Total Pelvic Exenteration

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shaina
Posts: 3
Joined: Mon Oct 12, 2020 11:11 am
Facebook Username: shaina.leskin

Total Pelvic Exenteration

Postby shaina » Mon Oct 12, 2020 11:26 am

Hi, I'm new to the website. In honor of my diagnosis exactly two years to the day, I have joined the group! I would like to give a heads up for total pelvic exenteration, despite the severity of this operation.

I am a mother of six, aged 56 years on diagnosis. I was diagnosed after colonscopy two years ago, and given the prognosis that I would not live more than a couple of years, maximum. It was a stage IVb adenocarcinoma tumor of around 7 cm which had spread to local pelvic organs but not outside, and was "well defined."

After having one round of chemo to shrink the tumor enough to do surgery I then had to have an emergency diverting sigmoid colostomy put in because of fistulas (fissures) opening between the urinary tract and colon. There was no certainty this could be reversed. After a short recovery, I then had 4 more chemo treatments followed by a total pelvic exenteration (only part of the bladder was left). Thank God, the colonoscopy was also reversed. To summarize, it was extremely major surgery, five ops. in one - tumor removal, lymph node removal, removal of ovaries, uterus, reversal of colostomy. I live in Israel, and the major hospital where I had it done said they only do two or three of this type of surgery every year!

The pain was indescribable afterwards, even with epidural, and huge amounts of painkillers (and I have a very high pain tolerance normally). They get you standing almost immediately, and two and a half weeks later I was discharged home, in a wheelchair and very weak, and still on huge doses of opioids. It probably took another three months before I could walk short distances, and at least six months before I could attempt anything more than that.

However, a year and a half later, I am doing regular exercise (just started a gentle aerobics program for over 50s,) I walk, use an exercise bike, go up and down stairs, cook, and do all the domestic things I used to do. My oncologist is pleased so far... scans are clear.

If anyone is contemplating this operation, please reach out to me for specific details and I am happy to offer any help I can with the recovery process, support, or advice. As I say, the pain is unimaginable but for me, there was no alternative. It's not a walk in the park, by any means, but it may give you your life!

Be well, everyone. Look after yourselves - Shaina

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: Total Pelvic Exenteration

Postby Lee » Mon Oct 12, 2020 6:26 pm

Thank you for sharing your experience. There is probably at least one lurker out there, scared for decisions s/he has to make. You probably just gave them the confidence to make the right decision.

Thank you again,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Total Pelvic Exenteration

Postby Jack&KatiesMommy » Mon Oct 12, 2020 7:38 pm

Shaina
You are an amazing person to go through this (as a Mom, I know how your children give you the strength to fight and live beyond what can be imagined.). Thank you for coming here to share your story...honestly. I was told when I was 46 years old with an 8 year old and a 4 year old that I had 12-22 months to live with the most aggressive treatment. I saw other doctors at different hospitals and went through many surgeries, many ablation procedures, and years of various chemotherapies. It was VERY hard. But I am here 9 years later. My children are 17 and 13 now....and I am so thankful to have made it through the times when it seemed unbearable.

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Total Pelvic Exenteration

Postby rachelfromnyc » Tue Oct 13, 2020 12:09 am

I have read about this procedure and it is extremely difficult. So thank you for sharing. I’m 1.5 years into a stage 4 diagnosis and it’s really testing my limits. Reading your experience along with Lee’s and Cynthia’s and others here... it’s really incredible. Kudos to you for starting an exercise program and living your best life. Thanks again.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: Total Pelvic Exenteration

Postby Lee » Tue Oct 13, 2020 12:19 am

Jack&KatiesMommy wrote:Shaina
. My children are 17 and 13 now....and I am so thankful to have made it through the times when it seemed unbearable.

Cynthia


That is so TOTALLY AWESOME. The last time I saw my dad I was 12 yrs old (Vietnam War) , my brother became the head of household when he was 9 yrs old (1969), a different time, a different era. I believe it is am amazing the strength we mom's find when dealing with a cancer diagnoses. My kids were 9 &11 at my diagnoses. They are 28 & 26 today.

Awesome job,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

boxhill
Posts: 609
Joined: Fri Apr 06, 2018 11:40 am

Re: Total Pelvic Exenteration

Postby boxhill » Tue Oct 13, 2020 10:14 am

Shaina, I'm in awe. And so happy that you have won through to a good life.

The same is true for you, Lee and Cynthia.

I have had so much easier a time than so many, thanks to many pieces of luck, but foremost that of being MSI and responsive to Keytruda, my miracle drug. I feel guilty at times.

Best to all.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Twindaze
Posts: 3
Joined: Tue Oct 13, 2020 11:25 am
Facebook Username: Jenny Ge

Re: Total Pelvic Exenteration

Postby Twindaze » Tue Oct 13, 2020 11:34 am

I'm new here. Just had a recurrence mostly in the pelvis (possibly 3 mets in the liver.) I was given 2-3 years. We went to the James at Ohio State for a second opinion and met with the surgeon. I believe that this must be the "big" surgery he's saying that I might be able to have and possibly have a cure. He said months of recovery, but wow, 6 months. My brother is an MD and seems skeptical that the impact of quality of life would be worth it. I just want a chance to live, to see old age. I'm 55 and still have a 16 year old here at home that I need to finish raising.

I'm going to PM you if you don't mind.

Jenny
5/27/19 Colectomy - stage 3c
6/24/19 - folfox, 8 rounds
sept 19 - chemoradiation - 28 days
jan 20 - NED
9/20 - recurrrence
10/20 - started folfiri - possible upcoming surgery to remove "everything"

Twindaze
Posts: 3
Joined: Tue Oct 13, 2020 11:25 am
Facebook Username: Jenny Ge

Re: Total Pelvic Exenteration

Postby Twindaze » Tue Oct 13, 2020 2:45 pm

Shaina - will you pm me? I'm new and this site won't let me PM right away (which, admins, is very frustrating.)

Jenny

ccmc
Posts: 36
Joined: Mon Jan 21, 2013 9:13 pm

Re: Total Pelvic Exenteration

Postby ccmc » Thu Oct 15, 2020 10:30 pm

Twindaze wrote: I'm new and this site won't let me PM right away (which, admins, is very frustrating.)
Jenny


New members need a minimum number of Moderator approved posts
before sending or receiving PMs with other members.

Continue to be a member in good standing and post a few more times.
Colon Club Moderators Committee

shaina
Posts: 3
Joined: Mon Oct 12, 2020 11:11 am
Facebook Username: shaina.leskin

Total Pelvic Exenteration

Postby shaina » Sat Oct 17, 2020 11:03 pm

Bs'd

Hi, I am new to the forum and my posts got inadvertently deleted, my mistake! Oops! I just wanted to say that I was diagnosed as a stage IVb adenocarcinoma signmoid colon with local spread to pelvic organs and I had the "big" op. done around a year and a half ago. Don't be daunted, it is doable and can potentially be a lifesaver. Thank G-d, my surgeons were able to remove the tumor and local spread, and lymph nodes and margins were all negative. I don't want to minimize this surgery, it is extensive, but it could be worth the whole procedure if it gives you time.

If anyone wants or needs info. on this operation, please do reach out to me. Not that I'm a medical expert, but I can perhaps give some advice on pre-post op. preparation and recovery etc, although of course, every person is different.

I was not expected to still be here but I am (to the best of my existential knowledge) still here, and going strong (not perfect by any means, physically, but that's another story).

Wishing everyone all the best with whatever they decide.
From Shaina, a "previvor."

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

Re: Total Pelvic Exenteration

Postby Jolene » Fri Oct 23, 2020 10:05 am

Hi Shania - Thank you for sharing your story. It's such an awe-inspiring one and I'm speechless after reading. You sound like one amazing strong woman. I honesty don't know if I could muster the same courage as you did if it happened to me.

It's amazing that you never gave up and took the initiaitve to work out an exercise programme and living life to the fullest. I will keep this thread in my mind.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: Total Pelvic Exenteration

Postby Lee » Fri Oct 23, 2020 4:36 pm

boxhill wrote:Shaina, I'm in awe. And so happy that you have won through to a good life.

The same is true for you, Lee and Cynthia.

I have had so much easier a time than so many, thanks to many pieces of luck, but foremost that of being MSI and responsive to Keytruda, my miracle drug. I feel guilty at times.

Best to all.


Thank you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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