ELAPE and posterior vaginectomy

Hello SandieLL12e9b5 

I am sorry, you have really been through the mill and I am delighted to hear your good news which must be a huge relief after so many surgeries.  I don't have shared experience regarding your latest op, however, 25 days after a major op, I am in awe of how quickly you are up and about!  But my experience with any of the ops I have had is the scarring and area can remain numb for quite some time as nerves are damaged during surgery.  And scars can take a considerable time to flatten out and lose the sensitivity.  I don't know about the discharge were you given a hospital number to contact if you were worried about anything?  If so I would give them a ring to check.

There are a few forum members who have had an APR and I am hoping they will pick up on your post and advise better than me.

In the meantime - a gentle healing hug

Irene xx

Hi Irene, thank you so much for your comments and healing hug. x It's good to know the numbness is normal at this stage and will more than likely improve with time once the nerves start repairing. When the colorectal nurse rang to give me the good news that the op was successful, I did mention the discharge and she seemed to think it is normal at this stage. Maybe there's someone on the forum might be able to confirm? Hope you are doing well. Thanks again. Big hug. x

Hello SandieLL12e9b5

I don't have any personal experience of ELAP or APR, but I am following posts on the Macmillan colon rectal forum. I am sure a few members have gone through this surgery and have made detailed posts.

Fantastic news about the all clear and great to hear you are making such an amazing recovery. I am not medically trained, but from reading I think the numbness and tightness is normal and does get better with time.

I also have SCC in the anal canal and rectum and my treatment finished 1 month ago, I have my first scans on the 14th. My cancer diagnosis was locally widespread and my surgeon thinks surgery is likely, APR or ELAP. Would you be Ok if I asked a few more questions about your journey? Totally understand if this is not appropriate.

Wishing you the very best with your recovery.

Ally xx

Hi Ally

Sorry to hear you will possibly have to undergo surgery.  Please fire away with your questions, I am more than happy to answer and help if I can. . . . xx

Thank you so much.

I will gather my thoughts tomorrow and make it brief, as I am conscious you are right in the middle of recovery.

Have a good evening.

Ally

No problem at all Ally.

You too, have a good evening. x

Hi SandieLL12e9b5 ,

Firstly I’m so sorry to hear you’ve been through so much! On the flip side of that I think you’re doing flipping amazing for only being 25 days post op!! I’m sure as Irene has said there’ll be some nerve damage at your surgical site so hopefully most of that will resolve in time. It’s amazing news that the surgery has been a success also. 

Sending you a huge virtual hug & lots of healing vibes. 

Nicola 

Morning Nikki

Thank you for your kind words of support.

I've read your story and am so glad you are doing well and long may that last. x

Onwards and upwards with my recovery, every day, little improvements, slow and steady wins the race.

xx

Good Morning SandieLL12e9b5

Pre treatment the tumour had broken through the rectum propria and had spread deeply into the fatty tissue, reaching the connective tissue. It was also pressing my urethra causing a stricture. No mention of levator ani muscle. No invasion into the virgina.

It comes from my anus, so low down.

From reading, new ELAP surgery has a greater chance of clearing margins, but the surgery has more complications. My surgeon has touched on infections and long term bladder issues.

Any information would be welcomed.

Robotic, laparoscopy and open are all available, which did you have?

Did they use skin flaps to close?

Mop up chemo?

It's very kind of you to offer support, but if I am asking too much please ignore the question. Information and planning is my way of getting control, but it's a pain for people and can sometimes feel more like interrogation.

I think your recovery is amazing so far and I am hoping the problems resolve with a little time.

If you feel able please keep posting.

Ally xx

Morning Ally

My tumour was low down, 5 cm but shrunk to 1 cm after my 28 chemoradiotherapys. I was lucky; it hadn't spread to my lymph nodes or elsewhere.

Everyone's different of course but i can't sugar-coat it, it's a big op. Nine and half hours, I had keyhole, they repaired a hernia and refashioned my stoma, anus, rectum, part of bowel, coccyx and posterior vagina removed. I was then flipped over and plastic surgeons repaired the defect with tissues from my left buttock.

I went to Critical Care for 4 nights before going on a ward for further 10. Had lots of drips, drains, dressings and catheter plus lots of pain relief. Had to side lie, turning every 2 hours, not allowed to sit for 3 weeks. First time I stood up, 6 days post-op, felt dizzy, retched and had to lie down again! However, next day I was walking along the corridor and it just improved from there, walking a little further each day.

I've had my limit of radiotherapy and not having mop-up chemo.

Histology has confirmed no spread, they took a good margin round my 1 cm tumour! 

I hope this helps and I haven't given too much info or made you more worried. Like I said, everyone's experiences/recovery.will differ.

I can't fault my surgical team or treatment on the ward (Royal Preston) and I'm sure your team will be great too. My sugeon told me its a very common procedure!

Hope this helps but please ask if you have further questions.

All the very best.

Sandie x