Post TX questions

I had two follow up appts with rad onc and since I didn't particularly care for him I asked my med onc if I needed to see rad onc anymore and he said no. I see med onc and colorectal dr every six months.

Seeing doctors are a way of life for anal cancer survivors.  I was Stage 2.  For the first two years I saw radiation oncologist, chemo doctor, and colorectal surgeon and primary care doctor every 90 days.  Then they went to every six months for a year.  I am a little over four years post treatment and see chemo doctor and colorectal surgeon once a year.

Hope this helps,

Mike

I am 1 yr. 7 mo. since diagnosis.  I saw 2 radiation oncologists, plus the medical oncologist and liver surgeon every 3 months, then it was narrowed down to 1 radiation oncologist, medical oncologist and liver surgeon every 3 months.  I have cat scan every 3 months.  Blood work every 6 weeks.  For me the more doctors, tests the better.  It brings me comfort because of the worry I have of reoccurance.  I don't know if it makes any difference what stage you are at diagnosis.  I am stage 4, so maybe that is why they want to keep closer tabs on me.

Marynb said:

Omg
Hi. I saw the oncologist, radiation oncologist, and surgeon every 3 months for first 2 years. Now swithcing to 6 months. I have had no scans. For some reason doctors feel scans are too harmful and the benefit too low. I have a second cancer. Maybe they figure that I am dying anyway?

I've been told that I'll need a PET scan in four months but I've already told my doctor that that I'm not having any more PET scans for the very reason that you mention. If I receive a radioactive dye that dictates that I stay away from other humans for 7 hours, I don't see how that's ok for me.  Everything is a cost/benefit assessment and I see no benefit to submitting myself to more radiation.  I've told my gastroenterologist that she's welcome to do as many biopsies as she wants, as often as she wants, but more PET scans aren't negotiable. In any case, because of personal decisions that I've made, a PET scan isn't necessary.  Some patients are comforted by their doctors taking the reins and making the decisions. Some ara appalled by that and ask questions, challenge recomendations and don't simply do what they're told.  As I'm sure most readers have figured out by now, I'm the latter of the two and can tell you that it doesn't endear me to many doctors. That said, I have an excellent, personal, mutually respectful and rewarding relationship with my gastroenterologist who I adore. She isn't put off in the least by a patient like me.   As for the other two, the medical and radiation oncologists, they're history.  

Marynb said:

LaCh and Lorikat
Well, the doctors told me that a risk/benefit analysis showed that more scans have great potential for harm and they will not do more scans unless absolutely necessary. There was a study that came out a year or so ago? In some ways scans would give me more peace of mind, but I still have the dre and scopes, so I feel ok with it. I never needed a scan in the initial diagnosis. The tumor was identified by exam and biopsy. I wish there was one standard if care regarding follow up. Lorikat, let me know what they say.

Just to clarify, I have scans every six months and have been on the six month scan routine since the end of year one. Agree that so many scans can be dangerous.  Catch 22 for me. Since it was in my lymph nodes I am at risk of it spreading to liver and lungs.  The scopes examine the original site only. 

Liz

Marynb said:

Omg
Hi. I saw the oncologist, radiation oncologist, and surgeon every 3 months for first 2 years. Now swithcing to 6 months. I have had no scans. For some reason doctors feel scans are too harmful and the benefit too low. I have a second cancer. Maybe they figure that I am dying anyway?

I'm still at wk5 for first chemoradiation at MDAnderson. I am being scheduled for chest/abdomen/pelvic CAT scans every 3 months. This is disturbing to me as well. But MDAnderson dismisses my concerns......there are some lung opacities which they want to monitor for change, my benign thyroid nodules have been changing size as well.....I'm t3n0m0 so far but that is all speculative as there are hundreds of lymph nodes and changes can be microscopic not visible on CAT scan or any other scan......

I'm quite uncertain about agreeing to q3mos scans....and I have to travel 200 miles from home to get to MDAnderson in Houston, so appts are not easy or cheap, as they involve hotel stays......I see no reason for being seen by radonc and surg and medonc and anybody else only to be told face to face results of cat scans.....I'm wondering if I can have a cat scan at home and then make appts for one day to review results. MDAnderson wants to do all inhouse as they do not trust "outside" scans. Isn't a scan a scan a scan? Not much individual discretion in the scan machine, I thought, unlike the radiation machines.

I'm surprised Mayrnb that you haven't had any post Tx scans? would the scans have picked up the second tumor sooner?

NYinTX said:

Marynb scans

I'm still at wk5 for first chemoradiation at MDAnderson. I am being scheduled for chest/abdomen/pelvic CAT scans every 3 months. This is disturbing to me as well. But MDAnderson dismisses my concerns......there are some lung opacities which they want to monitor for change, my benign thyroid nodules have been changing size as well.....I'm t3n0m0 so far but that is all speculative as there are hundreds of lymph nodes and changes can be microscopic not visible on CAT scan or any other scan......

I'm quite uncertain about agreeing to q3mos scans....and I have to travel 200 miles from home to get to MDAnderson in Houston, so appts are not easy or cheap, as they involve hotel stays......I see no reason for being seen by radonc and surg and medonc and anybody else only to be told face to face results of cat scans.....I'm wondering if I can have a cat scan at home and then make appts for one day to review results. MDAnderson wants to do all inhouse as they do not trust "outside" scans. Isn't a scan a scan a scan? Not much individual discretion in the scan machine, I thought, unlike the radiation machines.

I'm surprised Mayrnb that you haven't had any post Tx scans? would the scans have picked up the second tumor sooner?

 

 

 

As I understand it (and I'm not a doctor, just an attentive patient), a scan is not just a scan. The doctors rely on the radiologist to read the scan, thus having it done at MD versus another facility may be of importance to them. Also important is the capability of those performing the scan. One radiologist may not be as capable as the next in capturing the necessary information.

As to Marynb's secondary cancer (which, Marynb, I hope gets resolved without additional pain or trauma or anything of the sort), I think it would depend on where it was. The catscan and petscan are localized and if the secondary cancer was outside of the scan area, no, it wouldn't have been detected.