Looking for your long term issues w bmx without recon
Comments
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MamaOz, the tamoxifen that I took initially had side effects and foisted surgeries on me I would otherwise possibly have avoided (uterine polyps, biopsies, ultrasounds, blah, blah). Both the tamoxifen and the arimidex caused a great deal of weight gain for me. I started out a BMI of 19, so it was dramatically felt on my small frame. Joint pain, achilles heal pain was so painful, it took 5 minutes to stretch things out when I got out of bed. Memory fog, joint pain, weight gain, vaginal atrophy, on and on....
Lisey, that was the first thing my husband said ...you look so much younger and less matronly! Nice to have some positives to offset the losses. For me, the money I am saving not buying bras, never mind the pain of schlepping around D cups with nasty bras to hold them up....again, priceless! I know a lot of gals enjoy buying pretty lingerie, but buying bras to hold up big breasts is physics not pretty lingerie
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I think I had the bolus for 5 treatments at the end.
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MamaOz, I had the bolus every time, except for the last 5 which were called "boosts". It felt cold when they put it on. Other than that, not unpleasant. I didn't burn under it, only a little at the very end under the armpit.
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jennie, thanks for responding! 5 down today 23 to go
I see you were or are on arimidex , i think my mo will have me start with anastrazole which is generic arimidex
How are you fairing with it?? Im very nervous about it
Mama
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Yes, I am on the evil little white pill. Cannot lie, it sucks. But it cuts the risk of recurrence in half. And it's better than tamoxifen. Some people sail right through with no problems, you just never know. So, give it a go, think positive, you may be one of the lucky ones. If you do have trouble, there are plenty of folks on here with good suggestions.
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I was 38 at diagnosis, and I had 6 days to decide between lumpectomy and mastectomy. I chose mastectomy because I would have had to have radiation with lumpectomy. And, of course, I wanted to be rid of the cancer!! I asked the surgeon to just remove both breasts, but he advised against it. So, I listened to him. Then 2 years later I opted to have the other breast removed. I did NOT enjoy having one breast!!! I have not had any problems. To me it feels free to have a flat chest. (I was a D cup). I didn't like people's eyes wandering to my flat chest, and I found the prosthetic breasts uncomfortable and a hassle to wear, so I made my own little stuffed bras--about an A cup size and am fine wearing that. Occasionally I wishI had breasts--to try on a shirt and have it look and fit normally. BUT I think this was the best choice for me It's been 7 years
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crazy B i also just make my own little A size pillow stuffing inserts and the coobie bras have a wide band on bottom holds in place ok , I too am ok with no recon
Day 6 rads done.
Thanks jennie for your honesty , just what I had previously read...
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I'm scheduled for a bilateral mastectomy in a few weeks and I was just wondering how supportive or not, your significant others were. How did it affect your relationships, if at all?
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I had a bilateral mastectomy without reconstruction in 2013 after two relapses, breast cancer in both breast with two different cancer cell types, ductal & lobular. Recovered quickly in two weeks. Happy with no recon & no long term medical side effects, no further progression of disease at this time. Missed my breasts for along time (still do a little) but feel very blessed to be a breast cancer survivor since 1999. My husband was great and supportive, celebrated 38 years of marriage & first grand baby in the past year. Wishing all my fellow sisters well. Hugs. Cloudy
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Bosom, my husband, now dead, was unfazed by the boobectomy and completely supported my decision not to reconstruct. Being single is a whole other can of worms though.
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My Husband was totally supportive. Losing your feeling / nipples is one less tool in the bedroom, so that is sad.. but having lumps I can't feel in the front of my chest would do nothing for him anyway - so he's totally fine with me being flat. He compliments my new shape all the time.
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Gardenwalker, Momine, Lisey,
Thank-you for sharing your experiences on this matter --- it's encouraging to know that relationships don't necessarily fall apart after something like this. But if it does, so what? I'd rather be alive than dead with toxic boobs. ;0)
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Bosom, My husband actually said after the surgery "Good thing I'm an ass man!"... (I think he was a boob guy before all this). Love that man. Men who love you will not give a flying F about whether you have numb mounds or are flat. They will shift their focus to other areas to admire.
As an aside - more than my husband actually mentioned being ass men to me after all this. I'd get private messages from old boyfriends on facebook about how boobs don't really matter. (I was very open about my journey to being flat). -
My wife said, "I like your breasts, but fortunately I'm bi!"
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I had BMX last November and my husband has been great! I used to have really nice boobs but once cancer got hold of them they weren't so pretty. As the scars began to heal and once the drains were removed, one day when my husband was helping me in the shower, he said,"I think you look good without boobs, they'd got sick looking and they were going to kill you if you kept them. This way you look healthy." This was a tiny beginning for me to hold on to as I became accustomed to my different body and now, ten months later, I actually quite like it. I have a very slight build anyway and I'm not ashamed for people to see me flat. If I really want to I can wear my prosthesis bra. I'm happy! For those wondering about post op issues I'll be honest....it is a BIG operation, the drains have to be carried around with you everywhere until they're removed, I could only sleep on my back, unable to turn over or even move once my husband helped me to lie down and I needed him to sit me up, take me to the loo or wherever else in the house I needed to go and take me back to bed for several weeks, I had a lot of pain as I react badly to pain killers and only took the minimum. It's only now, ten months later, that I can sleep on my side. You do have to keep up the exercises the physiotherapist shows you in hospital, you do have to massage the inside of your arms in an upward direction to encourage drainage and avoid lymphodoema, it can take a long time before you can lift your arms above your head and it's possible you'll never regain complete movement (I haven't), there can be nerve damage - I had 29 nodes removed on the right side so that was BIG! and I still haven't regained feeling in my right arm but it doesn't worry me, I avoided lymphodoema so I'm happy! Hope this helps and doesn't scare you....sure, this is what it was like for me in the beginning but I'm in a good place now.
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I had separate mastectomies. My first created bad pain down my arm for a year and a half. Plus I have mild lymphedema now. The second time I opted for sentinel node biopsy and mastectomy.....no arm issues. I still get itching around scars now and then. I chose not to get reconstruction because I was afraid of re-visiting the arm pain......so I let sleeping dogs sleep. I have complete movement of my arms back.....some numbness of course in the arm pit and back, but all in all, doing ok. I bought mastectomy bras on Amazon and the large sized silicone inserts from Walmart.....lol....they work. I also have a pair of knitted knockers too. I found some nice bras with thin inserts in them at Walmart...cheap but pretty but had to sew the front up to keep the implants from gathering into one huge boob in the front...which it did when I bent over...lol. Anyway, Leapfrog, it takes time for nerves to heal, sometimes years.....it was the only thought that kept me sane that first go when my arm felt like a constant sunburn being rubbed. It was awful. Thankful now.
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Leapfrog, your husband is a gem! I'm sorry to hear it took you so long to finally be able to sleep on your side. I have trouble sleeping on my back so I'll probably sleep for the first few weeks on a recliner. Fun times ahead!
I've been looking at pictures of flat chested women on the internet and there are many! Kiera Knightly is a famous flat chested woman--granted she never underwent a double mastectomy but she's still flat. Actually, there is one woman down the street from where I live and she had a bilateral mastectomy with no reconstruction. She is very active and athletic and I always see her jogging by. She is such a beautiful lady! She is very lean and has the body of a dancer.
My surgery is in two weeks. I've ordered two compression garments from Amazon and hopefully it'll arrive before my surgery date. I was surprised to hear from my B.S. that most women (90%???!) are released the same day? A day surgery...hmmmmm. Since I had the sentinel node biopsy for the lumpectomy, my B.S. said he won't be removing any further lymph nodes. I had three removed the first time around and most of my pain was from those tiny things.
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leapfrog
Wow hope you are doing well on the ibrance..
I had 3/29 nodes had bmx and Im ok with it. Chemo prior to surgery Doing radiation now. Then will go on aromatase
Your husband sounds like a winner lucky girl
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Bosombuddy
You will be fine! I had my double in may .. It looks a bit odd and slight lumps but really more relief to have the cancer removed. At 63 I really didnt want to risk more surgeries and complications ...
I have been going to phys therapy to help with range of motion in my right arm .. after your surgery you cant lift things but make sure you move your arms! I made mistake of being afraid to stretch my arms as my BS said only brush my teeth with right arm /29 nodes removed
I stiffened up and had a lot of cords that needed to be worked out.. but Its much better now and my arms are coming around. Im doing radiation now
I use these small inserts I got from tlc that you can remove stuffing ..to what size you want then put a thin bra insert in front of that And it works well and is very light. The coobie bras are nice as they have a wide bottom band that holds in place so it doesnt ride up. I got some cheap silicone inserts that i only wear in a fancy black bra for intimate moments with hubby, but they are too heavy for everyday use ..
All in all I am ok with being flat the inserts are minimal A size just so my clothes fit better
Wishing you the bes
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Bosombuddy1, I should tell you that the reason for all my pain, immobility and having to sleep on my back is that I have extensive mets to the bones. It's my bones that gave me trouble, much more so than the BMX so you most likely won't have problems with sleeping.
Good luck with your surgery if I don't see you on this thread before it. Sending a big, flat chested hug haha. Seriously.....wishing you the very best xxx
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Leapfrog,
I got all teary reading your post. This crappy disease is so unfair! I'm sending you virtual hugs today and hoping your meds kick the bone mets into remission.
I recently came across a blog about a woman with brain mets and she of course has done conventional treatment but has added beta glucan to the mix. She's been NED for 10 years. I'll try to find the website.
I'll probably be out of commission for few days after surgery-- or maybe not. You'll probably see me posting in the recovery area.
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I never had a consult with a PS, just immediate BMX from a general surgeon; rushed and didn't know my options. Used protheses for 8 years (no recurrence). Finally had SGAP recon (I am slender) in NOLA ; incredible. If I would have had the knowledge at the time, looking back what would I have done? Without question, bilateral mastectomy with immediate bilateral SGAP reconstruction at NOLA, (Center for Restorative Breast Surgery). It gives you back your body and you won't need to change out implants. Going flat/using protheses is tremendously limiting socially, psychologically and (don't laugh) sartorially.
Good luck on your journey.
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Welcome to BCO!
Going flat/using protheses is tremendously limiting socially, psychologically and (don't laugh) sartorially.
For you, not for me. Please don't make blanket generalizations, especially negative ones. I'm very pleased that you've found something that works for you, but this thread is for BMX without recon, which isn't what you wound up doing. I'm happy to hear about your experience, but when you overgeneralize, I feel like I need to say that you're not posting for everyone here, or in the spirit of this thread. I have no problem with I found going flat/using protheses is tremendously limiting socially, psychologically and (don't laugh) sartorially. -
Wow Lacey, I can't believe what a stereotype you just said. Going flat is Amazing for me... and frankly, I think I look better than I did before with huge DD boobs. I totally have my body and feel 100% like 'me'. There are a ton of pros to going flat for many of us and a ton of cons and risks to reconstruction.. I'm young and think I am rocking being flat.
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yes lisey you look great! And I agree this thread is for those of us who have chosen no recon..
its only been 4 months since my surgery and im wrapping up radiation this week.. but so far I am ok with it
Looking forward to finally healing and getting theses stickers and markerswashed off!!😊
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Lisey you look fabulous!! I love that top. I find tops like that are very flattering and going flat is very liberating. We haven't had summer yet in Australia since I had my BMX last November.....well, we have but I was semi conscious for most of last summer and unable to appreciate the joys of not needing a bra. Looking forward to wearing some lovely tops I bought that have gathered yokes, pin tucks and frilly neck lines this year.
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And re Lacey9's post. Reconstruction might be important for your body image but it isn't for mine. We're all different with different views, different lifestyles and different prognoses. Please try to avoid generalising...I'm pleased that you've found what suits you but it's the last thing I would even consider doing. I'm Stage IV with extensive mets to bones and even the thought of having my body pushed and pulled around would be irresponsible for the sake of vanity. Added to that is that I have Grade 4 neutropenia because of Ibrance treatment so infection would be a certainty. Lacey9 your post is on the wrong thread, sorry.
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I had BMX and radiation 5 years ago- not much choice in either given my extensive cancer. also 50 nodes removed (25 each side) most had cancer. I had read some place that women who had reconstruction had better self esteem- so I thought OK- going to do reconstruction. The BMX and axilla node resection was big surgery! Drains, lack of range of motion -pain, numbness, fear. The radiation makes reconstruction outcome much harder. When I mentioned to my MO that I wanted to do reconstruction: He just said "it's a lot of surgery".
My insurance pays for the mastectomy bras and for the silicone inserts- I could be any size I wanted to be now. I use the soft bras with the inserts- I feel more private (I didn't tell most people about the cancer) and my clothes fit better and I am very grateful that my MO was quietly telling me that QOL is important -did I want to spend any more time getting and recovering from surgery for a questionable cosmetic outcome --no, I sure didn't. Hubby definitely left it up to me- I used to miss boobs-less so now-
Hi Leapfrog-
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Thanks for the "welcome to BCO". Thought I was just answering Epicsquirrel's question directly about what my experience was having no recon for many years (what it was like). Sorry I didn't know that this isn't how the Q&A works. Other people see the questions, but they don't just answer the question, they can instead comment about other member's answers. Could even be if they approve of those answers or not. I like your avatar. It seems appropriate.
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I had a lumpectomy almost 2 years ago and in Oct 2016 I decided I would be more comfortable with a BMX. I went ahead even though my oncologist insisted I didn't need it...I DID need it...for ME! I did not have any problems but I agree, the drains are a pain. My surgeon left dog ears on both sides and in the middle. I ended up finding a plastic surgeon in June of this year and he did an awesome job. I have one huge scar from under my shoulder blade all the way around the front to the other shoulder blade. But I'm now flat and look alot better than I did before. And more importantly, I FEEL better. My only regret is that I didn't think to go to the plastic surgeon first and maybe I would not have had to go through 2 surgeries.
I'm a bigger person and I need to lose weight. My belly shows alot more with being flat and I'm having a very difficult time getting this taken care of.
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