Uterine papillary serous carcinoma UPSC

[Helentess]

I'm new here. I was diagnosed with uterine papillary serous carcinoma (UPSC) at Easter this year. It is a rare type of uterine cancer. I had surgery in mid-May where I had all "lady parts" removed. During surgery the doctor found that cancer spread to the lymph nodes on the aorta. It did show on prior CT scan. My cancer doctor said they were too difficult for "him" to remove. It is stage IIIC2. He gave me 6 treatments of chemo at 3 week cycles. Chemo moved to 4 week cycle after 3 treatments because my body was not recovering white cell count fast enough. I had last chemo Oct 31 & CT scan tomorrow, Then waiting to see where the cancer is now. Our CancerCare does not do PET or MRI scans , only CT scans. Doctor said 3 possible outcomes. We are hoping for good news, but doc already scheduled 3 more chemo treatments as 4 week cycle is not effective in killing this type of cancer cells. The worse part is being bald with winter already here. It is so cold!!!

Also I did a genetic test for BRCA as this type of cancer is related to ovarian & breast cancer. My doctor said if I have the gene mutation, I may be eligible for new drugs that are effective in killing this cancer. Unfortunately my screen kit is sitting in -2O C temp in a trailer because postal workers are on strike. The sample will be damaged at this temp. So I will have to re-do the test next spring. Hopefully the situation will improve.

[RonLitBer]

Are you speaking about a blood test or a saliva test for BRCA 1/2? Where does it need to be sent? From where to where? Why spring? Do you expect the postal strike to go to spring? Just a bit unclear.

[Helentess in reply to RonLitBer]

It's a saliva test arranged through a Canadian research centre but genetic testing is done in a US lab. So my sample is sitting & waiting to be sent to the US. I mailed my sample when it was warmer but it got held up in the postal strike. Since a week ago, the mail is sitting in hundreds of trailers in below freezing temps. The saliva sample is not supposed to be stored at temps below + 15 C. It is now -15 C below zero. So my sample is damaged. I will have to redo the test in the spring when temps are much warmer for mailing the kit.

[RonLitBer in reply to Helentess]

I am in Canada and so am also affected by the postal strike. Where are you located? What research centre are you referring to? Ae you very isolated?

[Helentess in reply to RonLitBer]

It's the Screen Project. The website is "thescreenproject.ca", if you are interested. Anywhere west of Toronto is isolated. Just joking of course.

[RonLitBer in reply to Helentess]

I am in Toronto as well. Very amusing "west of Toronto". This program is really interesting. I have not heard of it before but it looks like a great idea. Hopefully more people find out about it and get tested. It is unfortunate that testing on the public purse is limited to particular narrowly defined parameters and I guess you do not qualify for OHIP coverage to get tested for the BRCA 1&2 mutations with papillary serous carcinoma. Seems a bit odd that you are responsible for mailing the kit yourself but I imagine here again it is all about costs. My own inclination would be to re-do the saliva test and send it by courier to Veritas. I believe that saliva collection kits are available with stabilizing solutions that make them stable for a longer time in regard to temperature so maybe you could ask about that. I would not wait till spring. Spring is such a long time off. They are talking about legislating the postal workers back for a short period of time (no doubt pressure is building due to the need for seasonal gift shipping). Also, hopefully the strike won't last that long.

[Helentess in reply to RonLitBer]

I was tracking my test kit & it made it to Orlando. That's the last place Canada Post can track it. I'll wait to hear from the lab before re-doing it.

[RonLitBer in reply to Helentess]

Sounds good. Glad to hear it.

[Bhuvank]

you will recover from these within a short period.