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I'm 50 years old, have had about 10 breast biopsies (needle or excisions) done in the last decade because of fibrocyctic disease in both breasts, and just recently found out that I have DCIS in my left breast (with comedonecrosis). With all of the problems I've had, I had made my mind up long ago, that if I ever was diagnosed with any kind of breast cancer, that I was going to have bilateral mastectomies performed. However, after talking to the surgeon and oncologist, I'm now wondering if I should just have the lumpectomy, radiation and tamoxifen to the left breast. The surgeon sounded like he wouldn't perform a prophylactic mastectomy on the right anyway, since the only family history of breast cancer I have is my paternal grandmother.

If you've been in a similar position, I'd really appreciate it if you could let me know what procedure you had performed, and if you're still happy with your decision.

Thanks for your help, as I'm really having a hard time trying to decide what to do, since the 15 yr survival rate is the same for both--providing that you continue to have regular check-ups and mammograms.


bebe1976's picture
Posts: 60
Joined: Aug 2002

Hi Dianne,
My name is Jennifer, I'm 26 and I was diagnosed with both extensive DCIS and microinvasive ductal carcinoma. Been there, done that...I too got so scared that I wanted a bilateral mastectomy, but I learned from my surgeon that if I had it it was not a guarantee that my cancer would not return in the scar tissue or the chest wall. After being reassured that with radiation and Tamoxifen I would have the same fighting chance, I chose to go with the suggested procedure and have no complaints. I underwent a partial mastectomy and a lymph node dissection in August, I also underwent an elective hysterectomy due to my family history of ovarian cancer and a cyst I already had, started on Tamoxifen in the last weeks of October and radiation Oct. 30. My blood count is a bit low and I'm feeling a little bit exhausted from radiation but I'm managing it well. You will also go through a paranoid stage because the scar may get lumpy and hard, but this is normal. If I can be of any assistance to you, please feel free to contact me anytime.
Good luck in your process,

Posts: 2
Joined: Nov 2002

Hi Jenn,
Thanks so much for your reply. It really does help to talk to other women who have been through it. And good luck to you, too!

Posts: 931
Joined: Oct 2000

Hi Diane. I was diagnosed 2 years ago at 48 with DCIS in my right breast. I never thought about having bilaterial mastectomies. The thought of having cancer was so overwhelming I only thought about what the MD was telling me. He never suggested having a profilactic mastectomy. DCIS is noninvasive. Unless there is DCIS in the other breast I wouldn't do the surgery. You may never have a problem in that breast. Why do something that isn't necessary? I had a lumpectomy but my margins weren't clear so I opted for a mastectomy and immed. Tram Flap reconstruction. I didn't need radiation with the mastectomy but would have had it had I just had the lumpectomy. I am on Tamoxifen and having no problems other than hot flashes and night sweats which are annoying but tolerable. If I can help in any way, feel free to write either here or at ..RPT1206@aol.com. Good luck. Let me know how everything works out. HUGS!! Cathy

Posts: 317
Joined: Apr 2002

Hi Diane....my cancer was Stage 1, and I just had the lumpectomy, radiation, and tamoxifen. I just felt that I really didn't want to cut any more off than I needed to, and as you said, the survival rate is the same. It's been a year, and so far, so good. I've got a lump on the other side right now, but the onc thinks it's just a fibrocystic change that's normal with the approach of menopause...will find out next week when I do the mammo and ultrasound. I wish you well....the decision making is the hardest part of the whole thing. God bless, Cyndi

Posts: 13
Joined: Apr 2002

Hi Diane Last July I was diagnosed with a high grade DCIS in my left breast. I did as you did and listened to my DR and was never given an option of a mastectomy. He preformed a lumpectomy the first of October, followed by 6 weeks radiation and currently on Tamoxifen. Now, the bad news is I have been in and out of the hospital this past year (started in January) for infections in my breat and symptoms similar to yours. I even worried about having IBC which also has some of the same symptoms but he kept telling me I didn't have that. The wound site (where tumor was removed) would fill with fluid and get infected. Had it drained several times until May when on vecation the infection got so bad again, I had to go to emergency room. They opened the wound up, drained it and left it open to heal from inside out. I hope I never have to go through that again. Besides being on antiobotics most of year, I had 8 weeks of infusion therapy ordered by an infectious disease doctor after they couldn't get infection under control with prescription meds. This was 8 weeks of twice daily infusions 7 days a week. Also had total of 60 hyperbaric treatments to get the cavity to heal. They said I had radiation damage and it made it hard to heal. I'm sitting here now with a small hole in my breast that will never close over...looks like a hugh dimple. After spending 4 months in FL (where we were vacationing) I returned to TX (where I live) and went to new surgeon and Oncologist. My surgeon was female and specialized in breasts. She told me that she won't do a lumpectomy on women with large breast because she sees too many women with large breast that have had a lot of the problems I had. I wish I had gone to her first but opted for MD Anderson, thinking they were the best. I wouldn't have lost a year of my life trying to get over the BC. From what I've been through and what my surgeon told me, I would definately recommend the mastectomy if you have large breast. Of course the choice is definately yours to make.

If you'd like to chat or email me directly, my name is Connie and you can reach me at csgoss46@aol.com. I wish you luck in making your decision. Take good care of yourself.

Posts: 46
Joined: Dec 2001

Hi Diane,
I was diagosed with DCIS and LCIS in my rt breast. I had two more surgery's after my biopsy to try to get clean margins. no luck. I opted for a double mastectomy. I have absolutely no regrets. I saw my oncologist two weeks ago for my one year checkup, he gave me a 98% cure rate. I am so relieved that I do not have to worry (that much) about re-occurance. mainly because of the LCIS, I was given a 50 -70% chance of re-occurance. odds I was not able to accept. You are facing some really tough decisions. Hang in there and follow your heart and gut. Ask lots of questions and if your not happy with an answer, get a second or third opinion. Good luck.

Posts: 1
Joined: Nov 2002

Hi - I too have had numerous breast biopsies on both breasts and now have DCIS in the right breast. I was diagnosed in July. I chose lumpectomy and radiation for treatment option. Well, I have had 2 lumpectomies now and still can't get a clear margin so will be having a mastectomy in a few weeks. My advice, if your cancer is near the nipple, get a mastectomy. Also, they need to talk to you about reconstruction. If I had gone ahead with this in August I could have had reconstruct done immediately. As it is, I have a business to run and can't afford the time off now for that so will delay until later. Hope this helps

Posts: 7
Joined: Nov 2002

Hi diane--I had DCIS also diagnosed in one breast but had both removed because it was felt that monitoring properly would be very difficult dues to the dense and lumpy nature of my breasts. (I also had several biopsies through the years.) After the mastectomies when the pathology was done, there was DCIS in both breasts. Mine was rather widespread, so l lumpectomy was not an option, but I had no tamoxifan and no radiation. Everyones's situation is different, obviously, but I am doing fine. Best of luck to you.

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