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Palliative care for stage IVB uterine serous carcinoma

lchan
Posts: 3
Joined: Jan 2018

Hi there,

 

I am new here.  I signed up for my mom who was diagnoised with stage IVB uterine serous carcinoma last year, Aug 2017. She's currently 70 years old. 

She underwent total abdominal hysterectomy and bilateral sapingo-oophorectomy, peliv and periaortic lymph node dissection, omentectomy, appendectomy, tumor debulking, low anterior resection with an anastomosist and projected lopp ileostomy.

Due to her decondition, oncologist just use carboplatin at a low dosage, doing weekly chemo.  However after the first cycle, her CA125 is going up.  So onco suggested either adding taxol or stopping.  My mom has some other health issue that lead the care team to recommend stopping chemo.  I will bring her to see palliative care next week.

Is palliative care a good choice moving forward with my mom's condition?  Anyone here been on palliative care with similar type of cancer and stage?  What do they do? How helpful?

Thanks,
Linda

evolo58
Posts: 293
Joined: Dec 2017

A few things:

First of all, for any newbies here who don't know this, palliative care can be offered even if you are engaging in curative or management treatment. It involves procedures that reduce pain and improve quailty of life. It does NOT necessarily equate to hospice-type care, though hospice can be a part of palliative care if this is the patient's choice. When I met with my current gyno onco, she did not explain this, and it caused me a heck of a lot of stress for no reason. This is why I'm planning to switch to my second opinion, who DID explain that. I am presuming, however, that your onco is referring to non-curative palliative care.

C-125 is a good diagnostic test. but the numbers can occasionally go up for various reasons that are not cancerous, and it should not be the sole determinant for future treatment. Are the doctors doing any further tests to see just where the problem could be? Any CT or PET scans? I'm guessing that because your onco recommended chemo that he or she is aware of what problem your mother is having (and that radiation is apparently not the answer), but hopefully the two of you are!

A good pamphlet on C-125 (Thank you LorettaMarshall!) is here: http://www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf

From reading posts here, some ladies needed alternatives to Taxol and other chemo drugs, and have been using them with good results for a while. Has your onco discussed any other management alternatives? Hopefully, these ladies will respond to your post. 

Most of all, how does your mother feel about this? Some choose to just let nature be and live as comfortably as possible. Others wish to fight. This is their decision.

I'm not getting the impression that your onco is giving you clear answers. Is is possible to seek a second opinion at another facility?

My fervent hope that you get your answers soon, and that they will actually be positive ones.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Linda, I hope you and your mom can read this site together as being very honest is so important. I am 77 and have just finished a year of surgery, chemo, radiation, blood clots, etc. I also survived BC 20 years ago. I was a 1a UPSC and after surgery wanted to just go with observation. But, I listened to my onc, my family and the ladies on this blog. I decided to follow protocol but the long year really made my daughter and 2 sons talk candidly about how I want to live the rest of my life. You were not clear as to how severe your mom's other conditions are, and as evolo58 said, you and your mom need more input from the doctors.  I was fortunate to have friends who are in the medical field as well as 2 sons, so I probably got more info than needed, but now that I look back, I am glad I listened. We all sat down and I shared with them my idea of an end of life plan, what I wanted if cancer returns, etc.  We laughed and cried, but in the end, we all agreed that I am the Captain and they will follow my lead. Palliative care is very comforting as I am sure you and your mom will see after you visit. I found the doctors in that field really comforting and eager to guide and not force.  My hope for you both is a good year with doctors who will make everything clear and give great support when needed. Palliative care does not mean giving up but lifting you up.  The ladies on this site are also fantastic!  Hugs!

lchan
Posts: 3
Joined: Jan 2018

Hi Donna,

Thank you for your feedback and kind words.  My mom has been on pailiative care since Jan.  She's been learning to think more positively and trying to focus on living a healthy life.  So far the cancer hasn't advanced much, we are grateful.  She's currently going through radiation therapy to shrink couple lymph nodes as the cancer has spread there. 

Best,

Linda

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

SO glad to read this and know your mom and you are both doing better. I had to do another round of radiation and chemo this year but now am NED for the time being . I also am doing healthy things and taking one day at a time. Tell your mom to hang in there.

DF

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