First Post-Treatment Follow-Up

Suz, I typed a long reply to you and promptly lost it; first of all, well done you - it must have been wonderful to get back in the saddle.  My riding experience extends to a donkey-ride by the beach in North-East Scotland but we kids loved it none-the-less!

I just wanted to commiserate with you about PET scans after treatment; there doesn't seem to be a hard and fast rule here in the UK and of course in the States you are dependent on your insurance company.  I am being treated by the UK's leading cancer hospital and at my last appointment in September, I had MRI and CT scans.  I asked the oncologist why no PET scan and she told me they use a PET scan to determine treatment but follow-up checks are done using MRI and CT scans.  There are so many conflicting opinions online that made me even more anxious so I stopped reading them.  My next scan is before Christmas, I have cancelled the following appointment until the New Year, in this instance I would rather not know.

No sausage fingers - you must be thankful for small mercies!  Is your pain due to sensitive skin or piles?  Mine is due to piles and I am waiting to see a consultant and if they will do anything.

Will be thinking of you and all these upcoming appointments, let us know how you get on.

Irene xx

Ha ha, Dr. Sausagefingers is the one in January and I'll be posting in mortal terror here when that one is nigh!

I did have some piles pop right back up after my ghastly hemorrhoid surgery in March '21, so I'm not sure if the pain is caused by them, or just from tender skin. Or who knows what. I've named my various pains- there's the Stabbity, the Fires of Hell, the Demon Itch and the Plain Old Sore. I've got different meds for each one, but it's been almost exclusivity Plain Old Sore of late, so I think/hope it's just pushing myself. 

I never had any remote clue how many muscles are attached to the anal area. EVERYTHING affects my behind!

Thank you so much for the kind words.

Suz

Hi Suz,

CAT scans seem to be the norm for post treatment. In fact, I was at the point that my doctor wanted to move me to yearly scans and I freaked out about that. We ended up compromising and going with 6-months and then moving to a year. My doctor did warn me about the fact that I've received a lot of radiation from my scans and they need to also consider how this will impact my health moving forward. Being in my forties, this does concern me, but having cancer seems like a bigger deal!

It wasn't until my surgical oncologist felt a small flat mass around 17-months post treatment that I then had a PET scan. The scan not only picked up the cancer recurrence (I had no symptoms at all) but also some other "lighted" up areas that required two additional MRI scans and lots of worry. It ended up those other areas where nothing. Seems like the PET scans are rather sensitive and do give you a ton of radiation.

Moving forward, I just have to trust that the CAT scans are doing their job and if my doctor feels there is a need for the additional scans then they will order it. I'm not sure this helps to ease your frustration at all. 

Congrats on being 7-months cancer free! That's awesome! Continue to have hope!

Hopie xx

Thanks, Hopie, I do have to hope and believe that cancer doctors would push back on the vile insurance companies if they had too many patients dying from insufficient follow-up scans. I know the protocal is CAT. I guess I'm hyper-sensitive as it took SOOO long and going through so many doctors just to find one who believed that I was really in pain and really had an issue that needed to be found. 

I didn't freak out but was very taken aback yesterday when my (wonderful) chemo doc said the scans won't happen until March- a full year after treatment. 

I mean, I get it. I too want all the cancer poison drugs to have finished their work and exited my poor old bod so that we don't get any false positives and freak out. But I haven't heard of ANYONE waiting a full year for the scans. 

I will have more scary anoscopy exams, though. The last one made me bleed. 

Trying to stay focused on the fact that I feel good, only have occasional (and manageable) pain and that they probably got it all.

And thank you for the perspective on the potential downsides of PET scans!

Suz

If it's any reassurance, my recurrence was found by my surgical oncologist as part of my routine anoscopy, not my scans. Yes, stay positive that they got it all! I'm trying to do the same!!! 

Hi Suz!

I tried to respond earlier, but I’ve had some trouble with the site.  Anyway, I SO hope all went well with your med onc!  Has he/she set dates for the scan?

I have had CTs every three months since treatment ended, and that will continue probably until April of next year, possibly longer.  CTs for follow-up with this type of cancer is the preferred scan at MD Anderson.  Thorough for follow-up when combined with DREs by the colorectal surgeon, and less radiation than a PET scan…sometimes I feel like I’m already “glowing,” and not in that youthful, insta-filtered sort of way!  Anyway, for what it’s worth…

I’m sending big, healthy, strong thoughts to you as you navigate this series of appointments.  Please keep us updated as they go, and way to get “back in the saddle.”

Hugs to you!

Red

Hi Suz (ridetbred),

Firstly that’s wonderful to hear that you’re getting back to doing what you love. If it’s any consolation for quite some time following my treatment if I overdid things I would pay for it with butt pain too plus the dreaded fatigue would return for a day or two!

Regarding scans, PET scans here in the UK are used far less frequently than it seems in the US, I think they’re mainly used here in cases of late diagnosis to check for possible mets or in cases of recurrence. If it’s any comfort my tumour wasn’t visible on my diagnostic scans at all (CT & MRI) but it was definitely there as my colorectal surgeon could feel it & the lower colon team at my local hospital had biopsied what was first thought to be an ulcer & the biopsy was positive for SCC. I had my 4 year check-up this June & my surgeon said there would be no more scans for me now & hopefully I’ll be discharged next June. Just to add both my surgeon & oncologist both told me that the most reliable way to detect possible anal cancer & recurrence is the dreaded DRE! so although I hate the thought I’m always compliant with the offer  

We often complain about our NHS here but it must be awful for you having someone making a financial decision on your health that you have little to no control over! So I hear you. 

Sending positive thoughts your way. 

Nicola

Hi Red! It's always good to see your sunny self here. It's interesting that while we're both in the US, our scan schedule is so different. I expected every 3 or at least every 6 months. My chemo doc said that the gastro's anoscopy will be the main diagnostic tool going forward, which makes me droop a bit. Yes, it means less radiation, but it's SOOO painful. 

But way better than active anal cancer.

Hugs back,

suz

I’m thinking that maybe your scan schedule is different because you didn’t have spread, if I’m remembering correctly?…I have a friend who was diagnosed at Stage 1, and she doesn’t have scans as often as I do. For me, it was DRE, anoscopy, CT, and bloodwork at 3 months and 6 months. Then at this most recent 9 month check-in, it was just CT and bloods. At 12 months, it’s DRE, anoscopy, CT, and bloods again. That’ll be every 6 months for the foreseeable future, with CTs and bloods in between at 3 months until at least April.

I don’t mind the frequent checks…peace of mind!  I’m sorry you can’t be scanned more often, but yeah, I do think anoscopy and DREs are actually quicker and more accurate to catch recurrence early!

More hugs!

Red

Of course, that does make perfect sense. My situation is simpler. As always, my friends here give me much needed perspective.

I guess I've just steadied up so much in my Summer of Recovery that I wasn't well prepared for the anxiety of heading back into the medical world.

Thans\ks, Red!

Hugs

Suz