Hi I'm so glad to have been directed to this group as I was feeling quite alone! I appreciate may be relevant info on older posts, so I'll have a search through too but thought I'd post & introduce myself.
I've just been diagnosed with anal cancer. All I know is it's a skin cancer, Squamous, & linked to HPV virus. Initially GP thought I had hemorrhoids despite me saying how much pain I was in and being given creams that didn't work - 6 months later & excruciating constant pain I had to see a private specialist who sent me straight to hospital. Surgery happened within a couple of days to remove external lumps and on internal investigation I was told a mass was found internally. Biopsy and tests confirmed cancer.
Had a PET CT scan today. Still waiting to see oncologist but I'm aware the treatment is chemo & radiation. Unsure of exact details / duration but seems chemo given at start, followed with 4-6 weeks of radiation Mon-Fri each week, then chemo at end again. I've read the burning etc.. can last a few weeks extra post last session.
If anyone knows of any alternative treatments, e.g. immunotherapy etc.., to look into I'd really appreciate it.
It's the radiation that I'm getting more and more scared about the more I read - not only the burns and blisters as treatment goes on, but the possible post radiation impacts. I've got a list of Q's for the oncologist but I guess at the end of the day it'll be my choice if to choose traditional treatment or not. I've come across info on the hyperbaric oxygen therapy and I'm considering having this during treatment (as a complimentary treatment) and post treatment (whatever finances allow that is!).Has anyone used the hyperbaric oxygen with success?
I've also read acupuncture can help with possible side effects - has anyone used this during / after treatment?
Also I would whole heartedly welcome any advice anyone has on the intense sessions of radiation, any useful tips (which we tend to get in hindsight!) would be very much appreciated! I'm a single mother with young child so I'm trying to manage expectations as much as possible. I appreciate we all react differently but with my son in mind I'd rather know worst case scenarios as I'm wanting to try to keep things as normal as possible for him as long as possible. Many many thanks X
A warm welcome to the forum although I am sorry that you had to find yourself here. Sadly your experience of being misdiagnosed is all too common with quite a few members on here who had to push and push for further investigation in order to get a diagnosis. It seems that some GPs just aren't familiar with or haven't had many patients with anal cancer visit the surgery.
The chemo/radiation route is the standard treatment world-wide for anal cancer; I don't know of anyone, at least here in this forum, who had alternative treatment. I really like my oncologist and she was very straightforward with me and I was left in no doubt that this type of cancer is very very sensitive to the chemo/radiation combination and the success rate for eliminating the tumour is very high. Everything else I investigated does not apply to squamous cell cancer. In fact the cancer nurse I spoke to told me that prior to developing this treatment, years ago the standard was radical surgery to remove the anus and a colostomy was created.
I had quite severe side effects but quite a few (I think mainly the younger ones!) fared much better and recovered much more quickly. I didn't have any complementary treatment so I will leave to other members to share. One essential that I couldn't have managed without was a Sitz bath, I used it with lukewarm water to ease pain and also for bowel movements at the end, which were much less painful under water. The team treating you will keep you well supplied with painkillers and any cream that you may need.
Just remember we are a really friendly bunch on here and are totally open-minded whatever you want/need to talk about; we have all been through or are going through the same.
Best of luck with your treatment, do come back and let us know how you are getting on.
Thank you so much for your welcome and all the information Irene. Yes I've felt quite annoyed & frustrated with the GPs and how much time was wasted, I have since read of others also experiencing this with GPs. I'm also annoyed with myself for enduring the pain for so long or until it got to a point I had to seek private advice. But keep reminding myself there's nothing I can do about that and I am where I am, at least it has been detected & to focus on what can be done from now on.
I have a sitz bath from the pain with the lumps before so it's good to know to keep a hold of it as it'll help ahead. I hadn't thought of doing the bowel movement in it so that's a very useful tip and really good to know!
It's extremely likely I'll be going down the traditional route and it's very re-assuring to know it has positive results. Yes I am grateful that at least we have this option and not the alternative of surgery, which I appreciate some may still have to have. I suppose it's the lack of control one feels through all this and if I can possibly do other things alongside it as complimentary treatments then I feel a bit more like I'm doing all I can to counteract the radiation and help my healthy cells along the way
Many thanks xx
Hi Em44, welcome to the group which can be a rich source of advice on how to cope with going through treatment. Remember we are all different, young and old and kind of in the middle and respond differently With regards to the side effects. My first appointment with my oncologist was a nightmare as she is destined to tell you all the possible side effects but said to me I should cope as I was young (67). So that was great to hear. I had a fantastic support team of Macmillan nurses to help with side effects. I went down the root of using a gel on my skin called StrataXRT which is expensive, I think it cost me around £89 online. My oncologist agreed I could use this and it has to have contact with the skin 24 hours a day. It’s a bit awkward because of the area traffic but you use a very small amount and quickly spread around the genitalia and keep this on even during the radiotherapy sessions. You can read up on it online. I think Leeds hospital did a trial on their cancer patients and found it a success but I think it stopped due to the cost. I did start to get internally sore around the fifth week but externally my skin was great. I also considered having the hyperbaric oxygen therapy as we have a centre locally that does this but when I spoke to my oncologist about it she said she didn’t want me to waste my money and that there was not enough evidence to support having it. But that’s not to say other illnesses do not benefit from this. I think you have to have ear and eye tests before having this due to the pressure. I have problems with ears and flying so was a bit worried about it anyway. I am not going to bombard you with loads of information but will say try and prepare a network of help from your family and friends so when you are going through treatment and it gets tough you have help especially with you having a daughter to look after. Remember those who have this treatment and experience hardly any side effects probably don’t even come on this site so remember that. Take care
Really appreciate your reply Jaycee, very helpful. I kept thinking surely by now they have a cream or something to use as a barrier / form of protection to the area and adjacent external areas during radiation to protect the skin - I will definitely look at StrataXRT, thank you so much. It's a shame so many have to suffer down to costs on the NHS when there's something that appears likely to help. I feel if I can keep this under control a little it'll make the process somewhat more bearable!
Interesting what your oncologist said, I've found lots of research papers on the hyperbaric oxygen treatment & cancer. A lot of it is regarding post radiation issues, but I'm thinking I'd rather take the chance of mitigating that as much as possible & helping my healthy cells stay healthy and hopefully minimising chance of post-rad issues. From what I've read, the cancer doesn't like the oxygen either and can help improve chemo and radiation outcomes, so appears to be a complimentary approach.
For anyone reading that may be interested in this there's lots of info on-line. I found this site quite useful and has a number of research papers:
The Multiple Sclerosis societies / centers scattered across the country tend to have this as a treatment. My local one is offering me a trial, and if ok, treatment along side the chemoradiation at a discounted rate as it's subscidised by the charity. Their medical team will come up with a protocol. I guess I won't really know if it'll help but I'm thinking prevention better than cure so may give it a whirl.
Yes, I'm not used to accepting help but I've realised with this I will be reaching out to family & friends to help along the way. I'm aware others also want to feel they are helping and it is nice to feel so supported at this time. I am very glad to have also found this group as everyone understands what it's like thanks so much xx
Hi Em, I shared your nervousness going into treatment and definitely echo what others have said that side effects seem to vary a lot from person to person — my med team has said the same. I was able to do pretty much all my normal work etc through week 4-5 of treatment. Week 6 was rough and the first week post treatment was the roughest. Intermittent pain (especially when having bowel movements) that was, honestly, not possible to entirely hide from my kid …albeit we have a very small house..so maybe would have been more possible in a bigger place. The part I was least prepared for was how tired I would be even 3 weeks post treatment. My immune system blood work is all pretty much back to normal but my red count is still really low and I get tired so quickly and easily…at 3 weeks out. I’m working about 5-6 hours a day (remote desk work) and can barely have enough energy to make a simple dinner in the evenings. So…if I had a small child…I’d definitely need help. One piece of advice…people were bringing is meals on week 1 of treatment..when I felt normal…if you can advise your village to hold…you’ll need those meals way more in week 6 and post treatment! I do suspect age plays a role in our resilience to the treatment…and I’m 63…I imagine you are younger. So hopefully you will have a relatively easier go. I honestly only had 2 weeks of it being really rough ( last week of treatment & 1st week post). Those 2 weeks were definitely really challenging…lots of sleeping, lots of baths, lots of time lying on my back with my legs splayed. My experience was that I just had to grit through those 2 weeks. Hoping you have an easy go of it!
Seriously, I am sitting here absolutely amazed that you are working, I spent SO much time sleeping/on the loo/in bed/definitely legs splayed I am in awe! But please, be kind to yourself; you and your body need to recover, I had help and I am hoping you do too.
So sorry that you've got the credentials to join our merry band, but since you do, this is the best place to be!
I like alternative medicine options for certain things, but never saw anything that I found compelling to use for this particular health challenge. I'll be very interested to hear how things go as you keep looking.
I"m glad you're so open and willing to call in your troops. This is a situation that calls for it, especially with having a young 'un at home and totally reliant on you. Plan to have plenty of help for the last week or two of treatment and for sure the first couple of weeks afterwards. There are people on this forum who blow my mind with how powerfully they cope, but not all (or even most) of us can get by without help and lots of it. Get drivers, people to bring you food, and lots of help to keep your son busy and not fretting about you.
If you can get a bidet attachment on your commode, do it! Huge huge help. If not, Sitz baths and peri-bottles.
Keep us posted!
Hello Em44 – you’ve already been given lots of good advice and info on here which will be invaluable and help enormously with your treatment.
I don’t want to “muddy the waters” but I also I looked into hyperbaric oxygen therapy (HBOT) in 2022 as a potential treatment for the long term effects of my pelvic radiotherapy which I had in Sept/October 2020. My diagnosis was T4 N1 M0 squamous cell carcinoma of the anus and the treatment was chemoradiotherapy with an ACT5 trial at BHOC.
My response to the treatment was good in that there is no evidence of disease according to scans and regular 3 monthly DREs but I have been left with long term side effects, i.e. persistent urgency to have a bowel movement 2-3 times a day (usually in the morning), pain on opening the bowels (in particular in one area which, I assume, is the original site of the tumour), anal/vaginal stenosis (stricture) and fragile, less stretchy, easily split/broken skin.
My consultant says there is some evidence that HBOT may help damage in head and neck, bone, prostate and bladder but it would have to be very high pressure i.e. not that used for MS but
“Navy” grade. He doesn't think there is evidence that it helps skin or bowel so, based on his comment about needing to be high pressure, I discounted the MS-related treatment centres and found the closest hyperbaric medical centre to me which was Plymouth called DDRC Healthcare (www.ddrc.org). They specialise in diving medicine, hyperbaric oxygen therapy and medical training and offer therapy to patients with conditions such as slow healing wounds, diabetic foot ulcers and tissue injury related to radiation.
Their response to my enquiry was that they have very specific indications for their treatments as they only treat those for which there is good evidence that HBOT may help. Patients have to be referred to them by their specialist consultant in the first instance. They do accept patients that have a diagnosis of radiation proctitis but this has to have been confirmed by a referring consultant, usually after endoscopy +/- biopsy. They also said that HBOT can be used to aid with wound healing but is unlikely to have an effect on the stenosis/stricture or the fragility of the skin.
My consultant declined to refer me as he doesn’t think HBOT will help my situation but did refer me to a colorectal surgeon to discuss things further. We’ve now ruled out anal dilation (results not reliable enough, could cause more problems, usually need to do the procedure several times at least) but the surgeon referred me on to a gastro-intestinal physiologist so I’m waiting for that appointment now.
Also, a few days ago, I saw a local BBC news item about the Macmillan Radiotherapy Late Effects Service which is a pilot for a new service within UHBT and the South West (Bristol, Bath, Cheltenham + Taunton) so that’s another possibility I’m pursuing. Hopefully, it will become a permanent service in the future!
Hello Colly I have just read your post and found it really informative regarding the HBOT. I also can relate to your post treatment issues regarding stenosis and painful bowel movements. I am 19 months post treatment and just been diagnosed having radiation fibrosis. Frequency of bowels fluctuate regarding what I have eaten. Your consultant seems to give you lots of support and information. I have just been given two weeks treatment using instagel for the fibrosis pain but don’t think it’s going to be a cure. Very interesting idea re gastro intestinal physiologist.