Seeking info for my mom, diagnosed with UPSC in December and finishing first line of chemo.

Kris_W

Hello-- I originally posted this over on the Gyn board and someone told me that UPSC folks are over here. Hope I'm in the right place. Apologies in advance for the long ramble:

My mom (age 69) 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 was otherwise in good health, and has had a relatively easy time with the chemo. Her CA-125 level has come from the high 400's to 9. She's now nearly done with this line of chemo and 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-- particualry with regard to radiation.

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).  It seems that the two doctors have different perspectives on what should/will happen next. 

In brief, the surgeon/gynecological oncologist'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, given the side effects of pelvic radiation and mom's stage of disease, 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 trying very hard to listen and learn, without judging, but it's very confusing and scary.

Given the potential side effects 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 necessarily want mom have what sounds like a virtual carpet bombing of radiation treatments without getting some more information first. We are waiting for her first post-chemo CT scan in a couple of weeks, after which we expect Mom will need to make a decision about proceeding with radiation, or not. Her surgeon recommends it regardless of the CT scan results. 

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)

NoTimeForCancer

I don't want your concern to go without a response

Kris, briefly I will tell you I had UPSC stage 1A.  (very, very lucky to catch so early).  Early or not, because it is aggressive, I have had (3) chemo/ (25) external radiation / (3) internal radiation / (3) chemo.  From everything out there it seems to be pretty standand now for this agressive cancer.  I think you will find women here with higher stages than mine who are still going strong.  It gives me hope.  

I didn't care for my radiologist.  I found as I showed up for treatment, etc..I was getting "surprises" that had never been explained to me.  I was so angry and I would tell him YOU NEED TO TELL ME.  After my first round of radiation I had called the radiologists office and was treated horribly by the nurses.  I hung up crying.  Before I started the second treatement of radiation my radiologist called and I was crying telling him if I didn't have to come back I wouldn't.  He may not have liked to hear it but I told him, and maybe that it is the honest they need. 

Have you tried to tell the surgeon/oncologist that you are having problems?  The level of frustration because of the communication?  They may not want to hear it but they aren't going to do anything to hurt your mother. 

I am glad I had a gynecological oncologist - there are only about 1400 - 1500 in the U.S. and they specialize in our cancer.  I dont' think all the women here have the luxury to have one, and it is like the difference of having a handyman look at your electrical vs a licensed electrician.  It is your house (your life in this case) and you don't want it to burn down around you while you are still living in it - that is the difference to me.

In the end, your mother will be able to decide what she wants.  If she wants more she can, if she wants to stop she can do that too.  I don't think any of us have the answers but she is the one who always can choose what she wants to do. 

Good luck and please come back to tell us how it is going.  There are lots of sisters out here, she (and you) are not alone.