Pre treatment

Hi there Michelle75300,

Welcome to the online community but I’m so sorry you’ve had the need to find us. Congratulations also on your marriage. There’s never a good time for a cancer diagnosis but what an awful time for you to receive yours, just before your wedding, such a special day to be overshadowed by such worry for you & your husband & family, I hope you managed to enjoy your day as much as possible though. I’m also sorry to hear that you lost both your parents to this awful disease! 

Unfortunately many anal cancers go misdiagnosed in the beginning as either piles, cysts or ulcers which can sometimes lead to more advanced cancers! Regarding the treatment for anal cancer, the chemo-radiotherapy is standard treatment & is generally very effective obviously depending on you staging etc., it’s also tailored to your specific staging for example the more advanced your cancer is then the higher in strength the radiotherapy would be. If you click on my username you can read a little about my journey but I ended up having 23 sessions of treatment Monday-Friday weekends off all treatment. Easy for me to say now I know, I’m a little over 2 years post treatment, but try not to worry too much about the side effects you will get through it. Yes the radiotherapy does induce a skin reaction similar to sunburn but that happens gradually in varying degrees & you’ll cope with it as it does, you should be supplied with creams & any pain relief if needed by your radiotherapy/oncology team. The chemo side of things is generally tablet form (Capecitabine) with an infusion (Mitomycin) on day 1 of treatment. Personally I had very little reaction to the chemo tablets, maybe a slight decrease in appetite but nothing you’d really notice, I was given anti-sickness meds to take in the beginning but found I really didn’t need them so only took the first lot I was prescribed. My oncologist explained that the side effects of the oral chemo aren’t nearly as severe for the majority of people as if you were having it via infusion, you don’t usually lose your hair although mine went a little thinner & wasn’t in great condition. The biggest thing for me was the fatigue, this comes as a result of a combination of both sides of the treatment I think but it was nothing that a nana nap & early nights didn’t sort out, just be prepared to rest when you need to unlike general tiredness it really is something you can’t push through, the daily hospital visits in themselves can be tiring too. 

I was very much like yourself in the beginning & kept my diagnosis private, only close family & 6 close friends even know I have had cancer (apart from my management at work) but I find it easier to talk about now I’m tentatively  through the other side. Strangely I’ve always found it easier to talk to strangers about my diagnosis than to those close to me, I think that’s more about protecting them from worry though, like you I worried terribly how my diagnosis was affecting my kids & family.

Concerning the intimacy between you & your hubby I’m sure he’ll be willing to forgo full intercourse for a while & support you through your treatment & recovery if it means you’re well & healthy again. The radiotherapy can leave you with vaginal stenosis but that can be improved after you’ve recovered from your treatment & your skin can be quite sensitive & delicate in that area after the radiotherapy. Having said that there’s obviously other ways of being intimate you just need a little imagination until full service can be resumed so to speak! 

Apologies if there’s an overload of information there but I hope it’s gone a little way to easing your worries. Please don’t hesitate to ask if you have any more questions, we’re here to support each other. 

Nicola

Hi Michelle and welcome to the group. What a shame being diagnosed just before your wedding day and what a terrible shock it must have been. I’m so sorry to hear about your parents too. I also lost my father to cancer. Please note though that the chemo/radiotherapy treatment for this type of cancer is very effective. I had the same chemo that Nikki has described above. I felt sick for a few days at the beginning but wasn’t sick. I had no other side effects. My hair on my head did not fall out or thin at all. I lost most of my pubic hair with the radiotherapy but it has mostly grown back. There are creams to deal with any radiotherapy burns, you need to tell the radiographers of any adverse reactions, and anti nausea tabs for the chemo. In relation to sex post treatment, it’s very important that you use the dilators you will be given as soon as you feel able. Things do narrow down there. I started using at about 9 weeks post treatment with lots of lube. I am having sex again and use the dilators once a week. There’s lots of discussions about this issue which you will find if you search for ‘dilators’ . I hope all goes well with your treatment and please reach out to us with any questions you have. We’re here to support you. X

Hi Nicola

I just wanted to pay thank you for your advice and support. I am due to meet with my specialist today to discuss scan results and treatment. A little apprehensive but it's so nice to know I'm not alone. Couldn't get through this without Macmillan. Such a fantastic group so a big thank you to everyone.

Will let you know how it goes.

Michelle

Thank you so much. So refreshing to hear other people's experiences and of course have the support and advice.. it's so nice to know I'm not alone so thank you x

Hi again Michelle75300,

You're more than welcome we’re here for exactly that reason to support each other through this bumpy ride. It’s only natural to feel apprehensive. I hope your meeting went well today & you now have a plan moving forward. 

Nicola 

Hi Michelle,  I was diagnosed one year ago and finished treatment early Feb.  It was 5 weeks long.  The vaginal stenosis is real and dilators are helpful.  I haven't used it much because I'm not in a relationship and not planning one.  I'm 65. Regarding pap smears,  I think they can use anesthesia if needed.  They can figure it out.  I did have burning and pain from radiation.  It's gross but what helped me was sitting in Epsom salt tub.  Just a bit of water to cover things.  Sometimes I just went to the bathroom in the tub,  cleaned it well and got in another Epsom bath.  I know it's gross.... but it worked for me!!! Be inventive if you have to.  Thank goodness it's all pretty short lived. I reminded myself that a lot!!! Best to you! Congrats on your wedding. 

I've done the toilet in the bath too teletubby, you gotta do what you gotta do with this disease! 

Michelle I am so sorry to hear of your diagnosis and the loss of your parents. I hope you find some comfort in the words of support on this forum. 

I am just coming up end of week 2, I have had diarrhoea but the loperamide (not sure of spelling) was effective at curbing it.  I havent felt sick.  I have started having burning wee the last two days due to radiation burns, you can get lidocaine cream or may be given instigell (which does sting), I have just started using a funnel to pee thru and so far it works (empty loo roll). 

I had what I presumed was a bartholins cyst earlier in the year!  It did burst, thank goodness, my lip was huge I could barely move I have no idea how you continued to work! My job has been work from home during lockdown, one of many blessings. 

Also get yourself a portable bidet.  It goes in your toilet and you fill it with warm water, you may find it relief for all manner of symptoms or side effects (my sister got mine off amazon, I take it and a jug to fill it, everywhere).