Cancer Survivors Network

I thought I would share the results of my consult with another gyn onc this week. This is probably mainly only relevant to those experiencing recurrences.

I wanted a fresh perspective on treatment options as well as seeking a more positive relationship that would provide a better sense of confidence in managing my cancer issues. I have been dealing with UPSC recurrence in lymph nodes for 2 years, treated with chemo throughout 2010 and this past summer with palliative radiation to supraclavicular nodes. My issues have been that my gyn onc seemed to believe I had outlived my statistical life expectancy so QOL should be my focus. When I commented that I felt since recurrences are all in lymph nodes with no other evidence on CT or PET of any other tumors or organ involvement that should be construed as a better case scenario, his response was that I had cancer everywhere in body and scans just don’t show everything – ‘if it is in your lymph nodes then it is everywhere.’ This just created an image in my mind of cancer running rampant throughout my body and was quite distressing. He was quite off hand about what chemo regimen he would recommend with the comment that they all only carry a minimal expectation of being effective.

This week’s consult was quite refreshing and although the dr never discredited anything the prior gyn onc had said – indicating it was probably just his manner of explanation/attitude that was the issue. And so it may be, but I’ll definitely go with someone who seems more engaged and believes in the possibility of there being more options available and with potential to be effective. Additionally, he said if he was in a situation of having recurrence only in lymph nodes vs. in lung, liver, tumors in abdomen, etc., he would so want it to be the lymph node scenario. It is when there is demonstrable organ involvement that things get serious. He believes each patient will follow there own path through this disease and how long that path may be, is completely individual and unknown.

We have agreed that unless anything changes (symptoms arise) that I will do a new PET/CT in January and we will decide on options at that time. Since I am essentially without symptoms there is no reason to start chemo asap especially as we head into the holiday season. He noted there are simply no definitive studies that overall survival time improves by starting chemo prior to being symptomatic. However, he also agreed that if I feel more comfortable getting chemo started we can go that route as well. I will probably be ready to do so as there is a stress element associated with being aware of the cancer progress and not treating it. That is what I did in Jan ’10, after having a positive lymph node biopsy in Oct ’09 – I was a lot more stressed back then and little could I have imagined that 2 years later, not only would I still be here, but would be pondering the very same issues!

On a different note, he kept describing my cancer as ‘ovarian’ which my original gyn onc also did, but my recent gyn onc insisted on calling it uterine. How it is coded can determine eligibility for clinical trials, approval of certain medications, etc. I asked him to clarify, and he had just gotten the papillary serous description mixed in his mind with ovarian. I noted that my differential diagnosis was endometrial vs. ovarian vs. primary peritoneal by the pathologist. I had my path report with me which noted that no cancer found in the uterus, neither then at debulking surgery nor with a D&C for uterine bleeding 2 years prior to that. He is not convinced I even have uterine cancer and it could be primary peritoneal. He may consider having slides sent out for review. Due to that common histology of all three types, treatments are essentially the same, so it really has not led to any erroneous treatments.

Sorry for such a lengthy post but thought the info could be helpful to others in a similar situation.

Annie