After 4 years in remission (measured from the day of surgery, per my gyn/onc) my CA 125 is slowly rising. My normal range was 9-13, since January it has gone 11-14-16-26 at three months intervals.
Since I just had a clean CT, my onc says we can repeat the CA 125 in two months, and if it is over 35 we will do a PET scan.
I know that the PET can detect things before a CT can. However, most ladies seem to be followed up with CTs. If there is activity showing on the PET, is that enough reason to start chemo, even if I feel fine, the CA 125 is relatively low, and a CT scan doesn't show anything? Would it not be better to just do another CT?
If the PET is clean, will they keep monitoring with a PET or CT? I just don't hear that very often.
I am trying to live chemo-free as long as possible/feasible.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
PET or CT?
- By Milashka
- Posted October 24, 2009 at 5:39 pm · 10 replies
- In Recurrence
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Constipation Irritable bowel syndrome Watchful waiting Ovarian cancer
10 replies
- Oldest first
- Newest first
- By jeaniet
- Posted October 24, 2009 at 7:26 pm
- Report post
Depends on doc and insurance. Some docs prefer PETS, others prefer CTs. Mine prefers PETS......he says "CTs are worthless." (his words, not mine) Also depends on your insurance. Some will not approve PETS at all. Others will approve it only after a consistent raise in CA 125 and a positive CT.
More women are probably followed with CTs rather than PETS due to the expense of PETS and the increased exposure to radiation.
However, there are recent studies that show that starting chemo based on a scan and not based on symptoms doesn't increase survival time. So more and more women are waitiing until symptoms actually show up.
In this disease there are many opinions, and not many consistent answers.
Jeanie
- By Milashka
- Posted October 24, 2009 at 7:51 pm
- Report post
Thanks! That makes sense.
Symptoms...I always have some, because I have irritable bowel syndrome-constipation, so bloating and constipation are daily for me and have been for many years, initially masking my ovarian cancer.
Also, once I know the CA 125 is rising, I suspect that I will have new symptoms every day :) I tend to worry.
But yes, I would hate to go back into the chemo while I am feeling good (I have been very active this year) and the scans don't show much, or much progression - I guess it will also depend on where things show.
- By lovemnms
- Posted October 24, 2009 at 9:10 pm
- Report post
"...Some will not approve PETS at all. Others will approve it only after a consistent raise in CA 125 and a positive CT..."
This is exactly what happened to me. CAT scans were paid for but not PETs. I was doing fine for 10 months, feeling great! My insurance co. refused to pay for a PET as long as I was NED. Of course now that I'm having a recurrance and my CA125 went from 13.8 to 60 they happily paid for a PET.
CAT scans are a great indicator but PET scans I think show more(detail).
I feel like we can't win no matter what we want or try. Currently, I am more disgusted than ever. If I had continued to be monitored every month rather than three months I believe my new problems would have been caught earlier.
BEst of luck to you.
- By Milashka
- Posted October 24, 2009 at 9:55 pm
- Report post
I think that's why he is waiting for the tumor marker to go above 35 - insurance issue. But that is fine. Actually, I am not sure I want the PET. Why not stick with the CT as long as I am symptomless? But I will discuss it with my doctor when the time comes.
- By FavoriteAunt
- Posted October 25, 2009 at 11:09 am
- Report post
My insurance pays for both CTs and PETs but my doctor uses CTs. The PET is more expensive and shows more detail than a CT. My doctor only uses PETs when there is a specific reason, not as a matter of routine. I once asked him why I didn't get PETs more often since some people seem to. He told me he doesn't want to expose me to excess radiation and will do one if it is called for. I've gotten one PET in 9 years - and that was to double-check one thing on the results of a CT scan following chemo for a recurrence. The CT reading was correct.
If there is activity on either a CT or a PET, it could signal the need for chemo. You'd probably be fine with just a CT. The key issue is how you feel and what your CA125 does. Wait and see what your next CA125 shows. If it keeps going up steadily, then you might have cause for concern. You can have a recurrence with no physical symptoms - that happened to me once - so the blood test matters. We all try to do the best we can and get the best treatment for ourselves, so I understand your concern. Hang in there.
- By Lemona
- Posted October 25, 2009 at 1:55 pm
- Report post
My CA125 is 247. I have minimal symptoms and some cancer shows up on the CT scan. My doctor and I are "watchful waiting." I see him once a month. I feel pretty good and am trying to delay chemo as long as I safely can. I'm with you on trying to stay chemo-free! Good luck.
- By Milashka
- Posted October 25, 2009 at 3:31 pm
- Report post
Well, I will ask him why the PET as he has never done one even when I asked for one. Maybe there is a reason that he hasn't shared with me yet.
When you got a PET, is it whole body or just chest-pelvis-abdomen?
- By jeaniet
- Posted October 25, 2009 at 4:21 pm
- Report post
Whole body.....ata least all mine were.
Jeanie
- By FavoriteAunt
- Posted October 26, 2009 at 8:51 am
- Report post
The RX sheet shows 'abdomen & pelvis" and "chest, Thorax" - I've always had both for any scan I've ever gotten. I always get contrast dye with the CT, and with they PET they inject you with nuclear medicine through an IV for the contrast. Your doctor will tell you what he's ordered.
- By MinnieM
- Posted October 26, 2009 at 8:56 am
- Report post
I asked my doctor about PET vs. CT.
1) PET shows activity at a cellular level; so, it discovers malignant activity before a CT scan would, but generally only by a couple of months. Since they don't start chemo right away anyway, he can't justify the excess radiation.
2) PETs are more expensive; so, for financial/insurance reasons some doctors are less likely to use them.
Add to the discussion