Inspiration and hope

Hi Ridetbred!

I’m in the U.S., too, but I’m being scanned every three months because I had spread to the liver.  I completed chemo-radiation treatments in January, was scanned at the very beginning of March (at just 6-weeks after last chemo radiation treatment), and though I was warned ahead of time that they may still see inflammation there, at 6 weeks, there was already no sign of the primary tumor.  I then had surgery a week later to address the liver lesions.  I was scanned AGAIN (plus anoscopy and DRE) and declared NED in mid-April.  I go next week for 6 month scans, bloodwork, anoscopy, and DRE (because the fun just never ends with an anal cancer diagnosis, even when the disease is GONE ).  I expect everything to go well next week.

I’m sorry that the protocol for your diagnosis doesn’t offer scans earlier!  I know they bring me a lot of peace of mind (I mean, AFTER the scanxiety that always happens first!).  I have a friend who had a stage 1 diagnosis, and she, too, has to wait for scans.  Hang in there, as it sounds from your 3 month exam results you’re on the right path for continued healing and recovery! So a big YIPPEE for that!!

Best to you!

Red

And this is with, what the financial advisor says, is GOOD insurance! I'm so glad that yours is being more proactive and sensible (although not at the spread.) Nice that a couple of us US gals have found our way to this awesome forum!

Suz

Yeah, I have to admit our insurance has been great—no hassle whatsoever on testing and treatments (knock on wood).  The liver lesions were there at diagnosis, so I guess when diagnosis is that dire, they don’t mess around too much, keep delays to a minimum, try to move things along.  I have appreciated that the “red tape” part of my experience has been minimal and and am so relieved that treatment has been successful.

I agree, Suz!  Loving and really appreciating this forum with our new survivor friends from across the pond!

Best to all,

Red

Hi there,

just reading you post has made me feel so much better, i am on my 4th week of treatment and the pain is getting me down. I am also 36 with the same exactly the same diagnosis as you. I have a 7 year old daughter.

Glad to hear you scan was positive, that’s the best news. Can I ask how long the after the treatment ended did the pain from radiation ease and also when you started back work? 

thanks 

Hi Bellatrix777 & welcome to the Macmillan online community although I’m sorry that you find yourself here.

Not long to go with your treatment now but when you’re in pain it can feel like it’s still a long way to go. My advice would be to make your treating team aware of how much pain & discomfort you’re feeling & that the pain relief you’re using isn’t cutting it anymore, don’t try & be brave at this point, they have an arsenal of pain relief at their fingertips in the way of oral meds & dressings with pain relief incorporated & also creams that may help & it’s all about finding the combination that works for you. 

As you’re probably already aware the radiotherapy continues working in our bodies for some time following that last treatment, the side affects can also continue building for approximately 1-2 weeks after that last session too. Bare in mind this is very individual though, mine peaked around 11 days post treatment but once I’d hit that peak & the healing process began it was pretty rapid, my external skin healed really quickly although going to the loo for a poo was still a bit painful for a while longer so I made sure I had plenty of stool softeners on hand! 

Again returning to work is very individual for everyone, I returned on a phased return 5-6 weeks after treatment but I was mostly seated at work & had easy access to the loo, I must add that I had minimal bowel disturbances during treatment & afterwards so this made it much easier. Had I had a more physical role at work I wouldn’t have returned so early as fatigue throughout & for a while after treatment was a biggy for me & I needed to rebuild my stamina. 

Wishing you the very best of luck with your final few treatments & through the healing phase also. If you feel up to it let us know how it goes & I hope you get sorted with some more adequate pain relief.

Nicola 

Hi Bellatrix, 

as Nikki said it’s very individual but for me about 2 weeks after the radiotherapy sessions ended the pain peaked and then almost immediately the skin started healing and the pain reduced dramatically. It’s amazing how quickly skin can heal. Like Nikki I also had pain when going to the toilet and the worst for me was when I wee’d it was like peeing glass shards. There wasn’t much that soothed it I did try running water, however the pain only lasted for seconds and I could handle it knowing that. 

about 6 weeks after treatment I went on holiday with my family which delayed going back to work otherwise I would have returned sooner. I was back in work after the holiday. 

im really glad my post has made you feel a bit better. It’s so awful around the stage you’re at I remember at 4 weeks being the worst bit for me I was so emotional. If you have any other questions feel free to message me. 
All the best

becs x