Update on my Mom After Frontline Treatment (09/11/17)

rcdeman

Hi everyone,

It's been a while yet again, but I just wanted to give an update on my mom's condition and make a few comments on her completed treatment journey (as of 08/21/17!).

I can't believe it's been more than a year since my mom was first diagnosed with UPSC, initially staged at IIIC1 and then later upgraded to IIIC2. This year for us has been fraught with a rollercoaster of ups and downs, the experiencing of so much negative emotions and heartache. However, during this, we also experienced the positive feeling of unity and gratefulness as we relied heavily on the help and fervent prayers of our friends and family.

I wanted to include the lovely people on this board who have been such a blessing and a great help to us during our journey during my mom's difficult time from the start of her initial diagnosis to her hysterectomy, then to her second surgery, to the bad news of her upgraded diagnosis, to her prolonged radiation treatment, to the many cancelled chemo sessions due to her low WBC counts, and finally, to the end of her treatment.

It's been a long difficult ride, but I'm grateful that after about 9 months of prolonged frontline treatments, my mom is finally able to rest and recuperate, and hopefully regrow back her hair and eyebrows! Her last chemo session was in late August and her final neupogen shots were in late August/early September.

However, at this point, I'm still restless and I feel like I'm missing something important. The end of her treatment feels anticlimatic. There were no CT/PET scans taken afterwards, no blood tests, nothing to assure us that my mom is NED or anything. It just seems as if things just petered off and we've been left bereft and uncertain. I've asked about follow-up scans and bloodtests and it seems that they won't issue those tests until near the end of the year. Is that normal for everyone?

At this moment, I'm still trying to see if there is any doctor who will consider prescribing her metformin, which I understand is a drug that is used for those with PCOS, high BS, or obesity or diabetes, but I am having no luck at the moment. My mom's one of those stubborn picky-eaters who refuses to change her diet radically. She loves her bread, her rice, and all those starchy carbs with simple sugars. I'm worried that the sugar from these foods will ultimately feed whatever cancer cell(s) that may or may not still be hiding in her body. I would feel more confident if she had some pre-emptive medication that could help control her sugar intake, but since her BS is still in the normal range and since she has no diabetes nor is she overweight, the metformin may be a no-go for her.

Aside from her 3-month checkups with her surgical oncologist as well as the periodical CT scans/blood tests, we are praying that this is it. We don't know know what tomorow will bring, but from this journey, we've learned to cope, to not take things for granted, and to just live one day at a time and be happy with what we have.

Thank you everyone. We're so very grateful.

Love,
Rebecca

Kvdyson

Rebecca, my experience right after front-line treatment was very similar (although I had a CT scan right away). The feeling of near abandonment was un-nerving. I got really used to having a medical team around me, checking on me all the time and then, boom, nothing. It was almost surreal. But, it seems pretty universal.

I think that is where support groups really came into play since they were still there and always available when I needed to ask questions or just vent.

There are many doctors who are conservative when it comes to scans since there are risks involved with getting too much radiation. Maybe, because of her extended radiation treatments, they think it's better to give her body a 3-month break? Perhaps you can plan for something fun to do in the meantime so that both of you can focus on that and let the time pass without cancer always being front-and-center.

Hoping for the best for her (and for you)! Kim

Soup52

I just had one scan about a

I just had one scan about a month after my last treatment. Since then it's just a pelvic and CA125 blood test.i know the feeling. How do you know it's really gone..... For me the treatment ended June 2016. I'm really hoping for a scan this year, but I know my Dr is conservative also since I had bothe external and internal radiation. Prayers for us all that the cancer stays gone.

MAbound

Give it a little time

Anticlimatic may be just what your mom needs right now as she recovers from treatment. Getting through treatment is like getting through a battle and you are both still probably dealing with shell shock. I felt like everybody expected me to celebrate and dance a jig after treatment, but it took a while for me to feel like me again.

Give it time for the both of you to feel like life is returning to some kind of normalcy. Then you can both enjoy those 3 month increments between checkups and not think about the cancer until you have to. Just as your normal changed when you were getting your mom through treatment, it's now changing again to a different normal after treatment. Hopefully you'll both be able to settle in to that soon and actually enjoy life again. God bless!