dodged one

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Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

dodged one

Postby Ron50 » Mon Apr 10, 2017 10:37 pm

Just got home from a scope. My gi put me out to three years after the last one. I wasn't very happy about it but she insisted. Since I went on the pension I can't afford private so I went thru the public system. Another six month wait. The gI today removed four polyps the largest at 11 mm and the smallest 4 mm. They have all been sent for biopsy. He thinks they are ok. I will find out in a week . He had to put three staples in the hole left by the big one to stop the bleeding. The moral ,If you don't like what your doctor says , challenge it. The new GI said I will never go beyond two years again for a scope. New primaries are a lot easier to prevent than mets , I would have been really annoyed to develop a new met after nearly twenty years of survival because I accepted bad advice. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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wwroam
Posts: 763
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
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Re: dodged one

Postby wwroam » Tue Apr 11, 2017 1:00 am

Hi Ron
It's 6 months wait in the public system still Ron.
It doesn't seem to have improved in 9 years.
I had my last C. , June 2015. My colon was a battlefield. I'll be back in 2018 ( provided I'm still drawing breath).
I had my first ever contact with the public system today at the Lung Clinic ( they have a Lung Specialist, Surgeon, Radiologist and Oncologist in panel).
Fortunately I will be retreating to Icon for my chemo .

Wayne
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: dodged one

Postby Ron50 » Tue Apr 11, 2017 1:18 am

G'day Wayne,
Have they been able to gauge the extent and involvement of the lung cancer yet? I was sort of hoping that with your other experiences with cancer that they would have been able to catch it at a very early stage and that the existing regimes could stop it in its tracks with perhaps a little help from surgical intervention. One thing is for sure in my book you deserve a major break to go your way, there is bad luck and then in your case there is bloody dreadful. Best wishes Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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wwroam
Posts: 763
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: dodged one

Postby wwroam » Tue Apr 11, 2017 1:20 am

T1A N2 M0
Could be worse
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: dodged one

Postby Ron50 » Tue Apr 11, 2017 5:02 am

I guess , now it comes down to the same old one step at a time. I hope you have some support around you to help. Survive it mate, it is our only answer to cancer. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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

Re: dodged one

Postby DarknessEmbraced » Tue Apr 11, 2017 12:54 pm

I'm glad you had the polyps removed! :)
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! :)

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: dodged one

Postby michelle c » Wed Apr 12, 2017 2:43 am

Bloody hell Ron! :x I'm hoping that they turn out to be nothing worth worrying about. It just goes to show doesn't it? Two years should be the norm for us. I have a colonoscopy every two years. Next one next month. Thinking of you and hoping and praying for the best for you. Please keep us posted xx
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: dodged one

Postby Ron50 » Wed Apr 26, 2017 3:07 am

Well pathology has come back. All of the polyps removed including the 11mm one were benign tubular adenomas with no sign of cancer cells or high grade dysplasia. Cea remains at 0.6 after nearly 20 years. It appears you may have to put up with me for a while longer. Thanks for your concern Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: dodged one

Postby LPL » Thu Apr 27, 2017 12:28 pm

Congratulations :D
That was so good to hear Ron.
Thank you for sharing this and all you have experienced since your CRC diagnose.
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

TXLiz
Posts: 249
Joined: Thu Sep 22, 2016 3:31 pm

Re: dodged one

Postby TXLiz » Thu Apr 27, 2017 1:35 pm

Happy for you that you dodged that bullet.

I do not understand why they push cancer patients and survivors to accept less screenings, tests, etc. My doc said colonoscopy every 3 years and I am totally not comfortable with that at all.

You do have to push like a crazy person.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
MSI-high
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"
Colonoscopy 10/5/2017 clear

testing765
Posts: 324
Joined: Tue Aug 19, 2014 9:41 am

Re: dodged one

Postby testing765 » Thu Apr 27, 2017 4:38 pm

I am glad to hear your good news.

And my oncologist suggested the same thing to me, a colonoscopy in three years. This was after I had a colonoscopy at one year post surgery and they found three new polyps had developed in a year. The first colonoscopy i had a 44 revealed 3 polyps and the cancerous tumor. The oncologist would not budge on the three year wait. He said he checked standard of care guidelines, that the guidelines recommended a colonoscopy three years after the one year post resection colonoscopy, and that the insurance companies use these guidelines in making their decision to cover procedures. He said the benefit of having a colonoscopy sooner than three years would not outweigh the risk of having the colonoscopy itself.

I looked at the National Comprehensive Cancer Network, NCCN, guidelines. The NCCN recommends a colonoscopy one year after resection. Repeat colonoscopy typically recommended at 3 years, and then every 5 years, unless follow up colonoscopy indicates advanced adenoma, villous polyp, polyp greater than 1 centimeter or high grade dysplasia. In which case colonoscopy every year. More frequent colonoscopies may be indicated in patients who present with colon cancer before 50 years of age.

I didnt argue with the oncologist, but I am going to see my gastroenterologist and request to have a colonoscopy in 9/17, two years after my last one. And if my gastroenterologist declines my request, I will look for another gastroenterologist.
male-age 44 at diagnosis
8/14-clnscopy
8/14-CT scan,no mets
9/14-left colectomy,CEA 2.2 before surgery
pT2pN2bpM0
3 cm tumor in dscnding colon
7/23 pos LNs
low grade MSI stable
10/14-start folfox
1/15-CT & PET scan and sigmdoscopy- no mets
3/15-finish folfox
9/15- clnscopy- 3 polyps removed
10/15- CT scan, NED
10/16- CT scan, NED, CEA 1.6
10/17- clnscopy- 4 polyps removed, CT scan NED, CEA 1.8
10/14 1.9; 4/15 2.8; 5/15 2.4; 9/15 2.8; 12/15 3.1; 1/16 3.0; 4/16 2.5; 7/16 2.5; 10/16 1.6; 1/17 1.9

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: dodged one

Postby Ron50 » Thu Apr 27, 2017 10:18 pm

I agree that the medical profession is a bit like the legal system. You are rarely if ever judged on prior history. When my GI put me onto three yearly scopes she completely ignored the facts that my original cancer was considered extremely aggressive by an experienced and highly regarded cancer surgeon. Added to that were two mm polyps found in earlier scopes had significant displaysia. I was 49 at diagnoses of stage 3c colon cancer into six nodes. I had 48 sessions of 5Fu and levamisole. Levamisole was banned in around 2001 for often fatal side effects. To my knowledge no follow checks were done either in the USA or Australia on patients who received levamisole. Given the nature of cancer ,there are some weird and wonderful avenues of research done in trying to find ways of treating cancer. It surprises me that research into long term survivors does not appear to be included in those avenues.
It certainly helps to be your own advocate. When I was waiting the extra six months for my scope I asked my nephrologist to check my CEA. I found it much easier to accept the no cancer found result with cea or 0.6. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo


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