Double Mastectomy

tousled1 · 04-23-2006, 06:35 AM

I have surgery scheduled for June 8th and have opted to have a double mastectomy. Was wondering if anyone else has had a double mastectomy and, if so, what can I expect.

I am stage III, ER/PR-, HER2+++, axillary node involvement, high nuclear grade tumor. Initially I had 2 tumors in right breast. Neoadjunct chemo consisted of 4 rounds A/C and 4 rounds Taxatore. Have 1 more round Taxatore to do. Initial tumors did not shrink as hoped. Tumor marker CA27.29 doubled. Now have an additional tumor in the right breast. I have very dense breasts, fibrocystic disease, and micro calcifications in both breasts along with a strong family history of breast cancer.

DeborahNC · 04-23-2006, 08:32 AM

I had bilateral mastectomy Sept. 6, 2005. The surgery took longer than expected (5 hours) . I had a lot of trouble with not being able to empty my bladder postop.

Stayed in the hospital overnight (which I really hate). Was on a morphine pump for several hours postop until I developed a throbbing headache from the drug. I had the JP drains for about a week afterward and they were removed along with the surgical clips.

The worst part for me was not being able to get comfortable for sleep. Every time I tried to get on my side it hurt and my arm went numb. It took about a month for this to subside.

I started using my arms as much as I could per doctors orders afterwards. I did a couple of physical therapy visits to get the exercises down pat. I still can't get my arms totally straight and extended above my head, but am working on it.

I have a very natural looking prosthesis, but don't wear it around the house or working in the yard. I'm looking into reconstruction, but am quite torn about going through two 3 hour operations that I really don't have to have.

Our thoughts will be with you and please let us know how you fare after surgery. We're here for you.

JoyMiller · 04-23-2006, 09:41 PM

I had a bi-lateral mastectomy in February 2005. Overnight in the hospital since the surgery took a little longer and started lated due to the surgeon's previous surgery delay. I was cool with it because I has the dopey drug while I was waiting. No big deal. The overnight rest in the hospital was welcome and the nurses were able to explain about the drains while I was alert enought to understand.

I had no problem with stretching my arms- just the normal movements made it seem like it didn't take long before I was almost back to normal. Not much pain since the nerves are all messed up. The worst for me was the drains- they are necessary, but awkward.

Everyone is different. I was in pretty good shape when I went in and I really think that helped a lot. If you're not in such good shape- do all you can to get your arms moving- the Dr. will be able to suggest some exercises. There is also a book I thought about getting, but didn't, called "Staying Abreast". (I think). I think it was written by a health practicioner of some sort who had a mastectomy and had a very good exercise program and a number of really good tips. It was expensive and since I was doing OK I didn't feel I needed it, but had thought that it sounded really good.

I have not had reconstruction and probably will not. I don't want the additional surgery and am very comfortable with myself- love not wearing a bra, just very lovely camis and tanks under my clothes.

Best wishes to you. This is a difficult time. But it will sort itself out.

Joy

Kimberly Lewis · 04-24-2006, 03:56 AM

Hi Kate, I didn't have both breasts removed at the same time - but wanted to encourage you that you are doing the right thing. I had a very good experience with the surgery and recovered quickly enough that I was back teaching pottery in 4 weeks. Also back out on the lake kyaking, walking, and other pursuits. Being active within reason is so important. My main deal was the emotional issue that took me by surprise... I felt that it wasn't important, my husband loved me - not my boobs etc... but the actual feeling of being an "amputee" really shocked me. I had to take time to greive and go on. I have yet to wear a prostesis and just have gone to wearing pretty camisoles and loosing a couple pounds so my belly wouldn't be the main attraction. Sorry, I know you were probably thinking more of the surgery, but felt that for me the emotions far outweighed the symptoms. Morphene didn't work for me - I got dilauded. MUCH better for my pain immediatly after surgery. sending healing prayers your way...

newgg · 04-24-2006, 05:00 AM

Agree with the above that the JP drains were the most troublesome. Not pain just difficult...and in the way. Figured out all kinds of belts, camisoles with pockets, tie a scarf around the waist in the shower....to deal with the dang drains. Had surgery in June, 2004, and no reconstruct planned. Tired of doctors and all that stuff. Did have one over night and the pump with happy stuff worked fine. DO the arms exercises.....repeat...DO the arm exercises. Just to do stretches and range of motion...again and again and again. Physically it is not a difficult surgery .....emotionally can be a bummer. Personally...was so glad to get the beast gone.....that is how I felt about the boobs...get the beast gone. Small price to pay to get the beast gone. Major support from a wonderful hubby sure helped. Was on the road in about 4 weeks camping with friends.

tousled1 · 04-24-2006, 06:10 AM

I want to thank all of you for your replies and support. I know deep in my heart that I'm doing the right thing. My surgeon told me that it would reduce my chance of recurrence to 20%. I guess loosing your breasts is a small price to pay. I also know that the emotional aspect will be overwhelming. I am trying to prepare myself mentally for the initial shock of seeing myself for the first time without any breasts. Not sure if I will have reconstruction surgery or not. I will be having radiation after surgery. Thanks again for all your support.

callen03 · 04-24-2006, 08:20 AM

I had bilateral surgery January 18 of this year, and I have Stage IV Breast Cancer, HER positive.

I was back to work after three weeks. My only complaint was the drains. I got a fanny pack to put them in, which helped me so much. I had very little pain from the surgery, and I had no complications.
Best of luck.

Sandy H · 04-24-2006, 10:45 AM

I had bil mastectomies because of being inflammatory, very densed and fibrocystic breasts and a size double D cup. Have never regretted it. I had a skin graft to the Rt. chest wall because of skin involvement and so stayed in the hospital for 5 days because of chance of infection. The surgery was nothing in fact, my IV fell out the afternoon after surgery and they simply took it out. I was suppose to get oral pain med and found out 3 days later it was nausea medication. When I told the nurse it was not working and didn't want anymore they discovered the mistake. Hope this helps. hugs, Sandy

ekoen · 04-24-2006, 01:15 PM

With family history of breast cancer, two tumors in left breast er/pr- her2+++, I had surgury aug 2005, followed by 4 ac, 12 taxol/herceptin, 36 days of radiation, now herceptin. Don't regret the double masectomy. I do regret having complication of reconstruction with implants at the same time. They are still uncomfortable and added a bunch of Dr. visits to my already busy schedule. Anti-anxiety meds helped me the whole time - adavan to be specific. Now feeling great. Diet turned around, no more sugar/caffeine/alcohol. Drink lots of water, listen to your body. Enlist as much help from your friends and family as you can. Learn to ask.

tousled1 · 04-25-2006, 06:54 AM

Thank you all for your replies. I will not be having reconstructive surgery right away as I will be undergoing radiation. I have an appointment in 2 weeks with the plastic surgeon to discuss my options. Not sure if I will have reconstruction or not. I guess time will tell. I have to get over this hurdle first.