I have posted previously regarding reoccurrence of cancer during recovery from dual therapy
I seen the consultant and Surgeon regarding my Mri result.
Consulant told me at the MDT meeting the radiologist said the option that it could be a ulcer from Radiotherapy( I finished Radiotherapy end feb) could re scan in couple months.
Consultant said he is concerned and wanted to see me.
Examined by both him and Surgeon. Decision was made for biopsy in couple weeks to see 100% before next steps can be decided.
If cancer the surgery will he removal of anus and remove whatever else is affected and stoma fitted. I understand this is a huge surgery. I got a good 4 weeks before I'll know so anxiously got to wait this out again.
UPDATE 18TH AUG
I finished chemo radiotherapy end Feb 2023 Regrowth seen in MRI June.
Biopsies EUA & HRA RESULTS. It's cancer again ! The plan is surgery but until a new petscan and ct scan unsure how much is to taken away. Surgeon informed me this is major surgery they so far are planning to take some bowel & anus fitting me with a colostomy bag, skin graft off my tummy to make a flap. This is to be done Sept if the plastic surgeon is next available (we only have 1 surgeon in south Wales to do this)
Lots to take on board and processing this is massive. How the hell did I get to this stage. I had stage 1 which could hardly be seen on MRI. Brutal chemo radiotherapy didn't kill all cells and now this. Scared and very anxious but trying to make most of days before surgery.
UPDATE 26th Aug
No date for surgery yet.
Had PET last week. Got CT booked next week and appointment with Anaesthetist next week. Result appointment with consultant 16th
Bit of a shock yesterday as I had a delivery of a Practice kit of stoma products !
I've had No contact with stoma nurses and thought I'd have some counselling before surgery to as to this.
This is a life changing surgery, is it just me but this seems inappropriate to be just sending out in post before a discussion.
What other people thought please
Yeah, the kit must have been a bit of a shock. Probably an automatic thing that doesn't take nuances into consideration. This whole thing must have your head simply spinning.
Can you call in and ask for an information-gathering appointment? Stringing it out with dribs and drabs of information must be making you crazy, but I guess that's how these huge behemoths work.
Thank for the reply, not sure how to add post as when I press + it brings up new box but with my old posts in ? .
I'm planning to ring in on Tuesday to ask for a information appointment. I find it hard to believe that something so life changing no counselling or appointment, just send out. Yes, my head in a spin.
I rang "my nurse specialist " couple days before this arrived and asked her who else would i be seeing or speaking to before surgery date. She told me she didn't know, but would ask the surgeons nurse to ring me. Not heard from her yet.
But then got anaesthetist app, ct spp, and consultant appointment, you'd thought she know process.
I can see you got a bit of a shock with this. I did know I was having 2 stomas at the point where I was given the practice kit. But I had no counselling at all or real information about stomas, except for a booklet, and confess I set the practice kit to one side and forgot about it! I know some people find it helpful to try with it, but I don’t think I lost out by not doing a practice because having stomas is very much a case of learning as you go.
Neither of my stomas look anything remotely like the pictures of stomas anyway! My meeting with the stoma nurse was simply to hand me the kit-nothing more. Maybe you will be able to get more information, but I honestly found the hospital stoma nurse useless in terms of giving me any guidance. I believe other patients can have a much better experience than I did from what I’ve read.
Oddly enough the same stoma nurse appeared at my father in law’s recent appointment (he is having his bladder removed on Friday). Luckily my partner was with him as the information she was giving him was simply incorrect. She wasn’t best pleased at having this pointed out but myself and my partner have 3.5 years of actually living with my stomas so we do have real life experience!
It’s actually astonishing that there is so little support for a patient undergoing life changing surgery, and awful to spring a stoma practice kit on you when a decision hasn’t been made. I had no counselling at all to prepare for my exenteration surgery, and when you are losing your rectum, vagina and bladder among other things as I was, you’d really think that would be the way to go.
I hope you can feel more reassured once you have your appointments.
Thanks for your reply. I find it so hard to believe no counselling either. I've put the practice kit in cupboard, I'm not ready to even look at it yet.
I've got an appointment with consultant and surgeon on 16th Sept for results of pet and ct scan so not even sure how much for definite they taking.
Everybody I had to deal with doesnt have any compassion, we are just a number not people and it's frustrating the h... of of me!
I worked in a GP surgery until last week and believe I gave a personal service to all the patients I came into contact with. I was a prescription clerk and dealt with stoma companies, nurses and patients. Now it's my turn and it's a pants service!
I've just emailed the stoma nurses told them how I feel and asked them to ring to explain next steps.
Sorry I'm having a vent.
I am not in the uk at the moment and don't have normal service but saw this and hoping this message gets through - sending you lots of support and so sorry you are going through what appears to be a very fractured service.
Sending lots of good vibes for coping, sounds like you really needs it
You have every right to vent. I was very compliant and I suppose didn’t speak up when I was going through all of this. It was almost a year after my surgery that I begged for some counselling. My consultant seemed astonished that I felt I needed it, which shows how little is appreciated about the mental health of a patient. They deal with the physical and then assume you move on and don’t need anything else, but this is very far from the truth.
I am going through a different medical issue now, and am far more vocal. I encourage everyone else to be the same. I ask questions, I question what I’m told. I don’t blindly accept any more. I’m having another surgery next week, and I asked how my previous surgery and stomas would potentially affect this. The registrar looked blank and actually, I kid you not, said “what’s a stoma?”. Seriously??? I had to explain. To say I am nervous about this surgery would be an understatement when this is the kind of things I hear.
On my last inpatient stay, a doctor actually said to me he hadn’t read all my notes as my file was too thick! I’m just another number, but my issues mean I am not your “average” patient for surgery. Yet no-one seems to care, and that is scary.
I am astonished when reading this with both Jinnie and you, Sarah. I am so sorry that not everyone has a positive experience with hospital care. My local hospital and the cancer hospital where I was treated are both rated outstanding and it makes such a difference to be treated with warmth and compassion. When I was discharged after having a biopsy under GA I didn't see the registrar before I left. That evening at about 8pm my phone went - it was him, apologising for missing me before I left and telling me how the procedure went and checking to make sure I was alright and not in pain. This, of course, is not comfort to either of you, but how can some hospitals get it so right and others are totally off the mark. Hope you get some more productive help before your big op Jinnie, and Sarah, I hope your surgery goes well. xx
Thank you Irene. I’m just back from my pre op assessment, where the staff were pleasant and at least told me their names-this is my little local hospital though. When we were going through everything, the nurse was making notes and it was then I discovered there is absolutely nothing in my record to say I’ve had my bladder removed!! Quite a major thing to have omitted, but might explain why during my last stay the staff assumed I had a catheter in!
This nurse did seem to know what she was talking about, but because I’ve had all sorts of things done at 4 different hospitals since I was first diagnosed with cancer, the notes are disjointed and have things missing. I’ll just have to hope all goes ok!
An update, I've had a phone call from stoma nurse but unfortunately missed the call as I was resting. She ringing back tomorrow. So hopefully I'll get a appointment.
I have had 1 positive experience through this journey. I went into a smaller hospital for 2 lot of biopsies, I had a designated named nurse who was lovely. The process went smoothly with the surgeon coming to see me and explaining what she had done. She had dressed the wound asked the nurses to give me extra dressings and some instiller gel for the wound. Taking me to the door on discharge handing me over to my hubby.
I could go on and moan about rest of care BUT no point I got to get on with this fight. But im going stand up for myself cos no-one else will !!
Waiting for APR surgery think after reading SarahH21 post I'd better mention I have no Gallbladder otherwise they be wondering why I got scar 12 inches diagonal across my tummy lol
My surgery on Monday is to have my gallbladder removed! They will see I have 2 stomas even if they don’t read my notes, and the scar that starts at my bellybutton since that’s where the camera will go in.