Research

Spent much of the day doing research.

Stanford says that with LCIS, both breasts are affected 30% of the time. Also, 25% of patients with LCIS will develop invasive breast cancer and this risk applies to both breasts regardless of whether just one has LCIS or not. So it really doesn't matter of LCIS is in the right breast or not, it is still at a higher risk. Also, this higher risk applies to both kinds of cancers, lobular and ductal.

The Mayo clinic says 10% to 20% lifetime risk of invasive in either breast. I wonder if that was above and beyond the already 12% chance any woman with breasts has to contract breast cancer.

Breastcancer.org says the lifetime risk is 30 to 40% for LCIS women and 12.5% for women without LCIS. They also list another estimate of 21% over the next 15 years. Taking the drug tamoxifen reduces that risk by 46%.

Network of Strength says 25% lifetime chance if have LCIS. They also say that 3 of 214 women developed breast cancer despite bilateral mastectomy because the doctors can't get all the cells.

I also read a 1% per year number somewhere and I think the second opinion surgeon said that too.

In addition, I ignored the advice of the second opinion nurses and read some discussion groups attached to credible sites. I like hearing the stories of others and I think I'm savvy enough to not fixate on one person's story and inappropriately apply it to me.

In hours of reading today, I have read about people who have chosen both options and are glad for their choices. I've also read about people who have gone through surgery 2 and 3 times. Some of them had lumpectomies and then mastectomies, some had multiple lumpectomies. In England, they almost never do mastectomies.

Some women who chose mastectomies were surprised to find more cancer in the breast tissue than advertised by the biopsy, MRI, and mammograms. Also, after prophylactic mastectomy (proactively taking the non-cancerous breast), several women reported cancers were found in the "good" breast though MRI did not show anything there.

I haven't found any hard numbers on people who have LCIS along with ILC. I am obviously one of the 25% of patients who developed an invasive cancer while having LCIS. Does that make me more likely to develop the ILC again if I just get the lumpectomy? And are the odds worse than 25% since I already had ILC? I would guess so. I think my surgeon was trying to get me to understand that on the horrible day when I learned the diagnosis.

I'm not one of those women who cares nothing for her breasts and who finds this to be a very easy decision. I know that many women feel that way and report that this decision was a no-brainer. I think most who write about it felt that way. A few reported agonizing about it though. I am obviously one who is having trouble with the decision.

I know these things:

1. I really don't want to take tamoxifen. It sounds like it as big a hit to "who I am" as a bilateral mastectomy would be and it requires 5 years of treatment and dealing with the common reactions which include hot flashes and irritability as well as many other things that sound terrible.

2. I really don't want to do chemo. Ever! Of course, I will do so if I have to, but I dread it as much as a bilateral mastectomy. Maybe if I learned more about chemo I wouldn't be so terrified of it. If I get the lumpectomy, the next time I get cancer it may not be caught early enough and I may need to have chemo.

3. I expect reconstruction will be traumatic for me. It will be a year of reconstruction time (surgery, expanders for 3+ months, surgery again, wait 3 months, nipples added, etc.). And after all that, the results will not be anywhere near what my breasts look or feel like now. Frankenstein scars and disfigured nipples and areolas are what I believe are in my future. This is probably what I cry about most right now.

4. I may be naive, but I don't really believe the breast cancer will be fatal for me. I believe I'm lucky that it was caught early. I'm focused more on what it will be like to live with the consequences of this disease, not whether I will live. I'm grateful that is the case, of course. After all my research, I'm no longer crying because I won't be here for my children as they grow up or because I can't grow old with my husband. I truly believe I will be here for them all.