Repeat Performance

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Notagain!
Posts: 1
Joined: Fri May 04, 2018 7:33 pm
Facebook Username: Anne Morgan

Repeat Performance

Postby Notagain! » Fri May 04, 2018 8:41 pm

Nineteen years after my right hemi (followed by eight courses of 5fu + leukovorin) at age 59, and faithfully following regimen of CT scans, colonoscopies and such, the beast has returned, with a vengeance! My colonoscopy in mid-March showed an eight-cm cancerous tumor and innumerable polyps, of which 50 were harvested for analysis - they contained every imagineable form of colon cancer! Have met with my gastro and my surgeon and think I have a good team. Liver ultrasound revealed fibrosis (!) but will be checked further during surgery. Am having a flexible sigmoidoscopy on May 15th. Then we'll know whether my surgeon can save any of my lower colon to avoid a total colectomy. Now that I've reached 77 (36, mentally. :D ), I don't want any issues with skin sensitivities or infections BUT if a stoma is necessary, sobeit. I haven't had a chance to speak with a nurse-specialist regarding stoma care, etc., so the only info is what I've picked up online. Other issues are cardiac problems, including lbbb and chf - so I would prefer to be sedated for the least amount of time possible. My surgery will take place at Toronto's St. Michael's Hospital, which has a good report vis a vis colorectal cancer surgery. During my first bout in 1999, I received much encouragement and useful information from an online group that has since folded. If you folks have any tips, I'd love to have 'em.
Blessings and Peace.
Anne

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Repeat Performance

Postby DarknessEmbraced » Sun May 06, 2018 2:20 pm

I'm sorry your cancer has returned after so long and hope your surgery goes well!*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! :)

Dionca
Posts: 48
Joined: Sat Dec 02, 2017 2:04 am

Re: Repeat Performance

Postby Dionca » Sun May 06, 2018 5:11 pm

I feel for you, having to go through this again, almost 20 yrs later. Were you on the 3 or 5 year colonoscopy follow-up routine?

St Mike's has a good reputation, so I'm sure you will be in good hands. My gastro suggested that I go there, but I preferred the location of a different hospital (I also had a right hemi). The only tips I can think of right now, are to take a hand sanitizer with you wherever you go and make a habit of washing your hands as soon as you get home. Thankfully it's not flu season, but getting sick when you are recovering from surgery or having chemo, would not be fun. If you are having FOLFOX chemo (rather than oral) let the hospital make arrangements for a CCAC (community care access centre) nurse to come to your home to unhook you from the portable chemo pump, so you don't have to go to a clinic. You can get a "holster" for the pump at a drug store before your first session - I think I only paid about $5 for mine.

Good luck, and I hope everything goes smoothly for you!
stage 3b T3 N1b MX 2/27 nodes (surgery 4/2015)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (w/out oxi for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6
CEA after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6 /1.4 /1.5
neuropathy
recurrence in left lung (surgery May 2020)

Valkara
Posts: 4
Joined: Sun Nov 05, 2017 4:37 pm
Facebook Username: Bobbie Jean Valle
Location: Texas

Re: Repeat Performance

Postby Valkara » Sun May 06, 2018 7:39 pm

First sorry to hear about the return. I was diagnosed April 2017 stage 3. Sigmoid and rectum verge. Now after 28 days radiating, surgery with ileostomy loop, 6 months chemotherapy, now reversal of ileostomy. Scheduled for 5/29/18. I recommend finding a very good stoma nurse. Also the medical supply stores have a lot of knowledge. My issue was itching and tender skin around the stoma. I changed collars and bag two times a week sometimes I could go longer.

I hope all goes well. Let us know when you find out your schedule of treatments.

Valkara

NedPlease
Posts: 550
Joined: Fri Mar 23, 2012 3:56 pm

Re: Repeat Performance

Postby NedPlease » Mon May 07, 2018 8:37 pm

Well, this is beyond disturbing news. I hate that this has happened to you after so many years. It is the nightmare we NEDers have.
I’m interested in what your surveillance schedule was after the five year mark. CT frequency, in particular. CEA checked?
I wish you the best and glad you’re taking advantage of the knowledge and support here.

Best,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED


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