How much do you discuss with your PCP?

Breathe_Now

I'm just wondering, is your PCP involved in your breast health care? I tried explaining to my PCP that I thought my risk was higher than the 22% that I was given, she didn't seem to follow and the treatment note seemed to indicate that I was a worry wart because of information that I got off of the internet.

I think my treatment is going to have an impact on my future health, I am not overly worried about it but would like my doctor to be aware of my risk. How much effort should I go to explaining it to her, or should I just just let her read the reports that she gets from the specialists. Am I being nieve to think my PCP should know about all of my health issues?

MelissaDallas

LCIS is such an esoteric subject even the experts are kind of "at a loss" as far as I'm concerned. I don't know how educated your PCP is ever going to be on the subject. You may have to briefly keep the PCP in the loop and just see that he/she gets copied

Breathe_Now

Thanks for the reply, MelissaDallas.

I saw my PCP today and took print outs from the Gail Model with my percentage, the page that says that the Gail model is not for use with LCIS, and that the IBIS model is recommended for people with LCIS. She seemed to grasp the concept that this is a chronic condition that will require monitoring the rest of my life.

Next appointment with her is scheduled for after I see the oncologist. If I go on Tamoxifen, I think I am going to have to go off/change my antidepressant, Wellbutrin.

leaf

I don't know if you've seen my MANY other posts about this, but you may want to read this about breast cancer risk prediction. http://jnci.oxfordjournals.org/content/98/23/1673.... . For me, it was my PCP that lead me to realize they really don't know hardly anything about breast cancer prediction, particularly with LCIS. Since studies that look at the long term (as in lifetime) breast cancer risk with LCIS (without DCIS or invasive) are very few and far between, I can pretty confidently bet that the developers of the IBIS model did NOT compare their model results with the corresponding population. Of course, this is a requirement to see how good the model is.

As for interactions with tamoxifen, it looks like its controversial whether or not antidepressants interact with tamoxifen. See this recent abstract http://www.ncbi.nlm.nih.gov/pubmed/26631176.

I was on an antidepressant when I was on tamoxifen, and my oncologist didn't want to change or discontinue my antidepressant. Your provider may or may not agree. Of course, this study is not for bc prevention in LCIS patients, but we have to deal with limited information. I'm not going to hold my breath waiting for a study that looks at LCIS (and nothing worse such as DCIS or invasive) women on tamoxifen for bc prevention. LCIS (without DCIS or invasive) is an unusual condition.

Breathe_Now

Thanks Leaf, You shared the link on the risk prediction in my last post.

I've yet to meet with the oncologist, but it makes sense to me to take an antidepressant that doesn't suppress the enzymes nessasarry to make Tomoxifen work. I've used effexor in the past and will likely switch to it if I go on Tomoxifen.
Augmentation of Endoxifen Exposure in Tamoxifen-Treated Women Following SSRI Switch

I will be in a high risk surveillance program and will see an ARNP between her and the oncologist aside from the fact that this is a chronic condition, and what medications and treatments are being prescribed by others, by PCP doesn't need to be involved in understanding what the specialists are doing.

leaf

Glad you have a plan in place that is right for you! That's so important.

My PCP trains students (usually PA students), and I like to see them because I often get a perspective I don't usually get, and I figure maybe I'll expose them to things they weren't taught in school. When I told the student I had LCIS, and explained what LCIS stood for and LCIS wasn't usually considered cancer, he asked 'of what'? So I learned for 'newbies' its good to include that information too (that its of the breast.)

Your cited study is a clue to study the area more, but I think its important to also correlate the condition to the clinical outcome. If a drug level is lower than usual, the lower drug level may or may not be clinically relevant. For example, IF lower tamoxifen levels causes more breast cancer recurrences, then whatever is causing the lower drug level is important. But sometimes it doesn't make any difference. For example, clinically we just routinely do lab monitoring on just a handful of medications. Normally, we only do drug levels on medications that have a narrow 'therapeutic index' - they can be toxic with high levels, ineffective with low levels, and people can commonly have high or low levels. If drug levels don't correspond to clinical outcomes, then you know the picture is more complex than just drug levels.

It looks like there is controversy in this area, but its important to do what you feel is the right path for you. There is no 'right path' for everyone; we are all different.

Breathe_Now

Thanks leaf, I will still weigh what the oncologist has to say. For all I know right now she may say that tomoxifin is not right for me.