double mastectomy
I had a lumpectomy in march 2006, now I have a recurring "lump" above my scar. The doc says it's a recurrence of the seroma I had 6 months ago but now has got more tissue than fluid in it so cannot be aspirated. He believes it is "benign." but how can anyone know until they cut. I have decided to have a total double mastectomy without any reconstruction surgeries. Even if it's not cancer, I want to be free of the fear, not to mention that if they do another lumpectomy I will be left with about a fourth of a breast on that side. At age 68, breasts just aren't so important and my husband supports my decision. I'm just wondering if anyone in my age group has made a similar decision and how they have fared. All input is welcome.
Comments
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Hi Lilac.
I had a double mast. I wanted it, I didn't want to be bothered with a lump here, a lump there, always operations....I was lucky really that my surgeon listened to me, and agreed to do it.
I didn't find it was too big an operation. I was 'out' about 4 hours, and was very suprised to have not much pain at all, just discomfort. I was in hospital just under 4 days. They did want to keep me another day, but I was nattering at them to let me get back to my own bed. I think its a much shorter stay now. I woke up with a morphine pump, which I was told I wasn't using enough ! and 2 drains, which were really uncomfortable, much more so than the mast.
I didn't want to go for further op. to reconstruct, if I'd been 10/15 years younger I would have done. I didn't think it would bother me at all, and it doesn't bother ME, its just I feel so uncomfortable if I get caught out and someone calls unexpectedly ! I must admit I do keep my doors, and my gates locked, so no-one can creep up on me .(I told very few people about it all, just near relatives, and 2 good friends, who were sworn to secrecy.)
I wear prosthetics when I go out, I hate the damned things, they make me look normal, but also make me sweat when its warm. I can't wait to get under the shower when I have been out anywhere, its the first thing I do when I get in ! Never mind the frozen food thawing in the car, just let me get in the shower !!
One thing no-one told me was to take a laxative, the anaesthetics bung you up like concrete, I had about 5/6 very uncomfortable days with that problem, just for the sake of taking something.
I don't think, at our age, its as upsetting as for the younger women, we have been thru a lot of knocks, and seem to be more accepting. I would go this route again if I were back to square 1, although there are a few who regret the mastectomy. I would certainly NOT have a single mast., I really needed to be even ! I can pop on a T shirt when I am at home, or in my garden, and not have to wear a prosthetic to even me up !
Good luck with your op. When is it planned ?
Isabella.
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I'm 61 and found the bilateral mastectomy to be devastating. Age isn't the issue.
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Hi Lilac (my favorite flower), Like you are planning to do, I had a double mastectomy for the same reasons. I had ILC in one breast; the tumor was large (4 cm) so a lumpectomy would have left nothing of the breast--I had very small breasts. I learned that ILC can travel to the other breast, although it's not common. I did not want to deal with getting mammograms and ultrasounds every six months and living in fear. I also did not want reconstruction because I didn't want any more surgery. I was 65 at the time. I am fine with no breasts, but no matter what, you can't deny the trauma of mastectomies. However, I would do it again. Good luck to you.
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Hi helen.
Welcome, come and join us. There are loads of very good informative topics here to learn from, and also a very interesting forum for more 'seasoned' girls, like us, just to natter and try to forget bc.
Don't be afraid to ask about ANYTHING, there is always someone who will listen and try and help out with your question.
Isabella.
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Thanks for the welcome, Isabella. I'm coming up on five years (in Janauary) since my ILC.
Helen
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I am 66 yrs old and a 4 yr. survivor of interductal cancer in both breasts. I had a bilateral. I was very lucky... both sides were Stage 1 and I required no chemo or radiation. Just take my Aromasin everyday. BUT, my implants are awful...hard, uncomfortable, ugly, misshapen and lots of scar tissue! And, in winter, I have 2 icebergs on my chest while, in summer, I have 2 heaters. I HATE them!!
I saw a surgeon yesterday about removing them. We discussed my options. Replacing the current implants is not one as, if it didn't work the first time, why try again? Next, DIEP. I had been told that, being diabetic, that was not an option. This surgeon feels that as my sugar is controlled it is a doable thing. Next, go flat. After talking with him for a long while and with lots of questions, my first decision was, "Go for it!!" Now this morning my decision was to go flat. My husband says what ever way I want to go is okay with him. He wants me happy and comfortable.
My concern is being on the operating table for 8-10 hours and the recovery. I'm diabetic, have controlled high blood pressure and a family history of heart disease. Anybody out there been in my shoes? How crazy would it be to go for A cups? What are the fake ones like to wear? Any physical problems from going flat? I have a day or two more to decide if I want to get this done in Jan. Are the prosethics that uncomfortable? I wouldn't probably wear them all that much. I have not had a bra on since June 24, 2005. (Yes, I remember the exact date. I let the "girls" have a few days of freedom before being lopped off!) I like this surgeon, by the way! I've been to several...2 in CA and now this fellow here in San Antonio. (PRMA is the group name.) Any feedback will be greatly appreciated.
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Lilac, I had bilateral mastectomies in Jan with no reconstruction. Never regretted the decision and the recovery was pretty easy. Plus now I have "perky boobs" (prosthetics) that are very comfortable and I don't have sweating issues unless I am sitting on a beach with the boobs stuck into my bathing suit. I am now 62 and had to make the decision on my own. Lucky for you that you have a husband.
I stocked up on over the counter Colace (the generic) and some senokot, which is kind of like TNT. It is the pain meds along with the anesthesia that leave you constipated so I started the Colace right away (2 at night) and "all came out ok", if you get my drift.
I did have a seroma to one of the sites and had it aspirated a couple of times. I am due to see the surgeon in 2 wks and he was chatting, last May, about re doing(called a revision.....) the incision. Not sure I want any more surgery but the seroma is lumpy and I am afraid I might miss a recurrance if it should happen. My surgeon in Boston told me that the breast area would feel numb post operatively (it did) and the only discomfort would be where he took the 3 sentinel nodes, which were clear. He was right, but the pain was more a "take a tylenol" kind of pain.
Isn't your surgeon going to biopsy this before you take such a radical course? Or did I miss something here?
Good luck with your decision......Sue
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I was one month shy of 50 at dx. I had a bilateral mx and no reconstruction.
I've never regretted my decision.
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I am 61 and just had a double mastectomy on 1/5/10. I do not plan to have a revision done. My husband is supportive of this, also. I've adjusted well to being "flat chested" thus far. I really don't mind not having "boobies" underneath my clothing. The only thing I don't like (and many have mentioned this on this site) is that it makes my belly much more noticeable...no breasts to obstruct the view as I gaze down to my feet! LOL It is a personal decision and I realize that many decide to have the revision surgery. I'm waiting on my OncoType DX score to learn my treatment. I'm thinking that I will have hormonal therapy alone, but we will see. If I can encourage you in any way, please let me know. There are so many wonderful people to share with on this site. Karen (aka ThereIsHope)
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i'm 63 and was dx with cancer on left breast on12/22/08. I elected to do a double mastectomy just to avoid the thought that the right side may have to be removed at a later date. I put off reconst. until 8/09 and had a tram flap. I was very healthy, only in the hosp. for mast. overnight, and looked forward to the reconst. To make a long story shorter, I have had 12 surg. for recons., the last one being 1/9/10. It was to be my last with expander out, implant in and making both sides asymetrical. I was in the hosp for 6 days, when they went to remove the expander, that side had a very bad infection and several specialist were called in. I have decided no more. I felt so much better with just the mast.healthier, more energy, more positive. I wish I could have the left tram flap removed and not even have to worry about a prosthetic. I don't really want to influence anyone because I believe we are each unique but for me I strongly regret the reconst. and I have avoided posting anything so negitive but I do need some support. Thanks, Louella
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Louella... I am so sorry that you have gone through so very much and did not get the results you had hoped for. I agree, each person has to do what is best for them when making their decision about reconstruction. I don't know what "tram flaps" are and know very little about reconstruction options. But, I did want to say that I am glad you expressed yourself. You are not being negative. You are being honest. And, this site is specifically for supporting each one of us who needs it. It is a place where we can "be real" with one another and we shouldn't worry about whether that is viewed as negative. "It is what it is" as my husband says. Don't know if what I've said falls into the category of the support you need, but that was my intent. I hope you continue to heal and feel better. Karen
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Last week I had a good mammo of the left breast at 9 months check up following lumpectomy for DCIS with Mammosite rads, but got called back to look at new calcifications in right breast at site of 2003 IDC tumor bed (lumpectomy w/37 rads followed). Then had ADH in same breast in 2005 with lumpectomy... Took Tamoxifen & Femara till late 2008 when I had a small stroke. Then left breast 2009. Breast radiologist last week suggested I wait for 6 months & then take another look. I am 70 years young, with very dense breasts & lumpectomy in June 2009 was 100% ER+ and 75% PR+. I am opting for a bilateral mastectomy soon, rather than wait, so made an appointment with my breast surgeon for next week for hubby & I to talk about having this done with no reconstruction. Talked it over with my PCP this morning, who feels it will be a good move now while we are both fairly healthy - my husband is 72 & very robust, but who knows the future? I have diabetes & lots of related complications, but am stable right now. Had good talk with my GYN, & she believes I should do it, though emphasized it is my personal decision... Am I nuts to want this? I am so tired of the stress of mammo call-backs and waiting for biopsy reports... All of mind have started with "we need to look at some calcification clusters", so I am certain about this one... I don't even want to have a biopsy, either - I just want the mastectomies. Does anyone know if a Medicare alternative might cover this? I have no family history, I am the history! Thanks for any and all comments! Mary
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Mary.....go for it, you'll feel much easier in your mind when its over and done with.
I felt this way, was so sure about it, didn't have any history myself of scarey mammo's, etc., but had 2 near relatives with bc, and an Aunt who died from cervical ca. So, just stuck to my guns, got a totally understanding surgeon, and went ahead. No recon for me, don't like the prosthetics, but wear 'em when I go out.
Good luck.
Isabella.
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Thanks, Isabella! My surgeon was sooo understanding - his first question to me was "how many biopsies have you had on that breast?" When I told him "at least 5 or 6", and the 2 that he knew about on the left, he just said "I know you'll feel so much better to have this over with, and this is how we'll do it..." I am scheduled for the PBM June 24th, and am so ready! No recon, either - just will have lightweight - probably the bean type - prosthetics for when I need to dress up... Am going to look at some padded bras with a daughter-in-law's help - that's all she's ever worn - I have never bought them, having been a DD and then a DDD after 5 children. Might be nice just to have padded for the Y, grocery shopping, etc. Can't wait!
Hugs and prayers to all on these boards!
Mary
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Mary, let me know how you go on.
It is a pretty un-scarey op....is there such a word ?! Not a lot of pain, as its all on the 'outside' of the body, if you think about it. The most trouble to me was the 2 drains I had in I woke up with them sewn onto my skin. I was cringing at the thought of this, and the stitches pulled. Things settle down after a couple of weeks, and you can get into some soft Tshirts to wear at home.
My prosthetics are the jelly type ones, very lifelike, but they really make me sweat when its warm, so much so that all my chest is wet, and it runs down into my waistbands....no trouble at all when I'm home and in a soft T. If you get very light falsies they work their way upwards, and end up round your neck !! I will try the padded bra again. Tried it a while ago, but found as I leant forwards you could see into an empty bra, the padding went forwards with the bra, so will have to have another look into this.
WHAT we have to put up with !!!
Isabella.
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Isabella,
Thanks for all of your good tips! I am now thinking about the Silique Comfort Lite forms that I am reading about on Breastfree.org - they are new, unlike any others, and are made with a silicone gel, polyurethane beads and have a fabric backing to minimize sweating... I am thinking about those for when I have to be out in public, and after what you said about the lightweight - probably polyester forms - riding up around the neck, I think I will just go with t-shirts and no forms for my Y workouts - that's not a fashion show, as everyone is too busy doing "their own thing" to notice anybody else! Or else just a padded bra for under my t-shirt at the Y in the beginning if I find I am uncomfortable flat chested. I really don't think I will feel that way, though, because I am just so happy to be getting this nonsense over with!
Interesting that you mentioned the masts being "outside the body" - was talking with a friend at the Y the other day, telling her my surgery date has been changed to July 1st, and now my daughter,m who is a surgical nurse, can't come up for it; my friend mentioned the same thing - it is certainly not like surgery inside the body - like my hysterectomy was, any other abdominal surgery... I expect the drains will be the biggest problem, too, as I have always had very high pain tolerance - never take tylenol for anything - just busy myself and forget something that hurts! I expect my biggest problem is going to be sleeping on my back - I have already bought a wedge pillow, and am practicing with it - I have always been a tummy sleeper... I am practicing, because I am finding it hard to get up without turning over, but I have a month to work on that issue!
Thank you so much for your ideas! I know I will get along just fine! I'll keep you posted! I agree - the things we women have to go through!
((((((((hugs)))))))) Mary
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i dont see anyone saying too much about meds.after the dbl.mastectomy.i want to have it because my stomach cannot take these meds. i have many stomach issues and i feel that the meds will kill me not the breast cancer. i have insitu and 1 4mm axillary node removed.clear margins.stage 2.no family history.i am so afraid for my stomach.if i have to take meds i may as well keep the boobs.i am 69 34ddd.going 4 a 2nd.opinion on wed. everyone here seems happy to take them off.desperate to hear from anyone...xoxoxo
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I had a double mastectomy just a couple of weeks after my diagnosis 3-1/2 years ago and have not regretted it for one minute. I'm a chicken with needles and pain (not a good thing for BC and chemo) and I never wanted to go through that again. My BC was on the left side only, but I didn't want to have to face another down the road.
No reconstruction for me. I have fake ones that work fine for when I want to look like I have boobs, and I like them much better. I was very large breasted and I choose a much smaller size. Love the look. Yes, these are fakes, the real ones tried to kill me!
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My new ability confused up our discussion. I've consistently capital accouchement and looked advanced to breast-feeding. pass4sure 642-832 My mother told me belief about how acceptable it was to watch my eyes loll aback in my arch with comfort during a feeding, pass4sure 220-702 and I yearned for that aforementioned acquaintance with my child. If I adjournment childbearing, pass4sure 640-816 I'd never be able to acquaintance breast-feeding after blight looming over my shoulder.
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Hi there,
I am 73 and just had a double mastectomy (Feb 6). Turns out I am allergic to Pethedine and Morphine so pain management went off track and they kept me 6 days in hospital. But at least I got the drains out before I went home, awkward to deal with the reservoirs at home, I would have thought. I had Paget's and there was a 10% chance of it developing in the other breast. Plus it had been mis-diagnosed and I had had it for 8 months prior to diagnosis and honestly I could not IMAGINE 42 DD on one side and flat on the other. They would not keep me under long enough for reconstruction but I can do that in the future if I want - jusry is out but nt sure I want the surgery again! Just researching falsies but still too sore for a bra.
Got my post op biopsy results tonight; they found DCIS as expected but NOTHING invasive, NOTHING in the lymph nodes, NOTHING in the other breast so no further treatment indicated and I feel very very lucky. I must say, the freedom from underwire bras is bliss.
Love,
Erica
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I was initially diagnosed with invasive ductal carcinoma, stage 1, grade 3 in my right breast when I was 49 years old. After all the tests showed it had not spread to my lymph nodes or any other part of my body, my surgeon and I decided on a lumpectomy, followed by chemo and radiation. Though I looked like "Franken-boob" for years after that (one breast larger than the other), I found I could conceal this rather well by wearing a sports bra. Ten years later, I was diagnosed with "suspcious cells" in situ in my left breast. I insisted on genetic testing since my mother had died of ovarian cancer and her mother had died of breast cancer. After my DNA test results came back positive for the BRCA2 gene, I opted at 59 years old to go for a double mastectomy with no reconstruction. As you and so many others have said, at a certain age, these things don't really serve much of a purpose anymore. I'd rather be alive. [As an aside, I also saw a gynecological oncologist who agreed with me that all my reproductive organs should be removed, as well. Again, no longer serving any purpose, just waiting for something bad to happen.] I do not use any sort of prosthesis, find it very difficult even after 3 years post-op to wear any tight fitting clothing, let alone a bra. I have constant pain from the complications post-surgery, but I don't regret having it done (just wish it were done a little better).
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New here and am getting a double mastectomy August 31st. I made the decision to do this even though the lump was only on the left. I'm 72 and and not concerned about the double. Flat is fine with me and I'm not doing any reconstruction. I have awesome doctors so I'm feeling better about this compared to the meltdown I had when diagnosed. I probably won't post medical terms....too much to remember.
One question I have is anyone here working. I still work to support myself and wonder if you can work if drains are still in.
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Hi Vikisez, sorry you're here but you've found a good place. My drains were only in for a week and I would not have wanted to work that week because I was very tired. The fatigue was way more than I expected. I guess it takes a lot of energy to heal (plus, I couldn't shower until the drains were out - stinky)
Besides driving, I also couldn't open or close my car door. Big heavy doors at commercial buildings were also a challenge. I wasn't in pain the first couple weeks, but definitely uncomfortable, especially under my arms from the sentinel lymph node removal.
If you can work from home and plan for naps you may be able to start working sooner but if you're going into an office I wouldn't rush going back too soon. If you have a physical job then I'd discuss what you can and can't do with your dr. I wasn't allowed to garden for a month because bending over affected the healing.
I had the great luxury of taking a full month to recover. I'm sure I could have done many things sooner but I'm happy I had the time to focus on healing.
Best of luck with your upcoming surgery! Lucky
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Hi I'm new and have only posted once. I have a lot of questions but I'm only doing one at a time. since you got the double mastectomy and you're around my age I'm 72 what do they do with the extra skin because I'm not getting reconstruction.
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I had a double mastectomy a year ago (5/2017). I only stayed in the hospital one night and actually could have even gone home the same day but chose not to and I'm glad i stayed. I felt a lot better just having the nurses there as well as my husband. I really had no pain at all, just some discomfort for a week or two. I had one drain on each side for a week and I did have shower drain holders so I was able to shower after the first 24 hours. I really wasn't restricted from much other than lifting, carrying heavy stuff, and reaching. We hired a cleaning lady for a month, and that was great.
I did have some excess skin but one of the nurses told me that it's difficult for the surgeons to know just how tightly to sew the incisions together without risk of them pulling. I was fine with it but then this past February, I did go back in for some scar revision surgery and he got rid of all of the excess skin. Sometimes I think they also leave it in case you change your mind about reconstruction. I also had some fluid that seeped back in and so they got rid of that, too.
I'm so much more comfortable going flat and fabulous than wearing a mastectomy bra with the silicone inserts. My right underarm is very tender and I found that any kind of bra or camisole just rubs me in a bad spot. It didn't take me long to realize that nobody really looks at our chests, so I got over being self-conscious very quickly and now it doesn't bother me at all. I don't need breasts in order to be me. That being said, I have had to learn to stand up straight with my shoulders back, otherwise I slump.
Hope this helps a little!!
Ann
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Snicksmom, I can't believe how much a BMX threw off my balance and my posture. I didn't even realize it until I had a problem sleeping on my sides. It was that the weight (from my breasts) that was balancing me and holding me in place. Found that a soft pillow on my side and my opposite arm over the pillow worked as well. I too must remember to stand up straight and pull my shoulders back otherwise I am a slumper.
Still glad I went flat, no regrets and no bras.
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Thank you! This helps a lot . I'm the same as you I'm looking forward to flat. Really don't think I need these things anymore.
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Hi Vikisez.
I had a bilateral mastectomy 4 months ago. Very little pain, just discomfort in the chest with the pulling of the stitches. The two drains were the worst part but I was lucky to get rid of those after a week. Once those were taken out, which did not hurt whatsoever, the healing began. The big thing that I noticed immediately is that when you drink something you really feel it as it goes down. It was very uncomfortable at first but now used to it. It just was something I did not realize would happen. I really think the surgery is a fairly easy one. I was driving on day two although I wouldn't recommend that. I am so glad to be rid of the extra worry of another surgery had I not opted for the double. And actually the pathology report came back that I had bc in the other breast also, it just was not detected beforehand. So that was a shock and relief. I don't miss the girls at all. It is very comfortable without boobs and when I wear my prosthetic ones, they seem to get in the way so most of time just wear a padded sports bra or go flat. Healing takes many months. My chest is still numb along the scar, and from what I have read from others it probably won’t get much better. I’m doing fine and feel very fortunate.
Good luck to you. You will be in my thoughts and prayers as you go through this ordeal. Let us know how you are doing.
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I am so glad I found this site and be able to talk to everyone. God bless you all. I am 63 now but at 61 2018 I was diagnosed with BC. I had double mastectomy. I was ER positive and it is news no one wants to hear Cancer. I did have expanders put in because the plastic surgeon said I needed to do this before Radiation. I had Chemo 4 months, radiation for 51/2 weeks and my expanders in for almost a year. in October 29 2019 I went in and had them removed and implants. I had a problem with the implant on my left side. This side never healed properly and had to be removed in 2 months. My doctor wants me to heal for 6 months and I believe I am going to remove the one on the right. I am tired of surgeries and the down time. I want to get on with my life. Implants do not make you feel like a woman. There is no sensation in the implant. At the end of the day it is just a bump on the chest with some form of course. I love it when husbands step up to the plate and support their wives. You are right if I had thought it threw before my mastectomy I would had gone flat. God bless you
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Wonderful attitude Ann! I love it.
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