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Old 03-13-2019, 07:25 AM   #1
Nguyen
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Join Date: Nov 2005
Posts: 150
bad, mediocre, or gifted oncologists

In every single field of any discipline, there are bad, mediocre, excellent, and gifted performers. How can a patient or love ones get answer to below three questions before placing a patient's life in an oncologist hand?

1_ Discounting "bed side manner", how can one determines which category (bad, mediocre, excellent, and gifted) an oncologist belongs to? Note that reading online reviews (if available at all) do NOT help very much in this regard.

2_ For those of us who do in-depth research (not as career, but to care for love ones) with in-depth knowledge of the field, how does one determine an oncologist who does not have an ego that gets in the way of taking suggestions (backed by relevant data) from us (patients, relatives), since we are lay person in their eyes? Most (if not all) everyone in any field would answer yes when ask the question such as "are you open or willing to consider suggestion", whether this is the honest answer, who knows.

3_ How much time an oncologist is willing to spend thinking about a patient's case in determining treatment. Yes, there are some "easy" treatment decision, most requires some careful thought, particularly 2nd, 3rd, 4th lines with multiple difficult choices and ramification. This is where the "excellent" or "gifted" part comes in.

I think I am just venting, I am sorry, thanks for your thought.

Nguyen

Linda's treatment history

03-2019 - current: bone mets discovered, denosumab, will be in syd-985 trial
08-2018 – 03-2019: Xeloda and Herceptin, have to reduce Xeloda dose several times to 1000mg/day
04-2018 – 08-2018: restart T-Dm1
03-2018: biopsy of the lung: ER+, Her2+++, PR—(change from PR+)
03-2018: comprehensive genetic profiling by FoundationOne medicine, numerous genomic alterations

12-2017 – 04/2018: Pertuzumab + Herceptin
03/2017 – 12/2017: Herceptin + Fulvestrant (take a break from T-Dm1)
07/2014 – 03/2017: T-Dm1
02/2014 – 06/2014: Everolimus (5mg), Exemestane, Herceptin
08/2013 – 01/2014: Femara, Herceptin
12/2012 – 07/2013: 4mg estradiol, Herceptin
08/2012 - 12/2012: Fulvestran 500mg, exemestane, Herceptin (Stop everolimus due to mouthsores)
05/2012 - 08/2012: Everolimus (10mg), Exemestane, Herceptin, Zometa
08/2011 - 05/2012: Herceptin, Tykerb, Femara, Zometa
08/2010 - 08/2011: Herceptin, Femara, Zometa
09-2009 - 08/2010: Herceptin and estradiol (6mg)
09/2008 - 09/2009: Herceptin, Fulvestrant, Femara
03/2008 - 09/2008: Herceptin, Exemestane, Oophorectomy
01/2005 - 03/2008: Herceptin (readded) and Femara
07/2004: It returned again via several small nodules in the lung
10/2002: NED (via CT and CA27.29)!
10/2001 - 01/2005: Femara, (Fosamax)
12/2000 - 10/2001: Herceptin and Navelbine
12/2000: lung metastatic was diagnosed (a few small nodules)
02/1998 - 12/2000: Daily Tamoxifen
05/1997 - 04/1998: Modified Radical Mastectomy, many cycles of chemo regiments (CAF,Taxol, Carpoplatin, Thiotepa, Navelbine, Taxotere), high dose chemotherapy with autologous stem-cell s rescue, and radiation
05/1997: First diagnosed with BC stage 3A, ER+, PR+, HER2 +, poorly differentiated, nuclear grade 3.
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Old 03-13-2019, 09:17 AM   #2
Donna H
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Join Date: May 2014
Posts: 228
Re: bad, mediocre, or gifted oncologists

Just a quick comment - I liked my first oncologist but I kinda felt she was "phoning it in" when it came to listening and wanting to address issues. I had to switch to another oncologist (in a different office) thanks to my insurance at the time. I really like the new oncologist and his staff. Seems much more willing/open to listen.
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Old 03-14-2019, 01:35 PM   #3
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 743
Re: bad, mediocre, or gifted oncologists

I did have one awfully frustrating and potentially deadly experience with an oncologist. When I was diagnosed with ovarian cancer it had been almost 14 years since my original diagnosis of breast cancer but it had been an advanced one....stage 3c. I underwent the operation and chemotherapy for the ovarian and was monitored (and still am) by the CA125. As it started to increase I was given an abdominal CT with negative results for mets. This continued and my CA125 kept going up. The ovarian oncologists were a team so I didn't see the same one each visit. I kept bringing up my breast cancer but each one seemed to ignore it. Finally I got an older oncologist who, when I brought it up again immediately went to the notes and order a chest and abdominal CT. It was then the mets in my lungs were found. A biopsy was taken and it was discovered to be breast mets not ovarian and I have now a wonderful bc oncologist and am on a great treatment. Because the normal tm for ovarian was rising they didn't think it could have anything to do with bc however, if you have tumour in the pleura of your lungs this tm can be used. I don't know if things work this way in the states but here in Ontario each different cancer has a different oncology specialist who do not really overlap. Ultimately my luck changed when I had the senior surgical oncologist from the ovarian team use her guilty influence to get me an appointment with the most brilliant research bc oncologist.

Lesson very definitely learned.

Cathy
__________________
Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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