Hi there
My husband has a low rectal tumour diagnosed Nov 23. He had week intense radiation plus 3month chemo. Near total response and my husband did not want surgery so watch and wait was observed. Jan 25 had internal scan as started to look like growing agreed to move to operation of removal rectum/anus and stoma. However, got called to St Marks last week and told now TPE as it’s complex and it’s less than 1mm from prostate and involves CRM. My husband is devastated he’s 51. It was a huge shock.
Please can someone tell us what to expect as we didn’t hang around as my husband become overwhelmed and had to leave. I know it’s major operation with many obstacles. He works as a facilities manager and is worried about his job too. This flap they need to make. Can anyone tell me about this and where from.
All we got told is will need to take rectum anus prostate and bladder as they can’t save it because his prostate is a normal size and slicing a piece of this will almost definitely ruin the urethra and cause major problems with his water works even though the cancer is not in the prostate or bladder. Thanking anyone who can walk me through the operation side and side effects recovery etc
Hi Cookieshell and a warm welcome to the Macmillan Community but so sorry to hear about your husband’s diagnosis and the journey you are all on.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer or cancer support challenges can help a lot.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms)…… if you care to have a look through this link Cancer Specific Groups you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same journey.
Have a look through the LIST above and once you find the support group for your husband’s cancer type(s)....... click on the link and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As for the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our……..
……support group where you will connect with others navigating the same support challenges.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community ((hugs))
Hi Cookieshell and welcome from me too.
I can understand it will have been a huge shock to be faced with the possibility of a TPE-I know exactly how it feels as I went through this operation myself, though for a different cancer.
There will be differences in surgery, since I am female, but I’d suggest joining the following groups to ask questions and find out more information from those of us who have been through it- I’m assuming your husband has rectal rather than anal cancer.
Bowel (colon and rectal cancer ) forum
It is a huge surgery, there’s no doubt about that and a long recovery, but on Monday it will be the 5th anniversary of my TPE, so there can be positive outcomes! I didn’t have cancer in my bladder or my rectum, but still lost both.
Sarah xx
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