removing a \'healthy\' breast?

[Erin]

I have a large invasive, lobular tumor in my left breast, stage IIb,HER2 +3, not hormonally receptive, and 6 nodes positive. I am thinking of having a bilateral mastectomy, even though they haven't seen anything in the right breast. My thinking is that I am 34 and every year increases the chance of it being there, especially being HER2, so better to do it all in one surgery now. Anyone else do something like this? I don't know if I have any genetic markers, but I have the dubious honor of being the first in my family to get BC.
Erin

[Priscilla]

Dear Erin - When I first found out about the cancer I considered the same thing and getting a transflap operation. Two nice boobs and a tummy tuck all in one. Then at staging they told me it was also in my liver and I put all that on hold. But, I can appreciate your concern.

The other day I asked my doctor to run a CA 125 or whatever for ovarian cancer and that came back at 495 (under 35 is normal). I still don't know what that means, but I think I would have my overies out too - it seems after you are through using them, all the sex organs seems to turn on you and become your enemy - not just women, so many men with prostrate cancer.

Maybe we should just all get de-sexed at 30 or 35. That is getting a little extreme - but it crosses your mind.

[Tammy]

Hi Erin, Yes I did this. Aggressive cancer and I initially had just the single mastectomy and couldn't have reconstruction right away because I had been breastfeeding my son. So when I went back for the implant I decided to elimate as much future risk as possible - not to mention have my breasts match much better than they would have. For the most part I am happy I did it. I do occassionally miss the sensations during intimacy but you have to weigh pros and cons. Best of luck with your decision! I have had silicone implants for 18 months and am very happy with them.

[Linda in MI.]

Hi Erin,

I don't have lobular breast cancer but I was told by my breast surgeon that lobular breast cancer tends to "move around" and hide and that it is always best to have both breasts removed because the chances of it recurring in the other breast is extremely high. I would do it if I were you!!

Blessings and Hugs,

Linda in MI.

[Linda in Calif]

Hi Erin:
I was diagnosed with infiltrating ductal carcinoma with some characteristics of invasive lobular carcinoma in my right breast. I always had problems with cysts and calcifications in BOTH breasts. I talked to my surg. and SHE said if it was her she would have both breasts removed. I figured she probably knew what she was talking about. She recommended having implants as the least invasive proceedure. She and my plastic surg. discouraged me from having a Tram proceedure done because of the damage done to the lymph system and possible back problems developing. If you are considering this, please talk to a physical therapist before you decide and hear what they have to say about Tram proceedures.
I had modified mastectomies on both sides but the "healthy" side had far less extensive surgery with only breast removal and just 2 lymph nodes taken. The right side that had the cancer had much more tissue removed along with 20 lymph nodes (10 out of 20 positive). Because of the severity of the surgery on my right side I have mild lymphadema on that side. I pray to God I don't develop it on the other side. It can be quite painful and definately impacts the quality of your life. This is something you need to consider if you go ahead with your surgery...you might want to have an undamaged side that is not prone to developing trouble down the line. Of course, your chances of having cancer in the other breast in the future exists and you have to try to balance your choices.
I had expanders placed at the time of my surgery then about a year later saline implants. Due to radiation damage on the right side I had to have a second operation to "re-match" the breasts and relieve pain from scar tissue. I just had the second surgery Dec. 19 and, so far, I think the results are okay. When I wear a bra you can't tell that I have had surgery. Naked, I don't quite match but then again my "natural" breasts didn't exactly match either.
I don't know if this has been helpful to you but if you would like to talk about it further or have any other questions feel free to e-mail me. Take Care, Linda

[chandi]

My mastectomy was for infiltrating ductal carcinoma, stage t2n1m0, with the right breast, in 1994 and I was afraid that I may get it on the other one. Thanks god, so far I am ok with it. Mine was er,pr+ve, and I was 38yrs then. I did not have radio therapy at that time because my heart is on the right side (situs inversus with hearet, liver & stomach). It was revailed recently that I have two small liver tumors on a routine check up. We could not figure out whether it was liver met or primary tumors from the long intake of tamoxifen and I dont know about my HER status as this was not tested at that time. I dont know what to say about your case.
Hugs.
Chandi.

[Erin]

Thank you all for your responses. It helps me think on things. Luckily, I have about a month to mull all this over. I'm sure I'll be polling people while in line at the supermarket! I wish just ONE of these decisions could be easy...
Erin

[Kitty]

Erin,

It's not so much her2+3 that is a concern for bc in your other breast but the fact that you have lobular cancer that concerns me. I would normally tell you that her2+ would put you at a higher risk of recurrence or metastatic cancer to liver, lungs, bones, brain mainly. It is less likely to show up in your other breast; however, you could always get another form of bc there. I had a mastectomry to my right breast only and sentinel node biopsy- 15 of 19 nodes were positive, I had large area of DCIS and 2 invasive ductal carcinomas (which did not appear on a mammogram). I had 4 rounds of AC and 4 of taxol followed by 28 days of radiation to the breast and neck area. I am her2+3 as well and my recurrence came 16 months after initial diagnosis or 10 months after finishing chemo in the form of liver mets. I never had reconstructive surgery because I am 51 and really could care less. I am now on weekly taxol/herceptin/carboplatin and am doing well. I guess I am just trying to say nobody really knows when it will crop up again, but rest assured there are many good things like the herceptin to battle it with and many of us Stage IV patients are doing just fine and dandy. I work full-time and if you met me you would have no idea I have metastatic bc. Good luck in your decision.
Kitty

[Sandy]

I have been saying for years, I think once a woman has her children get a double mastectomy and a thorough house cleaning down below of throwing out these female parts that cause us to many problems. We need to stop being pack rats!!
I wonder just what effect this would have on cancer for us women?? I am brain storming tonight. Big hugs to you all. Happy New Year, Sandy

[Anonymous]

Hi Erin,
I also had lobular ca,stage IIIB, her+3, hr+, original dx 11/00. Recurrence to bones 12/02. Am currently doing very well on herceptin/navalbene. No one spoke to me about a bilateral mastectomy prior to my surgery (and I was probably negligent in my exploration of information), and when it finally was brought up by my surgeon, it was the wk of my surgery and I freaked! I didn't have enough time to think it thru clearly and so I opted only for the removal of the breast with the tumor...I'm so glad you have the time to weigh your options! I wanted to proceed with reconstruction asap but radiation caused hardening of the muscles and tendon and the plastics guy sd I wdn't be happy with implants. (He had planned to "boost" the healthy breast in addition to implanting the missing one.) He suggested the tram flap which I didn't like the thought of and thus have done nothing to date. (Please note what Linda from CA said about that. My physical therapist expressed the same concerns that hers did.) I have to tell you, even tho my recurrence has already happened, I fear at risk of a 2nd cancer developing in the healthy breast and truly wish I had gone the bilateral route with expanders put in at the time of surgery. Implants may not have mirrored my natural breasts but I get tired of the prosthesis! I am 56, married, work full time, and lead a physically active lifestyle. I don't know if my "story" helps you at all....but this is one sister who wished she'd had the "healthy" breast removed! I wish you the best of luck with your surgery and recover...keep us posted!
Take good care,
Jackie