ILC Follow up testing/treatment

Hi Mavericksmom,

You are welcome! And I forgot to mention one more characteristic of ILC--it has a bit higher tendency to recur later rather than earlier, so current research supports (if we can handle it) being on an AI for 10 years at least, (more research is underway to see if AIs keep us from recurring longer than 10 years even) and not the requisite 5 that those who have some other type of hormone + b.c. are prescribed.

In other words we have to be diligent about taking care of ourselves and not think we are out of the woods if we get through 5 years.

We got the slower-growing kind of c, but it has its own problems, as do all diseases. My current approach is to tx it like it is a chronic disease-I have no evidence of it now, but there are things I have to do for the rest of my life in order to give myself the best chance of survival.

So far I've had no real ill effects from the Aromasin I take, but the Arimidex I was on for 18 months was horrible for me. So last bit of advice: if you are on one AI that brings side effects you can't manage, get to your MO and ask them to switch you to another. Some women do terribly on Aromasin and great on Arimidex; I was the opposite. Some do well on Femara, some don't. Don't give up or stop taking the AI if you are on one--tell your doc asap. We really are the ones who care more about our health than anyone else, but we have to get proactive about fiercely protecting it, too.

Claire in AZ

Maverickesmom -- OMG -- I didn't know they are looking at the possibility that the Al's cause Alzheimers. Both of my parents had dementia -- never really knew what type. I realized something was wrong with mom when she came to my husband's funeral in purple stockings. I cared for them in my home (with the help of sitters) for 12 years and the last couple of years my mom was bed bound, could not turn over by herself, had to be fed --- the whole thing was horrible to watch. Dad was 88 and mom was 92 at death. When I got breast cancer I thought -- oh my gosh, who is going to take me to have my MRI and Mammogram when I get Alzheimers later in life.

MM, no, I didn't get genetic testing. I was asked if anyone in my family had a dx of b.c., and when I replied in the negative they didn't pursue it. I had one NP tell me that there was little chance of BRCA because I had no women in my family that had been dx.

However, I am a "downwinder". We are US citizens who were exposed to radioactive fallout from the the Nevada test site above ground nuclear testing from 1951-1962. I was 3 when the last nuclear test was performed, and living in the fallout area (No. AZ) so I was exposed. in the 1990s we were awarded the RECA--Radiation Exposure Compensation Act. Those who were at the test site, those who mined uranium, and those who were in the fallout path of the testing--were awarded $100,000, 50,000, and 75,000 respectively if we could show proof that we qualified and had contracted the cancers on the list (b.c. was one, there were others: lung, thyroid, etc.). I could--and did--and received an award.

So the US government quantified my life at $50 grand.

Above all else, I consider my radioactive exposure at age 3 as part of the reason why I got cancer.

Claire in AZ

For our original poster, mavericksmom, regarding the question of abdominal metastatic disease: I don't believe there are specific tests for ILC spreading to those areas. In fact, I think it may be somewhat like ovarian cancer - vague sensations of fullness or bloating at first.

When more advanced, peritoneal carcinomatosis may be the result. That would involve ascites/fluid collection which can be drained periodically. So, the best advice might be to know your body and, as suggested above, report unusual symptoms.

As far as genetics, it sounds like maverick may have more than one sister with BC. Should that be the case, perhaps one of them could receive counseling especially if they are younger/pre-menopausal. Then, once they accept the option of testing, any mutation found could mean that you only need analysis for that variant which theoretically costs less than doing an entire panel.

Prices, even for just BRCA, have come way down in the US during the past five years since the Myriad labs 'patent' was set aside by the Supreme Court. So, whoever has the records from 2011 may be able to update family history in addition to those earlier results which would hopefully streamline the process.

However, it is important to have any life or other insurance you may want to have put in place first. While health coverage is protected by GINA legislation, other policies are not and could be more expensive or difficult to obtain.

My oncologist doesn't test for tumor markers--at least my old one didn't. We'll see what my new one looks for.

Oftentimes our intuition is one of our best defenses (note I didn't say always: I can hyperventilate about small pains, etc. because I have medical anxiety at times, too). As for abdominal metastasis, vlnr is right--similar to ovarian cancer. I also think any kind of deep lower back pain should be reported (after 2 weeks).

Again, my newer approach is to consider my dx like a chronic disease, because I know millions of people live long healthy lives with all kinds of chronic diseases when they are treated properly. I correct those who ask me how long I've been "in remission" (old language) and tell them I'm currently NED, never mention how many years, and tell them I have to monitor my health for any sign of problems the rest of my life.

For some reason (right now) it makes it easier for me to handle the fear.

Claire in AZ