Seeking feedback about my mother's treatment options for Stage IV UPSC, after first chemo cycle

Kris_W

Dear friends,

I think I'm on the right discussion board for my mother's form of cancer, which is uterine papillary sereous carcinoma. She was diagnosed in December of 2012 and is finishing her first line of chemotherapy, having undergone radical hysterectomy in December. Disease has metastized to her liver and is present in small "spots" on her abdominal wall. She is 69, and otherwise in good health, having a relatively easy time with the chemo (for which we are incredibly grateful).

I'm hoping I might be able to get some feedback from other UPSC patients or their caregivers about the treatment options my mom is now weighing, as she comes to the end of her first chemo cycle. As so often seems to happen, we have found it difficult to communicate with her surgeon/oncologist (a specialist in gynelogical cancers). His manner of handling questions seems to be largely, "Because I said so-- that's why."  He is in another city, about an hour away, and she is being treated in her home town by another medical oncologist (whom we find very easy to communicate with, but who is more of a generalist). As we near the end of her chemo, it seems that the two doctors have different perspectives on what should/will happen next. 

In brief, the surgeon's recommendations are: "Continue with carboplatin/Taxol through cycle #6.  Then CT chest/abdomen/pelvis.  If no residual disease proceed with pelvic EBRT and vaginal cuff brachy.  If residual disease, 2-3 more cycles of chemo and then radiation as long as she can tolerate it."  He is very busy, and there has not been any real conversation about side effects, or whether the intensity of the treatments he recommends are to be weighed against Mom's overall prognosis and quality of life. The medical oncologist has said that she does not necessarily think radiation is the way to go, and is advocating chemo until CA-125 levels return to an acceptable "normal" range, completing scans to look for visible disease, and then taking more of a watchful-waiting approach (I am summarizing, obviously). Her focus, unlike the surgeon, has included more discussion about quality of life, and she has emphasized that she does not believe Mom will be "cured" of this advanced cancer-- our goal is to get it into manageable remission for as long as we can. I'm sure my bias is obvious for the latter, but I'm trying very hard to listen and learn, without judging.

Given the side effects mom will likely experience from these treatments, the intensity if the schedule, and the advanced stage of her disease, Mom is not sure that this is the right course for her. I don't wish to second guess hthe surgeon's medical opinion, but I also don't want to subject my mom to what sounds like a virtual carpet bombing of radiation treatments when this may severely impact her quality of life, when (realistically speaking) there may be limited time.

These are heartbreaking considerations, and mom is frightened as well as intimidated (by the surgeon, and by how very serious the stakes are) so I'm trying to navigate some of this without getting  in the way or making communications between her and her doctor any more complex. (Impossible, but I'm trying! I live on the other side of the country, to boot.)

Can anyone shed some light on this for us who has had, or knows someone whose had either or both of these treatments? Do the EBRT and vaginal cuff brachy often come as a package, or are there reasons one might do one rather than both? And what does "radiation as long as she can tolerate it" really mean? Are there reasonable alternatives or variations that we should ask her doctor about at this point?

Apologies for so many complicated questions. I know there are no simple answers out there. More than anything, I think we are looking for others who just know about this rare form of cancer and can share their experience with us.

 

Thanks for any feedback or ideas--

 

Kris (daughter of Jean)

 

 

 

 

debrajo

Your Mom has what I have,

Your Mom has what I have, UPSC, and she probably needs to be on the uterine board where I am.  I was 57 when dx.  Had the six rounds of Taxol/Carboplatin, sandwiched in with five internal brachyotheropy treatments.  With UPSC, the stage is important, but the Grade is the problem child.  All UPSC is Grade 111 or C.  I was in VERY poor health with a major heart surgery and near fatal blood infection 8 weeks before the hysterectomy, then the chemo and radiation and I came out really great.  It's rough, but very doable.  Her dr. maybe worried that her blood counts will go too low or she may lose too much weight(I gained) for her to take all the treatment on schedule.  Come on over to the uterine board...there are a lot of us UPSC sisters over there.  Best, Debrajo