Low Rectal Cancer Diagnosis - newbie on here

Hi Lisa,

I had similar situation, I'm 36, had similar symptoms for bout 6 months and again was told it was piles and also ibs, I knew deep down there was more to it and felt was fobbed off due to age, I too got private appointment and discovered almost 10cm tumour right near the bottom of the rectum, consultant said probably been growing for 12 to 18 months, luckily no spread but a couple of lymph nodes were "enlarged" , I had 5 weeks of chemo tablets and radiotherapy which I started only couple of weeks after diagnosis, for me I had great response to this treatment and the tumour completely shrunk, I was diagnose in July last year after above treatment had wait while that did it's stuff and had resection surgery just after new year, again I'm happy to say all went as perfect as it could, i have a temporary illeostomy but that's small price to pay, surgery took about 6 weeks to get over but again  all tissue and samples they took out have come back no evidence of cancer. So stay positive it is tough but can be treated, I'm going through post surgery chemo at the mo which I admit is for me by far the toughest part of the whole process so far, but I have 1 more session left, again this was recommended due to my age and being aggressive to try and prevent any reocurrance. Then plan is for illestomy reversal around Septemeber. I be honest the support I have had from the consultants , surgeons ,hospital, McMillan nurses etc have been brilliant, stay strong and best wishes

Kevin 

Hi KevH

Glad your appointment went well and that your nurse gave you something to help.  

Thank you also for sharing what she said about Sudocrem -  interesting.  This is something that anyone having radiotherapy should be made aware of.

Lots of us use these widely recommended branded cream and it never enters our head that they might contain a metallic element.   Sudocrem is something that most of us have in our medicine cabinet and is a very good standby cream for many minor conditions.  Dressings containing elements of silver are excellent in certain applications too.

I hope the dressing help.

Take care,

VickiLynne

Hi VickiLynne,

If I had looked more deeply into the pamphlets contained in the ring binder they had given me it mentions in there about not using Sudocreme as well.

I should have read that bit a bit more thourough. I’ll probably have to ask for some more dressings when I go in tomorrow. As it’s not one of the best places to put dressings and the nurse said I could re apply the same dressing after toilet visits as long as they are not marked.

Easier said than done that as my requirements to go to the ROI can come on quite rapid and whilst I have got to the toilet just quickly enough the dressings have become marked on many occasions as the actual passing of motions is usually proceeded by a lot of wind.

What a subject to talk about lol.

My last 5 doses this week. I don’t know what aftercare I’ll be getting after Friday up to me going to Clatterbridge on June 28. Don’t know if I’ll be referred back to GP till then or if I’ll have to go back to Saint James in between to have my sore bum checked.

Kind Regards 

KevH

My earlier Post should have said Toilet and not ROI

The predictive text on my phone is doing my head in. Lol

Hi KevIn

My predictive text drives me mad too.

About the literature we are given when we are first diagnosed or starting a different type of treatment.  I'm a patient Reviewer for Cancer Services for NHS England.  We meet with the MDT to discuss how they perform in line with NHS guidelines and I'm there to give the patients perspective, the clinicians do the hard bit and I mainly review patient literature and I also ask questions of the Specialist Nurses and stress how important they are to us patients if we are lucky enough to have the support of one.  Anyway back to the brochures and other bits of paper we are given. I do try and stress that sometimes we are given an overload of written information and half the time we feel it's too much to go through and as you have found out, it was there about the Sudocrem but wouldn't it have been better if that had been brought to your attention.

I hope the rest of your treatment goes well this week and that you are given a good supply of the dressings.  Trouble is they just don't understand how difficult our bowels can be to control.

Take care,

VickiLynne 

I am not complaining but the ringbinder mentions about a Key Worker but I haven’t been approached with that. It also mentions about a Holistic Assessment being done I am not aware that has happened either.

The Chemotherapy diary mentions about that being gone through with the nurses that hasn’t happened either.

Don’t know if all this is supposed to really happen and if it’s because of staff shortages that it hasn’t happened.

When it was assumed that I was going to go down the Gold Standard route I had a contact number for a Stoma Nurse to contact but as I have decided to go down the Papillon Route nobody has identified themselves to me as a Key Worker.

I was given a card with numbers to ring for Radiotherapy nurses whilst at home if I should have problems which I haven’t felt the need to use. I am going on quite well so I haven’t pushed anything but If you are on your own without a good family support network then it could be an advantage to that individual to have these things mentioned fulfilled.

Kind Regards,

KevH

Hi again KevH

It is confusing.  The expression Key Worker is sometimes used and sometimes Cancer Specialist Nurse.  It is someone to contact if you have problems, and they are there to support you throughout your treatment. It sometimes gets complicated if you have different treatments.

I met my Cancer Specialist Nurse on the day I had my colonoscopy and she attended most of my early appointments with my surgeon and oncologist and she answered and questions or talked me through any worries I had whilst having chemo.    She still sometimes comes to my follow up appointments.  

I should think that the card you have been given is for your Cancer Specialist Nurse, have a look at the card, it should give her name and title.

In some hospitals, where there is only a few Specialist Nurses your key worker could be one of your consultants or another clinician but they often don't have the time to offer much support.

The Holistic Needs Assessment can be carried out at any time, but often at the beginning of your treatment.  You may have had one and not been told that it was your holistic assessment.  They ask you lots of questions about yourself, your home and family circumstances.  It also covers your emotional, spiritual and financial concerns. The general idea is to create a care plan with you and the nurse (or key worker) discussing your needs.  Unfortunately, nurses have problems finding time to spend the necessary time to go through everything in detail with everyone but you can ask for a full Holistic Needs Assessment.

I hope the above makes sense to you.

Take care,

VickiLynne 

Hi Catherine

I’m so pleased to hear you’ve had a great result with the Papillon treatment! We wanted this for my mother but we have been told at another hospital that the tumour is too low (close to the exit) mum cannot have surgery and we have been told that other types of radio therapy could make her symptoms much worse than they are already (excess fluid/diohrea day and night). We didn’t ask why it wouldn’t work begin too low as we were too upset and disappointed, but I wish I had for peace of mind.  I can’t help thinking that mum was such an ideal candidate at stage 2 with no spread. We are not sure what to do now. Did you have to be referred to Prof Myntt? 

Good luck with your remission, it sounds like you made the right choice!

Best wishes

Hannah

The card doesn’t have any specific name just a number for the Radiotherapy nurses or the ward. Definitely didn’t have any Holistic assessment.

The only thing I have had was a meeting with a Nurse pre starting treatment she gave me the ring binder pointed out the possible side effects and what to do if I developed any chest pains to ring 999. Answered a couple of my immediate questions and Sentra  me on my way to the chemists to get my Chemotherapy tablets. 

It’s only after I saw the bits in the ring binder that I picked up about the the Key Worker and Holistic assessment.

Otherwise only contact that has happened is after 2/3 weeks I had appointments with the Oncologist and last Thursday with the nurse which in the main involved looking at my bum and supplying me with some dressings which she had the pleasure of looking at my spot just on the entrance to my bum and fitting the first dressing and showing me what to do with them.

I will probably be okay but if it’s not happening with someone who is on their own and no family support it could be quite daunting.

Kind Regards 

KevH

Hi Hannah,

I too have followed Catherine’s chats on here and due to reading her journey and treatment via Papillon. If you look back on the thread you will see my journey.

I after the initial diagnosis I had a follow up appointment with the Oncologist I had joined this thread and particularly Catherine’s Journey and subsequent treatments by Papillon. I did some research and by the time I had the appointment with the Oncologist I asked specific questions to get specific answers and it fell into the Parameters of what I thought was a candidate to explore the Papillon Treatment. So I asked to be referred to Professor Myint the Oncologist said it wasn’t the Gold Standard but they would support what I wanted to do. So in short if the spread is 3CM or less and no affect on any other organs or Lymph Nodes it may be a possible case for Papillon.

Whilst I couldn’t say that I was a suitable candidate I wanted Professor Myint to be the man to say if I was or not.

If your Mothers is in the same parameters ask for her to be referred especially if they are saying she can’t have surgery. 

It’s worth a shot.

Kind Regards 

KevH