Hi I'm new, my journey from the start

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Well I wish I'd been told about this forum, in all the bumph I had from hospital nothing about Anal Cancer groups. 

Nov 2022

I was told by a Gp I had a pile, went back couple weeks later, seen another gp and was referred urgent cancer referral.

Seen within the 2 weeks. 

Consultant told me he didn't think it was cancer as not symetrical but would biopsy to find out what it was. 

Biopsy day, again told by consultant he didn't think it was cancer, and I would hear via letter with results. 

3 weeks later no results. 

I phoned his secretary. 

He phoned me back 4pm on the 4th Dec22 to say sorry its cancer and he would refer me to local Cancer hospital. 

Christmas came and went with No support or face to face with Dr's. 

4 weeks later Jan 23

I met Velindre consultant 

He informed me its stage 1 and what cancer I had. Squamous cell carcinoma 

Pet scans, mri with die all made me terribly sick. 

Started the brutal treatment, dual therapy 5 weeks radiotherapy 5 days a week and chemo tablets for the duration of radiotherapy. This had some horrible side effects of bowels and bladder and nausea. 

4 months post treatment now. 

Had Mri 15th June 

App for results 5th July 

I've still suffering side effects, I go to poo frequently through the morning average 3/4 times then can go with very little notice anytime through day. I've got a little dribble incontinence and some fatigue. 

I've now got a new lump on the anus that  goes inside my bottom. Also My sit bones hurt, my groin hurts with nerve pain in my under carriage. 

Going to ask the Consultant to check it on the 5th. Really worried 

I've really not known where to turn for support and only just found this site. 

A roller coaster of a ride. 

  • Hello Jinnie

    I am so sorry you had to find us in the first place, but a warm welcome to the forum.  It really is a pity that the forum isn't more widely publicised, I think it would be an eye-opener if some of the staff treating us were to read it.  You are right, it is an absolute roller coaster of a ride and many take a long time to recover, both mentally and physically.

    Unfortunately your early misdiagnosis of piles has happened to many people on here but I am relieved the second doctor was on the ball and acted on his suspicions.  The treatment is brutal, there is no doubt about that and I am sorry you now have a new worry.  The good thing is that you are now under very close surveillance and if the oncologist has any worries about this new lump s/he will act on it straight away.  It is such early days for you it may well be scar tissue forming, I was told the radiotherapy continues to work for some months after treatment ends.

    I am fifteen months out of treatment and still have to have at least three bowel movements in the morning, and in the early days I had extreme urgency at other times as well.  Thankfully that has improved somewhat, as has the loss of mucous that I had similar to you.  And at four months out of treatment I was still carrying around a cushion to sit on too, a hard chair was impossible to sit on for any length of time.  I would tell your oncologist about the things that you are struggling with, in particular your pain, and of course the lump.

    I hope that you are in a situation where you can have a nap in the day if you need to; the chemo/radiotherapy takes quite a toll on the body and in the early days all your energy is going towards the repair it needs.  The fatigue can carry on for some considerable time afterwards, the last few hot days I have had two hour 'naps' in the afternoon and still slept like a baby at night!

    Fortunately it isn't long until your appointment, I am hoping you will get lots of reassurance when you get seen.  Please come back and let us know how you get on.

    Irene xx 

  • Hi Irene 

    Thank you so much for you reply. It's really good to speak to someone who has been through the same. You are the 1st person who I have spoken too who understands. 

    I'm still on the sick, so have time to take a nap as needed. I actually work for a surgery although they are not my Gp. I'm not supported by workplace, they say they cant contact me incase it misconstrued as harassment. 

    I feel as its a rare cancer nobody knows what we are going through and shocked when I tell them I've had treatment on my whole pelvic area not just the affected area. 

  • Jinnie, everyone on here understands, really!  When I talk to people about the chemo radiotherapy they have no idea of the side effects but my family are well aware and their opinion is what counts to me - they never think I am opting out if I get tired.

    Hmm.  I am pretty sure that statement from your workplace is incorrect, that sounds like rather cavalier treatment of a member of staff.  If they were ringing you up and making threats that your job was at risk, yes, but a 'how are you doing' would be welcome, I am sure.

    And you are right about it being a rare cancer, what is obvious is that even some oncologists have limited experience.

    Even though your treatment is past, you can always post on here for advice, or just to have a moan, there is always a listening ear.

    Irene xx 

  • Hi Jinnie,

    I didn't find this forum until I was finished with treatment either, and I SO wish I'd had the support, advice and humor I've found here when I was at my lowest ebb. I'm sorry you're still in this much pain. I felt like my recovery took (is taking- I'm still recovering) forever but at 5 months past treatment I was finally finding some relief.

    I'm still very squiffy about leaving the house before I've pooped at least 2 or 3 times, and often it's more. No incontinence for a while (knock on wood) but the fatigue is looming constantly. I used to be a night owl.. Now by late afternoon I've slowed to a crawl, and from dinnertime on it's just inchworming my way to bed. 

    I had a lump inside my vagina a couple of months after treatment ended. It resolved itself, I'm happy to say. But the pelvic bone pain still comes and goes. I take joint and calcium supplements, and do a LOT of stretching.

    Sometimes it helps just to have a clear few questions when you go in to see your consultant. The whole thing has made me so emotional that sometimes I've just gone in and vented, and wished afterwards that I'd stuck to the main points I wanted to iron out. 

    I'm glad you found us, and yes, we understand what no one else does. It's such a relief.

    Hugs

    Suz

  • Hi 

    I'm sure my workplace is wrong too. But I've gone with it for now. Until I'm in a stronger place. 

    Thank you for you words of support, it's so much appreciated to hear kind words to know I'm not alone and the side effects are not in my head. 

  • Hi  ,

    I’d just like to offer you another warm welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us & that you weren’t directed here earlier. In my case when I received my diagnosis from the colorectal consultant at my local hospital the specialist nurse that sat in on the consultation immediately gave me the Macmillan booklet explaining all about anal cancer, she said not to feel like I had to read it straight away but I’m an information is power kinda gal so I read it cover to cover as soon as I got home & it included details of the online community. 

    As has already been said a misdiagnoses of haemorrhoids is still far too common with people with anal cancer & this needs to change as it often leads to late diagnosis! Thankfully you went straight back & was seen by a GP that was a bit more astute. Like you I was diagnosed early at stage 1, I’m now a little over 5 years post treatment & have just been discharged from surveillance. 

    I had pain in my coccyx, hips & back for quite some time following treatment, both my oncologist & surgeon checked my scans for pelvic fractures etc., which can occur from the radiotherapy but nothing showed up other than a little wear & tear in my left hip which I already knew about. These have resolved over time  with the help of some physiotherapy. I’m lucky I didn’t suffer diarrhoea during or post treatment but did have the urgency in the early days, so when I needed to go there was no holding off for a couple of minutes I had to get to the loo straight away & it was mainly first thing in the morning for me so once it was over with I could get on with my day. 

    Obviously you’ll discuss this new lump with your consultant on the 5th & he/she should do a DRE (digital rectal examination) anyway, I hope they’re able to tell you it’s nothing to worry about, but also make sure you tell them about the leakage/incontinence too as they may have some advice on how to improve this as it’s not pleasant is it? 

    Regarding your workplace, I had no contact from my employer either during my time away from work other than a couple of times I dropped off my sick notes & spoke with a girl in our personnel department who asked me how I was doing, I must say though when I returned to work & i explained about occasions when I would need to use the bathroom frequently etc., they were understanding & supportive. 

    The fatigue can pop up out of nowhere for quite some time so make the most of your recovery time away from work & take those naps when needed. 

    Please keep us updated on how you’re doing & know we understand what you’ve been through & are going through & we’re here to support you however we can. 

    Nicola