couple of questions: survival & avoiding radiation (x-rays, etc) post treatment

jim108

completed tx 12/21; SCC-HPV+,BOT - Stage 1; full rads, ended chemo 1 session early due to blood clots from the chemo and Tors on tongue & 21 lymph node dissection in neck.

The docs have said that if I get to the 2 yr mark (12/23) it is "exceedingly rare" for a return. Has anyone else ever been told that with similar circumstances?

Next rad doc said that I should avoid (or minimize) any radiation in my body going forward if possible. Well I was able to put off dental xrays for a year but just got a chest X-ray last week due to pneumonia. I said no to an X-ray on my thumb, got caught in a rat trap and doc was fine with that. I'm due to get a cardia stress test this summer which involves two sets of scans and an injection with a radioactive solution. (They actually give you a letter to carry in case you are going across the border in the next few days as you will easily set off the alarms - yikes).

So has anyone else had their docs say something like this? And is there any data to support this? Ironically this doc is all about the data but didn't have any to support this however on the surface it makes sense.

Lastly I really appreciated this site when I got sick and was in treatment. Thank you.

Jim

wbcgaruss

Jim, I hope you are doing well.

I don't have a lot to input here because I didn't have the same kind of cancer but I believe there are similar standards for most H&N situations.

As far as the 2-year mark that sounds reasonable since you were only stage 1 that's just my thought on it. I( had throat cancer and the estimated safe range they gave me was 5 years out. In fact, the way I understood from what they told me and reading on this discussion board at the time was generally 5 years was the gold standard for all H&N cancers and possibly for all cancers in general. Let's just say the farther out you get the better and more confident you feel.

As for myself, I have a different outlook on it as well as some others on here. You see I was just shy of my 5-year mark or had just made the 5-year mark from my first cancer depending on when you exactly mark and start and end of my treatment, either way, I was roughly 5 years out and got tongue cancer. There was a lady on my local cancer center H&N support group who was 8 years out and her cancer came back. So no matter what the statistics say if you are one of the ones that gets cancer again those statistics don't mean much to you. Reading this board here now for a number of years there are all kinds of variations on this number. We just had a guy check in on roll call that was 14 years out and doing great…

rush1958 Member Posts: 223 Member May 7 #35

Hi all! Just checking in. I'm doing well. Retired from the railroad
and moved to a rural farm community in Marysville, KS. Still NED after
14 years.

As for me and many on here once you have cancer for the first time that thought is always with you forever the rest of your life. For many of us since we got cancer we are never fully comfortable and after cancer and the brutal treatment and a year or more to get treatment and recover it is not easy to forget. I would say follow-up scans are less worrisome as time goes on. You know I just live on and don't think about it much. I know the possibility of getting it again is there but I also know there is an equal possibility I won't. I know I have been Blessed by God with great treatment options and a great care team and his great healing hand on me so I just move forward and try to help others in any way I can trying to do his will and being thankful. I always tell folks if no for the Grace of God I would not be standing here today. So don't concentrate on survival estimates just live life and be thankful for your Blessings.

As far as minimizing scans and X-rays, CT Scans, etc. that is something that we should normally do if possible. There is a lifetime limit on radiation. Here is a website "Know Your Dose" with a graph chart at the top and detailed coverage below it explaining everything. Radiation does not accumulate but affects tissue so they can only give you so much in any given area because it can make tissue less flexible and or pliable such as throat tissue getting stiffer can affect swallowing capabilities…

https://knowyourdose.ucsf.edu/how-much-radiation

Wishing You The Very Best

Take Care God Bless

Russ

jim108

thanks Russ, I really appreciate all that you do here.

Jim

wbcgaruss

Appreciated, Jim, it's nice to get some feedback now and then and know we are helping others.

I hope you are doing well these days and are enjoying life post-treatment.

Take Care God Bless

Russ