Shock diagnosis

Hi Dahlia , 

so sorry to hear of your diagnosis but you have definitely come to the right place … a year ago exactly I was undergoing chemoradiotherapy for anal cancer which was in my lymph nodes too.. I kept it v private but came on here regularly to gain advice , support and empathy with the myriad of questions and emotions going on in one’s head … 

I got through it , have experienced some late side effects but managed to fly to the south of france 2 months after treatment finished .. 

Keep positive , keep posting 

chrissie xx

Hi - welcome to the most informative and useful forum! The people here are so generous with their advice and experience. Unfortunately no one wants to be here.

Pretty much the same story here. A year ago I had a large external polyp removed (that I had been ignoring for two years) and they found squamous cell carcinoma. I’ve had very close surveillance for a year - scans every three months, two more examinations under anaesthetic and biopsies which are continually showing AIN 2/3. 

I have escaped treatment for a year but now they are suspicious of changes and my initial wound will not heal. I’m due to see an oncologist next Thursday (only seen surgical team this far) to talk about chemo and radiotherapy. 

I’m not telling you to scare you but more to reassure you that the NHS have been exceptional in monitoring me and whilst it’s scary I’m very reassured they know best. 

The next few weeks will be scary but you are in good hands da and very good company on here. 

Hello Dahlia, welcome to the group. The good thing about this group is it’s somewhere to come and ask any questions or just talk about emotions as it can be very emotional and scary for anyone who has had a diagnosis of cancer. I attend a therapy gym where all the lovely ladies have had either breast cancer and the men have prostate cancer bar one who had colon cancer. I have been going for three years now and only a very few know I’ve had anal cancer. Breast cancer seems to be a bit more accepted with sympathy but I think the word anal tends to put people off. When I was diagnosed of course I googled everything about anal cancer and the information out there is so outdated. Stick to Macmillan or the cancer research site for accuracy. The side effects don’t come all at once and you don’t get all of them. On my first appointment my oncologist ran through a whole list of side effects and I was looking a bit sick when she said you don’t get all of them. The biggie for most is the skin which I didn’t suffer too much and used an invisible film called StrataXRT. This has to stay in contact with the skin 24 hours a day applied every 12 hours and reapplied if you wash that area. It’s expensive and bought online but prevented my skin from breaking down into my 4/5 week of treatment and never got blisters although I did have some internal inflammation. I suggest you read up on it to see if it’s right for you. There are many alternatives but for some reason I couldn’t even use e45 without irritation. Make best friends with your specialist nurse mine was an absolute angel and was there for me all the way. I find each hospital has its own methods when it comes to arriving and preparing for the scan. There will be lots of questions you will want to ask and on here I think someone even took a tape recorder as they were so stressed they felt they wouldn’t remember anything. Once you know what the plan is you will feel more in control and like some of us here we are not like we were before treatment but we are living a full life. I have dietary issues since treatment and was lactose intolerant for a good while but getting better at managing my diet. We are with you and good luck.

Julie

Thank you so much for this positive news. I am desperately trying to stay positive myself but, the truth is that people don't really know what to say to you and how to respond when you tell them what you have, it is a very lonely place to be. Even my husband, who is very supportive, is struggling with talking about 'it' and I am worried about the effects on him when I start treatment. I know that I need to keep my head up and everything crossed that the diagnosis is not too dire and, if the truth be known, we tend to put up with an awful lot when life is at stake.

I am sure that this forum will be my lifeline moving forward and thank you for taking the time to respond to my message, cry for help!

Yes, the people on here, including yourself, seem to be so incredibly supportive and I know I will be reaching out a lot in the future.

I am not sure that I will escape treatment, or even if treatment is ultimately the better option for peace of mind. My nurse did say that sometimes they choose to monitor AIN2/3 and often these highly disorganised cells don't ever become cancerous. What a tightrope to walk on.

My polyp was internal and caused me no symptoms other than very occasional bleeding. As i'd had a colonoscopy in 2021 where they told me there were some internal haemorroids, I didn't really worry. It was my daughter who pushed me to get checked out (thank God - did Bowel babe teach me nothing). 

Are you worried about treatment? I am very fearful of both the chemo and radio, although the radio sounds very brutal and the side effects scary.

Thanks so much for replying to my message, I really appreciate it.

Thank you Juiie, I have heard about the StrataXRT and it certainly sounds like a very effective product, worth the money. Do you just use it all the time from the first day of treatment? I think, depending on my treatment plan, I will need to investigate everything that I need to purchase and prepare myself for the weeks/months ahead.

I hope that I will be able to have some semblance of a life, at least for a few weeks, however it does sound like the treatments pretty much wipe you out.

The nurse I have has already been amazing, very calm and I know she will be by my side, for that I am extremely grateful.

Thank you for all your advice, I will be taking notes at the consultation as, at the moment, I am struggling to even concentrate on the most minor thing. The cancer has literally hijacked my life already.

Hi Dahlia68

Welcome to the forum, you are in the right place. Everyone will be here for you however you need and nothing is out of bounds. Easier said than done I know but try not to worry about treatment, we all react and cope differently. It wasn't a walk in the park but not as bad as I had imagined. Sending hugs. Xx

Hi Dahlia68,

Your story makes my heart squeeze as it is very similar to mine. For me, the polyp was found and biopsied on routine colonoscopy, which came back as AIN1. About two months later (no hurry, the docs said), a surgeon removed the polyp and found cancer. I underwent chemo radiation therapy a month later.

I absolutely remember the sleepless nights and the worrying about staging. During that time (and to this day), I read this website through and through, trying then to understand what the treatment involved and now how it will impact my life going forward. 

Also like you, I had a difficult time telling people my diagnosis and only wound up telling my family and close friends (I've since opened up more about it). As one person so memorably said on this site, why anal cancer should carry a stigma when we all have an anus is a head scratcher.

About the best I can tell you is that you should lean on the people on this forum. It's a dark, uncertain time between diagnosis and treatment, but the good news is that once treatment starts, a lot of people start to feel less anxious. Maybe it's because you're finally treating the cancer (the treatment is quite effective) or the daily process of going to the treatment center and taking meds takes over. For me, as strange as it seems, treatment seemed to pass really quickly.

The people on this site are also a wealth of information about preparing yourself for treatment (almost everyone vouches for purchasing a portable sitz bath and water wipes). Hang in there. This time is really rough, but know that we understand and are rooting for you. Please keep posting with any thoughts or questions you have. Xx

Thank you for your kind words. I too had my polyp biopsied in December and it came back all fine which was why, when they actually removed it in May, it was such a shock to find out it was cancer. The nurse said it must have been because the biopsy only took a bit from the top of the polyp and the cancer was further down. That's scary stuff as there must be many people who have had a clear biopsy but actually are harbouring a cancer.

Goodness me, what a time this is, one part of me is dreading the scan results and the other is wanting the full picture. 

Thank you for your lovely positive words xx