Treatment ended - Now what?

pacificnw

I am curious about people's stories regarding follow-up news after treatment ended. Wondering about timelines, what type of testing was done, and information about results. I feel like I'm floating in limbo a bit. Any stories would be appreciated!

mp327

pacificnw

I am 9 1/2 years out of treatment, so I'm a little fuzzy as to all of the details of my follow-ups.  But, as I recall, my colorectal doctor saw me every 3 months for awhile ( possibly the first 2 years post-treatment) for DRE and anoscope.  Eventually, it was every 6 months, then once yearly.  She performed colonoscopies annually for the first 5 years post-treatment.  I will be seeing her again in September, at which time I'm sure she'll want to do another colonoscopy, as it's been 5 years.  My first medical oncologist was a very big fan of scans, so I had numerous PET and CT scans for several years and always saw him a week or so after the scans to discuss the results.  Unfortunately, he passed away in December 2015, so my case has been taken over by one of his colleagues, who has seen me yearly for the past 3 years, just for blood work and abdominal palpation.  My radiation oncologist saw me for the first 2 years post-treatment for DRE and abdominal palpation, then discharged me from his care.

I will have to say that I may have been followed more closely than a lot of people, especially with all of those scans, which I no longer get, thank goodness. 

As for what kind of follow-up news I received, my first scan post-treatment showed that there was residual tumor present.  Thankfully, the radiation continued to work and it melted away what remained.  It seemed to take years for my blood work to return to normal, especially my white blood count.  In early 2013, I was hospitalized for an intestinal blockage, which resolved on its own.  It's felt that I probably have adhesions, due to the radiation.  I have experienced malabsorption syndrome, which thankfully, at the present time seems improved.  In December 2016, I was diagnosed with Stage 3 Chronic Kidney Disease, which has improved to Stage 2.  It was most likely caused by the cancer treatment.  Also, possibly caused by the radiation is my osteoporosis, present in my hips, diagnosed a couple of years ago.

Yes, all of that has happened to me, yet I am here and I feel pretty good in spite of it all.

pacificnw

Just got my results back which give me more questions than answers. like what does "crushed mean & why? From what I read "crushed cells" are to be avoided as they can spread the cancer cells? I'm freaking out a bit.

 "Rare crushed atypical cells. This means the cells were not "normal" but not diagnostic as cancer."

Jane s

Post treatment

I finished treatment Jan 2017, so is been a little over a year.   I was stage 3b, 7 cm tumor and lymph nodes.   I also had ulcerative colitis,  so there was worry that the radiation would cause irreparable damage to my rectal area.   I've had sedated anoscopies and ct scans every 3 months,  and the last time had a pet scan.   So far there has been nothing except once some AIN 1 lesions that they removed.   I have another scope/scan coming up in April,  if it's still all clear,  they will start doing them every 6 months.   That was the best news the doctors have given me so far.   Every time you have a clear scan,  your chances of survival go up.   I try to take really good care of myself,  good diet,  exercise,  sleep,  not stress,  prayer,  meditation, yoga, etc, because all of that will raise my chances also.  A positive attitude is important also,  which doesn't come naturally for me,  ha, but I try!   I'm having a colonoscopy in June,  but that is because of the UC, has nothing to do with the cancer.   I'm almost looking forward to it.   

I've never heard of crushed cells. But if it's not cancer, I wouldn't worry.   They will be keeping such a close eye on you that nothing is going to turn into cancer,  they will get it before it can.  At least that's my attitude. 

I'm glad you found this site,  its been keeping me going.  Good luck

mp327

pacificnw said:

Just got my results back which give me more questions than answers. like what does "crushed mean & why? From what I read "crushed cells" are to be avoided as they can spread the cancer cells? I'm freaking out a bit.

 "Rare crushed atypical cells. This means the cells were not "normal" but not diagnostic as cancer."

pacificnw

Atypical cells look different than normal cells.  However, that does not mean that they are cancerous.  You need to discuss these findings with your doctor.  Please let us know what he/she says.

Scubajoe

pacificnw said:

Just got my results back which give me more questions than answers. like what does "crushed mean & why? From what I read "crushed cells" are to be avoided as they can spread the cancer cells? I'm freaking out a bit.

 "Rare crushed atypical cells. This means the cells were not "normal" but not diagnostic as cancer."

Pacificnw,

Pacificnw,

   Did you get any more informatiion from your doctor as to what crushed cells mean?

 

Thanks

 

Joe

 

Tclark7

Treatments Ended What's next

My treatments ended on 3/14/18.   I will see my Oncologist and Radiologist in 4 weeks and the follow up with my Colorectal doctor in 8-10 weeks.  My radiologist said I would have another PET Scan in 3 months.  I hope this helps and God Bless you as you heal.

Wisteria83

Follow Up

I guess we are all different as far as follow up is concerned.  Three months post treatment I had a DRE which was pretty painful as was the vaginal exam both with and without the pedi speculum.  Then three months after that, I had a PET scan and anoscopy.  I'm supposed to get PET scans annually for the first three years, and it seems like my oncologists are doing 6 month check ups which alternate with the anoscopies, so basically, I'm being seen every 3 months by somebody.   I'd rather do it this way, even though it seems like I'm always going to one doc or another.  It makes me feel like if something should change, one of them with catch it before it becomes worse.

In between, I see pain management every month at minimum since I'm on a regular narcotic regimen for pain that has nothing to do with the cancer, and getting steroid injections in my neck for radiculopathy, and I'm seeing my PCP for everything else.  I'm supposed to see a psychiatrist, for anxiety and depression, but decided to wait until I move in May since I don't want to start something here and then have to go through it all again with a new doc when I move.   

Ohmy

Great advice from Jane S.  I

Great advice from Jane S.  I was diagnosed January 6, 2017 with a 3 cm tumor, stage 3 with  a couple affected lymph nodes near the tumor.  My treatment ended March 17, 2017.  My first PET scan June 2017 was NED.  I pretty much see a doctor every three months for a DRE.  My PET scan in December was NED.  I had some bleeding in February 2018 so I had a sigmoidoscopy.  No cancer but a couple of hemorrhoids were banded.  No problems since then.  I just had another PET yesterday and I see my radiologist oncologist next week for the results.  I try to eat healthy, get plenty of rest, and keep a positive attitude.