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
Thanks so much for sharing Colly, it's very much appreciated – there’s no mudding waters with me, I’m very open to reading all’s input as there’s always different experiences and varying viewpoints, even amongst all areas of medicine / medical professionals. It gets down to us as individuals to research matters, weigh up different perspectives and come to our own choices. Yet, especially with matters such as cancer, it’s a highly pressured time and once diagnosed actions are fast paced, although people are often in shock, minds are spinning, barely having time to digest it all, let alone fully investigate choices available as individuals.
It's great news that the disease has responded well, although I am extremely sorry you’re experiencing such issues post-treatment. I’ve read about post radiation issues and more groups appear to be forming regarding this. So it is positive to read that there’s a radiation late-effects service being piloted to acknowledge this. I hope it becomes permanent and more become available to help those suffering after treatment, I can only imagine how it must feel. It makes one realise the magnitude of individuals over the years who have suffered with probably little help. It’s one of those double edged swords as essentially the treatment can save lives, yet then there’s the toxicity to healthy cells and risk of life altering issues post treatment.
I’ve read many circumstances where individuals have cured their cancer using alternative methods – basically they were given no choice as they were offered no treatment due to the severity / spread of cancer. Although I’m aware that certain treatments only work with certain types of cancer and as Irene previously mentioned, there was a time when surgery would be our only option, so I’m certainly extremely appreciative that we have chemo & radiation offered as treatment now! The research is fast moving so I can only hope that additional less invasive treatments will be provided in the future.
I really hope the gastro-intestinal physiologist is able to provide some solutions to your issues and relief, it sounds like it’ll be beneficial. I’d be very interested to know how that goes. Many thanks again for the helpful and interesting information, I will definitely research more into this to fully consider if it’ll be worthwhile taking alongside treatment xx
Hello Bumwarrior (great name) – yes, just to update re the appointments I had with the late effects service and gastro-intestinal physiologist…
I’m in Bristol and I saw the radiographer who’s set up the late effects service here, apparently there was a question as to whether there would be much interest but she told me recently that she’s got 75 people on her list already (although I assume these aren’t all pelvic related) – and that’s before she’s goes out to GPs to raise awareness with them! Before the appointment she sent me some questionnaires to fill in re my physical/ practical/emotional concerns, general health, a 3 day food/drink/symptom diary etc. and then we had about an hour discussing all of the above. There is no magic bullet of course but here are some of the suggestions:
When I saw the physiologist, (the late effects radiographer sat in on this appointment too which was useful) she covered some of the same stuff such as regular paracetamol to help the brain forget/stop anticipating the pain, diaphragmatic breathing and the breathing/bracing technique to focus on breathing (and not straining) and using a stool to make sure the knees are higher than the hips when sitting on the toilet.
I think I’ve included all of the suggestions for completeness whether I’ve heard them before and/or tried them or not. I do try to use breathing as a distraction, already use a stool, watch my diet and will try and get to grips with pelvic floor therapy but not so keen on taking regular paracetamol given that I’m not in permanent pain. However, the pain has got worse recently and there’s a lump of fibrotic tissue caused by the radiation getting in the way of a BM (and making my recent DRE even more difficult than in the past!) so I’ve just started experimenting with applying Sheriproct first thing in the hope that it helps with the pain of the first BM and taking paracetamol at the same time in the hope that it kicks in for the second BM. Trying to apply anything using those hard plastic applicators is a nightmare so I might enquire about pessaries…
Interestingly, the late effects radiographer said that she could refer for HBOT if she thought there was evidence that it could help someone’s particular problems (but I don’t think that’s me) and she is also keeping up with other things that are being looked at such as laser therapy. I’d be really interested to see if laser therapy has any potential in the future to be used for side effects like some of ours although I assume at least one of the stumbling blocks may be the site of the area to be treated so I’m not holding my breath...has anyone else heard of this as a future possibility?
Hello Colly a great read. I have been to an after effects team and also a pelvic physiotherapist who I am still seeing. I am 23 months post treatment and had on and off problems with radiation fibrosis. It’s is just inside the anal entrance and I read a brilliant article regarding using Tammanu oil for those with radiation fibrosis and massage using your finger. The participants did this for five minutes a day. I did not do it this long, just a couple of minutes and it has improved the skin and the bowel movements are so much more pain free. Even on my last oncologist appointment she said examination was easier. I also do the deep breathing and pelvic floor exercises. Good luck
Hi Colly , this made for a really interesting read! Thank you for posting!
I’ve heard of a couple of these techniques & these will be so useful for others that are struggling with post treatment issues. As with Jaycee12 advice on the Tammanu oil massage everything is worth a go to relieve the longer term side effects of this treatment.
In particular I’m a great believer in the use of moisturiser on the radiated skin, I still only use aquamax cream to wash that area with as I was advised throughout my treatment as I find anything else, even the gentlest of products, cause my skin to dry out & burn slightly & I find if I moisturise the skin before bed the next mornings bowel movement is so much easier!
Also let’s talk Kefir, following a conversation with someone I know who’s a trained nutritionist although actimel etc., advertise they’re full of ‘good bacteria’ because of the shelf life of these products most will be dead before consumption, on the other hand a good quality Kefir will do wonders for your gut health, I used raw goats milk Kefir from the Chuckling Goat (available online) for the weeks prior to my treatment & started using it again approximately 6 weeks after (was advised as it’s a live bacteria product not to use whilst having chemo for obvious reasons) & honestly aside from a bit of bloating from certain foods & a couple of rogue things that now give me gas that didn’t bother me before my digestion is in pretty good shape.
Please keep sharing these suggestions & findings if you have time as many people here will find them beneficial I’m sure.
Hi Colly this is great info, thanks so much for sharing it'll be of great benefit to others. I need to look into pelvis floor exercises still and remember post treatment to carry on moisturising etc.. Yes I'd also be interested in laser therapy. I wonder if there's any other areas that have this service set up - it's definitely worthwhile.
Hope it all helps you.
Jaycee12 I need to get some Tammanu oil in, thanks for the reminder! Really helpful.
just thought I’d share how I’ve got on with chemo and radiotherapy which finished around the end of March.
I pretty much sailed through the radiotherapy sessions until towards the end of week 5 when side effects started to kick in and the worst period was a few weeks after it ended where I suffered with burns and tiredness mainly. During those last few weeks I couldn’t really do much and went to the loo with a jug of luke warm water in hand, but it passed and like me you will come out the other side. Through your radiotherapy until the point at which side effects kicked in I was able to maintain my normal exercise routine as well as after I’d healed, and I think that helped with my recovery. I also had HBOT sessions after my treatment had ended (I was advised not to whilst going through treatment) and again I think this massively helped with my recovery. I was less tired and although I can’t say for sure I believe it helped me heal quicker. Now I have no continuous side effects and I feel back to normal. Treatment pushed me into early menopause but I was told that would happen at the beginning, however this is being managed with HRT. Im 45 by the way. To help prevent long term damage to bones (osteoporosis etc), I take collagen powder in my tea/coffee along with vit D and calcium and I continue to exercise.
just wanted to share my experience with you to give you hope that you can get through it relatively unscathed. I wish you luck with your journey xx