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Old 05-10-2018, 01:25 PM   #1
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
When should we consider switching Oncologists

Hi all;

I am now being treated for her2- MBC with a new 3 week on, 1 week off Palbociclib pill (iBrance) plus Letrozole every day. As this is new to me I have been lurking and reading past posts on an ibrance link on community.breastcancer.org. It's been very helpful to me and I have noticed how many other women have had their various tumours mutate over time. It's a stage 4 site (unfortunately this is my new reality) and so I'm hearing about all sorts of new treatments which are becoming quickly available. This has gotten me thinking.

I loved,loved my bc oncologist and totally credit him with saving my life first time around. He was very well respected by the hospital I attend and is missed by the younger oncologists. I would no doubt be seeing him now if he hadn't retired. Now I'm seeing a young (young to me, he's in his early 40's) man who is very energetic, upbeat and totally into all of these new drugs. He is convinced that I will be living a longer life than I might otherwise have expected. He is the lead investigator for the OCTANE program at our hospital and is having my ovarian and lung tumour genetically tested as well as my own blood. I am receiving a drug that has been available for only two months in Ontario.

So, I've been kicking around the idea that having someone totally new at this point in my treatment, someone who has worked recently in the US and is up to date on all of the newest treatments and is open minded to all the in's and out's my cancer might offer isn't this the very best thing that could have happened. How comfortable I was with my oncologist and him with me. I wouldn't have changed but if he hadn't retired, should I have? Just a thought.

my best wishes to all,

Cathy
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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



Last edited by Cathya; 05-10-2018 at 03:17 PM..
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Old 05-10-2018, 03:41 PM   #2
Lucy
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Join Date: Oct 2014
Posts: 293
Re: When should we consider switching Oncologists

I think it's important to trust and be comfortable with your doctor. If you're not, that's when you look to change. I knew so little about HER2+ cancer when I was diagnosed and didn't know what to ask other than, how quickly can you get it out of me. When I came here I learned more and brought questions to her that seemed relevant to my situation. She never seemed to be bothered by that. If she had, I might have considered changing doctors.

Bottom line, we're all doing the best we can based on the information we have at the time. If you reach the point where you feel your doctor isn't listening to you or answering your questions to your satisfaction, that's when you need to look elsewhere for your medical needs.

Just my personal opinion.
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Old 05-10-2018, 09:24 PM   #3
Pamelamary
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Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
Re: When should we consider switching Oncologists

Hi Cathy,
I think there are two important things to consider in regard to choice of oncologist - the personal trust/communication factor and an up to date awareness of current developments in the field. I would be worried if my oncologist was lacking in either area. I have only changed once, for reasons more concerned with lack of empathy.
Sounds as if you have been lucky!
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 05-15-2018, 08:23 AM   #4
Colleen
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Join Date: Jun 2014
Location: Monarch Beach, CA
Posts: 88
Re: When should we consider switching Oncologists

I have thought of changing oncologists more than once in the past four years. After “interviewing” several other oncologists I decided to stay with mine. While I feel her answers to my questions lack depth, they sound scripted (maybe she’s answered these questions too many times), I figure my care wil not change until I progress/recurr, at this point I will consider a move.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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