Bowel cancer spread to vagina

Hi CT3 and welcome to the group.

I’m sorry to read that your cancer has come back and it’s spread-I was in the same boat when my cervical cancer came back after 9 months and thought exactly the same..was it really gone, even though I had a NED result from my scan. 

My surgeon tried a radical hysterectomy for me but when I was opened up on the operating table the damage from radiation had been too extensive to allow my organs to be safely separated, so I got stapled up and sent home. 9 weeks later I had a total pelvic exenteration and 2 stomas. 

So, not quite the same as your situation but I can definitely understand what this kind of news is like to receive, and it’s still major surgery. Are you scheduled to have a colostomy still as part of it? 

This is not a very busy group, but I tend to keep an eye on the posts here as obviously with the full TPE I’ve lost my vagina too. I had my surgery more than 5 years ago, and am now considered  “cured” as regards my cancer, but of course there are never any guarantees.

I’m happy to help with anything you need to know about the surgery from my own experience, as I can at least identify with some of what you’ll be going through. 

Sarah xx

Hi Sarah. I was diagnosed with rectal cancer back in May 24. Had 5 sessions of radio then 4 rounds of chemo. In Jan 25 I had surgery to remove my tumour and a temp ileostomy. At this time my margins were clear no signs of cancer in nodes etc. In my head the cancer was gone! My stoma was reversed in May this year and in June I started having rectal bleeds. All the scans again which revealed my cancer was back and in just six months had spread into my vagina.  Initial surgeon had said I would need permanent stoma and hysterectomy. Two massive surgeries but I had told myself I could cope with that if it meant being cancer free.

Skip forward to meeting with new consultant and I have been totally blindsided.by the extent of the surgery. Still waiting on an exam under anaesthetic and PET scan but so far he has said removal of pelvic floor, half my vagina which will be rebuilt by a plastic surgeon and removal of cervix and potentially uterus along with a permanent  ostomy and all that goes with that! 

I have so many concerns mainly  how do you recover from this size of surgery?! How long does it take?  How will my bladder even operate without a pelvic floor, I have spent so long battling with my bowel I cannot then have bladder incontinence!! How do I even make such a huge decision if they ask me about my bladder?  How do both stoma bags even fit on your stomach

My surgery is scheduled for Sept - I really have no idea how I am going to pass the time.  

I realise this is very rare and I’m just hoping that someone has some words of wisdom. I was on the back foot so have a lot of questions for the consultant when I see him next. 

cx

Hi CT3 

You have really been through a huge amount since diagnosis, and with what is to come it must seem overwhelming for you. I do remember when I first heard of my surgery it was hard to comprehend how to get through it. 

I’ll go through a few of the questions and points you’ve made and see if I can be any help. I needed multiple scans, including a petscan and a biopsy under anaesthetic to plan my surgery. I didn’t have vaginal reconstruction, which for me would have involved taking a large chunk from my thigh, because it would have increased my time under anaesthetic and involved another surgeon-I already had 3 doing my surgery. I thought that was enough! 

I had to have my bladder removed as my cancer had spread over it along with my womb, which also had to go. I was advised my bowel could be saved, as the cancer hadn’t reached there, though it had been badly damaged by radiation. I asked for it to be removed, which may seem crazy to some, but my focus was removing everything possible in that area to reduce the chance of recurrence. Also, should my cancer recur, further surgery would potentially be very difficult due to scarring and adhesions.

I felt that as I would certainly be having a urostomy, I would cope with a permanent colostomy in addition to this in the hope of getting clear margins in the surgery and getting rid of the cancer completely. My surgery did not remove my pelvic floor but went extensively into the pelvic sidewall to get everything. So, I don’t know how it would feel to have a functioning bladder but no pelvic floor and how that would affect continence. That’s a question for your surgeon. 

For my surgery, I was advised by other ladies I met in person who had gone through it to expect recovery to take a year. I started to improve in terms of my appetite returning and not being sick from around 2 months after surgery. I walked with a zimmer frame initially, and did short walks in my garden and up and down the road outside my house and at 3 months I made my longest walk, with breaks to sit down, around a local nature reserve. Sometimes I felt I was taking a step back in my recovery-it doesn’t always feel linear, but it does get better. It’s about not expecting too much too soon because that can frustrate you. You will be very tired after surgery and there’s a lot of healing to go on, inside and out. Time and sleep are great healers at the start! 

You asked about bags fitting on your stomach. My stomas are on either side of my belly button, mine are flat to my skin and do not protrude at all from my body. Most stomas do protrude and have a “spout”. The stoma bags are cut with a hole to fit round each stoma and stick to my skin. My colostomy bag is very small and neat, the urostomy bag is bigger and takes up more space as I use additional products round it in the form of extra seals to give me more confidence about it not leaking. The bags don’t overlap at all-there is still some distance between them and I wear the same underwear and clothes I always did. 

Everything about this type of surgery is very personal and does allow some choices, and how you’ll proceed may depend on what you want within the parameters of what’s best and what you want, My priority was getting the cancer out and gone, regardless of what had to be removed, regardless of losing my vagina and not having sex again, regardless of losing a bowel which had no cancer present.

I'd recommend giving this a lot of thought in terms of preparing questions for your surgeon. What are your chances of success and what are the chances of recurrence depending on what’s removed? Is any option better than another option? It’s a life changing surgery so lost of factors need to be considered.

I’ve certainly never regretted it, though there’s no denying it was very hard to go through. I’m happy to answer any questions if I can based on my experience.

Sarah xx

Thank you for your kind and quick reply. I have so much to consider and it is so overwhelming. I honestly thought I was done and on the otherside of this. You will know how it feels to be told it’s back! I don’t think there is a word to describe the devastation. 

I will wait for the outcomes of my PET scan / examination and see what options are available at that stage as by then it may be out of my hands.i know I simply cannot live with incontinence. Cx

I don’t think anyone can understand the feeling and emotions when you are told your cancer is back unless you’ve experienced it.

For me it was worse than my original diagnosis and the fear was overwhelming until I got my head round it. I knew I didn’t want to give up, and I knew this surgery was my only chance to survive as my chances without it were low for my cancer. 

I can understand the fear of incontinence-I could not have handled that myself. We can chat again if you’d like some extra support from someone who’s been through something similar and come through to the other side-I know your head will be full of so many thoughts and questions as surgery like this is so big. 

Sarah xx