recently diagnosed Stage 3 C T4,N1,M0 anal cancer

Hi Stormeey

Welcome to a great place to come for support. Everyone here is either post or mid treatment and there are two site champions Sarah and Nikki who I am sure will introduce themselves shorty and show you the ropes so to speak.

I'm sorry to read you think you might have a few complications to. Your treatment and hope things are much simpler than you might fear following the biopsy. 

If there is one thing in think we all learn during the treatment process,  its take one day at a time,  cross bridges as they come and don't try to jump too far ahead. 

I can see your biggest fear,  as was mine,  is the prospect of getting bad skin reactions to radiation. Please allow me to say, I wish I had known then what I know now as far as that's concerned. 

My personal experience during treatment and of two others that had it the same time,  was almost zero skin reaction. 

I didnt even get any kind of soreness until mid week 4.

I had cocodemols from then on that did a great job. I know others that used regular paracetamol only. 

It is true that some do get worse reactions but it's more uncommon than you think.  And there are pain killers and creams that help. 

Even in the worse cases it's all very doable.

It's a relatively short treatment,  that has a very high success rate. 

So you have lots of reasons to feel positive about the future. 

You can friend people and post privately or post on the forum here any time about anything,  everyone is very helpful and supportive.

And, most importantly, don't forget, your going to be fine. 

Ian 

Thank you so much for your reply.

It is such a relief when you know you are not alone in this particular battle with cancer.  The pain has already been so tremendous over last 9 months that the idea of intense sunburn pain in that area and the vagina (since the tumor did infiltrate the vaginal wall as well) and then on front to the lymph nodes  seems terrifying. 

I try to find ways to make light of the least "glamorous"?  (trust me am not inferring that ANY cancer is glamorous but ass cancer is a hard one to bring up in conversation) of cancers to tell your friends and family.  Right now my fave saying is i have cancer up the wazoo.  Or that those who have always been convinced i am a pain in the ass now have full and complete documentation that they were indeed correct.

I did have the bad fortune to spend quite a few months battling what i thought was hemorrhoids and at some point when i felt some swelling in a lymph node and the pain was unbearable.. the ER doc just told me i had a bad case of hemorrhoids and to increase my fiber and increase all my other self treatments which i assure was anything and everything from creams, unguents, suppositories, fiber powders, sitz baths x4 a day .   The doc said i can absolutely reverse the problem with proper care at home.  Sadly even the radiologist missed the very very large lymph node (around the size of a smallish potato) on the CT.  this lost me 4 months of treatment.

Right now am just trying to get through the next few days to find out why the spleen is "hot" on the PET scan tho i truly suspect it is nothing of concern seeing as how i just got out of 2 week stay in hospital where i got cellulitis after they took 5 biopsies of the lymph node.  that infection kept me on 4 different kinds of IV antibiotics for 8 days.  I can only imagine that the spleen was working overtime.  These are my "see the silver lining" mentality which i hope carries me through.

I am glad to know i am not alone. 

It helps in indescribable ways.

TY again,

Stormeey

Hi

Welcome to our wonderful forum, although I’m sorry you find yourself here.

Your story is similar to mine. I battled with what I and my GP thought were haemorrhoids for 6 months. Going to the toilet was very painful. It was only when I ended up in A&E with what was thought to be a perianal abscess that they discovered I had a tumor, anal cancer. This was back in March 2018. I was diagnosed 3b - T4 N3 M0 with evasion to my vaginal wall.

Now the important bit, fast forward and I’m currently 19th months in remission. This cancer is not only curable but the treatment is very effective with most people achieving a positive result.

Its very hard to get your head around a cancer diagnosis, let alone a rare, stigmatised one. In my experience the more you talk about it, the more you normalise it but, we all deal with things differently.  The thought of treatment is daunting, we all hear the horror stories of chemo etc however, the public perception is somewhat skewed. The reality is very different and this is something you will learn as you go through your experience.

All I will say about the treatment for now is that its short and sharp. Its totally manageable and side effects accumulate gradually and are at their worse towards the end of treatment and beyond. Everyone reacts to the treatment differently depending on staging, tumor location, age and any underlying health issues. You won’t know how your body will react until you start. The thought of having chemo and radiotherapy at the same time sounds daunting however, the radiotherapy is the main treatment for this cancer.

Myself and are the community champions for this site. Although we were diagnosed differently, we started treatment at the same time and supported each other through it. We had very different experiences but ultimately achieved the same result. Along with all the other people on here we can offer two different perspectives. 

It sounds like you are still in the middle of of tests, waiting for results and the full picture before treatment starts. Waiting for treatment to start is the most challenging time, you just want to get on with it. Once treatment starts you will be focused on ticking off the days and getting through it. Hard to believe but it passes by very quickly.

There is a wealth of experience and advise on there. We can help and support you every step of the way. Come on here whenever you have a question or need some reassurance. Someone will always respond to you.

You will get through this treatment and you will get your life back. Cancer has changed me forever but I am able to live my life pretty much as I always did.

Good luck with it all and no doubt we’ll talk again soon. 

Sarah x

I understand the wasted time mentally but I wouldn't spend anytime thinking about it. It's a very common story that ot get misdiagnosedfir a long time. 

I had a "Fissue" for a good 12 months I was told. 

It was only when a lesion thst bled a lot was removed and biopsied that it was diagnosed. 

As for the embarrassment I tend to find the blunter and more candid you are the better people respond.

I tell people I have "Arse cancer". Or if I can't sit that it's broken.

I think many think it means bowel,  which is some how less ?

As for infections, my oncologist can't decide if I have a residual mass or scar tissue with av infection in it.

One thing I can testify to is the amount of soreness I have in the area that does suggest an infection of some type. It does seem to be common occurrence too.

Post anything you like,  whenever you like.  There will stays be a lot of support for you here. 

Ian

I always say it’s bowel cancer, or if anyone asks where it is I say ‘up the bum’

Don't worry about the burning, the cancer pain starts to diminish really fast as treatment gets going, and so long as you look after yourself and don’t ride a bike or try to take long car journeys you’ll be fine. Yes it gets sore but not unbearable. I had two weeks when I couldn’t do much but that was more because I was tired.

keep us posted,

xx

Hello, 

sorry you have met us all in this circumstance but rest assured this forum are so very helpful ! 

I had 5.5 weeks of chemoradiotherapy and yes I was on fire down there, however each day I told myself if it’s burning me it’s killing  the tumour! 

And it did! I’m 18 months post treatment and clear. 
morphine gel and longtec/shortec pain killers got me through. I would say it was week 4 I started to be in pain and that continued for maybe 4 weeks then got lesser by the day. 
it is a short time in the big picture to get your life back! 

good luck and keep strong! 
L xxxx 

Thanks to each and every one of you for your responses.   I am not alone.

Yeah I try humor, takes the "sting" out of saying i have ass cancer.  And I am more the blunt sort and find that challenging my friends to come up with some silly term for it may help THEM in the long run as well as myself.  As they become creative i will share the sillier ones they come up with.

The diagnosis is clear.  Staging was clarified a month ago,  Stage III C, T4, N1 M0.  Chemo and radiation was set for tomorrow.   Port is installed and ready to roll.  All my preparation projects are mostly done (you know the ones you think you may not be up to doing once the "spit" hits fan so to speak.)

The spleen thing where it showed up hot on the PET scan  put a wrinkle in the timing, but i have a feeling not for long.  My Rad Onc is raring to go and have already completed all the butt mapping and have the marks on the tush to prove it lol.  I still have this inkling that my spleen is in a mood because during the 2 week hospital stay i got cellulitis after some biopsies on my lymph node.

I am choosing to be positive that the "hot" spleen is a blip and not something more serious.!

Thank each and every one of you for your words of encouragement.

I now look forward to coming to here to a circle of people who have trudged this very road, or are trudging currently.  It is amazing how comforting and strengthening it can be.!

I will update as i can and peace and all good things to you all till we meet again.

Stormeey

Hi ,

Welcome to our group although I’m sorry you’ve found yourself here. I’m a bit late to the party today sorry! That’s what you get for working in retail, no such thing as weekends off anymore! 

I think between everyone that’s already replied to your post you’ve received some great support so far. It’s already been said that unfortunately misdiagnosis of this particular cancer isn’t uncommon hence many of these pesky devils not being picked up until the stage you’re at now. 

I can assure you that although as we all have you’re dreading the symptoms that come along with the chemoradiotherapy you will feel much better once it’s underway. The side effects of treatment are accumulative & you deal with them as they arise, your radiotherapy/oncology teams will make sure you have all the creams, pills, lotions & potions available to help with the ‘burn’. 

Hopefully this flag of your spleen will prove to be nothing to worry about & your treatment will be underway very soon. 

Don’t forget that we’re always here for hints, tips & support before, during & after treatment & no question is too big or small & at some point chances are we’ll have all asked that same question so don’t be afraid to ask. As has already said we were diagnosed around the same time & supported each other throughout our treatment & I’m also 19 months post treatment & NED. 

Nicola