Scared and angry

Oh, Bobby, I'm so sorry. Your head must be spinning madly. It's so frustraing when you think you've got the all-clear and then this comes from behind to bite you. I totally get the anger. 

Many of us started with a piles diagnosis that we had to push to have investigated further. I'm glad you kept pushing and they kept looking. I'm guessing that if your earlier MRI and CTs were clear, that they caught the anal cancer early? If so, it's very fixable! 

What has your team suggested as the next step?

I'm glad you found this forum. Keep us updated on what's going on.

Hugs

Suz

Hi Suz,

Thanks for your words of support.

Initially I was told chemoradiotherapy. This was on one of my first visits to the hospital when everything was still uncertain. Since finding something on my liver I'm to have another mri ,bloods, and dependant on results of that, possibly an op before anything else. 

I'm trying to be positive. Been told to take a year out to sort myself then should be good to go but this liver thing is eating me up.  When I'm occupied all seems normal but then the fear creeps in and I'm a mess.  

Any suggestions for pain relief? All ok until I need the loo then I feel like my world is trying to get out of my backside. The usual pills not really touching it. 

 Uncertain whether connected to the breast cancer as all lymph nodes were clear but they are looking into it. 

 Glad I found the group. Can't really talk to anyone else. 

Xx

Hi Bobby B ,

Welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

I can completely understand the ‘why me?’ especially with your previous breast cancer history. Also unfortunately it’s a too common occurrence that anal cancer is misdiagnosed as haemorrhoids & something around this needs to change now!! 

I was diagnosed with anal cancer at a very early stage & my tumour wasn’t visible on either my MRI or CT diagnostic scans but it was definitely there as I’d already had a positive biopsy & it could be felt on an internal examination, the fact that nothing was found on your first biopsy suggests that either the Dr’s biopsied the incorrect area which I would think is unlikely or that the area is pretty small & they've been more specific when you’ve had your second biopsy. It’s easy to say don’t panic because we all do but it’s usually advanced stage anal cancer that leads to liver mets, you’ve already said also that your breast cancer diagnosis had no lymph node involvement although they’re investigating this by the sounds of things. 

Regarding your discomfort going to the loo, you’ve had 2 biopsies so you’re bound to be sore, I don’t have much advice regarding pain relief as I could only take paracetamol & ibuprofen throughout my surgery & treatment but have you tried taking a stool softener so that things are easier to pass? I relied on Movicol or Laxido throughout & for approximately 3 years post treatment to keep things comfortable when going to the loo, these are sachets you mix with water that just soften your stools opposed to laxatives that make you go more! 

You’re in the right place here, amongst good company, we’ve a lovely supportive group here so if you’ve any questions please don’t hesitate to ask & we’ll help wherever we can.

Nicola 

My heart goes out to you, no wonder your head is spinning.  You have had bad luck in the last 18 months and you now have this to contend with.  And I have great sympathy with you voicing why me?  I think most people would in your situation.  From what you say, it sounds as if you have just had these results, are you having a PET scan next?  I ask because in the early days it is terrifying because you have no control.  But once you have a treatment plan everything moves so fast, and there is a huge feeling of relief that you are on the road to recovery.

I do hope I'm not wrong, but I really would be surprised if any consultant would go out on a limb to tell a patient what you have been told unless they were pretty sure of their information, most consultants don't commit to statements like that.

I was diagnosed with anal cancer with local lymph nodes involved and a spot on a lung (although it turned out to be a spot on each lung).  I had six months chemo, Paclitaxel and Carboplatin which I tolerated really well with no really bad side affects apart from losing my hair.  This treatment contains any spread and shrinks the tumour.  This was followed by 28 sessions of chemo/radiotherapy, then two ablations a week apart on the lungs.  The team treating me are happy with my progress and there has been no recurrence in my lungs.  There can be slight differences in the treatment pattern and it sounds if as they are tackling the liver first but I think you will find out more when you have the results of your next scan.

What I can honestly say, for me, nothing has been as bad as hearing the diagnosis.  In the early days I couldn't function at all to the extent I couldn't even take a phone call from the hospital.  I had so many tests, scans and appointments and throughout I was like a zombie and in a total state of disbelief.  I thought my death was round the corner and bed at night was a very dark place.  My doctor, who had cancer himself as a young man, was wonderful and prescribed me anti-depressants which helped control the thoughts in my head. And once treatment started I began to feel so much more positive, and actually happy again.  It also helped that I had a very bullish oncologist who was very clear in all steps of my treatment.  Of course, nothing takes away the fear of the ongoing scans and check-ups, but I think that is always there for everyone.

There are lovely people here on the forum who have all been through what you are going through and some have stayed around to help and support others with this cancer.  So please come back at any time to let off steam, have a rant or for advice on your treatment - there are no holds barred on what is discussed here.  I'm thinking of you.

Irene xx

Hi Bobby,

As far as pain relief, do you have a Sitz bath? That really does help a lot. Stool softeners, of course. None of the OTC pain meds did much for me once I started treatment. I really needed the px meds from the doctor. Talk to your cancer care team and let them know the degree of pain you're already in, and see what they can do for you. 

Hugs

Suz

Thanks for the advice. I'm on Laxido at the minute. It's not that my stools are hard, more like I feel I need to strain from where the tumour is. I try not to but once that feeling comes in I can't help it. Unsure if I then tear slightly but have cream which sometimes seems to do nothing but aggravate me. 

I will get in touch with the nurse and see if there's anything she can advise. 

Xx