Awaiting treatment

Hi JenW,

I wanted to send you a warm welcome to the forum, although I'm really sorry about your diagnosis, It is a really dark time between when you learn your diagnosis and treatment starts. I remember quite a few sleepless nights in which my mind spun unendingly. The good news, at least for me (and I hope for you too!), is that things improve a bit once you start treatment. Maybe it's knowing you're actually on the path to trying to get rid of the cancer--or maybe it's the pretty regimented schedule--I don't know, but it really gave me something to focus on besides fear. Fingers crossed it does the same for you!

I'm currently eight days post-treatment, and it's strange to say, but the five and a half weeks of treatment really flew by. I can say that I have read this forum religiously for information each step of the way, and it's been an absolute absolute lifesaver for someone like me who wants to know everything.

There are some really fantastic recommendations for items to purchase to help support you during treatment (I bought both a portable sitz bath and a peri bottle--and use them both daily!), and questions are welcome. Nothing is off limits!

Wishing you all the best and please know there are so many of us out here rooting for you! Xx

Hi Poppy, thank you for your reply x so you are cancer free after your treatment? I really hope so! 

Can I ask, did the pain get really bad during treatment? It's just that I'm struggling every day and night. The nights are the worst... the pain meds I have atm don't even touch it when it gets that bad. 

Jenna 

Hi Jenna,

It's too early to tell if the treatment worked. I get a scan at 3 months, and then I think they check again at 6 months? I'm still working out the details.

I didn't have pain going into treatment, as my cancer was discovered during colonoscopy and I didn't have symptoms. But I do believe some people who had pain pre-treatment say that pain actually improves during early treatment as the tumor shrinks. Hopefully, one of those forum members can share their experience. 

As for pain as a consequence of treatment, I've definitely had some, especially towards the end of treatment and in the eight days since. Reading this forum helped me psychologically prepare for it, and my doctor has been great about prescribing pain meds (I'm on a fentanyl patch plus oxycodone). I guess what I would say is that you should advocate for yourself and make sure you get the pain meds you need. That night pain sounds horrible (that's actually why my doc put me on a fentanyl patch--because I would wake up in the middle of the night with pain when the pain meds wore off. He wanted me to take something that works 24 hours a day).

I'm really feeling for you and hope you get relief soon. There is nothing worse than pain in the dark when you feel most alone. Sending you a big hug. Xx

Thank you so much for talking to me about this. Yes, the pain can be crazy in the night... like what you have described, I wake in the middle of the night with it and the current meds just don't help. It's Dihydracodiene.... but I also take paracetamol and ibuprofen, plus have amitriptyline, also lidocaine gel. It's not constantly that bad, but when it's bad, it's just unbearable. That's why I'm scared of it getting worse x

Hi JenW

I couldn’t sleep either and just read your message.

I am 9 days post treatment and I also went through months of examinations and being told it was haemorrhoids until the pain got so unbearable I insisted on further examinations. I am 51 and smear tests showed I also have the HPV virus. I was given the vaccine to try to help get rid of it and had a colposcopy to get rid of any cancerous cells in the cervix. I then found out in January that I had anal cancer (I put it all down to perimenopause for me).

I have been told by a doctor friend of mine that if you’re unlucky enough to get cancer, this is one of the better ones to get as the treatment is very successful.

The treatment is aggressive but I found it doable. I  stayed in bed from week 4 as it was where I was most comfortable. I am now getting my appetite back and reducing my painkillers. 

I prepared for my treatment by buying the sitz bath, Epsom salts. I was having two proper baths a day as I found that soaking in warm water and Epsom salts really relieved the pain and I wore nighties instead of pjs. 

Once you start the treatment, I found the tumour reduced quite quickly and the bleeding stopped by the second week, which was a relief ( mine was 6.5cm) 

Good luck with your treatment and take each day at a time xx 

Forgot to add : I was setting my alarm during the night to wake up and take more painkillers to keep the pain away and my tumour, since finishing the treatment has reduced by 40%, the oncologist was very happy with that

Hi JenW ,

Another warm welcome from me although I’m so sorry to hear of your recent diagnosis. It’s a really difficult time, we all completely understand & never want you to feel alone in all of this. 

I was diagnosed with anal cancer in February 2018, I had my tumour removed surgically via local resection but because a small are only had a 1mm clear margin I went on to have 23 days of chemo-radiotherapy, I’m approaching 7 years post treatment (June) & as far as I’m aware I’m cancer free to date. 

Unfortunately your path to diagnosis isn’t uncommon & it’s something that drastically needs to change, I think had my diagnosis taken this long I’d be feeling pretty angry! 

A large portion of anal cancers are HPV related, I don’t know if mine was or not as my treating hospital said they don’t test for HPV as it doesn’t alter the treatment plan or outcomes. I have never had any issues with any of my smear tests over the many years of attending although I believe primary HPV testing as part of the smear test campaign has only been active for the last 20 years or so, prior to that it was only if cellular changes were detected that then a HPV test was carried out so I may have had it & been blissfully unaware! It’s also only certain strains of HPV that are likely to go on & cause problems our bodies usually just deal with this as it would any other virus & clear it. From what I understand the HPV also has to be active to be detected & it can lay dormant for years before it causes any issues with. Unfortunately our particular diagnosis is one that’s not talked about an awful lot, I think this is twofold, one it’s classed as quite a rare cancer, although cases are unfortunately still on the rise & the second I think is the obvious one, it’s not quite as easy to say you’ve been diagnosed with anal cancer as it is some others, there’s still a stigma attatched to our kind of diagnosis & many of us here fight hard to dispel the stigmas surrounding it. 

I’m really not sure what to say about the choice of music during your MRI scan! You really do have to try & see the funny side of that one I think! 

Please feel free to ask away if you’ve any questions, we are used to talking about bottoms & toilet activities here! & please don’t ever feel alone, we’re all here to support you however we can. 

Nicola 

Hi, I’m a bit ahead of you, two weeks in today, and I can definitely say the pain at night is more or less gone! I couldn’t get to sleep without pain killers and would wake up as soon as they started to wear off, I used to wander found the house in the middle of the night it was so sore and I didn’t know what to do with myself until the next dose kicked in! But by the end of week one it had subsided to a vague soreness which I can cope with and once I’ve got comfortable can sleep without any pain relief, Assuming other pain will follow, but nice to have a bit of time without swallowing pain meds! Also feel better having a busy schedule, and counting off the days. Hope you get a start day soon, that wait for me was awful, keep strong

xx

Hi JenW,

Welcome to the forum although really sorry to hear of your diagnosis. It sounds like a very long journey for you to get to this point and I know that this has been the case for many others too. For me it was an 8 month process which seems positively speedy in comparison. The time between getting diagnosed and starting treatment is so frightening and stressful so I’m glad that you have found the forum as it’s full of information and sound advice.

Like you I had no clue about the link with HPV and I was positive when tested by my oncologist. I had never had an abnormal smear test.

Im sorry that you are in pain and hope that now that you have a diagnosis you can be prescribed a good pain management regime by your team. Don’t hesitate to let them know that you are struggling with pain as there are lots of options.

 I finished chemo radiotherapy in November and my 3 month scan showed no evidence of cancer so while the treatment isn’t a walk in the park it works.

Astonishing choice of music during your MRI! You couldn’t make it up could you. 

Wishing you well for the next steps and don’t hesitate to reach out about absolutely anything.

Big hug to you xx

This is great to hear catsmum that you’re feeling the positive effects of your treatment already. You’re sensible in the fact that you know there will be more discomfort towards the end & for a short while after treatment has ended but this too will pass, keep your eyes on the prize & keep checking off those days. 

Nicola