Double mastectomy

[Karen502]

Hello... my options are looking like double mastectomy with/without reconstruction. Would like to hear some advice and ehat to expect. Thank you. Karen

[rebamacfan123]

I can only speak for myself. Just turned 47 literally on the day of the official diagnosis. DCIS left w stage 0. Mixed rigght w Stage 2B grade mainly 2 but small portion 3. 17 nodes removed. Was able to take care of myslef except driving and washing my hair day after DMX. 2 Drains were removed on day 12. Today is day 15. Not even tylenol is needed. Have been wearing regular clothes since drains are gone. I probably have boob envy for the rest of my life. Would I change my mind later to have a recon? No because no recon is the better choice for me. I have gone out w no bra numerous times. I felt liberated!

There are different routes to reconstructions. I hope you have been provided w detail of each. The psychological part of recon help patients immensely. Please ask around.

I pray for clear margins and speedy recovery.

Sincerely,

Mimi

[Karen502 in reply to rebamacfan123]

Thank you Mimi. I keep asking myself over and over if I want reconstruction and I still just don't know and I feel pressured into making a quick decision. I meet with plastic surgeon Thursday... praying for clearer vision of what I want. Because right now.....I just don't know....

[Dewdlebug28 in reply to Karen502]

I feel u Karen...in the smell situation. Guess I can make the decision after recon dr too. Good luck hun...remember we have Cancure....not that other one ok! Lol...the things my brain comes up with.....BE WELL

[IGotSunshine]

Dear Karen, This was one of the most difficult decisions I had to make. I initially planned to have recon using tissue from my belly or back, but after speaking with an excellent plastic surgeon, I decided that for me, the risks and length of recovery outweighed the benefits. I was 55, however, and in a committed relationship and very involved with yoga. I'd been in treatment—chemo, Herceptin, radiation—for nearly a year, and I wanted to get on with my life.

My simple mastectomy with lymph node dissection was extremely easy: I was in the hospital barely 24 hours and required no pain medication after the anesthesia wore off. I'd been required to take two weeks off of work, but I really didn't need that long. A week would have been fine--and I only needed a week because emptying my drains at my desk would have been weird!

I had worried about how I'd look. But I think I look fine--not like every other woman, but fine. I had asked my surgeon not to leave extra skin but to make me look like a 10-year-old boy, and she did. My daughter was looking at my before and after pictures a while ago, and she said, "Mom, you looked weird with boobs!"

There are some good resources out there to help you make your decision. One is Share. You can arrange to speak with women who've had different kinds of recon or none at all. There's a website called breastfree.org, where you can read women's accounts and see pictures of them in clothes, naked, with and without breast forms. Much helpful advice there about breast forms and clothing tips. And there's the Community forum on breastcancer.org, with many threads on recon and "going flat." There's even a "Flat & Fabulous" Facebook group.

One thing you might ask your surgeon: If you go flat for now, can you have recon later? In my case, I was told I could. And that made the decision to forgo reconstruction easier. I'm happy as is, but it was reassuring to know I could change my mind later if I were miserable with my decision.

Good luck making up up your mind.

[Karen502 in reply to IGotSunshine]

Thank you so much for your response and the resource suggestions. I will check them out! This forum has been such a blessing to me and so many others.

[daf10]

Here is what one SHARE volunteer has to offer:

For Karen502.

I had 2 single mastectomies cause I later got a second, unrelated cancer in the other breast. No reconstruction.

The surgery was less painful than I had feared, but that might be affected by the fact that I had two individual surgeries rather than a double mastectomy. It does take a little time and exercise to recover, but I found the pain not as bad as I had feared and I have full arm mobility on both sides.

I found that, when my body was ready later on, gently doing the yoga stretch where you lie on your back and cross your bended knee across your body with your arms open in a T kept my surgical scar from tightening up. So I am literally comfortable with my decision. I think that this applies whether or not you choose reconstruction.

I have never been prevented from doing anything. I wear my sweaty bra into the shower at the gym and keep a clean one in my toiletry kit, which I put on when I dry off in the shower stall.

I can wear strapless bras with lightweight prostheses, which shows off my collarbone, which is aging very well. With my breasts, strapless was out of the question.

I also have a bra with slightly smaller prostheses that I wear with some of my tighter shirts.

Potential issues without reconstruction:

Do you have a partner? How would they honestly feel about your new body?

During the summer, I find it helpful to put pads inside the bra to absorb sweat.

[daf10]

Here is what another Share volunteer's experience

I didn’t have a double mastectomy but had immediate DIEP flap reconstruction. The surgery and recovery were longer, and the surgery would certainly be longer for a double mastectomy. Since the surgery involves the abdomen (although not as deep as a hysterectomy), I had to avoid steps in the first week after surtgery. I also came home with five drains still attached (4 in the abdominal area, one from under the arm), but I was able to pin them to a long strip of gauze that I tied around my neck like a long neckless. This allowed me to take a shower and walk around without the drains hanging down around my knees and pulling on the stitches. The drains had to be emptied every day and the fluid measured and recorded. Luckily, a family friend who was a retired RN stayed with me for a week, cooking meals, doing laundry and helping me shower. My follow-up appointment was a week later when the drains were removed. They met the requirement for removal, which was a small amount of fluid in the drain of which I cannot remember the threshold amount. The best part about the immediate DIEP flab reconstruction was that I had only one scar in doing the surgery immediately and was able just to put on my bra without every feeling like my breast was missing. I would recommend help at home during recovery in the first one to two weeks. The recovery was six weeks, after which I returned to work. Joan

[gladudey]

Hi Karen, I agree with the other ladies. I too didn't need sedatives; there was hardly any pain. I suspect that it was because nerves had been cut. It takes a while to get feeling back to the chest wall. Don't know your age, and don't know if your cancer requires a mastectomy or why you chose a double mastectomy. I was already a senior 11 years ago, had family history, and though my lesion was stage 0, I thought I was doing the right thing by having a double, and chose no reconstruction. Recovery was a breeze. Was told not to have radiation. Did consult with two plastic surgeons 3 months later, but decided not to proceed. Was told that the chance of a recurrence was 5%. For chance of being 95% free of cancer, I was happy. Guess what, I fell into the 5% and had a recurrence 7 years later. That was almost 5 years ago. Had radiation then. So far so good. Sorry to make you more confused, but you have to see the entire picture. Best wishes to you.

[Hidden]

I had double mastectomy, expanders and implants. I got 3D nipple tattoo. I was happy. Then, one implant got infected, I had both removed.

Been flat since last August. I'm thinking of getting some fancy tattooing on my chest.

I feel like my body is not mine. I don't want to go through another implant surgery, and I don't like all the bras & forms. So, I'm usually flat, unless I am going someplace where I need to dress up a little, then I'll put in a bra w/forms.