Topic: double mastectomy

Oct 29, 2009 06:18PM Isabella4 wrote:

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.

Oct 31, 2009 11:16AM helen123 wrote:

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.

Nov 1, 2009 07:03PM helen123 wrote:

Thanks for the welcome, Isabella. I'm coming up on five years (in Janauary) since my ILC.

 Helen

Nov 4, 2009 03:20PM Sue-61 wrote:

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

Jan 28, 2010 05:04PM ThereIsHope wrote:

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)

Feb 15, 2010 09:20PM ThereIsHope wrote:

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

May 30, 2010 05:43PM Isabella4 wrote:

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.

May 31, 2010 06:26PM Isabella4 wrote:

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. 

Jul 5, 2010 08:23PM - edited Jul 14, 2010 09:16PM by FireKracker

Jan 8, 2011 12:12AM Yeng21 wrote:

Apr 2, 2018 01:22PM Lilypond wrote:

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).

Aug 10, 2018 11:00PM Luckynumber47 wrote:

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

Aug 16, 2018 06:24PM Snickersmom wrote:

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

Aug 23, 2018 04:25PM Vikisez wrote:

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.

Jan 6, 2020 08:55AM D0800V wrote:

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