new here UPSC stage 1 or 2 (no lymph node testing)

sunflash

Hi ladies,
I'm new here and been reading about this very scary diagnosis.
I was diagnosed with UPSC after a hysterectomy in June. My gyn/onc didn't expect cancer..and my lymph nodes weren't checked. She did do a pelvic wash which was negative, and the tumor invaded less than half of the myometrium. But from what I've been reading......this is such a highly aggressive cancer that this doesn't lend itself to a good prognosis.
This is actually my 2nd cancer. In 2007 I was diagnosed with primary vaginal cancer. I was treated successfully for that, but in the process received both external and internal brachytherapy.
I mention this because my treatment plan will exclude radiation since I've already had that.
I will receive the standard 6 treatments of Taxol/Carboplatin. I've already had my 1st one and had minimal side effects, of which I was grateful. However, I'm increasingly concerned about my prognosis, as all the research I've read shows women do better with chemo and radiation.
I had a CT scan, and no evidence of cancer showed on it. My CA125 was 9. I had a second opinion from MDAnderson, and the doctor agreed with my oncologist's treatment plan. They both tell me that this cancer is not advanced, and is probably a stage one or two.
I guess my question is.......has anyone been treated successfully for this cancer when radiation was not included as part of their treatment plan?
I'm so glad I found this site.....this is a very difficult time for me. Thank you in advance for any replies.

daisy366

sunflash
I'm with you on the "scary" thing. You might read another thread that just started from another UPSC sister where I gave me 2 cents.

But I'm a UPSC sister who did not have abdominal radiation during initial treatment. I am no rocket scientist but I just don't get the logic of radiating without a specific target. It seems like the norm is for women to get abdominal and internal general radiation after or between rounds of chemo. For me this seems like shooting at a target in the dark - and OMG, the side effects!

My doc said that "there was no science to justify radiation" in my case. At first I was a little worried I was undertreated but in retrospect, I am grateful. My UPSC surfaced in a supraclavicular lymph node (surely far from abdomen) and this was successfully treated with radiation and chemo.

So be assured that not everyone gets radiation. I would make sure to have gyn-onc who would be up on the best treatment for you. Also check to see if a tissue assay/functional profile can be done at this point.

All the best, Mary Ann

sunflash

daisy366 said:

sunflash
I'm with you on the "scary" thing. You might read another thread that just started from another UPSC sister where I gave me 2 cents.

But I'm a UPSC sister who did not have abdominal radiation during initial treatment. I am no rocket scientist but I just don't get the logic of radiating without a specific target. It seems like the norm is for women to get abdominal and internal general radiation after or between rounds of chemo. For me this seems like shooting at a target in the dark - and OMG, the side effects!

My doc said that "there was no science to justify radiation" in my case. At first I was a little worried I was undertreated but in retrospect, I am grateful. My UPSC surfaced in a supraclavicular lymph node (surely far from abdomen) and this was successfully treated with radiation and chemo.

So be assured that not everyone gets radiation. I would make sure to have gyn-onc who would be up on the best treatment for you. Also check to see if a tissue assay/functional profile can be done at this point.

All the best, Mary Ann

new here UPSC stage 1 or 2 (no lymph node testing)
Thank you Mary Ann! Do you mind telling me how long you've had this, and what stage you were when diagnosed? How was your lymph node involvement found....by CT scan?
I do trust my gyn/onc, as she trained/worked at MD Anderson and uses the same protocol as them. The doctors over there told me that she's an excellent doctor. But at the same time I know this cancer can take unpredictable turns which makes it very troubling and worrisome. I will look for your thread.......and do take comfort in the fact you didn't have radiation and are doing well.
I will ask about a tissue assay/functional profile.....but need to read up on it first!
Thanks so much!

daisy366

sunflash said:

new here UPSC stage 1 or 2 (no lymph node testing)
Thank you Mary Ann! Do you mind telling me how long you've had this, and what stage you were when diagnosed? How was your lymph node involvement found....by CT scan?
I do trust my gyn/onc, as she trained/worked at MD Anderson and uses the same protocol as them. The doctors over there told me that she's an excellent doctor. But at the same time I know this cancer can take unpredictable turns which makes it very troubling and worrisome. I will look for your thread.......and do take comfort in the fact you didn't have radiation and are doing well.
I will ask about a tissue assay/functional profile.....but need to read up on it first!
Thanks so much!

Don't mind
In Sept '08 I was surgically staged at 3a, however PET scan showed lymph nodes lit up throughout my body. Subsequent PET scans always revealed something in my neck area which was discounted as likely "brown fat".

A year after completing chemo I found a lump in my neck. A biopsy revealed UPSC, we watched it for about 5 months while I had a strict anti-cancer diet. When my ca125 continued to rise my doc recommended chemo and radiation together. I completed that treatment last Nov. So far so good.

UPSC usually is a chronic cancer that tends recur. Hopefully there are treatments that will bring us back into surveillence again.

I recommend low stress, good mostly vegetarian diet, limit sugar, exercise, stay in present (not future or past) and sing or whatever brings you joy. Hopefully we will be blogging here for many years to come!

Peace and joy, Mary Ann