Hi Im needing some advice about anal/rectum cancer stage 3

Hi Jorni ,

Welcome to the Macmillan online community although I’m so sorry to hear of your mams diagnosis. 

Possibly the 5 years & 70% that your mams consultant is talking about is survival rates past the 5 years surveillance that we all have to go through following a cancer diagnosis. 

There are a couple of different treatment regimes but if you’re here in the UK the most common one is a short infusion of mitomycin (chemo) day 1 of treatment & capecitabine (oral chemo) twice daily thereafter alongside 5 1/2 weeks of radiotherapy with a short 10-15 minute daily radiotherapy session each day Monday-Friday with weekends off all treatment. The other regime consists of chemo being delivered via a PICC line & pump weeks 1 & 5 of treatment & solely radiotherapy weeks 2, 3 & 4. 

I know you’ll be wanting to support your mam in all of this turmoil you’re going through right now but please don’t forget to look after yourself too. We have a specific group here on the online community for family members & friends where you can speak with others who are in a similar position to yourself Family and friends forum if you’d like to join just click on the link I’ve posted & join the group as you did with this one. Also please continue posting here should you have any more questions, there’s so much information to take in in these first few weeks following diagnosis that it sometimes feels like the Dr’s are speaking a foreign language so please don’t hesitate to ask. 

Nicola 

Hi Nicola 

Yeah he mentioned hers will be chemo and radiotherapy 5 days a week for both chemo would be a drip in morning then radio therapy and then oral chemo at home in afternoon  and night but he never mentioned like if that could take it away completely or what'll happen if it doesn't ? It was a very confusing appointment and alot to take in , my mam was diagnosed nearly 2 months ago and was told just recently a treatment will be delayed as hospital is at full capacity.but they'll monitor her and hope it doesn't spread further for the time being .

Hi again Jorni , the excuse of the hospital being at capacity therefore delaying your mams treatment further just doesn’t sit well with me at all! I would be challenging this! Your mam has had a stage 3 cancer diagnosis & should be treated as a priority! 

There’s more than a few people that have come through the group that have had a stage 3 diagnosis, including the lovely lady that buddied me when we went through treatment at the same time, that are now NED (no evidence of disease). I hope that someone with a similar staging will see your post & be able to offer you some hope & reassurance. 

The chemoradiotherapy is short & sharp but effective treatment, should it not be 100% successful there are then surgical options but I would try not to think that far ahead right now. 

I hope that your mam gets a start date very soon. 

Nicola 

Hi  

That's exactly what I said why should her treatment be delayed by even longer when it's spread just cos the hospital is at full capacity  and wow that's amazing and great to hear that your treatment and many others at this stage too was successful absloutely happy as to read that response :) 

Hi Jorni,

So dang sorry to hear about your Mam, and I'm glad she's got you to help her through.

I see Nicola has explained abut the 70%. YES it is very possiible for the chemo and radiation to completely eradicate the cancer without surgery! Many of us here are counting on that very thing! No way to guarantee anything, of course, but it's absolutely possible. 

I'm right there with Nicola at being very taken aback at them delaying your Mam's treatment. If this hospital is at capacity, aren't there others? This cancer is very treatable but it's also protocol to get right on it once the diagnosis has been made. Get on their asses.

Keep us posted!

Hugs

Suz

Hi Jorni, so glad you found us on this site and not happy to hear about your mum’s treatment being delayed due to the hospitals excuse. I would be tempted to phone that hospital and say you have been corresponding with the famous Macmillan site who are very shocked at how your mum’s cancer treatment isn’t being given priority.  I am hoping this hospital would not want the publicity and they get their act together. As others have said it is very treatable and can for some be tough but she seems to have a wonderful supportive daughter who will help get her through this. I was stage two and nearly two years post treatment and doing great. Let us know how you get on. Julie

Hi ladies, im also stage 3, the cancer has spread to lymph nodes in pelvis and groinThrre is also a suspicious area on the pet scan they're not sure about and high grade cells in the cervix that they are leaving for now. There is also a delay in my hospital too and by the time I start treatment it will be just over 3 months since diagnosis. (I waited a year for my first consultant appointment). I am upset that it could have potentially been found a lot earlier and less severe treatment ahead but know s lot of people are in the same position.  I was told between 70 - 80% chance. I would advise to keep ringing and pushing and try to keep positive.  I have started to look into diet and foods that are particularly good at fighting cancer cells and having more of those and less of the harmful things, anything that could potentially help really.  I'm sorry you and your mum are going through this and wishing you all the best. Sounds like she has a wonderful daughter who will be be at her side throughout xx

Hello Jorni

I am really sorry to hear about your Mum and really shocked that her treatment her been delayed because the hospital is 'at capacity'.  I have looked up and national guidelines in the UK are that "treatment should start no more than 62 days from first referral."  The hospital treating your Mum should have a PALS department and the NHS says 

"What is PALS (Patient Advice and Liaison Service)? The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. You can find PALS officers in your local hospital."

I think it would certainly be worth giving them a ring and explain your worry that you have no starting date for your Mum's treatment.

My husband (with the permission of the consultant) used to record our early appointments because as you say, it is such a lot to take in and can be very confusing when you don't know all the terminology.  Then he would sit down later and make a proper record of what was said, and we could look up anything that we weren't sure of.

I am so relieved to hear that you are there helping your Mum, it means such a lot to have that kind of support, but please don't forget to look after yourself too.

Please let us know how she gets on.

Irene xx

Hi Janita I hope your hospital will soon get you started on treatment. I was first seen in the month of November 20, after months of symptoms like itching, but just thought it was soap powder or an allergy of some sort until I started bleeding in the November. January I had scans and it wasn’t until the 17th May 21 I started treatment. Looking at it now it does look like an awfully long time before it was actioned. But even after that amount of time I am doing great with no evidence of disease. This treatment is pretty robust and keeping fingers crossed for your start date.

Hello Janita, please see my reply to Jorni should you want to take the delay in your treatment further with the hospital.  I am so sorry you have had to wait so long firstly even to get an appointment and then for treatment.  I am relieved that you have a firm starting date now, and please remember we are always here to help.

Irene xx