Anal Cancer

Leslie, I am sorry you have found yourself here, and how unfortunate that a treatment for one condition led to anal cancer.  First of all, you have come to the right place, there are lots of forum members (including me) who went through or are going through this course of treatment who will be able to help and advise and there is nothing off-limits in the discussions we have on here.

I am a couple of years younger than you and I won't deny I found the treatment tough.  I also have young grandchildren and I wouldn't have been able to look after them during treatment and for a good few months afterwards. The radiotherapy in particular can be gruelling towards the end but hand on heart, I wasn't exactly ill, just very tired and very sore in the nether regions.  The team treating you will keep a very close eye on your progress and will make sure you have all that you need.  Be fully prepared, I picked up all my coping tips on here, got through it and now gradually my life is getting back to normal, albeit a slightly different normal.  There is a 'shopping list' of items that I bought, none expensive, that made life of lot easier at the time.  I will look that out for you and post to you again. 

You are obviously a much loved and needed grandmother and you need to be kind to yourself, get all the support on board that you can and take this time out to get better.  Please remember that the course of treatment, in the grand scheme of things, is such a very short period in your life, it just mightn't seem like it at the time!

I don't have experience of Crohn's disease but I would be asking what the treatment plan is for that after the treatment for cancer - I know that in itself is a very debilitating condition and you have my sympathy.  I am hopeful that there is some sort of treatment that doesn't involve immune suppressants.  My best wishes to you in your course of treatment and please come back and let us know how you are.

    

Hello Leslie, I am sure you will have members on here share some of their experiences going through treatment and life afterwards. Firstly I would point out my experiences would differ from someone else as we are all different in ages and health. I was diagnosed December 2020 and started treatment around March 2021. I and 14 months post treatment. I remember very clearly the stress and fear when hearing the word cancer and was starting to think about preparing my funeral etc. on diagnosis I was transferred to a hospital that treated anal cancer as my local one did not have the equipment to do it. My first appointment with my oncologist was a nightmare as she sat quite calmly and gave me a whole list of side effects that could happen during treatment and at the end of it I asked her if I should bother as after hearing all of that, I thought I would be sat in a chair all day with a nappy on. She said after seeing me get upset that I am young and she was sure I can get through it. I am 67 years old and small build and quite active. I had six weeks chemo radiotherapy and first day chemo intravenous. I trawled through the internet searching for life expectancy and so glad I found this site. When you start treatment the effects of the radiotherapy take effect, for me around the fourth week. I did use a gel called StrataXRT which I researched and contacted Leeds hospital as they did a trial using this on their patients. I believe this helped my external skin hold up but whose to say using other creams wouldn’t do the same. I am allergic to anything with silver in it which some hospital creams have. Read up on this to get more information. The first few weeks I did get radiation cystitis so drank loads of cranberry juice which I think water would have had the same effect in helping. The side effects are culminating and you deal with them as you go along under the advice of your treatment team and many tips found on here. I will add you may get very little side effects as don’t all get them all. Your team would be the best to advise you due to your crohns condition. I now have no pain and back to walking 5k most days, swimming and enjoying life. I would say my life has changed somewhat due to my bowels which seem to be affected by what I eat and this is something I am trying to deal with with a dietitian. Recovery just after treatment was probably the toughest time where you need rest and support. I started to feel more myself around six to eight weeks after treatment but still a bit fragile. Some recover sooner than that. I hope this helps and ask away any more questions. I don’t want to bombard you with loads of tips yet and please go ahead with the treatment as life is worth it. Julie

Hi Leslie,

It's a lousy diagnosis and we have to give ourselves time to adjust to it. It's hard to give answers that you can take to the bank- we all react SO differently to all of the working parts we're trying to mesh to get through this.

I understand your consideration of 'no treatment' if it's just going to lead to 'alive but miserable.' After I finished the treatment I landed squarely there; if they find more when they get around to scanning me, I'll opt for letting nature take its course before going through chemoradiation again. But hey! My docs told me on my latest visit that more treatment is off the table- if they find more cancer, it's colostomy time for me. Once upon a time that would have sounded dire, but now I realize that it might just make life easier.

Some of us are back to working and slinging kids around and running marathons a month or two after treatment ends. Most of us seem to take a little longer, but then again, it varies so wildly. I'm four months past treatment and just yesterday I sat on my pony again! Only for a couple of minutes, and it poinked me right in the bullseye so I'm worried about what really riding will do to my butt, but it was sure nice to see the world from my saddle again. I can carry my 2 year old granddaughter okay, but not for very long, and I couldn't have done it toward the end and right out of treatment. Give yourself some time and grace with that bit.

I went into this a little differently. After reading up on some of the potential side effects and problems, I quit. I decided to stride into this experience assuming that I'd be one of the lucky ones, and only run side effects by my team to make sure they were normal. I wasn't that lucky, but the attitude was the right one for me. Some people are much happier knowing every potential detail and outcome, so you have to decide based on how you're wired.

I'm surprised to hear that they think the immune suppressant may have contributed to the cancer. Anal cancer seems to have HPV at its root in almost all cases. Just another of the joys of this particular cancer.

The treatment is no cake walk, and I think you should plan to be able to take it easy for several weeks on the far side of it at the very least. But it also gives us by far the best possibilty for survival, and from what I've seen since I've been here, survival looks pretty sweet. Way better than I would have thought prior to hearing those awful words, 'It was positive.'

And the community here is just brilliant. I'm so chuffed to have found it, even though I'm far across the pond.

You have a lot of decisions to make. But it sounds as if you're tough, and active, and very involved with living large and overcoming problems. Keep reading through the journeys chronicled here, and you'll do the best thing for yourself.

Glad you found us!

Suz

Hi Suz, apparently taking a immunosuppressant can stop the body recognising/fighting cancer cells. My oncologist said before I started treatment that the years I was on medication for a spinal inflammatory disease could have affected my body clearing the HPV which may have laid dormant for years, who knows.

Hi Jaycee, Yes you are right.  The immunesuppressant dampens down immune system.  On the whole the majority of people fair well with it, but as we know a few dont!!  Mine is a biologic drug which I have to inject every two weeks.  Unfortunately, once you are taken off this drug invariably your body will build antibodies and will not accept it again.  It has taken twenty years to find a drug that I can actually function well with, but unfortunately I will have to start again in time.  

Dear Ridetbred, 

Many thanks for all the information and encouragement.  Im going for the PET Scan tomorrow and then everything starts moving quickly from 30th August.  I will do my best to document my journey.....As you say, it is so good to hear from others going through the same treatment.  I had heard of Bowel Cancer but never Anal Cancer and also was told it was rare.  Nice to know (although not for you all) there are others alongside me.  Thank you...

Thank you Julie.  Its all hit me at once.  I got the news whilst my husband was in hospital having open heart surgery, so obviously couldnt speak to him.  My youngest daughter is having her baby anytime now and I was going to care for the other two little ones, then low and behold I find I have a cancer diagnosis.  I really didnt know if I was coming or going!  However just a day or two on this site is boosting my determination, especially hearing all that you have achieved so far...perhaps I was feeling sorry for myself!  Anyway onward and upwards and I will post as to how things go on for me.  Such a lovely feeling that we arent doing this alone!  Good luck to you going forward. Thank you..

Hi Leslie good luck with your PET scan tomorrow. Keep us posted. Julie

Hi Leslie,

Apologies that I’m a little late to the party so to speak but I’d just like to offer you a warm welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us.

You've already received some great responses & I'm sure you can see that it’s a great supportive, friendly, informative group here & so many of us here are testament to the success of the treatment for anal cancer. 

Personally I functioned pretty normally throughout my treatment apart from some sore skin which I was provided a variety of creams for & some fatigue which was remedied by a nana nap in the afternoon & early bedtimes, the 11 days post treatment were the worst for me side effects wise, I spent those days either in bed, on the sofa or in a salt bath but ask would I go through those 11 days again to be where I am today? hell yes I would! I have my life back, I’m a little over 4 years post treatment & I’m back doing everything I did prior to my diagnosis, fingers crossed I’m due for discharge next June. 

I understand you have the added complication of your Crohn’s to contend with also but hopefully your medical teams will be able to offer you some advice surrounding this. 

Please if you have any questions just ask there’s usually someone around that will respond pretty quickly.

Nicola

Hi Nicola, Your journey is so uplifting to hear.  I’m so pleased for you.  Can I ask a question of your treatment and that is did you have chemo radiation and for how long and one last question, did you lose your hair or it got thinner?  I have very thin hair now and am wondering should I be looking at wigs??  Sounds very vain bearing in mind what’s ahead of me but I’m someone who likes to know the details beforehand so I can get my head around everything!  
onward and upwards…