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

Hi scary40, 

There are members here that have been diagnosed at all different stages so hopefully someone of a similar staging to yourself will be along soon to offer some reassurance. I agree that especially where you are on your journey maybe the Farrah Fawcett documentary wasn’t the best idea! I know her story but I think it would have sent me in a tailspin had I have watched it at the beginning of all this! 

What you’re feeling & your thirst for facts about your diagnosis is perfectly natural. I’m a knowledge is power kind of gal but I stopped reading the statistics pretty early on if I’m perfectly honest.  The only time I’ve asked for statistics is the last time I spoke to my oncologist a couple of months ago & I’m a little over 2 years NED. 

I don’t know about in the US but here in the UK we have counselling services that you can access following, during or after a cancer diagnosis. Also the Macmillan Helpline is available if you need to have a chat to someone. It must be difficult being away from your family during your treatment. I have 2 daughters & although I was staged differently to you I remember after my diagnosis wondering & worrying if I’d see their next birthdays, it’s such a stressful time. I suppose what I’m trying to say is don’t beat yourself up for the way you’re feeling. You’re not moaning at all, this is exactly why we’re here, to support each other through. 

Nicola 

Hi @scary40  and welcome to the Group. I agree with Nikki65  that the Farrah Fawcett documentary is probably not the best thing to watch at the moment! I watched it a few years before I was diagnosed and she was the only person I had heard of with anal cancer. The statistics are averages and can't tell you what will actually happen to you. I always think the best person to  ask, should you want to know, would be your Oncologist as they will also have the up to date information. I googled the statistics whilst I was waiting for my results, I was unable to stop myself and researched anal cancer quite a bit. I wanted to know what I was facing. The trouble is that sometimes the information on the internet can be out of date and sometimes plain wrong.  As Nikki65 has suggested, counselling may be an idea to discuss how to process the information about statistics and deal with the concern of a reoccurrence. The counselling I had really helped. It is a terrible feeling to think you may not be around to see your children up, in fact I would say that is the worst thing to cope with.  I hope the rest of your treatment goes well, I felt nauseous in  week one but that passed.  You are most definitely not moaning, please do come back to us with any other concerns or just to let us know how you're getting on x

Just out of interest scary40, earlier I dipped into another group which the majority of the members are in the US & many of them that have had or are going through treatment seem to have the chemo side of the treatment delivered by infusion on the first & last week of treatment where as here in the UK only a couple of people I’m aware of have had theirs delivered this way & the majority of us seem to have a Mitomycin infusion day 1 & capecitabine tablets each day of radiotherapy, if you don’t mind me asking which are you having? 

Nicola

Hi Nikki65,

My treatment plan is 1500 mg of Capecitabine, once in the morning and again at night, along with two infusions of Mitomycin given once at the start of treatment and again 28 days later. I take the Capecitabine only on my (29) days of radiation. 

I'm curious too, about the difference in care in the US versus the UK. I have the feeling that treatment in the UK is more comprehensive in general. In the US, one's insurance dictates the level of care and costs. Luckily, my insurance is good, but I still have a total of $6,000 in medical costs, including premiums, for a calendar year before all bills are paid in full. I hit my $6,000 limit ages ago.  

I know the Mitomycin is pretty toxic, but my oncologist explained that administering chemo in multiple waves allows for cancer cells that might be in different phases of formation, to get eradicated by the second infusion.  

I'm on Day 8 of treatment, and I feel pretty good. The Capecitabine makes me feel slightly queasy, but the Mitocycin hit me like a train for three days--mainly fatigue.

Is the normal UK protocol only one infusion at the start of treatment?

Thanks,

Sarah 

Hi again scary40,

Yes from what I understand that although in the UK treatment does vary slightly from one local health authority to another on the most part you’re correct that it does seem pretty comprehensive & I've gathered from the other group I dipped into that the US medical insurance system is a bit of a minefield when covering long term treatment plans such as cancer treatments, one poor chaps family are desperately trying to raise funds as he’s stage 4 & medical bills are mounting really quickly! 

The protocol here is generally one infusion of mitomycin on the first day of radiotherapy then capecitabine twice daily only on the days of radiotherapy which is Monday through Friday. 

For me the mitomycin gave me very slight nausea but that passed very quickly, the capecitabine I took as you’re doing, twice daily, with at least a 10 hour window between. I think it was the  combination of both the chemo & radiotherapy that caused me fatigue from around week 3 & I found myself napping  at some point throughout the day most days & I slept very well at night too! 

I’m pleased you’re feeling good, although I was off work throughout my treatment I tried to keep a little structure to my day, my radiotherapy schedule was pretty good, usually treatments were around the same time each day which allowed me to still have a bit of routine, this for me salvaged a little normality from what was anything but a normal situation. I hope your treatment passes quickly for you & please if there’s anything you want to ask or any support you need we’re always here.

Nicola

Hi Sarah.  I was diagnosed with stage lllb anal cancer last November.  Had standard chemo and radiation for 5 weeks and finished feb 2. I'm 100% now.  Energy,  running,  work,  physically I'm great now.  No long term side effects I've read about.  Except diarrhea.  I've gained back my weight.  I'm thin anyway.  I actually see my oncologist tomorrow for 6 month check. I had "excellent " results from radiation according to report.... but I want to ask her if that's the same as no evidence of disease. I hope things go as well for you!! Best,  lynn

Hi Teletubby,

Just to say it’s great to hear you’re doing so well & to wish you all the very best of luck with your appointment tomorrow.

Nicola 

Hi Teletubby,

I hope today's appointment offers a stellar report! Thank you for sharing your positive outcome. I'm an avid tennis player, and I hope to get back to my league and to "almost" beating my husband soon. Do you have any tips or ideas as to why you bounced back? Did you exercise through chemo and radiation? Please don't share if you don't want to, but can you share your age range?   

Since radiation is the gift that keeps on giving, today's appointment may offer you more clarity. I hope you get an all clear! Your experience stands as an inspiration as I hit my 9th day of radiation and chemo.

Cheers to good news.

Best,

Sarah     

Hello Sarah

i too have been diagnosed with Stage 3. I have just completed week 3 of treatment. I am very positive. I feel well in myself though now becoming very sore. This is expected though and thanks to all the sharing of ideas on this forum I have bought all the suggestions in preparation. Dead Sea salt bathing definitely soothing. I also have a number of creams from the hospital... medihoney, instillgel and morphine in intrasite.

1. I am part of the Portal trial and having the highest zapping! I am confident this will zap away the tumour and not return! 

Sorry had log in difficulties and didn’t finish.... I am sure there will be issues to manage ahead but fully convinced by the hospital team that it will be fully cured. I am very grateful when I look at others in the waiting room, it could be worse!! At least the treatment isn’t painful in itself. It is quick and very directed. My Mum died of cancer at the age of 45, her treatments and consequences were horrendous so I am very grateful for all that had gone before in research to ensure we are all successfully treated with minimal impact.
Sending you lots of thoughts, put the doubts behind you and be confident, it is short term in the greater scheme of things and your team will get you sorted!!  I’ll send some good luck thoughts to you too x