilateral and far progressed when found since it is so hard to find. Even MRI with contrast missed a bunch of it.
I’m glad that you are doing better- I have a drawer full of bras and inserts by now. All the same size- i didn’t think of getting some negotiators! Have a lovely day. i was in Australia and New Zealand in 2015- lovely countries.
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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.
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leap , wow on your story...
Drs just amaze me sometimes... on my last appt with MO she said Im good All clear.. I said how do you know? I havent been scanned since before surgery in May?
She insisted my margins were good etc and they dont like to scan after radiation.. So I asked what I should look for
Pain that persists , weight loss, etc. well Im sorry but I think that when those things occur its late in the game!!!
And with the bone and joint pain from arimidex how can you tell??
Nkb ...I see yours progressed after 5 years and were on arimidex! .. did you have symptoms?
Well for now Ill try my best to keep positive..I have the coobies with the lace backs , love them
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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.
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mama- from my stats they didn’t think i would last 2 years. I felt worried for a long time. The arimidex is hard on the joints and i managed it with Motrin at night and yoga. It gets much better. Getting past the 2 year mark in Breast cancer is the important stat. Anyway- about 9 months ago started to have exercise intolerance. Short of breath walking up hills. I was in denial- but, finally got a blood test and it Showed profound anemia and a few other abnormalities. My MO said I’m worried let’s just cut to the chase and do a bone marrow biopsy and it showed I had breast cancer in the marrow and then the PET showed all bones involved and the TMs were off the charts. Almost all the Mets are gone for now and I feel so much better.
The reason given did not doing endless scans and blood tests to catch it when it first recurs is that statistically it makes no difference in survival and it makes the person feel like a patient all the time and worried all the time. These are important concepts that i don’t think most people understand.
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