More biopsies.

Hi Sarah (Twigley),

Firstly I’m sorry you’re facing this at the moment. Although it’s unfortunate that you’ve been advised to have this procedure it’s not uncommon for ‘scar tissue’ to be biopsied under anaesthetic following this treatment, I also understand we’re all different & this is a very personal decision but for me it would be a no brainer, the ‘what ifs’ would be too difficult for me to live with.  

Like you the treatment has left me with anal stenosis & things are pretty tight back there! This has been mentioned a couple of times at my check-ups with my oncologist! If it’s any comfort I’m sometimes sore & often bleed a little following a DRE but this usually resolves itself after a day or so. 

I hope someone that’s been through this procedure will come along & put your mind at rest soon. 

Nicola 

Hi Twigley (Sarah), I’ve had this too. My first set of scan results were clear but they could feel a lump inside where the tumour was that they thought was scar tissue but weren’t 100% sure.  I had an examination under anaesthetic (EUA), during the lockdown, I was in and out of hospital in about 5 hours, most of that was waiting time, the procedure itself was very short. They took the biopsy by way of a needle, whereby they draw cells ifrom and underneath the lump , there was no cutting involved in my procedure. I would check if yours will be the same as I had no pain after the procedure at all, unlike the pain I had from the original biopsy of the tumour before treatment where they cut into the tumour. Please just check this with the doctor.  Bev x

Dear N and B,

Thank you so much for your support. I will get it sorted and on the list today, I will try and get through to someone and ask if its by needle.  I'm so glad you are here. The best.

Sarah.

Hi thanks for your replies. I emailed and left whoever I could get thro to a message about having needle biopsies ( half the numbers do not exist when you call, the others you leave a message and they get back to you when you are up a ladder in a tree ) but nobody would say yes we will do needles, and the surgeon cut bits out of me and it has been very sore, now smelly discharge 4 days later and actually pooed my pants walking back from the garage yesterday, I haven't actually done that before in the whole history of this illness, so was a bit dismayed. To be honest I feel like an item in a factory, being formed, cooked, sliced, bagged, packed, ordered and put on a shelf. Not really like a human being.  It is difficult to speak to anyone and if they do not give you the worst case scenario, like "oh it is cancer we will have to cut your bowels out" as they did say to me at first, to not telling you anything and basically humouring you, or saying you should be glad to be alive. I think in London at the big hospital I'm at, you go thro the mill. In a smaller hospital you will get more personal treatment, with more time spent. I feel like I've been on a flippin' helter skelter and spat out at the bottom, I'm with Toni, stay aware .... Yes thanks I am glad to be alive but  hmmm

I just recieved this message today 3rd August. Must have been a glitch.

Hi Twigley

I am so sorry to hear this. It sounds as if they really are not giving you the personal attention you deserve. You have already been through enough with your treatment and they should know this and be more understanding. I think i would have been so scared and well done, you, for going through this. If it's any help, I did have one EUA with biopsies after another within four weeks and during the first two weeks after I really had trouble controlling my bowels. This was the first time I had experienced this and I was devastated. It did get better very quickly afterwards though, and my treatment has not affected my bowels quite as badly. So, please hold on, as this may hopefully improve soon. Your poor body has gone through so much, but you have got through your treatment and I am sure you will get through this.

I have been at Guy's cancer centre and I do sympathise with you as they are so busy with so many patients. You do feel as if you are just a number at times. Wishing you all the best in your recovery.

Serena x

I really feel for you Sarah.  Please have a look at the other post I just wrote about community palliative care teams  xx  toni

Hi Twigley I'm sorry to hear you've had such a bad experience. It was such a simple question you wanted answering. Can I suggest that in future, if you are struggling to get a straight answer, involve the PALS (Patient and Liaison Service) at you local hospital. They act as an intermediary between patient and doctor. My local PALS are extremely good. I hope you start feeling better soon. Bev x

Hi Twigley, I am so sorry you are going through this. It can kind of knock you back down again and you feel back to square one. I so wish they had effective pain relief for bowel movements. I am sure this is cause for 80% of the problems with pain. Sending you wishes Julie x