Anyone else diagnosed with Stage III anal cancer who can offer positive vibes?

Hi Sarah.  I'm 65 now.  64 at diagnosis and treatment.  I was pretty much bed bound during treatment because the chemo harmed my heart and I was in the hospital for a week and then recovering.  I di't do any exercise for about 2 months and ran a marathon just before being diagnosed! Anyway, you know what helped with the stiffness tremendously.... sports massage.  Worked great! Had to wait a feweeks because covid. But then they opened up.  Now it's been 8 months and I'm back running and feel terrific.  I also work full time at home as a psychotherapist.  Virtual and phone.  Best to you!!!

Hi 1in1500,

Everything you wrote is true and sensible. I'm a "knowledge is power" person, but sometimes to my detriment. I think I'm starting to turn the corner and focus more on my journey rather than statistics...although when I'm alone in my hotel (during the week while in treatment), I tend to gravitate back to the computer. The internet often shares the worst-case scenarios--the juicy, attention-grabbing (often gory) details, so I appreciate this forum! Your story is positive, and I hope your latest scan was perfect! 

Thanks, Sarah 

Hi Bottom56,

It sounds like you are one week ahead of me in treatment. Please keep us updated on how you are doing. I have just started to get a "zappy" feeling when I begin to wee, although I cannot call it pain. It reminds me of the start of a UTI. How does your Portal trial differ from the normal radiation zapping? My level is "52 something" for radiation...

I'm going to ask about Sea Salts for the bath; I was only told to use a sitz bath but wasn't told to add anything to the water.

Yes, you are so right that others endure horrible battles and treatment. I see it every day in the radiation waiting room. I've chatted with a few people and their stories make me realize I am very fortunate. 

Like your mother, my father died from cancer, and he suffered and ultimately lost the fight. As far as your mum, 45 is heartbreaking--I'm sorry.  

Sending you warm, positive vibes; I hope the next few weeks cruise by quickly and smoothly!   

Hi 
I asked about Dead Sea salts before using and was told fine and to do daily if possible. 
As for zapping for the Plato (typo before) trial I don’t know except it is the very high one. Trial looking to see effectiveness and whether it helps ensure no return. Apparently there is not much difference in the side effects( thankfully) I’ve been told it will get more sore in the front too but as yet not too bad. Watch this space this week! I’ll keep you updated. 
Fully understand turning to internet and it’s not good Dr Google is not the best!! And so difficult to be in a hotel alone so please continue to reach out. I only have a 12 mins car journey to my treatment! The morphine gel certainly seems to help a lot. I’m also lucky as I don’t seem to be suffering with the chemo much, bit tired, occasional heart burn but the anti sickness pills seem to sort that.
Keep your pecker up and do ask anything. My niece is a consultant Gastroenterologist so I can ask her and if she doesn’t know (cos our bit is too low for her expertise ) she knows someone to ask

Ruth

Hi scary40 my last scan was fine thanks, all going well. There's people in our group who are a long time past treatment, six years and upwards which is reassuring to see. If your 'zappy' feeling gets worse, then wee in the shower over cool water, it's much more comfortable. As Bottom56 has said, it mustn't be good being alone in a hotel room all week, but we're always here and no question is too personal to answer. x

Not sure if it's any help (and realise I'm coming in to answer your query pretty late) but I was diagnosed with SCC stage IIIa back in April with the same treatment (capecitabine, mitomycin and radiotherapy).

My first follow up scans showed a complete response. I've jsut had my first 3 months scans and get the results on 17th December, so experiencing the usual anxiety around that).

Like everyone, I'm worried about recurrence - but it's also worth bearing in mind that most cancer recurrence statistcs are based on historic data and the more upto date treatments and results are improving all the time. My oncologist confirmed the recurrence rate is now a 20-30% for my stage of cancer - which is highest in the first 2 years - so I'm staying positive and trying to put myself in the majority (i.e. remain in remission) - I hope you can too.

Hope you push through and manage to stay safe and sane....I can't say it gets easier but I think we do all find ways to cope and feel normal most of the time.

Lil x

Hi  that’s a very reassuring post that you were clear on your first scan after treatment. I know that sometimes it takes longer for the tumour to melt away. I think we can all relate to the ‘scanxiety’ before each new scan. It’s always ‘what if’ isn’t it. Like you say though the odds are stacked in your favour against a reoccurrence. I hope all goes well with your results on the 17th x

Hello Sarah I want to offer a bit of reassurance. I was diagnosed with T2 N2 back in April 2016 and after the usual chemo and radiotherapy as an inpatient week 1 and 4 the tumour was zapped away and after the 3 month mri scan was told I no longer had cancer. I have only ever had that 1st follow up scan all the appointments after that we’re just Dre 3 monthly . I have appointment in Jan then I expect in July to be signed off after 5 years. I have bowel issues it hurts it doesn’t hurt then it hurts again! Don’t think it will ever go the radiotherapy has damaged my inside but it’s manageable I don’t take special creams and eat just as normal. Vagina yes it seems to shrink the entrance !! I’m 52 and got to say use it or lose it!! But you don’t need to worry about that yet. Concentrate  on getting through the treatment and keeping yourself active and healthy. I went thin didn’t lose hair bones ached for 2 years but back to normal now lol!! 
don’t google that scared hell out of me trust oncologist I work in bowel screening got the job same time as diagnosed terribly embarrassing sometimes but I just get one with it and am thankful I was able to be cured. 
take care Amanda 

Hi 1in1500,

I'm so glad your scan was fine. What sweet relief to be able to focus on life rather than cancer.

As far as feeling zappy when I wee, I find if I drink absurd amounts of water, my zappy feeling abates a bit. This treatment is certainly a day by day journey. I've hit treatment day 13 of 29, so I suspect things are about to get interesting in the net week. I suspect I'll have questions soon!

Thank you all for staying in touch!  

HI LillianR,

I know you are waiting with bated breath for the 17th. Have the scans already been done? Does it take that long to receive results? What awful torture to wait! I'm thinking of you and hoping for only the best!

I never heard the recurrence rate for our stage of anal cancer. My doctors don't want to reveal this--all they said was their data is better than the general statistics. 

How do you feel three months (or so) out of treatment? Yourself again? I seem to have totally lost my appetite right now, and every smell is offputting. 

Please share the good news when you get your scan results!

All the best,

Sarah