Hello Miss E, my heart goes out to you, it's such a scary and worrying time. I hope that you can find the skilled and experienced support and treatment that you need.
I am 70 and was diagnosed last year with Stage 3 anal cancer, which had spread to 4 lymph nodes. I had no other health conditions to take into account. My diagnosis was confirmed when I had a colonoscopy and then I had a sigmoidoscopy to try and get a biopsy - both of these I was awake for. But they didn't manage to get the samples needed and so, as they have suggested to you, I had to have a general anaesthetic and then the biopsies were obtained. (How insensitive by the way, to talk about taking 'large chunks' !) It was uncomfortable to recover from and I don't think I left the house for a week afterwards!
I then went on to have the standard chemo-radiation treatment last summer - 28 days of it as is most often the case. I think the accounts here will give you a good picture of what that's like. It was extremely hard going towards the end and for the 3 weeks or so afterwards in particular, and I don't want to minimise that at all, but once I felt able to get out of the house (at about the 3 week point) for short and successively longer walks I began to feel better fairly quickly. The last couple of weeks of treatment, I had found it really difficult to eat but my appetite kicked in about a week after the treatment finished and then suddenly I was ravenous and I think that really helped.
The treatment finished in mid August and at the end of October I was able to travel from London to Mexico City to see my son for my 70th birthday, so by that stage I was confident that I didn't need to be right next to a toilet and I was able to sit on a plane for 10 hours.
I had what they call a 'full response' which means that no cancer was detected on the follow up scans I had in November last year and February this year. I am due another MRI in mid August. The only real medical issue I have is that my white blood count remains low and I'm not really sure why. The effects can be a reduced immune system and general fatigue and I have been most aware of those effects in the last couple of months - I have had colds which dragged on and my energy levels are lower than I would expect. But broadly I am active and coping with daily life and social life and bits and pieces of travelling.
Our health systems are different and I don't want to comment inappropriately, but it does sound as though it's important for you to be able to make progress with a detailed diagnosis and an outline of the treatment possibilities. Maybe others on here who are in the US can help?
Your experience sounds like it causes anxiety for you and mistrust - I mentioned HPV to my Nursing practitioner who’ said watch what you google no one knows how HPV is passed just that women get it x I am 62 and on day 12 of 28 radiochemo and it’s not as bad as I was worried it would be so far. The others on this forum are amazing and informative so I am prepped but feeling positive every day as so many others get past this horrid (and quite frankly embarrassing) diagnosis - there is nothing you have done in your life to encourage this or make it happen as in mine. Hold your head up and don’t google - Ask the experts here xx Much love and positive thoughts coming your way x
Hi I too was bad for 3 weeks after the chemoradio I couldn't sit down I had a blow up cushion and had to take a donut cushion out but after 3 weeks I started going out for walks and started living again so remember the pain doesn't last but I needed the cream and went through lots of tubes a week at the time I said I wouldn't do it again but I would so be strong and keep going and don't be afraid to ask anything as we're here to help each other .
Yes completely agree with this - there is nothing that you have done wrong. There can be all kinds of ill-informed rubbish online about HPV but in fact it's a hugely common thing, and no one knows why it develops into cancer in some people and not others.
I'm so sorry about all of this. It's a hard thing when one's bowels and butt are running our lives, even before we get the dreaded diagnosis.
I think you''re going to have to figure out a way to let them do a biopsy. I had to conked out for mine. It's a pain, and you need to get a driver, but if it is indeed anal cancer, you'll need to marshall the troops and round up some help anyway. Might as well get used to it.
I'm now 65 and a little over 2 years past my Cancer Episode. I was in pretty good health, but had had butt pain for two years prior to my diagnosis, and was blown off by a shocklingly large stream of medical professionals who were all pretty sure that I was just a wimp. Or a psycho.
I mean, if I were going to make up an adverse medical condition, would I be likely to go with intense anal pain?
The treatment was hard, and the recovery harder, but now I'm doing much better.
What can we do to support you as you move forward with this?
Hi MissE, I am sorry you have had to find us but if you are eventually diagnosed with anal cancer you will certainly get lots of support, tips on how to get through it on here. As far as the actual treatment goes and depending on what stage anal cancer is and if it’s spread to the lymph nodes depends on treatment. I was stage T2 0N but before having chemo radiotherapy 28 days Monday to Friday with the first day intravenous chemotherapy and then 15 mins radiation therapy and the following was chemotherapy via drugs Mon-FRI with radiation therapy and the last day of treatment intravenous chemotherapy. I think this is pretty much standard for those with 2/3/4 stage anal cancer and pretty robust treatment. I did have a colonoscopy before any treatment and just given some kind of relaxation gas and they found a polyp shaped like a mushroom (these are usually benign) and a sessile growth that was flat and suspicious. They took a biopsy of this under sedation and I was pretty uncomfortable for about ten days but it turned out as they suspected. Then they started the scans. Here in the UK I had a CT, MRI and a PET scan. The problem was it is considered quite rare compared to Anal cancer so had to travel to a specialist cancer hospital for treatment. It is worrying enough at the beginning as you are pretty much in your doctors hands and my treatment was successful and we moan about the NHS in the UK but once you are in the system, for me I cannot really complain apart from a couple of upsets in the beginning. They never mentioned the word HPV and to me what’s the point? You just want rid of the cancer and move on. As far as age is concerned I’m not aware of age being a factor when dishing out this treatment as cancer is cancer. I think what is important is try and get your health tip top condition now with a good diet of nutritional foods and moisturising your genitalia now to help your skin if you do have to have treatment and the fitter you are helps your body recover much better. I was 66 when I had my treatment and my oncologist said I was still young and fit and will get through it and I am now 69. I know in the USA your health care systems are different and I am wondering if the Anal Cancer Foundation network are able to give you some advice on the system and your insurance as they are a large cancer charity in the US. I would claw out as much information as you can to help you with finding your health care provider. Please let us know how you get on
A big welcome to the forum, although I am sorry to hear of the problems that brought you here, and even sorrier to hear of the struggle you have had to get appropriate treatment. I am really pleased that our American forum friend in addition to all the others have joined in to help.
I hope very much that you can find a centre (that knows exactly how to treat anal cancer) that you can attend for treatment; I am so sorry that a doctor used such emotive language to describe a procedure that has left you so worried. I had to have a procedure under GA too and, yes, it can be painful afterwards but it is a step nearer towards getting the treatment you need.
I would totally agree that the best plan, looking forward, is to gather lots of help in getting you transport to a hospital or clinic that know what they are doing (and accepts your insurance). I would also be careful in reading too much online, sadly a lot of the information is out-of-date and some is outright misleading. An expert in this field would be best placed to advise you on radiation dosage, I was 71 when I had chemo/radiotherapy and the treatment was the same as that given to a thirty-year old. It is tough, but doable and everyone on the forum is here to tell the tale. We have lots of tips and coping strategies that we share, and are always here to offer support too, should you want it.
Sending you a big hug, MissE, go get the biopsy done, and start on the road to getting your life back.
