considering mastectomy

[dammie]

I am 42 dx 8/03 with rt. invasive ductal 1.6cmx1.5cm with intraductal present and lobular in situ present and multifocal, SBR 6/9, intermediate grade, ER pos-PR neg, HER-2 neg. 9/03 had wide re-excision(with clear margins) with axil lymph node disection (one sentinal pos- 22 removed). My lump was self detected-mammo and sono neg due to very dense breasts.  I went for bx. due to fam. hx. of breast CA (mom died at 49 and maternal aunt died at 42). Started dose dense chemo 11/03-completed 4 cycles AC and 2 cycles of Taxol with 2 taxol to go. Agreement was to continue with radiation after chemo, however, I'm now not so sure I want radiation since a radiated breast would not qualify for "implant" reconst as per surgeon if I needed it in the future. PET scan neg for met. Breast MRI 8/03 after initial surgery showed multiple enhancements as well as the enhancements surrounding initial lumpectomy requiring  add'l surgery and MRI in 6 mos for f/u.  Oncologist found a new lump in left breast along with axil tenderness due to enlarged lymph node- breast MRI done 12/29/03 shows "enhancements - 1.5cm & 1.25cm in left and 0.9cm in right with additional multiple enhancements. The term "enhancement" has me very worried.  Surgeon wants to biopsy these after chemo.  I am terrified these are CA. When is it time for a mastectomy?  Isn't lobular in situ a marker for future breast CA? With my hx, age & type of CA is a bilateral mastectomy out of the question? I don't want to have rad. only to have CA again and not qual. for implants-I'm not interested in other types reconst.Thank you for advice

[CCF-RN,MSN-rf]

Dear dammie:  Given your history, both personal and family, you might be well served by seeking the opinion of a genetics counselor who can help you determine risks and create a plan of care that will best suit your situation both medically and cosmetically.  Also, you might consider a second opinion from a breast specialist and plastic surgeon to discuss surgical options, both now and in the future.

[dammie]

Thank you.  I have had genetic counseling  BRCA1 & BRCA2 both neg,however, the genetic MD still wants to treat me as if I was pos due to the strong fam. hx and my age (3 of us in our 40s with breast CA)  He feels I have a gene that has not been discovered yet or that I fell into the 15% that the test may not pick up.  Also, I have had second opinions and  a plastic surgeon, that is how I know that implant reconstruct is not a possibility after radiation.  I still need answers to my questions:  re: lobular carcinoma in situ, enhancements on the MRI, and the possibility of getting CA even after radiation.  These are the reasons, along with my family hx., why I am considering the bilat mastectomy.  That is the question I need help with from the surgeon.  Thank for your help thus far.

[surgeon]

I think it's fair to say that if it were known for sure a woman had one of the cancer genes, mastectomy would be considered better than radiation. Lobular carcinoma in situ is indeed a risk factor for future invasive cancer, but much less so than is ductal carcinoma in situ. Enhancements on MRI could mean many things. Being multiple, it's less likely to be cancer than if it were a solitary finding, but certainly not impossible; especially if it were lobular cancer. One problem with breast MRI is that there's still a learning curve as to what things really mean. Your situation is a difficult one; you have certain factors that elevate your risk. Dense breasts make evaluation more difficult. You have legitimate concerns. If it's true that you really wouldn't want any form of reconstruction other than implants if you were to have mastectomy, and given all of the above, I'd indeed consider bilateral mastectomy. Usually tissue expanders can be inserted at the time of mastectomies, and subsequent injection stretches the skin to a point where eventually permanent implants are placed. Utimately, you'll have to search your own heart: since there's no way to predict your personal risk -- such data are only useful for large numbers of people but don't allow us to say what will happen to a single individual if this is chosen over that -- it boils down to what you think will allow you the most comfort. It seems you are leaning toward bilateral mastectomy; were you my patient, I wouldn't try to talk you out of it. Finally, as I've said in other posts, I'm not an "official" contributer here: I'm a surgeon with many years experience in breast cancer treatment. I post here on my own.

[pitcrew]

I have heard that a person can opt for What was explained to me as scooping out the breast tissue in the unaffected breast leaving the skin and sometimes nipple and going with implants. Is this true? I have an appt in 2 weeks to have a tissue expander put in on the left side and was considering having the right side "scooped" since they are going to put an implant on the right side also to achieve semitre (spelling).

[Rosa]

I had a bilateral mastectomy for recurrent bc and had expanders placed and will ultimately have implants.  I plan to have silicone.

My plastic surgeon said that sometimes radiated tissue doesn't expand quite as well, but she didn't see a problem in my case and felt confident that she could achieve a good result despite the fact that my left breast had been radiated before.  

I must say the surgery and recovery was difficult, but I'm glad I had both removed; I look forward to getting my figure back which should be sometime in the summer.

Good Luck!!

[nurse12hr]

I had infiltrating ductal breast CA back in 1993.  I chose a mastectomy with implant reconstruction at the time of the original surgery.  I had neg nodes, and was premenopausal at the time.  I could not tolerate Tamoxifen, and had no chemo.

A year later, they began seeing concerning calcifications in my remaining breast.  After 2 biopsies, I said enough is enough.  I had a prophylactic mastectomy with implant reconstruction on the other side, too.

I do not regret it.  Do what your heart tells you.  Only you know how much fear and anxiety you can live with.  I had excellent cosmetic results.  

Good luck to you.

[surgeon]

The scooping out you're referring to is called a subcutaneous mastectomy. Many people, myself included, consider it less than a perfect cancer prevention operation because it's likely to leave some breast tissue, especially around the nipple. The best cancer operation, in my opinion, is total mastectomy which includes the nipple. That requires some form of nipple reconstruction.

[dammie]

Thank you all for your comments.  I am leaning toward the bilateral mastectomy because in the end I think  it will be the only thing that I can comfortably live with in terms of the anxiety that this disease produces.  God Bless