How to talk to oncologist in Canada about 2nd opinion

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Apple1291
Posts: 63
Joined: Mon Jul 04, 2011 2:14 pm

How to talk to oncologist in Canada about 2nd opinion

Postby Apple1291 » Thu Mar 16, 2017 10:24 pm

My dad was recently turned down for HIPEC at Mt. Sinai in Toronto. We are currently seeking second opinions and since my parents are willing to travel they have a consultation set up at Johns Hopkins. My dad will be seeing his current oncologist here in Toronto next week to get the results of his recent ct scan. My parents aren't sure if they should tell him about this consultation. So far he has been adequate at best and sometimes quite rude. Is there any benefit to telling him about the consultation? Can he help us in any way? He seems like the type to get offended about seeking other opinions. Has anyone been in a similar situation?
Daughter to Dear Father 57 years old at diagnosis
T4N0MO July/11
12 rounds folfox completed March/12
Recurrence June/16 peritoneal carcinomatosis
12 rounds folfiri and avastin completed November/16

Steph20021
Posts: 422
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: How to talk to oncologist in Canada about 2nd opinion

Postby Steph20021 » Fri Mar 17, 2017 12:55 am

I haven't been in a similar situation, but if it were me I wouldn't bother saying anything to the oncologist until after the consult, if at all. If and when things start to proceed and he is approved for Hipec then I'd mention it then.
I was approved for the first Hipec at Toronto but, when cancer was back only nine months later, I was rejected from having a second one because of some particular infected lymph nodes in my back area. Never got another opinion as wasn't able to travel and their reasoning for rejection sounded sound.
Best of luck, please keep us posted how things go.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, R ovary removed & temp ileo
3/14-9/14- 12 rds folfox
10/14- rev ileo
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
7/15- flex sig- all clear
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
Current: abdo wall mets and lymph nodes
Feb/17- 1 wk radiation to abdo wall
Currently on folfiri 4 life

Achilles Torn
Posts: 38
Joined: Fri Dec 16, 2016 2:41 pm

Re: How to talk to oncologist in Canada about 2nd opinion

Postby Achilles Torn » Fri Mar 17, 2017 1:43 am

Go ahead with the second opinion but fire the Oncologist if it's even a question if you should tell him. My experience has been in BC but I can tell you there are some doctors I would refuse to see and your dads Onc may be in that category. I've met with 4 oncologists out here - 1 was a complete ass, and 1 was incompetent. My primary Onc is decent and when we disagreed he setup a second opinion (in house) with a top GI oncologist at the BCCA who was excellent. They both have been clear I can switch oncologists if I wish and second opinions are welcomed both in house and external.

Its hard in Canada as we don't have options outside of our provincial agencies. But if you advocate firmly you can get to the right people.

Just my 2 cents.

AT
40 yo Male. DX By Surgeon Dec. 8 2016
Sigmoid Colectomy Dec. 9 2016
Pathology T3N2b?MX 19 of 24 Nodes Positive.
peri colonic tumor deposits 8cm from Tumor. Perineural invasion positive.
PET scan shows Para-Aortic and Iliac Lymph node spread.
Moderately differentiated. MSS. KRAS/BRAF Wild
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after 1st round

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CRguy
Posts: 8851
Joined: Sun Feb 10, 2008 6:00 pm

Re: How to talk to oncologist in Canada about 2nd opinion

Postby CRguy » Fri Mar 17, 2017 2:07 pm

I don't see anything wrong with seeking input on other options if your current Docs are not willing to on your behalf.

IME, there is a certain " this is the way we do things here " mindset within provincial / regional health bodies, so your Onc may well say " you won't find others here who will follow up for HIPEC for you " ... which is then, your entry into .. "then we would like to at least explore other options while we can."

If your Onc is offended = tough shit is my personal opinion .. BUTT with my own experiences and medical training I am in a position to discuss and argue with them, and many patients are NOT. You need to weigh the situation to see if it would affect what you follow up with. IF he is only adequate and often rude .. AND not going to bat for you = I would shop for another Onc anyway.... unless he's the only game in town.

I have kicked docs to the curb.
I am not looking for warm and fuzzy touchy feely ... I want the BEST doctor for my situation, and IF they happen to be personable = great
... BUTT I have had a couple of buttheads who worked well for me and were great at what they did, so I went with it when I needed to.

Steph probably has the best handle on the Ont scene
Achilles Torn experience in BC kind of mirrors mine, as patient and when I was advocating for my Dad.

Best wishes
CRguy
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
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LoraCF
Posts: 6
Joined: Sun Jan 15, 2017 10:58 pm

Re: How to talk to oncologist in Canada about 2nd opinion

Postby LoraCF » Sun Mar 19, 2017 12:51 pm

If there's one thing we've learned in our so-far two years of dealing with the Cancer Agency here in B.C,, it is that you MUST be your own advocate and never blindly trust anyone.

My partner currently has a choice of Stereotatic radiation or surgery for his sacrum met.

However, we were initially told by our oncologist that there was really nothing that could be done for this situation and that my partner could look forward to perhaps one to three years of increasing pain before death.

Really? When there are two perfectly viable options available?

I know that a panel of specialists (surgical, radiological, oncological) gets together to discuss each case. That being so, one has to wonder how it's possible for an oncologist to be so unaware of possible treatments for this condition.

Terrifying.

In our case, we're hoping that we'll no longer need the oncologist, but if we do, we will ask for someone else. My partner has only the one life. Being polite might kill him. We need to be working with someone who is up on the latest information.

I say go for the consult and then, based on what you hear, fire the oncologist if necessary. Like my partner, you've got one life.

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CRguy
Posts: 8851
Joined: Sun Feb 10, 2008 6:00 pm

Re: How to talk to oncologist in Canada about 2nd opinion

Postby CRguy » Sun Mar 19, 2017 9:24 pm

LoraCF wrote:If there's one thing we've learned in our so-far two years of dealing with the Cancer Agency here in B.C,, it is that you MUST be your own advocate and never blindly trust anyone.

vancouver, surrey, abbotsford, kelowna, victoria, prince george ?????? ...... WHICH BCCA ???

YES be your own advocate
NO don't take their "word" as WORD ! all the time
NEVER take surgical advice from an ONC !!!! unless they are board certified SURGICAL oncologists ... most are not
( AND never take medical oncology advice from a radiologist, never take radiology advice from a surgeon ... JUST to be complete here ! )

EACH have their own specialty ... to which they should confine their remarks and advice ...
UNLESS their opinions are requested outside their areas of expertise.

YEAH
get a second opinion
get a third opinion and IF they ALL disagree ... GET A FOURTH opinion !

My Life = MY choice ... BUTT I have to have ALL the options and all the info, and then I will decide.

WORD !

( PM me if you need / can supply more specifics. I have personal experience @ Vanc / Kelowna / Surrey )
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
Image

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LPL
Posts: 113
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: How to talk to oncologist in Canada about 2nd opinion

Postby LPL » Wed Mar 22, 2017 5:58 pm

Lora wrote:
I know that a panel of specialists (surgical, radiological, oncological) gets together to discuss each case. That being so, one has to wonder how it's possible for an oncologist to be so unaware of possible treatments for this condition.
Terrifying.
In our case, we're hoping that we'll no longer need the oncologist, but if we do, we will ask for someone else. My partner has , the one life. Being polite might kill him. We need to be working with someone who is up on the latest information.

I and hubby, who is the one with colon cancer, are not in Canada - but your words rings so very true tu me!
We live in Europe. I do Not like hubby's oncologist - but I love his surgeon!! - I Really hope that they have this "panel" that they say they have !?! taking a joint decision in hubby's case. Right now I'm holding my breath that we will not need hubby's oncologist anymore - and if that will not be the case... I will fight for getting a new oncologist, someone that WE can communicate with !
Thank You for writing the words that was looked in my head... Best of Luck to your hubby & you /LPL
DH @65 Emergency colostomy 3/18/16
DX: CC recto-sigmoid junction 4/11
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets:3 Liver resectable
T4aN1bM1a Stage 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
Chemo: 4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open resections):
3/18 Colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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