Pelvic Exenteration & Stomas

Hello,

I'm new to the board and have been reading many posts. I appreciate so many sharing their stories. I'm 40 years old and recently completed Chemo (Cisplatin and Terapazimine), Radiation, and internal radiation. My 3 month follow up revealed the cancer had returned and have since been prescribed a Pelvic Exenteration. We just returned from Texas where we obtained our "second opinion" on the procedure and they confirmed what we were told here in Iowa.

Can anyone share their post surgery stories? It's my understanding that to live, this is the only option and the thought of not being in pain 24/7 is a welcomed idea.

I know I will have a colostomy and urostomy.  The question is do I get the external urostomy or the "miami" pouch, an internal outlet behind my navel?

Can anyone speak to either of these?

Thanks,

Karleene

I was diagnosed with stage 3a cervical cancer in Mar. 2008. At that time I underwent 8 wks of radiation and chemotherepy.  Doctors felt that there was still some residual cancer left and suggested a pelvic exenteration.  In Nov. 2008 I had an anterior pelvic exenteration. I do have the miami pouch and I catherize through an opening in my navel.  I do not find it difficult, however, ocassionally it feels a bit tight going through the stoma to the pouch. I was told by my urologists there is the same percentage of complications with this as with an outside bag, so this was my choice. I was very fortunate that I did not have any complications from this surgery, even though 90% of patients have some complication.  It is a very long recovery period, several weeks in the hospital and months at home.  I did not feel up to doing anything for 4 months, and know that I am still recuperating. My strength comes back each day. It is a very invasive operation, not many people seem to go through, but you will be able to get through it.  There is a light at the end.  I would be more than willing to share my experiences with you since they are still so fresh in my mind.  I wish I had found these boards last year or had some one to reassure me before I had my surgery.  I believe that through prayer God is always there. My thought and prayers are with you.

fran

On 8/7/2009 Karleene wrote:

Hello,

I'm new to the board and have been reading many posts. I appreciate so many sharing their stories. I'm 40 years old and recently completed Chemo (Cisplatin and Terapazimine), Radiation, and internal radiation. My 3 month follow up revealed the cancer had returned and have since been prescribed a Pelvic Exenteration. We just returned from Texas where we obtained our "second opinion" on the procedure and they confirmed what we were told here in Iowa.

Can anyone share their post surgery stories? It's my understanding that to live, this is the only option and the thought of not being in pain 24/7 is a welcomed idea.

I know I will have a colostomy and urostomy.  The question is do I get the external urostomy or the "miami" pouch, an internal outlet behind my navel?

Can anyone speak to either of these?

Thanks,

Karleene

Hello,

Thanks for your response. My cancer returned to the same place as before. Still within the cervix pushing against the left side. Our second confirmed placement and procedure. UGH.

Guess I'll just have to break out the paint pens to bling out the ostomy bags. :o)

Karleene 

On 8/13/2009 Karleene wrote:

Hello,

Thanks for your response. My cancer returned to the same place as before. Still within the cervix pushing against the left side. Our second confirmed placement and procedure. UGH.

Guess I'll just have to break out the paint pens to bling out the ostomy bags. :o)

Karleene 

 

Mine returned two years later but near my rectum and then another tumor in my neck and pelvic area.  I had two drs tell me pelvic exenteration was not the way to go.  I wish you the best.  I'm sorry you are going through this, but we will get through it.

Hi Karleene,

I had a pelvic exenteration in Sept'08. To be honest with you,I didn't really start to feel human again until around Easter although I did go back to work full time in the first of January.  I am experiencing complications with blocked ureters due to scar tissue forming, mostly from the radiation since I had radiation treatments both times.  I have stints going through each of my kidneys. I can't have another surgery to try and correct the problem until I have been cancer free for at least 2 years.  I get UTI's all of the time.  I have an "Indianna Pouch" which sounds like it is about the same thing as the "Miami Pouch" except my stoma is off to the right a couple inches and below my belly button. My stoma shrank some, and sometimes I have a hard time getting the cathedar in.  I did not have to have a colostomy, at first they said I would but later they said I could get by without having that part done.  Before I had my surgery, I searched and searched for someone to talk to that had had it done but couldn't find anyone so please..if you have any questions, don't hesitate to ask!

On 8/13/2009 newyork wrote:

 

On 8/13/2009 Karleene wrote:

Hello,

Thanks for your response. My cancer returned to the same place as before. Still within the cervix pushing against the left side. Our second confirmed placement and procedure. UGH.

Guess I'll just have to break out the paint pens to bling out the ostomy bags. :o)

Karleene 

 

Mine returned two years later but near my rectum and then another tumor in my neck and pelvic area.  I had two drs tell me pelvic exenteration was not the way to go.  I wish you the best.  I'm sorry you are going through this, but we will get through it.

On 8/14/2009 metoo3 wrote:

Hi Karleene,

I had a pelvic exenteration in Sept'08. To be honest with you,I didn't really start to feel human again until around Easter although I did go back to work full time in the first of January.  I am experiencing complications with blocked ureters due to scar tissue forming, mostly from the radiation since I had radiation treatments both times.  I have stints going through each of my kidneys. I can't have another surgery to try and correct the problem until I have been cancer free for at least 2 years.  I get UTI's all of the time.  I have an "Indianna Pouch" which sounds like it is about the same thing as the "Miami Pouch" except my stoma is off to the right a couple inches and below my belly button. My stoma shrank some, and sometimes I have a hard time getting the cathedar in.  I did not have to have a colostomy, at first they said I would but later they said I could get by without having that part done.  Before I had my surgery, I searched and searched for someone to talk to that had had it done but couldn't find anyone so please..if you have any questions, don't hesitate to ask!

Hi Metoo3,

Thanks for sharing your story.  I have my Pre-Op this Monday and hopfully will get some additional questions answered. The pain in my abdomen and back seem to get stronger the closer to surgery I get, so, I'm looking forward to not being in  pain. Thank you for your offer. I appreciate having someone to speak with. Blessings, Karleene.