I don’t have the heavy feeling that you talk of, however I have on odd occasions now you’ve mentioned it if I’ve been standing around for a while. When I sit down I feel like I’m sat on two hard bits of wood where my bottom cheeks are. I still sit on an air cushion a lot of the time. What stage were you? I was stage 3 with 3 lymph nodes involved. After the chemo/radio I was told I had a full clinical result. It was just scar tissue left. After surgery, I was told they got the margins and all lymph nodes were clear. The last 4 rounds of chemo are to make sure everything has been got.
Hi. I had stage 1 cancer so maybe that's why I didn't need chemo. I had an op in March but it was back in June so they all decided only thing was to take everything away, I had lymphovascular invasion. After main op which was 8 hours in surgery they sent some off to histology and they said they had got it all so no need for further treatment. I notice you said you were walking around after day 3, I was still in hdu till day 5 when they put me on a ward, even then I couldn't get out of bed or even sit on a chair, I did have a special cushion to sit on and they also gave me one to bring home.. when I did leave hospital I went home on a trolley by ambulance as I couldn't sit on my bottom for more than 10mins at a time. What hospital did you have your op at, mine was UCH lond.x
Dont know if this helps but I was told that it can take a long time for the nerves to grow and join over the "barbie butt"hence the numbness.
I had the larger op ,a panproctocolectomy with a barbie butt and initially felt as though I had a permanent "wedgie".3 yrs on its much better but still looks odd and is not completely"normal"re feelings.
But it was all worth it to get rid of the cancer and have a life.
Hi, I had my operation at the Royal Derby in Derby. Can I ask how old you were at the time? I find it so strange how the treatments are so different. My surgeon told me that I was having the ELAPE surgery which is a APR. I’m no medical person but if you lymphovascular invasion why did they not give you the post surgery chemo to kill any stray cancer cells floating around? How long were you in hospital for? Xx
Hi Katz51, that's exactly how I feel,like I have a wedgey all the time. It's a horrible sensation. So even after 3 years you still have it,wow. I was hoping it would go eventually, my surgeon did say I might not ever get the feeling back and that it could always be numb. Did you/do you find it uncomfortable to wear clothes with the seams over the bum area,I do but I thim I'm getting a bit used to it now. What about doing other things like bending over, painting your toenails, I can't do that yet lol x
Hi, I just turned 58 when I had my first op. I also found it strange that I didn't have any treatment after, on all my letters from hospital it said lymphovascular invasion, something to do with nodes and I was high risk cancer surveillance maybe if I did have treatment after I wouldn't of had to have the 2nd big op, but I'll never no. I was in hospital for a total of 13 days.
Yes, it does seem strange. I guess there’s a reason? You only had the operation in November is that correct? I too get the wedgie sensation. I’m due to start the Capox chemo tomorrow as long as they are happy with the wound not healing as it keeps being delayed. I’m dreading it. Thank you so much for your replies, you’ve really helped me .
Hi all it sounds as if you have all been through it. My husband got a letter from the Consultant to say he needs to have ELAPE surgery in April and is being referred to a plastic surgeon too. I don’t know why but this for me was the last straw and i have spent most of this weekend crying with sadness, fear and grief for a very changed future. My biggest fear is understanding how much pain he will be in and for how long? I’m hoping someone can give me a little bit of hope that we can led a normal life again afterwards Xx
Hi LB54, I’m sorry that your husband is having to go through this. I thankfully didn’t look into what the surgery involved before having it. I know it’s major surgery but my surgeon told me it was just routine to them. I can say that I wasn’t in a lot of pain, I just felt uncomfortable. Can I ask how old your husband is and what is his stage? I was in hospital with a 78 year old lady who was walking around the very next day after the same operation. Her bottom has healed well and coping well with her stoma. Everyone is different. The thought of the surgery I found to be the scariest but in actual fact it was fine. Big hugs xx
