Hemipelvectomy information

steved

Have used this board intermittently over last 8 years of battling with cancer. Am 39 now with a pelvic recurrence of rectal cancer I had removed at age 31. HAve had various chemos and re-irradiation since the recurrence and was hoping to get to the point of having surgery again but they have said due to the tumours position (lateral wall and on sciatic nerve)the only option is hemipelvectomy with amputation and probably colostomy/ urostomy.

Can face the bags as had colostomy for a year last time but feel very daunted and scared of the prospect of losing the leg. Are there people who can share their experience of this operation and their life since. I have two kids (4 and 7) and work full time as a doctor in the UK. The surgeons struggle to give me any real data on the likelihood that such surgery would be succesful in clearing the tumour so am struggling to weigh up the pros and cons of going for it. The other options are palliative and though they could keep me going for years ultimately mean I will lose this battle in the not too distant future.

All info welcome (and hi to those long term users of this site that I recognise as still going strong on here since I was last in touch!)

Steve

taraHK

Welcome back!
Hi Steve -- Welcome back. I remember you warmly.

I am so sorry to hear about the pelvic recurrence and the prospect of a hemipelvectomy. Is there any chance that could be limb-sparing?

I have no experience with this operation. I would be daunted, too. Loss of a leg would be a huge adjustment.

The decision is entirely yours, of course, and I'm sure the lack of a guarantee that the surgery will clear the tumour makes it even tougher. I will just say those darling kids of yours will never care how many legs you have!

Thinking of you and please keep us posted.

Tara

steved

taraHK said:

Welcome back!
Hi Steve -- Welcome back. I remember you warmly.

I am so sorry to hear about the pelvic recurrence and the prospect of a hemipelvectomy. Is there any chance that could be limb-sparing?

I have no experience with this operation. I would be daunted, too. Loss of a leg would be a huge adjustment.

The decision is entirely yours, of course, and I'm sure the lack of a guarantee that the surgery will clear the tumour makes it even tougher. I will just say those darling kids of yours will never care how many legs you have!

Thinking of you and please keep us posted.

Tara

Thanks for the message- have
Thanks for the message- have lived for a number of months with the message of there being 'no surgical option' and getting my gead around living with a terminal cancer with a prognosis of a year or two (which I appreciate is no more than guess work). Therefore when they raised the option of radical surgery which won't be limb saving it actually seems like a vaible option when compared to the only other one.

I too remember your story well and am pleased to see you are still here on the site.

I guess the lack of replies to this query reflects how uncommon this operation is for this cancer.

steve

Patteee

steved said:

Thanks for the message- have
Thanks for the message- have lived for a number of months with the message of there being 'no surgical option' and getting my gead around living with a terminal cancer with a prognosis of a year or two (which I appreciate is no more than guess work). Therefore when they raised the option of radical surgery which won't be limb saving it actually seems like a vaible option when compared to the only other one.

I too remember your story well and am pleased to see you are still here on the site.

I guess the lack of replies to this query reflects how uncommon this operation is for this cancer.

steve

Hi Steve,
The only 2 people
Hi Steve,

The only 2 people I have known with sacrum (sacral?) mets were John in SanFran and Rob in Vancouver. Rob is still going a year after sacral resection, although he recently found a re occurance. Yes, I think what you are facing is rare- and I suspect you have researched other options? Doesn't sound like there are any other avenues to take. *sigh*
I would guess a lot of your recovery and wrapping your head around these changes is how much of sacrum will they have to take? Will they be able to leave enough enough for a prosthetic limb? Will the surgery actually cure the cancer? You are so correct that it IS a viable option when comparing to the only other one. I know people who love you would agree.

Lovekitties

Patteee said:

Hi Steve,
The only 2 people
Hi Steve,

The only 2 people I have known with sacrum (sacral?) mets were John in SanFran and Rob in Vancouver. Rob is still going a year after sacral resection, although he recently found a re occurance. Yes, I think what you are facing is rare- and I suspect you have researched other options? Doesn't sound like there are any other avenues to take. *sigh*
I would guess a lot of your recovery and wrapping your head around these changes is how much of sacrum will they have to take? Will they be able to leave enough enough for a prosthetic limb? Will the surgery actually cure the cancer? You are so correct that it IS a viable option when comparing to the only other one. I know people who love you would agree.

Hi Steve
Here is the blog for the Rob in Vancouver that Patteee mentioned.

You may find some helpful words there.

http://www.rob-pollock.blogspot.com/

robinvan

Sacral Recurrence
Hi Steve,

I'm an 8 year survivor currently living with a recurrence in my sacrum. I had an "en bloc resection" of my sacrum in February 2011. The outcome included a colostomy and catheter. Surgeons involved included general, neurological, and plastic.

The procedure took 2 days with the anterior incision and work done on Day 1 and the posterior incision and work on day 2. My recovery included 4 weeks in acute care and 6 weeks in rehab, after which I was able to walk well with one cane.

It was a large tumour and the sacral margins, although clear, were too close for comfort. Post surgical radiation was applied as insurance against a recurrence.

Unfortunately for me the cancer has recurred in the vicinity of the left sacroiliac joint. Not much they can do now, short of keeping me comfortable.

My situation is quite a bit different from yours. In my case the integrity of the pelvic girdle was maintained, at least initially. Recently, cancer related fractures in my sacrum have destabilized it, causing great pain and resulting in a sacral cementoplasty procedure several weeks ago. While I still have both legs, I cannot weight bear, other than to transfer to my wheelchair.

That's it in a nutshell for now. Let me know if I can be of any more help.

Rob; in Vancouver

Moesimo

I remember you!
I remember you. I dont have any advice for you. But am sending hugs and positive vibes. You have some tough decisions to make. Best of luck with your choices. I really hate cancer.

Maureen