Coordination between oncologists - how to proceed?

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zephyr
Posts: 246
Joined: Thu Aug 18, 2016 7:31 am

Coordination between oncologists - how to proceed?

Postby zephyr » Mon Mar 11, 2019 9:57 am

Over the years I've read posts here about having a major cancer center give treatment direction to a local cancer center or oncology practice. How do you do that logistically? Is it a common enough practice that everyone just goes along with it? I have started seeing a second oncologist - a GI cancer specialist - at a major cancer center. For the moment, I'm in a holding pattern, a wait-and-watch mode. If the cancer become active, some thinking outside the box will likely be required because I've developed resistance to all the "standard" treatments that will work with my genetics. Receiving treatment at the major cancer center may not be financially feasible for me because of insurance complications. I don't want to be an alarmist but I want to be prepared if the worst happens. How do I convince the major cancer center oncologist to agree to lead the team without providing the actual treatment, and how do I convince the local hospital/oncologist to provide treatment (infusions, radiology) but not direction? I guess I'm expecting push-back. It becomes more complicated (at least to me) because the major cancer center and the local cancer center are actually both "local".

Thanks in advance for any help.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Coordination between oncologists - how to proceed?

Postby hiker » Mon Mar 11, 2019 12:05 pm

Hey zephyr,

This setup happens all the time. I did the same thing when my MSK oncologist wanted me to get 3 chemo treatments prior to liver surgery. Dr. Kemeny encouraged it, there was no pushback whatsoever. And you won't have to do any convincing to get the local oncologist to do the treatments - they're still making a bunch of money.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

zephyr
Posts: 246
Joined: Thu Aug 18, 2016 7:31 am

Re: Coordination between oncologists - how to proceed?

Postby zephyr » Mon Mar 11, 2019 1:44 pm

Thanks hiker. I picked up my CT scan about an hour ago and, unfortunately, the worst happened. I have an appointment with my regular oncologist tomorrow and the 2nd oncologist next week.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

WarriorSpouse
Posts: 200
Joined: Tue Aug 16, 2016 9:02 pm

Re: Coordination between oncologists - how to proceed?

Postby WarriorSpouse » Mon Mar 11, 2019 2:28 pm

I am sorry to read your most recent post. My wife has received her infusion treatments at a local hospital and Dana Farber in Boston, MA has provided the plan of action. The two oncologists work collaboratively and communicate through written correspondence in their findings and recommendations. They also talk over the telephone and come to a mutual agreement. As long as the treatment plan is a common practice and not a snake oil scheme, insurance will cover it all minus co-pays and deductibles. To many here, that is a fixed cost that we are all use to by now. I find that many of the Oncologists that we have visited all learn from each other and appreciate other's opinions and experiences. It works for us... Ask more questions if needed.

Best wishes going forward.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

User avatar
LPL
Posts: 650
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Coordination between oncologists - how to proceed?

Postby LPL » Mon Mar 11, 2019 3:57 pm

Zephyr. I’m sorry you did not get good news :(
I was thinking, regarding your doctors - you said:
“the major cancer center and the local cancer center are actually both "local".”. Maybe these doctors know each other and really want to help you if they can in this situation?
I do hope they will !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
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
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

rp1954
Posts: 1520
Joined: Mon Jun 13, 2011 1:13 am

Re: Coordination between oncologists - how to proceed?

Postby rp1954 » Mon Mar 11, 2019 5:28 pm

I interviewed varied oncologists, mostly once, and watch for more interesting, low tech research papers. Some of Dr Lin's mCRC patients with recurs, previously treated with several rounds of heavy chemo did much better on just ADAPT (celecoxib + Xeloda). With high potency, targeted supplements added, it is possible to both reduce the side effects and increase tumor inhibition. I am a big believer that our bodies with the right chemistry dialed up can dissolve and resorb objects, especially mm and 1-2+ cm. We did that. Even if we don't get them all, fewer is better, a change in chemistry may attack others. Even if not enough to completely stop things, longer and slower growth/spread is better. If not, then we can drill fewer spots.

During "low tide", we focused on off-label treatments, on keeping the blood numbers optimal in most categories to reduce inflammatory situations and cytokines that fuel and signal recurs. And it's relatively cheap, less pain, and time consuming to dial it up. I know you've done some supportive treatments, but that's not the same as daily at high potency, covering more targets. Even little a blood data like CEA, CA199, hsCRP, LDH helps too, although we use more.

The thing I don't agree with is periods of waiting (investigation or treatment resolution) and/or no chemistry at all.
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 to almost nothing mid 2018, mostly IV C

NHMike
Posts: 2209
Joined: Fri Jul 21, 2017 3:43 am

Re: Coordination between oncologists - how to proceed?

Postby NHMike » Mon Mar 11, 2019 6:50 pm

I started with a local oncologist and radiation guy and got second opinions from Dana Farber in Boston (an hour away). Dana Farber's recommendations were the same as the local doctors so we just went with the local doctors and the doctors didn't have any interactions. After treatment, I decided to go with Dana Farber for surveillance because my surgeon was next door at Brigham and Women's. I didn't know what I'd do if they disagreed on treatment but I imagine that things would have worked out.

I'm an not up on what your complication is but I do hope things go well with your two teams.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

zephyr
Posts: 246
Joined: Thu Aug 18, 2016 7:31 am

Re: Coordination between oncologists - how to proceed?

Postby zephyr » Mon Mar 11, 2019 8:21 pm

Thank you for your replies. As you can imagine, my head is spinning and I appreciate the guidance and support ... I started to write "more than you can imagine" but that's silly because I know you can imagine how much it means. I'm struggling a little at the moment, mainly for my husband, but I'm ok. Being off chemo for several months has given me the time to recover, mentally and physically. Having 11 "inoperable" nodules/mets removed in Germany bought me time. I can do this. Thank you all for responding - it really put my mind at ease.

For anyone who is considering going to Germany for the lung surgery, let me be clear: if I had it to do all over again, even if I knew then what I know now, I wouldn't change a thing. Not. A. Thing. Germany bought me valuable time and it gave me months of really quality time with my husband. It was worth every penny. Every. Penny. I may go back.

I haven't given up. As the song goes, I still have a lot of fight left in me.

rp1954: if you don't mind, I may be in touch via PM. I have been a member of Life Extensions for over 10 years, off and on.

Thanks again, everyone.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Coordination between oncologists - how to proceed?

Postby lakeswim » Fri Mar 22, 2019 3:00 pm

I’m so sorry to hear this news.....

I have the same question as I have elected W&W but trying to determine the logistics as I am not close to the major cancer center. It is quite complicated in my mind and it concerns me.
50 - F - Mom
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W


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