I am sitting in the train headed back from appointments in NY at Sloan Ketteing and in Baltimore at Johns Hopkins. I am dealing with my 3rd local reoccurance. This time in my vagina. At Sloan I met with two surgeons, one a gyno and a colorectal, they recommend a partial to full pelvic exoneration with a potential to take out my bladder if need be. The would rebuild my vagina via a plastic surgeon. The hospital stay would be 14 days and recovery a few months. Survival rate 5 years 30-50%
At Johns Hopkins I saw a colorectal surgeon who also recommended the same surgery but also radiation beforehand, during surgery and chemo afterwards. survivor rate 50 or more percent. I see an radiation oncologist there on Monday to determine if and how much radiation I can get.
Also at Sloane they are reviewing my case with the tumor board on Monday and I will have a final recommendation....
First of all I am feeling complet overwhelmed and scared. I have a 12 year old daughter and I want to see her grow up! I feel like the Johns Hopkins plan is more aggressive, the guy at Sloan was basically saying chemo and radiation wouldn't add anything it is all about the margins. I feel like I want to attack it with all possible treatments to kill it once and for all.
How do you decide which way to go? Anyone have this procedure or same issue of a 3rd local reoccurance....no spread and caught early.....didn't wven show up on CT scan,.
Anyone have experience with either Memorial Sloan Kettering or Johns Hopkins? If so, what was your experience?
Any help or support is much appreciated!
All my best...jen
3rd Local reoccurance
3rd Local reoccurance
1/14 Dx Stage 28 Radiation and 3 wks 5FU + Clinical Study 2x Zaltrap
J-Pouch and tumor removal
Stage 3b2n0m on 5/14/14
Reversal on 6/25/14 tiny bit of cancer left......
3 brachytherapy 7/28/14
Completed 8x Folfox 11/19/14
CT Scan on 12/15/14 NED!!!!
Cancer recurrence in 11/15 - same place/same cancer
Total removal of rectum/tumor that had grown into the back of the vaginal wall
Perm Colostomy 12/3
Clean CT Scan 4/16/Clean Colonoscopy 5/9/16
PET Scan5/6 Lit up - need to get biopy now
J-Pouch and tumor removal
Stage 3b2n0m on 5/14/14
Reversal on 6/25/14 tiny bit of cancer left......
3 brachytherapy 7/28/14
Completed 8x Folfox 11/19/14
CT Scan on 12/15/14 NED!!!!
Cancer recurrence in 11/15 - same place/same cancer
Total removal of rectum/tumor that had grown into the back of the vaginal wall
Perm Colostomy 12/3
Clean CT Scan 4/16/Clean Colonoscopy 5/9/16
PET Scan5/6 Lit up - need to get biopy now
Re: 3rd Local reoccurance
I'm so sorry to hear this, Jenjb! I have lots of experience with Memorial Sloan Kettering. They took me on when everyone else gave up on me. Lots of brilliant doctors there and the team approach means more eyes/brains on your particular case. I don't have any specific knowledge about what you're dealing with, but I know margins are critical to PFS (progression free survival). I would ask Sloan about the MSK-IMPACT test for genetic info since that could help decide which type of chemo is best for you. This is major surgery with a capital "M" so I would gather all my facts from both places before making a decision.
Sending hugs your way!
Julie
Sending hugs your way!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1
Re: 3rd Local reoccurance
Thanks so much for your message Juliej! So happy to see you are doing so well! All my best to you!
1/14 Dx Stage 28 Radiation and 3 wks 5FU + Clinical Study 2x Zaltrap
J-Pouch and tumor removal
Stage 3b2n0m on 5/14/14
Reversal on 6/25/14 tiny bit of cancer left......
3 brachytherapy 7/28/14
Completed 8x Folfox 11/19/14
CT Scan on 12/15/14 NED!!!!
Cancer recurrence in 11/15 - same place/same cancer
Total removal of rectum/tumor that had grown into the back of the vaginal wall
Perm Colostomy 12/3
Clean CT Scan 4/16/Clean Colonoscopy 5/9/16
PET Scan5/6 Lit up - need to get biopy now
J-Pouch and tumor removal
Stage 3b2n0m on 5/14/14
Reversal on 6/25/14 tiny bit of cancer left......
3 brachytherapy 7/28/14
Completed 8x Folfox 11/19/14
CT Scan on 12/15/14 NED!!!!
Cancer recurrence in 11/15 - same place/same cancer
Total removal of rectum/tumor that had grown into the back of the vaginal wall
Perm Colostomy 12/3
Clean CT Scan 4/16/Clean Colonoscopy 5/9/16
PET Scan5/6 Lit up - need to get biopy now
-
DarknessEmbraced
- Posts: 3817
- Joined: Sat Nov 01, 2014 4:54 pm
- Facebook Username: Riann Fletcher
- Location: New Brunswick, Canada
Re: 3rd Local reoccurance
I have no advice just wanted to give you support!*hugs* I'm so sorry that this is happening to you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured!
Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”
Who is online
Users browsing this forum: No registered users and 392 guests