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by Jolene
Fri Oct 23, 2020 10:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Total Pelvic Exenteration
Replies: 11
Views: 1217

Re: Total Pelvic Exenteration

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...
by Jolene
Fri Oct 23, 2020 9:58 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: looking to donate/give away supplies
Replies: 7
Views: 303

Re: looking to donate/give away supplies

Hi Jep - Sorry to hear about your husband. I hope you and the family find comfort knowing that he is in a better place. I'm not in the US but I wonder if you can google to see if there might be some nearby non-profit cancer associations and see if it might be useful for their patients. They depend o...
by Jolene
Wed Oct 21, 2020 8:44 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please Help With Weight Loss/Endless Painful Constipation
Replies: 24
Views: 1477

Re: Please Help With Weight Loss/Endless Painful Constipation

I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be t...
by Jolene
Tue Oct 20, 2020 12:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please Help With Weight Loss/Endless Painful Constipation
Replies: 24
Views: 1477

Re: Please Help With Weight Loss/Endless Painful Constipation

Oh dear, this sounds terrible. I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ?...
by Jolene
Mon Oct 19, 2020 12:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Urinary issues after chemoradiation ?
Replies: 8
Views: 1574

Re: Urinary issues after chemoradiation ?

Hi everyone - thanks for sharing and thought I'll do an update and continue sharing with those who might have the same issue. Finally got round to checking in with a urologist - thank god it was a female doc as it's one of the most unglamarous tests I've ever done in my life while having to be awake...
by Jolene
Mon Oct 19, 2020 12:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hi road runner - if you do a search on excision I believe you will find a lot of information on this thread. There was one poster who was very pro excision though I cannot remember her nickname. I think it worked very well for her. Before I was declared a WW case, I inquired about excision after rea...
by Jolene
Fri Oct 09, 2020 12:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Urinary issues after chemoradiation ?
Replies: 8
Views: 1574

Re: Urinary issues after chemoradiation ?

So that is what I felt. Last fall, I started passing a small amount of blood. Assumed it was bladder cancer. The urologist put a camera inside of me to look inside the bladder, All was clear. As the camera is going in, there is a split second of pain, nothing real biggy, just uncomfortable for a sp...
by Jolene
Fri Oct 09, 2020 12:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Urinary issues after chemoradiation ?
Replies: 8
Views: 1574

Re: Urinary issues after chemoradiation ?

My aunt had pelvic radiation for cervical cancer and it damaged her bladder. She lost her ability to fully empty her bladder and would ‘leak’ as her bladder filled and was no able to hold the urine. Eventually her kidneys failed and she was on dialysis the last 18 months of her life. I would get in...
by Jolene
Tue Oct 06, 2020 3:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Urinary issues after chemoradiation ?
Replies: 8
Views: 1574

Urinary issues after chemoradiation ?

Has anyone suffered from any form of urinal incontinence / issues after chemoradiation? It's been 1.5 years since my pelvic radiation targetting a tumour at the rectum. I first complained about my frequent urination a couple of months back, the first suspect was simply UTI (urinary tract infection)....
by Jolene
Wed Jul 01, 2020 12:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

prayingforccr - I"m not sure if this is helpful for you but based on latest published studies, CCR can take up to 16 weeks based on a 2019 study ! When W&W first made it's headline by Dr Habr-Gama, 8 weeks was the benchmark. Further studies later pushed it to 12 weeks and the most recent o...
by Jolene
Tue Jun 30, 2020 12:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hi Jogey - your timeline and situation is so similar to mine. I got diagnosed in Nov 2018 too. Went through an identical treatment procedure as you did and also doing all the tests and scops every 4 months. Great news on the all clear so far and hope it continues to stay that way for you. :D I'm cur...
by Jolene
Fri Jun 19, 2020 10:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Prs we finished CRT 28th March 2020, so it's been 11 weeks after treatment, and now we are thinking of doing the mop up chemo. Yes stray cancer cells are the worry for us as well, especially since it looked like 1 Node was involved in the workup investigations after the first DX. Is mop up or Adjuv...
by Jolene
Tue Jun 02, 2020 1:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hello everyone - just checking into this thread to say hi as I have mostly been busy and only have enough time to lurk around! Nice to see some familiar names popping up to update their situation and some new names joining the WW-ers! My quarterly scans and test have been pushed back a number of tim...
by Jolene
Mon Jan 20, 2020 11:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 515
Views: 204044

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

Hello WW-ers, I got an all clear today with my scans and have officially passed the 1 year mark since radiation. :D Last week I did a full colonoscopy, biopsy, MRI and ultrasound for results triangulation and it all came out negative. Doc was very pleased with what he saw. My surveillance routine mo...

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