ro, wondering re: your 2 september post, rising ca 125 and clear ct scans

nancygt said:

Pet Scan
I had CA 125 that was quite high at diagnosis - over 500- and it came down steadily over 8 months of treatment (surgery, 2 chemos, and 2 radiation) -all the way down to 9 which I celebrated. 6 months later it was up to 179 and they did CT scan which showed suspicious mass and followed up with PET scan which showed tumor in para-aortic lymph node near liver. It was difficult location to get needle biopsy but they persevered under CT machine and then I had 6 weks of tomotherapy and this July I had clean PET scan and CA 125 dropped to 90 at that first follow up (since I had a significant rise my doc tests every 3 months as early warning). Since radiation does continue to work, my last Ca 125 was 59 and my doc cautions that is probably the low as after a recurrence it rarely drops back to normal range.I am headed for test today and anxious to see what it says - I am hopeful that next recurrence will not be so soon as I understand first one at 6 months after treatment is not particularly unusual with stage 3 (I wonder if I was stage 4 all along as surgeon did numerous lymph gland sample in pelvic area but none in para aortic which is likely first spread and sometimes being sampled now).
I am also curious about Medicare and scans and will probably post there as well. It may be that you have to have CT scan first before PET and CT does not show activity as small as PET scna does. I was also interested in the doc that got PET scan approved since UPSC is more similar to Ovarian than Uterine and apparently Ovaian is on Medicare's approved list. Medicare only approved PET scans in general less than 2 years sago and if political environment were different, perhaps we could lobby. But I am convinced early warning from CA 125 was valuable to me because first PET scan and then one 3 weeks later to do computer plan for Tomotherapy showed that metabolic growth rate had doubled and it was imperative to start treatment immediately.
I will post results when I receive them as it may be helpful to survivors who did have rise in CA 125 previous and it does show that it does go up at secondary site.

CA 125 Wondering
I'm wondering how many others are out there whose CA 125 is not meaningful for them. Mine has never gone over 7...not at all helpful considering my current level of disease.

Peace and hope, JJ

maggie_wilson said:

hi nancygt

thanx so much for your post. my last ca 125 was 21, before that 18 and before that 11, so a slow steady rise. one doctor is concerned about it, and the other is not. this last ca 125 was 6 months ago mid november. i also had a ct scan which showed a slightly enlarged para aortic node., that was also 6 months ago. my doctor fought to get a pet scan for me and was successful, after two tries, so i'll have my ca 125 first, then depending on the numbers, or maybe no matter what the numbers, i'll have a ct/pet scan. the ct scan was also 6 month ago. i had one very large surgery a year and a half ago, and then 6 chemo infusions for a total of 18 weeks. no treatment for a year in november. almost feels normal. so i'm not looking forward to any tests of any kind next month. i do have upsc, which is why my doctor had to fight to get a pet scan. i also have medicare, but only part a, so that doesn't help with anything but hospitalization.

neither of my doctors suggested a needle biopsy, nor did i want one. if it is cancerous, i don't want them poking around in there, though i certainly understand why one would want one. from what i understand, the ct scan shows a mass, but doesn't distinquish what it is, while a pet scan shows metabolic activity, not necessarily cancer, but probably, i imagine. also, imflammation, etc.

from what you wrote, tomotherapy is some kind of radiation?? i haven't heard of that. could you explain that more??

looking forward to hearing from you
sisterhood,
maggie

tomotherapy/imrt
I use tomotherapy because my doctor uses that term and they are largest manufacturer of the equipemnt - I believe the correct name is intensity modulated radiation therapy and it really has developed in last 5 years. I enjoyed reading a lot about it online because quite a few people were told to "get their affairs in order" and then got this treatment and are surviving. My doctor told me it is one of the treatments extending life for "chronic" cancers and says it is one reason they can hope to extend survival rates well beyond the old ugly statistics for UPSC. It can deliver a high intensity dose to the tumor while far less radiation to surrounding organs. With my para-aortic tumor so close to aorta, he told me they might not have been able to do the radiation 5 years ago.He told me it took the computer 35 hours to set up my treatment program-he showed me the book with all the calculations but I will admit it was too complivated to follow. But it got the tumor and PET scan 2 months later was clean.
You are right that CT scan shows mass and a suspicious mass was found at my first 6 month check up CT scan. They did a PET scan and it lit up at the para-aortic site. Decision was made to use the imrt and I even made quick trip to MD Anderson to get second opinion and they agreed.They did a second PET scan 3 weeks later and the metabolic rate had doubled so we began treatment immediately. My doctor would prefer PET scans every 6 months so I am trying to understand Medicare postion as I will have to accept Medicare as primary based on reading fine print in employers program.
In a way. it is an additional early warning to have Ca 125 rise but today I am somewhat upset-I stopped by my oncologist and got bloodwork showing CA 125 had risen from 50 (we presumed that to be my "new normal" after treatment) to 100. I could not talk to him as he is out until next Wednesday but am concrned as we had not planned another blood test or PET scan until January.I know your doctors disagree about whether small rises should cause concern but another oncologist told me small fluctuations are likely from one test to the next so I would not be overly concerned. But that same doctor told me that doubling is never good.
I will try and remind myself too that this doctor told me (when I asked the question) that his personal best survivor period for USPC patient was 8 years and still going and he would be disappointed if I did not get 8 years or more. Although the cynic in me says oncologists get disappointed regularly, the hopeful person inside at war with the cynic says "Wow".