Question about second opinion

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IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Question about second opinion

Postby IM64 » Sun Feb 26, 2023 7:11 pm

I think my question is probably stupid, but it really stumps me. How to get second opinion? Or how to switch oncologist? We are relatively new to this system and still don't fully understand how it works.

In fact, we are not very happy with our oncologist. The only way he suggests is systemic chemo. We understand that is the most important part in our case, but we also want to know about other possibilities. When we try to ask about it (for example we asked referral to interventional radiologist to discuss about chemo- or radio-embolization as it was advised here) he become nervous and says we don't need it with our advanced disease. We even still don't know size of primary tumor (4 month later!), because radiologist forget to describe it in the report, and that doesn't bother our onc. Looks like he's not interested to take any extra steps other than usual chemo and blocks all our initiative.

I read on this forum that people sometimes change oncologists and try to find someone who want to treat for cure purpose. I just have no idea how to actually do it. To make an appointment with a doctor, we need a referral. Where to get it? Ask an existing oncologist? Or just send emails to other docs in hope someone will answer?

As I understand, we want to get a second opinion from another hospital, because the docs from the existing will never say something against their colleague, right?

Any thoughts are very welcome and thanks in advance.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

rp1954
Posts: 1861
Joined: Mon Jun 13, 2011 1:13 am

Re: Question about second opinion

Postby rp1954 » Mon Feb 27, 2023 8:21 am

IM64 wrote:How to get second opinion? Or how to switch oncologist?

Is this primarily a Canadian or even a provincial question about a required referral or not?
In the US it is a self initiated phone call or dr's referral and appointment wait - limited by insurance type, insurer network, and financial resources and willingness for out of pocket cash.

The only way he suggests is systemic chemo. We understand that is the most important part in our case, but we also want to know about other possibilities.

I would at least call other dr's offices and quiz the secretaries and nurses as possible consults.

We even still don't know size of primary tumor (4 month later!), because radiologist forget to describe it in the report,

Plan A - go back to the center and complain about insufficient detail.But they can be pretty sticky. I had an outside phone opinion for CT#2 that found a gross error, they missed the 4-6 cm of para-aortic cluster! The original scan's hospital office still balked me and asked why I needed it in writing (ahem, insurance dummy Never mind future Dr interviews). They issued a skinny addendum.
Plan B - outside reading by another radiologist or, maybe, oncologist. Our second surgeon ran the scan by his hospital's best radiologist.
Plan C - DIY. Our CT scan disks come with their own browser and tools that some patients do use.

Looks like he's not interested to take any extra steps other than usual chemo and blocks all our initiative.

Yep, that's certainly a reason for more consults and/or change at our house.
However, I ran out of steam chasing spoiled children on the remaining oncs, after the easier appointments.
Usually I can get same-day or next day appointments, but these oncs were often 2-3 weeks away for difficult time slots when I called and running on limited play books. This is why we assembled our own support Dr network.

try to find someone who want to treat for cure purpose. I just have no idea how to actually do it.

(I'm not in Canada)Looking and asking around. Friends, family, work, social networks. We picked some off the internet including the president of the national oncology society who was financed by just about every pharma and fairly easy to schedule. But it was still std recommendations, sales pitch and manipulation.

send emails to other docs in hope someone will answer?

May be more likely for medical tourism sites

As I understand, we want to get a second opinion from another hospital, because the docs from the existing will never say something against their colleague, right?

Maybe.
In the US, large metro areas for radiology reading can be dominated by a single partnership/cartel.
In a hospital, the nastiest onc, all smarmy, stabbed another dr right in the back less than 60 seconds after that other (radiation) dr walked out of her office. He had walked me over to her office suggesting possible chemoradiation collaboration. She had all but bitten my ankles off after an oncology society meeting in 5* hotel a year earlier and then it turned out she was our insurer's gatekeeper at this one hospital. Such pleasant surprises.
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

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Question about second opinion

Postby IM64 » Mon Feb 27, 2023 10:40 am

Thanks a lot RP for such detailed advice. Looks like I need to start to call to doctors offices and ask about appointment for consultations.

Regarding CT scans without prime tumor description - the onc promised to get attention of radiologist on that at the next CT. The next CT was last Friday, so will see the result soon.
I was more outraged by fact that onc. didn't even know that there is nothing about a prime tumor in all 3 CTs we did. We found it when ordered SD with all CTs from hospital and checked all reports ourself. I can not understand how he was planning to monitor changes if there are no initial sizes.

rp1954 wrote:Usually I can get same-day or next day appointments, but these oncs were often 2-3 weeks away for difficult time slots when I called and running on limited play books. This is why we assembled our own support Dr network.

This is from the realm of fantasy for us. We have 10-15 mins app every two weeks before next infusion and were sure that is a standard practice.

Thanks for idea about medical tourism sites. I need to research that direction.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Question about second opinion

Postby IM64 » Mon Feb 27, 2023 7:38 pm

prayingforccr wrote:I would pretend that doctor doesn’t exist, research specialists, and start over.

Looks like find specialists is a key point. Will try to do it.

prayingforccr wrote:This site is a wealth of information.

Absolutely agree!
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

Rock_Robster
Posts: 1037
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Question about second opinion

Postby Rock_Robster » Mon Feb 27, 2023 9:23 pm

IM64 wrote:
prayingforccr wrote:I would pretend that doctor doesn’t exist, research specialists, and start over.

Looks like find specialists is a key point. Will try to do it.

prayingforccr wrote:This site is a wealth of information.

Absolutely agree!


Just to echo the “find specialists” point - I think a lot of people do themselves a disservice by having a single doctor/oncologist throughout their treatment, and never seeking further specialist advice. So far through my treatment I’ve seen:

Treating oncologist 1 (first state, CRC liver met specialist, also a PI in ctDNA)
Treating oncologist 2 (second state, CRC generalist, clinician only)
Treating oncologist 3 (chemo only mindset - fired him)
Research oncologist 1 (focussed on phase 2-3 I/O trials, advanced genomic testing)
Research oncologist 2 (focussed on phase 1 trials)
Radiation oncologist (generalist)
Radiation oncologist (SABR/SBRT specialist)
3 surgeons (colorectal, hepatobiliary, lymphatic). Also saw another colorectal surgeon (didn’t like his approach).
Haemotologist (make sure past DVT issues didn’t jeopardise treatment)
Integrative medicine practitioners x 2 (of course)
Naturopath (underqualified - fired)

Remote reviews (I’m not in the US) - MSK, MGH.

Next I think I may need a specialist liver guy to help with the Gilbert Syndrome , in relation to trials.

So for me this is less about “second opinions” and more about “ongoing specialist advice”. There is so much development in this topics, you really need the advice from absolute specialists in the right areas if available. Best of luck.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

zephyr
Posts: 372
Joined: Thu Aug 18, 2016 7:31 am

Re: Question about second opinion

Postby zephyr » Tue Feb 28, 2023 3:30 pm

Forgive me if I've missed an important piece of the conversation and go off track here. I was in a similar situation. The simplest move for me was to get a second opinion from a GI cancer specialist at Mayo but Mayo didn't accept my insurance at that time so I paid out of pocket. I saw him after every scan, he gave me his recommendation for what he would do if I were his patient, and I then took it to my regular oncologist and said this is what we're going to do. Did it make me any friends in my primary oncologist's office? Nope. But my 2nd opinion doc was able to think outside the box and may have kept me alive this long.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Question about second opinion

Postby IM64 » Tue Feb 28, 2023 4:48 pm

Rock_Robster wrote:So for me this is less about “second opinions” and more about “ongoing specialist advice”. There is so much development in this topics, you really need the advice from absolute specialists in the right areas if available. Best of luck.

You are absolutely right - “ongoing specialist advice” that is exactly what we need. The big question how to get it. Both Ontario main cancer centers (Princess Margaret and Odette) sites say "​​​​You need a referral from your doctor to become a patient". I started to research small medical centers, but honestly not sure if I can find top/good specialist there. All of that is a little complicated, to say the least...

I read here some people have a team of different doctors/specialists, they work together, plan treatments, etc. We haven't, and still not clear how to get them.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

IM64
Posts: 90
Joined: Wed Nov 02, 2022 5:51 pm

Re: Question about second opinion

Postby IM64 » Tue Feb 28, 2023 4:53 pm

zephyr wrote:The simplest move for me was to get a second opinion from a GI cancer specialist at Mayo but Mayo didn't accept my insurance at that time so I paid out of pocket.

That is perfect you found doc who want and know how to treat you! Thanks for share your experience.
Looks like in US it is not a problem to get appointment with doc if pay cash. Sometimes it much better than free medicine in Canada, but can not do anything without referral.
Husband of DX 10/2022 (50 yo), Stage IV, MSS, KRAS G12A, PIK3CA, G545L
Multiple bilateral Lung mets/Extensive bilobar Liver mets, CEA 4163
10/2022 Colostomy, Biliary drain, FOLFOX (+Avastin 4 rounds)
1/2023 Biliary drain removed, CEA 498
3/2023 FOLFOX failed after 9 rounds total, CEA raised to 651, started FOLFIRI w/o Avastin

Rock_Robster
Posts: 1037
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Question about second opinion

Postby Rock_Robster » Tue Feb 28, 2023 6:24 pm

I’m in Australia and we need a referral for all appointments too. However this can usually come from anyone, including your GP/PCP. My oncologist was mostly happy to refer me, but if not my GP didn’t really have skin in the game so was happy to also write referrals as I wanted them.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial


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