High CA-19 4,500

Posted by crickard70 @crickard70, Jan 25 10:07am

I recently had my pancreas removed and they said all cancer was gone. Follow up pet scan and blood work shows no infection, no cancer but CA-19 is 4,500. My doctor is confused and thinking he wants to do chemo as a preventative treatment. Does anyone think I should get another opinion? During my 3 years of pc treatments ca 19 was never over 600. Thank you

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ncteacher | @ncteacher | Jan 25 1:41pm

There are others on this board with experience after surgery. I'm not one of them, having been declared inoperable when I was first diagnosed. That said, if this were my situation, I would definitely go into chemo. And re second opinion, that's always a good idea. I hope you can move quickly to figure out your course of action.

nancyjane1 | @nancyjane1 | Jan 26 7:58am

I would require a Pet Scan in addition to the Ca19-9. You have not been given all the information, maybe?

crickard70 | @crickard70 | Jan 26 8:09am

In reply to @nancyjane1 "I would require a Pet Scan in addition to the Ca19-9. You have not been given..." + (show)

I had a pet scan one week ago and also bloodwork and the ca19 was at its highest.

nancyjane1 | @nancyjane1 | Jan 26 8:35am

In reply to @crickard70 "I had a pet scan one week ago and also bloodwork and the ca19 was at..." + (show)

You got lots of information to help you make decisions. Remember that ultimately you are in charge!

mayoconnectuser1 | @mayoconnectuser1 | Jan 26 12:17pm

I am not a medical professional, but will ask my usual question - are you being treated at a PC center of excellence?

A negative PET scan and a negative CT may not mean there is no cancer ... it sounds like there is still uncertainty - please be evaluated as soon as possible. Start over if you have to, but don't delay. Restarting chemo would be a first consideration for me. Please don't delay.

crickard70 | @crickard70 | Jan 26 12:53pm

In reply to @mayoconnectuser1 "I am not a medical professional, but will ask my usual question - are you being..." + (show)

I am at the Cleveland clinic and I am not sure if it is considered a pc of excellence. I am leaning towards the chemotherapy but not wanting to actually go through the side effects. Thank you

mayoconnectuser1 | @mayoconnectuser1 | Jan 26 1:06pm

It looks like Cleveland Clinic has numerous locations - is there one that is pancreatic cancer focused? Sorry - lack of knowledge on my part.

Which one are you being treated at?

gardenlady1116 | @gardenlady1116 | Jan 26 9:01pm

If your issues are not resolved with your current institution, you are not at the highest level of care yet. My sister lives in Michigan and went to Cleveland and has had a good experience there, however she would like an expert review of her treatment. I am being treated at MSKCC and I am so glad I went there. Based on my results of my ctDNA test, I was offered Lynparza. I think all of us would say pretty much the same thing--in this situation, make straight for one of the top tier cancer centers, MKSCC, Dana Farber Cancer Insitute, etc. I would also say "go to the Mecca" which is usually the flagship location of the institution. There might have been someone to see at the MSKCC location closer to me, but I am interested in the department head, not the associate, the assistant etc. The professor. If you are not sure about this, I might be able to assist with some research if the institution is not MSKCC. At MSKCC, hands down it is Dr. Anne O'reilly or my Dr. David Kelsen. Both highly expect and exceptionally nice. MSKCC is excellence, respect and compassion. I think you will probably experience that at the other top of the line institutions.