Frightened

Hi Three and welcome to the online community. I'm sorry to hear about your diagnosis and can totally understand your feelings of fear, it's such a shock isn't it.   It looks like you've had problems for a while and at least there's now a treatment plan it place.   I see you have said that you have been diagnosed with a type of anal cancer that responds well to treatment, this is encouraging news.  Squamous cell anal cancer usually responds very well to treatment, the success rates are very good so it is likely that this is the type of cancer you have.   It's always helpful to write down things you want to ask before your appointments and then make a note of the answers in your appointment. There's so much to take in it's easy to forget things.  I know it's difficult with the lockdown, but it's better if you can take someone with you to your appointments too (if the hospital say this is ok). 

I see you are awaiting chemo and radiotherapy. Usually there is a one off short infusion of a drug called mitomycin which is administered intravenously on day one of treatment. This only takes about 10 minutes.  Then, usually 8 tablets of capecitabine are taken daily for 5.5 weeks, Monday to Friday. Radiotherapy is also daily Monday-Friday Monday-Friday. The actual radiotherapy itself is only of a short duration, mine was about 8 -10 minutes. 

The side effects of the chemo are usually minimal. I felt a bit nauseous in the first week but I wasn't sick. You will avoid the discomfort of going to the toilet during radiotherapy due to your stoma, which is good.  There are drugs to counteract any side effects you do have so make sure you tell the nurses and radiographers about about any side effects you may have. 

Please let us know if you have any more queries or worries that you want to share, we are here for you. Don't feel there is anything you can't ask about, no question is too personal to ask.  Bev. 

• Thank you so much Bev, you've made me feel better, I'm just feeling that I don't know enough about what is actually wrong! I was in hospital and it seemed that the consultant, when asked, just rattled off the diagnosis! I was alone, well, we all are of course, due to Corona Virus, but for all I was sort of expecting it was cancer, I was still hoping it wasn't! No one talked to me when the consultant had gone, in fact it wasn't until I was discharged that I told the ward sister, who couldn't stop apologising! Don't get me wrong, the staff were fantastic, from the domestics to the nurses and doctors, it's me! I should have spoke up and said how I felt! Now, because of the wound on my bottom, I can't start treatment yet! Plus why do I have to have a chest CT, I asked this of the surgical nurse and she said it was routine? I've always been a worrier, but now I'm in overdrive! Because I've already got Emphysema, you can imagine the way my mind's going!;Crikey, I do go on, I'm 70 years old, got a good marriage and 3 wonderful sons, am I supposed to just accept things? Sorry again, moan is all I'm doing here, still, it's helped me to talk it out, sorry if it's made you fed up! I'll start to look on the bright side, HONEST!
• Thank you for listening
• Three. Moira x

Hi Three glad to  to be able to make you feel a bit better. You definitely haven't made me feel fed up and you're not moaning at all!  Your experience in being told you had cancer sounds a bit like mine. I was signing a consent form for a biopsy and the Consultant mentioned that they were virtually certain that it was cancer, the biopsy was to confirm the type (squamous cell) .  I was on my own when he told me this and then I was put into a little side room waiting for my turn to go to surgery for the biopsy. It was horrendous. I had to go out of the room and ask one of the nurses to come in and sit with me. Not one of the better experiences of my life!    It's not always easy to speak up though is it when you're in a vulnerable situation like that.   Are you able to talk to your partner and sons about how you feel?  You said in your original post that you'd had a CT scan and you were told you were cancer free. Was that a CT scan of your chest? Is the scan you mention in your post above a second CT scan of your chest?  No one should just have to accept just being told a scan is 'routine'. You have an absolute right to ask the questions you want and to receive a proper answer that actually gives you information.   Also, don't feel you have to always look on the bright side, right after diagnosis is a dark and scary time. I promise you it does get better though. Bev x

Hi there Three, 

Welcome to the online community & I too am so sorry you’re going through this right now. I think sometimes Drs can be a bit matter of fact when delivering bad news, I do wonder if it’s sometimes their way of coping with a job that could easily break you if you let things get to you. If you click on my profile you can read a bit about my journey there, you’ll see I had surgery first & I had to wait 8 weeks before embarking on my course of  chemoradiotherapy. I think this is to allow the wound to heal before the same area is bombarded with radiotherapy. 

Regarding the scans I think the pelvic MRI is to gauge the cancer you’ve been diagnosed with, the CT always covers chest, abdomen & pelvis, this checks for any metastasis, try not to panic though this is as the nurse explained routine procedure, although I think a little bit more of an explanation would have eased your concerns a bit, I’m a little over 2.5 years post treatment & still have these scans annually. 

Bev has given a great explanation on the standard treatment plan so I’ll not go over any of that again but please don’t hesitate to ask if you have any more questions, we’re a friendly bunch & have all been in a similar position to that you find yourself in right now. If your Drs haven’t been very forthcoming with information about your diagnosis you have every right to speak to someone that’ll give you a better explanation about what’s going to be happening. 

Nicola

Hi again Bev,

My husband and my sons are wonderful and maybe a bit too protective of me! After I'd been told that I DID have cancer, the first thing I did was write to them, not easy when one lives in America! They have spent months, reassuring me that of course I didn't have cancer, but, when I broke the news, each one of them said they knew and now that it had been confirmed, we could get on with the fight!

I had a Pelvic CT but, apparently they were looking for a fistula, not Anal Cancer! To tell you the honest truth, I don't know what to believe any more! I know the surgeon who did the stoma refused to say anything else until he had the biopsy results, and he finally gave me the news, but only when I asked him!! 

Now I've been told the Chest CT is for staging and it's routine! I'm so confused and scared! I want to be glad I'm finally getting treatment but I'm floundering! I thought I had bowel cancer, now it's anal, and what will it be next week? Everything's happened to quickly, my head is reeling!

Three. Moira x

Hi Three  it sound like your sons are a good source of support to you and they are absolutely right, now that you have a proper diagnosis the fight can begin.  When diagnosed with anal cancer it is quite normal to have pelvic and chest scans. The scans are to check for metastasis and whether the cancer has spread to any lymph nodes and these scans continue for some time after treatment. Some areas of the UK seem to scan patients at different times after treatment but my scans have been 3, 6 and 12 months post treatment and then I will have another CT chest scan 2 years post treatment.      After you have had your chest CT there will be a multi-disciplinary meeting (MDT) at your treating hospital which will be attended by the doctors involved in your care.  Your results will be reviewed, a treatment plan will be put together and you will receive a start date for your treatment.  This is when things get easier to deal with, there is a clear plan in place and a date for treatment to focus on. Before this everything can seem totally 'up in the air'  and when you are told you have cancer you just want to get on with treatment as fast as possible.   Do you have a date for your chest CT scan yet?  Also, have you been given a designated colo-rectal nurse yet at your treating hospital?  Bev x

Hi Bev,

You've set my mind at rest yet again! What I call the surgical nurse, who I think, is actually the Colo-rectal nurse, said as much, but such is my state of mind, I didn't know whether to believe her! This in the we at my mind has been! I cancelled the CT appointment, because I was told I had to shield very strictly, and she phoned an hour later, and told me she'd rebooked it and that I HAD to go! She tried to explain staging, which you've just done, and, may I say, much better!  Lovely though the nurse, Abbie, is, you really have done a better job of reassuring me! So it's Sunday, 24th January, and I'll go! Having already got Emphysema, chest X-rays terrify me, well, there isn't much that doesn't at the moment! I don't know whether it's shock or being 70, I seem to have turned into a shaky old woman, which, believe me, 9 months ago I certainly wasn't! So thank you for starting to give ME back!

      Moira x ( Three)

Three thank you for your kind words!  This will have knocked you for six but you will start to get 'you' back slowly but surely. Try not to worry too much about the scan and the risk of Covid. They will have all the necessary restrictions and precautions in place. It is really important you have this scan done so a proper treatment plan can be put in place.  I hope it goes well. Bev x