LCIS - now what

I had big hematomas too after my biopsies, and especially after my lumpectomy. It took several months to go away; it turned all sorts of autumnal colors-black, purple, green, yellow. Luckily, I'm not a topless dancer, so it just looked bad.

You have plenty of time to make your decision - in other words, probably at least many many months, or years. In the field of breast cancer, there are always exceptions, but if you've already had a lumpectomy to show you don't have DCIS/invasive in the area, you probably have plenty of time to make your decision.

It is NOT true that 'most people that have LCIS have the gene or family history', or any more so than the average group of women with breast cancer. Remember, roughly 1 in 8 women will get breast cancer some time in their lifetime, so if you have 8 or more adult (especially older) adult females in your family history, then on average, one of them will have breast cancer at some point. (The average age to get breast cancer is in one's early to mid 60s.) Only about 10-15% of breast cancers are thought to be due to single, inherited, deleterious gene mutations. For about 70% of women with breast cancer, there is no obvious risk factor (besides being a woman.) One of the stronger risks of breast cancer is age, and we can't do anything about that, unless you have your hands on a time machine.

Almost everything about LCIS is controversial. It is very difficult to impossible to know if women with extensive LCIS lesions are more at risk for DCIS/invasive breast cancer. That's because LCIS is not reliably detected by any imaging. So we don't know if a woman with one known LCIS spot really has multiple spots, especially some where else in that or the other breast. They know that most LCIS women have multiple spots of LCIS in one breast, and many have LCIS bilaterally. That's because, especially prior to about 1990, they routinely did bilateral mastectomies for almost all LCIS women, and they could biopsy the mastectomy specimens. So we can't compare a group of women with extensive LCIS lesions to a woman with few LCIS lesions, because we'd have to do mastectomies to find out who had few LCIS lesions. Then we'd be removing the LCIS that we're trying to study.

Another problem is that future DCIS/invasive breast cancer may be far away from our LCIS spot. Say, I'm one of the approximate half of LCIS women who goes on to get DCIS/invasive breast cancer. Often, my DCIS/invasive breast cancer is not where my known LCIS spot was, but somewhere a distance away that looked totally benign by imaging. While it is thought that some LCIS lesions do turn into cancer, many do not. (This evidence is from looking at the mutations in LCIS and cancer lesions, and seeing if they are similar.) So, maybe LCIS works 'at a distance', or LCIS is a marker for some other unknown risk factor we have.

Another reason why different people choose different treatments is because people have different backgrounds and feelings. You state that antihormonals are out of the question, and that's a valid choice.

Different people have different feelings about the options. One person may have had a family member or friend who had breast cancer; another had a family member or friend who had a stroke or uterine cancer. Another person may know someone who had bilateral mastectomies. One person may have other conditions that might affect their healing rate (such as diabetes), and another have anxiety issues. No one wants to have LCIS, and eventually you do make some choice on how to handle your diagnosis.

But, before you do make your decision, I would examine all options with both your heart and your head. If you are dead set against option X, do look at the numbers, as far as we know them, to know the risks and benefits. We, as humans, are notoriously bad at judging our risk. You cannot die of LCIS alone.

You can take as much time as you need to make your decision. For some of the options, you can change your mind and choose another option. There is no 'wrong choice'. There is only the choice that is best for you. It doesn't matter whether most of the women here choose option Y and you choose option Z. Or maybe you like option Y or X. I would only ask that you do get followed. Best wishes.

QKA12, I was in your situation and managed it with surveillance for about 7.5 yrs before going the PBMX route. If you search on my member name, msverydensebreasts you will get a sense of the odyssey I had. My last post in Feb after PBMX & exchange had a summary of the pros & cons of my experience that you might find useful. Each person has such individual considerations to weigh. Last summer when I was forced to re-evaluate my "surveillance only" situation I met with the BS, MO & multiple PSs. I got answers to all my questions after I did research and then compiled my findings and condensed the info into a list of pros & cons like a business case. It helped me order all the facts and risks and decide what I could stomach. Feel free to ask questions if you find any of my circumstance relevant to what you are facing. There is so much I've learned from these boards that doctors don't necessarily cover. Good luck!

I was diagnosed with LCIS last year after multiple benign biopsies over a 30 year period.. No genetic mutation, but I did have family history. I felt very strongly that PBMX was the best choice for me, even though my BS tried to talk me out of it. In my gut I felt that I would wind up with BC at some point, and I'd rather eliminate the risk now than fight it later.

It turned out to be the right decision for me. They did find DCIS in the other breast. Imaging didn't pick it up, and I wonder how far it may have developed had I not had the MX. I was lucky enough to get it out before it had a chance to become invasive.

It's such a huge, personal decision. My instincts led me to my choice, and I haven't regretted it for an instant. I hope you are able to reach a decision that you are comfortable with. Best of luck to you.

Theo -- thanks for joining! Welcome!

Were you recently diagnosed? Have you decided on your course of action? Please share!

--The Mods

Please be aware that LCIS and ILC and DCIS and IDC are different cancers. It is possible to have both...but they are different. If you have a doctor that feels that these cancers and treatment options are the same, then RUN, don't walk, to another oncologist/surgeon. Unfortunately, doctors have treated these cancers as if they were the same for years. I, thankfully, have an oncologist that knows the difference. Finally we are seeing more research on LCIS and ILC and the differences in treatment.

It is true that odds are if you have ILC and LCIS in one breast, it will also be found in the other breast or will develop in the other breast. Couple that with difficulty in finding LCIS and ILC with standard imaging, BMX is not an uncommon recommendation. But you do have time to get a second and even a third opinion. LCIS and ILC are typically slow to grow.

Good luck!