Wow..What your Oncologist is really thinking

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wandalein
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Wow..What your Oncologist is really thinking

Postby wandalein » Wed Mar 25, 2015 4:46 pm

This is an amazing article. Good to know how they think. This reminds me of the oncologist who told my husband they thought he was still salvageable. That word really bothered me, now reading this article I understand why:

http://www.ascopost.com/issues/june-10, ... thing.aspx
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Wow..What your Oncologist is really thinking

Postby rp1954 » Wed Mar 25, 2015 5:56 pm

I think Dr. Chang's pessimism dramatically underestimates results with competent, diligent doctors AND patients, with thorough surveillence and fully MODERN treatments. I happen to think current NCCN/ASCO blood surveillence protocols and practices are greatly inadequate and technically uninformed.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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MamaN
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Re: Wow..What your Oncologist is really thinking

Postby MamaN » Wed Mar 25, 2015 6:07 pm

This article scares me! I need survailance because of polyps in gallbladder and nodules in lungs and thyroid . Hmm , I really don't know what to think about this , seeing how hard I had to fight to get the test my dr ordered approved.
Dx@45 stage t3 n1b m unknown IIIB
Resected in 8/2010 rectosigmoid
5.5 tumor with 3 /26 lymph nodes
Lymph vascular invasion
Folfox sept 2010 to feb 2011
10 tx only stopped due to low wbc

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Wow..What your Oncologist is really thinking

Postby CRguy » Wed Mar 25, 2015 6:20 pm

Any time a doctor with big pharma "disclaimers" i.e conflict of interest, starts talking economics
...may be enough to get the highest yield and greatest value on our investment.
my eyes glaze over, I close my ears to what he is saying and go looking for a doctor who is interested in ME… not anyone else's financial bottom line.

My personal take :
Chang is an a-hole
Sigurdson is a doc I would go to.

JMO
BTDT
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: Wow..What your Oncologist is really thinking

Postby CM35 » Wed Mar 25, 2015 7:00 pm

Ugh. I am pretty sure "routine surveillance" accounts for the difference between me sitting here alive and well, versus being 6 feet under. Considering my cancer has been asymptomatic thus far. I really hope Chang was playing devils advocate here. I would like to think we live in a world where decisions regarding routine follow up are based on science, not on how much it costs.
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

justin case
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Location: Katy, Texas

Re: Wow..What your Oncologist is really thinking

Postby justin case » Wed Mar 25, 2015 7:47 pm

I haven't read anything in this post but a few sentences. While on an elevator from my surgeon to my oncologist's office, I learned from 2 doctors, just how lucrative oncology was. They were talking amongst themselves about my oncologist.
That is when I started looking out for my own well being. I could still be on chemo, if my original oncologist had his way. After all he had a chemist for mixing chemo, a phlebotomist for blood draws, a chemo nurse who taught nurses at Anderson, and a stealthy person to get everything approved by the insurance. Above all this, he started his own cancer foundation, to help mask his profits. Now as I said, this post may be about something completely different, BUTT that is my take on what oncologists are thinking.
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

cathy123
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Joined: Sat Nov 08, 2014 3:36 pm

Re: Wow..What your Oncologist is really thinking

Postby cathy123 » Wed Mar 25, 2015 8:08 pm

That is scary - If insurance companies can get justification that there is no benefit to surveillance I can see lots more rejections of coverage in the future.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Wow..What your Oncologist is really thinking

Postby Kick'nAssCancer'sAss » Wed Mar 25, 2015 8:19 pm

I read this forum regularly and it amazes me just how bad it must be relying on insurance companies for your health. It just makes me appreciate our health system in Canada even more. It is not perfect but no one goes broke fighting cancer. I had the full monty with surgeries, chemo, radiation, scans, blood work, everything. Plus throw in $11,000 of Fragmine injections after I got a clot and my biggest expense was hospital parking.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Wow..What your Oncologist is really thinking

Postby lpas » Wed Mar 25, 2015 8:30 pm

muskokamike wrote:I read this forum regularly and it amazes me just how bad it must be relying on insurance companies for your health. It just makes me appreciate our health system in Canada even more. It is not perfect but no one goes broke fighting cancer. I had the full monty with surgeries, chemo, radiation, scans, blood work, everything. Plus throw in $11,000 of Fragmine injections after I got a clot and my biggest expense was hospital parking.


So true, but there are pros and cons on both sides. I got my post-surgical pathology report back (free) within a few days of surgery vs. someone from Toronto who posted the other day that she was told 4 weeks. And poor DarknessEmbraced is on an 18 month waiting list for Lynch testing. Mine was scheduled and the results back within 3 weeks ($100 co-pay).
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

wandalein
Posts: 93
Joined: Thu Nov 07, 2013 6:24 pm
Facebook Username: Wanda Leinweber

Re: Wow..What your Oncologist is really thinking

Postby wandalein » Wed Mar 25, 2015 8:37 pm

muskokamike wrote:I read this forum regularly and it amazes me just how bad it must be relying on insurance companies for your health. It just makes me appreciate our health system in Canada even more. It is not perfect but no one goes broke fighting cancer. I had the full monty with surgeries, chemo, radiation, scans, blood work, everything. Plus throw in $11,000 of Fragmine injections after I got a clot and my biggest expense was hospital parking.


We also live in Canada; I suspect they are already on to this (as is the UK) and that is why my husband was scanned more than a year after the initial surgery and now is luckily on a 6-month one, for now anyway, next scan is April 10 but I bet if it is clear it will be a year from then. And yes, insurance companies ultimately will have a big say in this and likely already do. Meanwhile, for the case of individual disability insurance that my husband is eligible for it is a constant battle to prove that having a terminal illness, and everything that goes along with it, prevents him from travelling extensively and doing chair-side dentistry training in confined spaces. I ironically happen to work in this very industry that insures my husband and even though I am on the sales & marketing side vs the claims side, I am already telling people just to get critical illness insurance because individual disability is a waste of time. In their view you can have a terminal illness but recovery from surgery is all it should be. Meanwhile Critical Illness would just pay you out a lump sum if you are stage 4.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Wow..What your Oncologist is really thinking

Postby lauragb » Wed Mar 25, 2015 8:38 pm

I also think Dr. Chang is an A-hole and am glad he's not my doctor. This business model language leaves out the human factor and how much we still don't know.
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Wow..What your Oncologist is really thinking

Postby Kick'nAssCancer'sAss » Wed Mar 25, 2015 8:41 pm

Hmmm my path report was in my hands within five days before I left hospital. In some of the major cities I can see a two tier system where people who have money can pay for test, scans and get results same day. We pay crazy taxes all our lives and especially for those who drink and or smoke. Gas is taxed heavily also, so in the big picture it really is not free, Citizens pay for it all our lives living here. I know that basically everything I had done was over 250k and I have not paid even close to that amount in taxes over my working life. It is peace of mind knowing that you are covered should you need it and no worries about insurance companies nickel and diming you.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

wandalein
Posts: 93
Joined: Thu Nov 07, 2013 6:24 pm
Facebook Username: Wanda Leinweber

Re: Wow..What your Oncologist is really thinking

Postby wandalein » Wed Mar 25, 2015 8:58 pm

Agree muskokamike, we are grateful to be Canadian and not worry about the actual bill at the end of the day; however I was thinking that means they also call the shots. There is no two-tier system in Canada, if we want more we would have to pay for that and take a vacation in Palm Springs if we wanted more screening but at the end of the day we are very fortunate and even in terms of my company drug coverage, which until 2012 we never used, covered hundreds of dollars a month for medications that would have been difficult during the 90-day wait period for the individual disability coverage with my salary only. So I am do appreciate but I also think it means we do have less say in the timing of the follow-up scans.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Wow..What your Oncologist is really thinking

Postby NZJay » Wed Mar 25, 2015 9:14 pm

As a new zealander, my treatment is free. However I'm only on annual scans after a 3c diagnosis, and my oncologist didn't mention cimetadine, and is opposed to me using aspirin.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

wandalein
Posts: 93
Joined: Thu Nov 07, 2013 6:24 pm
Facebook Username: Wanda Leinweber

Re: Wow..What your Oncologist is really thinking

Postby wandalein » Wed Mar 25, 2015 9:24 pm

NZJay wrote:As a new zealander, my treatment is free. However I'm only on annual scans after a 3c diagnosis, and my oncologist didn't mention cimetadine, and is opposed to me using aspirin.


My point exactly in Canada, the UK or NZ wherever it is free they call the shots. As for your 3c dx, like my husband was initially, there is a 60% chance or better that it would spread to the liver, and waiting over 1 year for a scan proved it for my husband, however by his own choice, he was chemo and radiation naive so an excellent candidate for liver surgery which was his bet shot at a cure. Like the one Oncologist the only one who made sense in this article said, scanning proves beneficial for spread to the liver that is potentially agreeable to surgery which is the best chance (60%) of being alive in 5 years. Your doctor should not be against you taking aspirin. Here in Canada we need vitamin D. And ironically there was a miscalculation in the RDA and it is essentially 10 times the amount they recommend. We figured that couldn't hurt 3 years ago. And new studies say that patients with CRC who have high vitamin D levels have better odds for survival.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED


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