Post Tx Follow up schedule / PET vs CT / too many doc's & different opinions.

jim108

This is a bit complicated. I received my rad & chemo at Peace Health - St. Joe's in Bellingham Wa. I am followed by a surgeon at a 2nd place in Bellingham, Wa. (had my Tors / neck surgery in Seattle with a different surgeon). Finished treatments in early Dec 2021. PET in early April was NED & CT done yesterday was NED.

My rad doc & his team (they had their own practice inside the cancer center) left Peace Health and set up shop down the road. As the new rad doc's seemed more academic and I knew and felt mostly comfortable w/ him - I followed. I stayed w/ the ENT surgeon in Bellingham. Normally I was told that the the chemo doc falls off and it goes to the rad doc & surgeon, seeing one every two months for the 1st year, w/ the PET and the CT. A few months ago the rad doc said I only needed to be seen by someone every 3 months. The surgeon however wants every 2 months - which is what I'm doing. The chemo doc keeps trying to set up an appt which I've refused - and the nurse navigator said she would take care of it agreeing it wasn't necessary.

I started PT for my shoulder this past spring and it's been very helpful. I've got one more appointment. Recently my right SC joint (where the collar bone attaches to the sternum) has protruded. It started during PT. It's on the side where my neck had surgery and some of those muscles that were worked on connect to the collar bone. PT referred me to an orthopedic doc.

I saw my rad doc for something else and he wanted to talk about the SC joint. Told him what was going on, he said "it doesn't present as cancer" and offered an MRI - which I declined as I was seeing the ortho doc in a few weeks. He was good with that. He had ordered a neck CT which was his original plan for the year. I went to see the surgeon for my regular check in and he was very concerned and wanted a PET scan - despite what the rad doc said, better safe then sorry sort of thing and he was willing to see what the ortho doc said. In the meantime the chemo doc, who I don't see any more, put in an order for a neck & chest CT scan.

Ortho doc said he didn't think it was cancer, rather that it was a joint problem, and said so in his report. YET he said I should get the PET scan done as the surgeon wanted it and he would put in for it - YET I told him the surgeon would do so. (As a side note he spent 80% of the time talking to my wife and not to me - she picked up on it as well and agreed it was uncomfrotable. I plan to file a complaint or whatever).

Needless to say the PET was declined - after all they had notes from ortho saying it was an ortho problem! They said, reasonably, imo, that a PET scan should come later if there is a need.

While the rad doc only asked for a neck CT I went with the neck/chest CT from the chemo doc who isn't supposed to be involved anymore. Why not?

So, once again, despite the NED from the CT, I feel subdued. I felt this way after the PET and posted about it - feeling guilty that I shouldn't be more excited that it was NED. I think part of these reactions are due to the fact that the tests themselves bring me back to last year when all of this started and how overwhelming the diagnosis, treatments & recovery has been. Oh and my arthritis has gotten very bad since treatment ended. I guess this is known to happen but not discussed by the doc's much if at all.

And then there is the validity of using PET or CT for regular follow up at all. The rad doc said almost all of finding recurrences of this type of cancer comes from either the doc or the patient observation - not the tests. There is a review I found that shows PET/CT on 233 patients was not helpful and caused unnecessary tests and biopsy's etc. There is a new study (started 11/20 until 26, 27) looking at blood tests for HPV DNA as a way to monitor post treatment - scans may then happen depending on blood tests.

I plan to talk to the doc's about getting on the same page....but also don't want to alienate any of them - expect perhaps the ortho doc. I am grateful (yea I need to make a gratitude list) that I have doc's at all, so many people in the world don't have this kind of medical care....

Another thing I'm puzzling over is the HPV. From what I've read the body often fights off the infection itself. However the longer it stays in the body the higher the risk of cancer. There is also some work being done on a new vaccine that would eliminate existing HPV from the body. It's not clear to me if it's all HPV types or not.

I've started reading "The Emperor of All Maladies: A Biography of Cancer" by Siddhartha Mukherjee. It's really intense and I can only read a bit at a time, never in the evening. Awarded a Pulitzer Prize in 2011. (There is a 3 part - 6 hour documentary by Ken Burns on the book on PBS.)

https://www.amazon.com/gp/product/B003UYUP58/ref=kinw_myk_ro_title

Questions:

1. What has been your post treatment followup schedule after the 1st year assuming NED?
2. What has been your experience or thoughts on CT and or PET scan's for follow up?
3. If your cancer (HPV+SPSCC) has returned, how and when was it detected?
4. Can cancer treatment kill all the HPV in body?
5. Any other thoughts or advice regarding anything I've written about?

PS. I am very grateful for having you all here. Thank you.

wbcgaruss

Hello Jim.

My follow has been like you the chemo doc puts an order in each year for H&N and chest CT Scan with contrast.

I think they tend to get a PET within the first year or wait till the second year eventually being dropped and just getting the CT scans.

PET scans are usually done if they discover cancer verified with a biopsy. This is a whole body scan to see if you have cancer anywhere else in the body or only in one place.

My cancer either returned or it was new they think because it was in different areas. It was detected because the area was sore so I went to my ENT promptly to have it checked.

As far as cancer treatment killing HPV it is a virus in your body so cancer treatment does not kill it.

I found this on the net--

Does HPV go away after cancer treatment?

There is no treatment for HPV, but in most cases it goes away without treatment. Having HPV does not mean you will get cancer. Most of the time HPV goes away by itself. Certain people are at higher risk for HPV-related health problems. Jul 30, 2020

I have had cancer 3 times and my front-line guy has always been my ENT. in fact, I am seeing my ENT every 3 months right now because of an issue but hope to eventually go back to every 6 months after a while. In fact, in most cases your ENT eventually sees you once a year and at the 5 year mark quits monitoring you. And my scans each year are put in by my chemo doc. Not sure why but I assume it could be done by your ENT or chemo doc however they want to work it out. My opinion definitely stick with the CT scans once a year of the H&N area and chest. I am told if the cancer ever travels it is to the lungs usually so that is why they recommend a chest scan along with H&N scan.

I hope something here helped.

Take Care God Bless-Russ

jim108

https://csn.cancer.org/discussion/comment/1700661#Comment_1700661

thanks so much russ. I appreciate your input!