Hello

Hello Suzie17, welcome to the site. Although like the rest of us I wish you didn’t need it. I am nearly 8 weeks post treatment for anal cancer and being on here I found a wealth of support and information. I didn’t know anything about anal cancer and thought I had the usual haemorrhoids with some anal itching and just started spotting with blood so went to my GP in December and sent for tests and the PET scan. I am so sorry you have already gone through cervical cancer and it must have been a blow finding out you have anal cancer. My cancer is HPV related and it was such a shock as you say it isn’t happening. What is so reassuring is those who come here on the site who have the treatment and become cancer free. Its always going to be a worry that it will come back and I have got to find ways of thinking positive and living life and at the moment dealing with the side effects. You will find some lovely people on here ready to give you support. Julie x

Hi and welcome to the Group although I'm sorry circumstances have brought you here.  Most cases of squamous cell anal cancers are caused by HPV. About 30 years ago, I had pre-cancerous cells of the cervix caused by HPV. Like you, I wish I had known that HPV could cause anal cancer further down the line.  I understood that in the USA they were sometimes using an anal Pap smear at women's gynaecological check ups for those who were considered at high risk of anal cancer due to previous HPV issues. In England we now have a rolling programme to vaccinate high school pupils against the main types of potential cancer causing HPV strains.   Unfortunately your story isn't unusual in terms of a delay in diagnosis, many in this group have reported delays.  I am so sorry to hear about your sister, this must make it additionally hard to deal with your current diagnosis. As you say, it is fortunate that there has been no metastasis. Hopefully, you will receive further answers and possibly details of your proposed treatment tomorrow. Just a tip, so much is thrown at you information wise in these appointments that I always took a notepad to write things down. I also made notes of questions I wanted to ask in advance of appointments in case I forgot, the appointments can be stressful and you can forget things you wanted to ask.  I hope tomorrow goes as well as possible and always come back on here with any queries or concerns.  Bev. 

Hi Susie17, I just wanted to say hello and I'm so very sorry that you have been through so much and that you find the need to be here. One of the most important things I think you should know is that anal cancer although very rare has a very high rate of treatment success. I'm 4 months post treatment and have just recently had clear scans although I still have what is hopefully scarring and also have side effects that will alleviate soon. I have to admit I have very little knowledge of all the medical terms and expertise that others have here. I chose to throw my diagnosis letters and cancer paraphernalia that I was given into the corner of my bedroom and there it still sits covering dust as I thought  'what the hell difference will it make reading scary stuff'! I couldn't have made it through the treatment journey without the lovely ladies here so again I welcome you and hope you get a quick start on your treatment and recovery xxx Marie 

Hi Susie17,

Firstly welcome to the Macmillan online community although I’m really sorry that you find yourself here. I’m also sorry to hear of the loss of your sister to this awful disease.

Unfortunately we’re not warned about the risk of HPV related anal cancer, all of the warnings & screenings are geared towards HPV related cervical cancers which unfortunately you fell foul too also! This needs to change & needs to change really soon or the incidents of anal cancers will continue to rise. In an ideal world following your original diagnosis & treatment you should have been given the option of regular anal paps also! 

We have a couple of members here that have had their tumours break through the vaginal wall also so hopefully someone in a similar situation will be along soon to share their journey. 

You’re right in what you say about the waiting for appointments, test results etc., being the hardest part of this, it takes your mind to some dark places but please keep in the forefront of your mind that this is a cancer that has a pretty high cure rate, there’s many of us here that are testament to that. 

I hope your appointment goes well with your radiologist tomorrow & please if you have any questions just ask regardless of how personal it seems I can guarantee we’ve all asked it before. 

Nicola 

Hi Susie17, and welcome.  Sorry you’re having such a rough time.  My diagnosis was similar to yours - T4N1M0 - & although I got my head round cancer ok, finding out that, like you, it’d gone through to my vagina felt like my body had completely betrayed me.  Poo coming out of my vagina - wtf??

It turned out that as the tumour got blasted with all that radioactivity and shrunk, that symptom disappeared & won’t need any treatment, reassuringly the most common outcome.

You can see a bit more if you click on my profile.  The mental side of all this has been as bad or worse than the physical.  With a lifetime of martial arts I’m as resilient as most people - hopefully you are too with your army background - but every day I’ve fallen down & had to pick myself up.

That’s the challenge isn’t it, to keep getting up!  Hope it went well with your radiologist?  xx  Toni

Hello all 

thanks for your kind words. I saw my radiologist today and boy do they do things differently in Germany… My PET scan showed no other cancer anywhere but the original tumour and where it grew through the wall into my vagina . So I’m T4N0M0.. I’m to have 6 weeks of radiation. I will have 2 rounds of chemo the first week and then the 5th week,  of 5FU and mitomycin.. they don’t use the pill chemo here Capecitabine. The doctor said it causes way more stomach problems diarrhoea than 5FU. I will be in the hospital for 5 days for the first round of chemo with radiation and if I have a lot of problems with the radiation they will admit me and do all the radiation inpatient. And a week at week 5 in the hospital for chemo. I’m having another CT and MRT to map the radiation and then treatment starts on the 30th. Thanks again for writing me and I appreciate everyone

Hi Susie17, it's good that you've now got a start date in place which is only a couple of weeks away.  In the UK, as well as the combination of mitomycin and capecitabine tablets,  we also have the regime of mitomycin  and two rounds of 5FU although the latter tends to be delivered via a pump at home. It depends which area of the UK you live in as to which regime you receive. There's no real difference between the two regimes in terms of outcomes as far as I am aware. At least if you are to have the two rounds of chemo in hospital  it will save any hassle in travelling to and from the hospital for your daily radiotherapy sessions. As I'm sure you're already aware, the radiotherapy is the mainstay for treatment. There are quite a lot of people on here who have had similar size tumours to yours and have reported a fairly quick shrinkage of the tumours. You know where we are if you need us. Bev. 

Thanks Bev

I was really shocked that I have to stay in the hospital for the chemo. During my sister’s chemo she had hers through her port at home and drove herself to radiation for 30 days. I already have a port that was put in at the military hospital so I was all prepared to be at home with the chemo. My doctor said the only difference between the 5FU and the pills were the stomach side effects, I guess I will see soon. I really appreciate everyone here. My husband is being so supportive and will be with me every step and I know that I am so lucky to have his support. The rest of my family is back in the states and it’s hard not having them near.

Hi Susie17,

I’m really pleased that you have a start date for your treatment. Your treatment in Germany is more in line with the treatment regime in the US but I think the chemo is generally pump driven opposed to being administered as an inpatient, as Bev has said this chemo regime isn’t unheard of in the uk but the oral chemo is more commonplace here. I had the mitomycin/capecitabine combination & had very little in the way of side effects thankfully. I’m happy that you’ll have your husband for support but it’s difficult when your family is so far away at times like this isn’t it? 

Nicola 

I had my chemo in hospital week 1 and 5 when I questioned why others had tablets etc my Onc just said this is the way our hospital treat it. it was hard trying to sleep and shower hooked up and getting onto the radiotherapy table  each day was a bit tricky! It saved the travelling which by week 5 I was glad I didn’t have to drive and having nurses on hand was also reassuring. 
5 years later I’ve got a job as a ward clerk on the very same ward which is going to be a bit weird!! 
x