I am 6 mos post chemo for III c PPC. Chemo went well and my CA125 is down to 1 from 32,obviously not a good marker for me. My debulking in Jan 2009 was optimal at Mass General Hosp and I had a clean CAT scan 3 mos post chemo and my GYN/ONC does not need to see me till Feb 2010,but I thought I would have a CAT at 6 mos post chemo which is Oct or Nov. I spoke with her nurse today and she said I may not even have one in Feb 2010. Originally she had said I would be scanned every 3 mos for at least the first year or so. I really respect my gyn-onc,but I am so nervous to wait longer than 6 mos. I know the contrast has its own set of problems,but I am afraid every day. I always feel some type of pain or other in my abdomen and I was feeling a sense of relief that I would be having a scan soon. Now I am so nervous again. She is the Doctor and certainly knows more about this than I do,but it never takes away the fear. Why do they tell you one thing and then change their minds.My 24yr old daughter Sarah is getting married in June and if they see something in April or May I could ruin everything. This may sound crazy,but this is one of the things in my life that gets me through. I don't want to be the cause of any more disruption or pain. My children have been through enough.Could some of you weigh in on how freq you are scanned and if you feel I should push for a scan soon.
Thank You
Ansophie
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No CAT scan for 6 mos maybe more
- By Ansophie
- Posted October 20, 2009 at 6:21 pm · 14 replies
- In What, me worry?
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- By lifeisgrand
- Posted October 20, 2009 at 7:02 pm
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My surgery was about a month after you, Feb 19, 2009. I completed my chemo at the end of July and had a scan three weeks later. The plan at this point is to do another scan in about 6 months. I see my oncologist every 2 months with lab work and my surgeon said as long as I'm seeing the oncologist and the lab work is okay then I don't need to see him until six months. I do have my regular gyn visit in early Dec so will also have a pelvic exam then. So it sounds pretty much the same as what you'll have. I do think they sometimes do less if everything looks good and what the "normal" post chemo treatment is depends on each specific situation.
- By lifeisgrand
- Posted October 20, 2009 at 7:02 pm
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My surgery was about a month after you, Feb 19, 2009. I completed my chemo at the end of July and had a scan three weeks later. The plan at this point is to do another scan in about 6 months. I see my oncologist every 2 months with lab work and my surgeon said as long as I'm seeing the oncologist and the lab work is okay then I don't need to see him until six months. I do have my regular gyn visit in early Dec so will also have a pelvic exam then. So it sounds pretty much the same as what you'll have. I do think they sometimes do less if everything looks good and what the "normal" post chemo treatment is depends on each specific situation.
- By Ansophie
- Posted October 20, 2009 at 8:24 pm
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Thank you for writing back. I do think you are right. Everything looks good and I do feel well as long as I don't think about it too much. I can come up with symptoms though if I think too hard about it. I guess we all could do that. Maybe I'll just let it be for now. My medical oncologist seems to feel ok with no scan now,but he would do one in Feb. Hopefully it will all work out. I appreciate all the help I get on this site you are all wonderful.
Thanks,
Anne
- By AuntPaula
- Posted October 20, 2009 at 9:19 pm
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Is it the nurse or the doctor that says you don't need a CT scan until 2010? If it is the nurse, I would make sure you talk to the doctor. According to my doctor, you should have one six months post chemo.
- By AuntPaula
- Posted October 20, 2009 at 9:19 pm
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Is it the nurse or the doctor that says you don't need a CT scan until 2010? If it is the nurse, I would make sure you talk to the doctor. According to my doctor, you should have one six months post chemo.
- By youngmom
- Posted October 20, 2009 at 9:50 pm
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I finished treatment in April 2008 and had a scan in August 2008, and then I didn't have another one until August 2009. I think as long as your labs and check-ups are fine and you don't have any symptoms, there is no need for CT scans too often. In fact, I have told my doctor I am fine going longer than a year. CT scans give off 10,000 times the radiation of single x-ray, something we should try to avoid. I know recurrence is something we always think about, but I'm not sure there is justification for frequent CT-scans.
- By FavoriteAunt
- Posted October 21, 2009 at 7:48 am
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I'm also IIIC and had 1 CT scan prior to surgery and then went into a long remission (6 years) after chemo and never had another until I had symptoms for a recurrence.
I had a CT scan to confirm my first recurrence and another, plus a PET, at the end of that treatment when I went into remission. The remission only lasted 10 months and I had another CT scan to confirm my second recurrence last fall. I've had 3 CT scans this year to check on the progress of the different chemos I've been on since I can't get back into remission.
In general, my doctor uses a CT scan to check symptoms and followup on chemo progress. He normally does not use them as part of my checkup routine when I am in remission since the CA125 is fairly accurate for me. He says he can go by that and what I tell him, and doesn't like to expose me to extra radiation if it is not needed. When in remission, I usually see him every 3 months.
Try not to get caught up in the scan thing. Your doctor might be satisfied with your progress and if you are feeling good, she might be right. And I know it is easy to worry about every ache and twinge, but I've learned that you can usually tell the difference from something temporary and something that is trouble.
- By Leslie4999
- Posted October 21, 2009 at 9:26 am
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I finished my chemo in February 2008. I have had a CT scan every three months since that time. It is something that I requested and my oncologist has agreed to this. I will start having CT scans every six months once I reach the 2 year mark. I have the clear cell type and can be very aggressive. So far, so good. The CT scans give me a peace of mind. I think if you tell them what you want, they might accommodate your request.
- By barbjh
- Posted October 21, 2009 at 5:35 pm
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every 3 mos. right after chemo and then every 6 mos. after that. i think i would find another dr
- By Ansophie
- Posted October 21, 2009 at 8:48 pm
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Thanks so much for all the input. My medical oncologist called and he will do the scans every 3 mos if I want,but feels 6 mos would be better,unless I have persistant symptoms. He does not always agree with my gyn/onc,but in this case he does.He feels as though the CAT scans and contrast have their own set of issues, so the fewer the better. Thank you again.
Blessings to you all.
Anne
- By verlinda
- Posted October 22, 2009 at 12:46 am
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Remember that radiation can cause cancer, ladies.
I had clear cell, too, but I was only Stage 2. I had a CT-scan 3 weeks after finishing chemo, then another one in 6 months. It seems like I had one more, but I've had a few for an ongoing shoulder issue, so I'm beginning to get confused.
Both my old and new oncologist said they'd order them if I was worrying too much, but wouldn't normally recommend them in the absence of symptoms.
My theory is that I don't want ANYTHING I don't have to have near defective cells. I just want them to hide in a little corner and die violent deaths.
Ansophie, did the fact that your CA125 dropped mean anything to the oncologist? My highest was 82, but my oncologist said it was still valid; I just had to remember that it meant smaller increases (not 2 or 3 points, though) might be significant.
- By Ansophie
- Posted October 22, 2009 at 5:06 pm
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Yes, my Doctors are happy about my CA 125 being 1,but have said from the beginning that it is not the best indicator for me where it was never that high. If it were to get into the double digits they would probably take a look again. Seems there are so many differing opinions among the Docs. As I said I think I will leave it alone for now and hope I have a CAT in Feb. I hate having them,but a clean one really puts my mind at ease. Thanks for your input.
Ansophie(Anne)
- By kennebec
- Posted October 28, 2009 at 3:34 pm
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Ansophie, you mentioned pain in your abdomen. For several months fter my debulking in January 2009 my insides felt taut. Standing I was okay. Lying down at night was when I noticed the weird feelings...sorta uncomfy, not pain. Just taut. That's the only word I can use to explain it. I joked that it was because the gyno/onc/surgeon took my intestines out, tied them in three surgical knots and then placed them back in place, knots and all. (wry smile)
A couple months ago I began to notice almost painlike discomfort in my upper right ab, just under the ribs and sometimes under the left ribs as well. Mostly at night. My Onc put me on prilosec which has helped tremendously. What I feared was a return of cancer may have been only acid indigestion which may have been activated by the chemo. I plan to go off the prilosec once I finish this second 2-week supply and see if the acidity returns. I'm beginning to think, reading on this site, that heartburn or acidy stomach is a by-product of the chemo...even though it didn't activate for me until the chemo was finished.
My CA-125 hovers at 41, this last time was down to 37. I'm getting regular CT scans, ever 3 months, because I am on a clinical trial and that is evidently the protocal for the trial.
God bless you!!!! And the rest of us as well!!!
- By Milashka
- Posted October 28, 2009 at 3:59 pm
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I had a CT prior to surgery, after my last chemo treatment, another one 6 months later, another one 6 months past that, and then he said no more scans unless the CA-125 goes up or I have symptoms. I was fine with it, I hate those scans with a passion.
I then had vague pelvic/bladder pain 2 years after the last CT and he immediately ordered one, it came back clean (turned out to be a bladder infection). Actually, it showed a little something on the liver that had been there for years but the radiologist thought we should do another scan in 3 months. My oncologist thought 6 months was safe. In the end, we both agreed on 9 months :) I drive a hard bargain! That scan was 3 weeks ago and it was clean.
At one point I had a lot of headaches, and he ordered a brain MRI. He doesn't hesitate to go to these scans if needed, but doesn't order them as routine follow-up.
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