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Scans

Marynb
Posts: 1134
Joined: Aug 2012

I have a question. I am one year post trearment and I am seen at the hospital about every 10 weeks. I was looking forward to my scan this September, but at my last appointment, the doctors told me that the hospital is not going to do scans anymore unless there are symptoms. I am confused. I trust my doctors. On the one hand, I do not want to be exposed to anymore radiation. However, there would be some level of comfort having a scan show no cancer. They suggested if I could not deal with the uncertainty, I should see their psychiatirst. I found that so cold, and simplistic.

Has anyone else been told that there is a new protocol based on studies that show that potential harm is greater than the benefits? I am wondering what is happening with other patients.

I wish that I had found this site when I was in treatment.

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

Welcome to the site, however, I wish you didn't have a reason to be here. As for follow-up scans, the NCCN guidelines only recommend follow-up scans in cases of T3-T4 tumors or node positive cases. I would encourage you to go to their website (NCCN.org) and view these for yourself. This is probably the information your doctors are using to make this call. I don't necessarily agree and I feel as you do, that getting scanned periodically and knowing for certain that there is no evidence of disease is very comforting.

Marynb
Posts: 1134
Joined: Aug 2012

After my initial diagnosis of anal cancr, they did many more scans......because they found that I also had another cancer, which had spread to the lymph nodes. It was hard to diagnose, so they did some specialized scans. My second cancer is so rare, it is not even listed here.So, maybe they are thinking that my exposure has been so high. I don't know.

It is time to get informed and I will go to the site you gave me. Just reading the posts here is enlightening to me.I had a whirlwind of a year with treatments for 2 separate cancers. Reading these posts is making me connect the dots with all the post treatment symptoms that I have been experiencing. I am not back to myself at all and I wonder if I ever will be.

I have some reading to do. Thanks. I may have a lot more questions as I try to learn more.

Marynb
Posts: 1134
Joined: Aug 2012

I went to the site and they required a great deal of personal information, which I feel is intrusive and inappropriate. What is the deal with this organization? Is there a way to get into the site without giving out all that information?

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

Unfortunately, registration is required to access the treatment guidelines. I think one reason for this is so that people who are just curious don't get on the site. It is maintained for doctors and those currently undergoing treatment.

I'm sorry to hear that you have been dealing with another cancer as well and that CSN does not have a support group for that disease. If it is considered a rare cancer, you might find support on Rare Cancer Alliance. Google and you'll find it.

Phoebesnow
Posts: 451
Joined: Apr 2011

Maybe he will approve a ct scan?

Anyway I wonder about the value of these pet scans. My last scan had uptake in three different areas none in the anal canal. But yet they say it is ok? Of course I am worried but yet I have to live my life.

I am leaving for London and Rome on Tuesday. I am excited.

mp327's picture
mp327
Posts: 3076
Joined: Jan 2010

That's wonderful! Have a great trip!

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