Are your oncologists like politicians, too?

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jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Are your oncologists like politicians, too?

Postby jhocno197 » Wed May 27, 2015 2:19 pm

My husband's oncologist is not very straightforward with his answers. If asked a question, he might use several words, but no actual answer to your question emerges. I'm wondering if this is standard operating procedure?
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Are your oncologists like politicians, too?

Postby BrownBagger » Wed May 27, 2015 2:25 pm

In my experience,they try to keep it as general as possible, unless you ask a specific question, at which point you may or may not get a straight answer.

I think that most oncs are so deep into the technical end of the business that they don't really know how to translate most of it into terms that the rest of us can understand and appreciate. Plus, with such an unpredictable disease, who wants to get pinned down? Nobody, that's who.

I've given up trying to figure out what these people are up to. I trust in their judgment and do what I'm told, and after 6 years with a Stage 4 dx, I'm still doing well. For me, that's what counts.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Carolinabluetec
Posts: 415
Joined: Wed May 28, 2014 11:52 am
Location: Greenville, SC

Re: Are your oncologists like politicians, too?

Postby Carolinabluetec » Wed May 27, 2015 3:23 pm

Mine is actually pretty good. I ask him a question and he gives me answer which many times is his best guess.
03/14 DX Adenocarcinoma Sigmoid Polyp
05/14 Da Vinci Sigmoid Colectomy
06/14 T3N0Mx, staged IIa
07/14 Xeloda 3000 mg/day 14 on/7 off 8 rounds
12/14 Finished Chemo
01/15 CT NED :D
07/15 Colonoscopy NED :D
08/15 CT NED :D
03/16 CT NED 8)

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Are your oncologists like politicians, too?

Postby juliej » Wed May 27, 2015 4:02 pm

I've learned the more educated I am about the disease and treatment and the more I can ask complex intelligent questions, the better the answers. In other words, I think BB is right. They are used to dealing with medical specialists and don't know how to translate medical vagaries into everyday language.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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chemo sabe
Posts: 444
Joined: Fri Mar 09, 2012 9:01 pm

Re: Are your oncologists like politicians, too?

Postby chemo sabe » Wed May 27, 2015 7:00 pm

Oncs have good hours but it is a suck job. So yes, IMHO they are somewhat like politicians. I dropped my first one following my resection surgery because he would not talk to me at all. My current Doc is good but then again, he has not had to give me bad news yet either.
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

Laurettas
Posts: 1606
Joined: Tue Jun 21, 2011 9:49 pm

Re: Are your oncologists like politicians, too?

Postby Laurettas » Wed May 27, 2015 7:21 pm

My husband's oncologists reminded me of car salesmen--mentioning the problems initially and vaguely while immediately focusing on all the wonderful attributes. Didn't matter that the engine was junk and the transmission gone, the car had really good tires! I found that the local oncs were either intimidated or irritated by the knowledge that we had while the specialist appreciated it and was very good at explaining things. However, even the specialist was quite vague about explaining the bottom line value of treatment vs no treatment at the end. I learned that one must ask VERY specific questions and not settle for vague answers if you really want to know what is going on. For example, when trying to discern whether or not to proceed with treatment of my husband's brain tumor, initially when we asked what the prognosis was with treatment, the answer was that they could double his life expectancy. We then had to ask what his life expectancy was to which they replied that it was one to two months. So, they could double his life expectancy from one to two months to 2-4 months. The vague reply of doubling life expectancy sounded kind of good because one automatically thinks of several months or years of extension. One or two months of extension, however, totally changed his desire to pursue treatment.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: Are your oncologists like politicians, too?

Postby jjlist » Wed May 27, 2015 8:13 pm

When the efficacy of chemo is far less than 100%. They are trying to convince you to do soemthing that may or may not work. And even when it does , the probably will be a price for it. Is it any wonder they don't look? Their job is to save lives. Not to become emotionally invested. Cancer treatment is a messy business , born from a horrifc statistically incurable disease.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

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BrownBagger
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Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Are your oncologists like politicians, too?

Postby BrownBagger » Wed May 27, 2015 9:27 pm

jjlist wrote:Their job is to save lives. Not to become emotionally invested.


tru.dat
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Are your oncologists like politicians, too?

Postby PainInTheAss » Wed May 27, 2015 10:55 pm

My onc just seems like a doctor to me, really. I realize that the more patients he can see, the more lives he can save so I don't mind a quick visit if that's all I need. But if I have questions, he always answers them directly and seems to know every statistic under the sun by heart. He'll spend whatever time I need to answer all my questions and often does in great detail. He even pulled out a chart to show me stats I was asking about at one point. He does seem to provide answers framed in the most hopeful positivity, but I appreciate that. I don't feel I'm being intentionally misled, but I'd dread appointments if he were pessimistic. All I know is that I wouldn't want his job.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Are your oncologists like politicians, too?

Postby JudeD59 » Wed May 27, 2015 11:14 pm

When I have a side effect and I ask my oncologist about it, he sometimes says, "That's probably from the radiation." So I ask my radiation oncologist about it and he says, "That's from the chemo."

So yeah, in that way, they remind me of politicians. Always blame the other side when things aren't going well.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Val*pal
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Are your oncologists like politicians, too?

Postby Val*pal » Thu May 28, 2015 8:11 am

In my opinion, based on three years of dealing with oncologists, it is almost impossible to get a straight answer from them.

However, I kind of understand why they are not straight forward. One reason is that it is impossible to predict how any one patient is going to respond to surgery and subsequent treatment. Another reason is that most oncologists are humane enough to not want to take away hope, that elusive but very necessary ingredient making life worth living. Sadly, an additional reason is that doctors do not know how to handle terminal or possibly terminal patients. They have not had adequate training to do this.

My husband's first oncologist (who left Michigan for sunnier weather in CA), was shockingly to the point. When Danny and I met him for the first time, I don't think he realized that we had not been given any info as to the cancer staging. Danny had almost died following his colon resection, had been hospitalized for 7.5 weeks, and was still somewhat weak and down for the count when we met. During Danny's lengthy hospitalization, the focus was on his survival; cancer prognosis was not top of mind. So when we met with this first oncologist, he cut to the chase. He informed us that Danny was Stage IV (based on much lymph node involvement and some evidence of cancer cells within the fatty abdominal wall) and though no mets were seen in liver or elsewhere at that point, he knew that based on the fact that the tumor had eaten through the colon wall that there were cancer cells afloat within the abdomen. He told us that it would show up either in the liver or in the peritoneum, and that he predicted that Danny had about 2.5 years. I immediately broke down crying and the oncologist suddenly seemed to realize that this was news to us and though he didn't back pedal on what he'd said, he immediately focused on what could be done - chemo.

I now realize this doc should have started the first consultation by simply asking us to explain what we knew about the situation. That would have easily given him the orientation he needed.

When Danny was assigned a new oncologist after the initial one left, we found the second one to be much less in-your-face. As time went on, I realized that she was always honest, but phrased bad news in ways that were not shocking; however, if pondered, these phrases revealed the reality. For example, I remember her saying repeatedly that chemo was not a cure but would slow progression. Danny never asked specifically what that meant, but I came to realize that he was at the mercy of the chemicals slowing the growth. If it didn't work, then . . . there were no alternatives. Later, she informed us that Danny was on chemo for life, and I understood what that meant as well. Since Danny never asked about prognosis, I don't know if these words really sank in. I do know that he seemed to continue to believe (despite the doctor's repeated message) that the chemo could cure him.

In the end, when the doctor finally acknowledged that the chemo was no longer effective and doing more harm than good, I sensed her distancing herself from Danny. She spent less time with him and let the PA do most of the talking. Danny later told me that he felt she had washed her hands of him. It was painful for both me and Danny.

All I can say is that oncologists really need to be trained thoroughly on end of life consultations. I don't believe Danny's oncologist was an uncaring person; instead, I think she tried to handle it as best she could but that the emotions were overwhelming for her as they were for us. Handling this badly just made the whole situation sadder.

I do know one thing. I never forgot what that first oncologist told us. Though it had been shocking news to me, it left no room for doubt. It helped me frame the next two years in a realistic way and helped me interpret the less blunt words the second onc used. Danny died 30 months after that first consultation.

I simply don't know what is the best way to deal with cancer patients. Though I appreciated the honesty as a caregiver so that I could prepare for what to come, I don't know if I'd want the whole truth if I were the patient. There always has to be room for hope or life becomes too burdensome. And - as the many stories from this board reveal - some Stage IV people live on and on and do very well, so it's impossible to know what is in store. My Danny just happened to fall within the statistics of what is most likely to happen, but not all cancer patients do.

I suspect that most oncologists will be very honest if pressed, but most patients and caregivers are too afraid to press for specifics. I know I was.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Are your oncologists like politicians, too?

Postby skypup » Thu May 28, 2015 9:45 am

I've had to reframe my view of my oncologist's job. I went into this thinking that he (my first) was actually thinking about my case. I felt he cared about me in a human sense, but after a while I realized that lasted only as long as the appointment did. No doctor of mine (and I've had three main ones now) has been less than caring in that sense, but I now know that not more than five minutes is spent thinking about me or my case outside of that consult time. In many ways they just aren't prepared for many of my questions and so just shuffle them off unless I really keep questioning. A sad truth, in my opinion anyway, is that the only way to get facts, consider options, make sure treatment is tailored to all my issues, etc., is to be my own physician and consider the oncologist to be a necessary (and powerful) tool in my toolkit. Once I accepted this, I was much less disappointed in their behavior and responses. It ticks me off, though, that I am always on a learning curve in how to take care of myself at the level I want.

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Are your oncologists like politicians, too?

Postby peanut_8 » Thu May 28, 2015 11:02 am

I'm about a year and a half into the process, and have found that with my oncologist the more I know about the disease and treatment options, the better I'm able to ask questions and get answers that are acceptable to me. Fortunately Dr. B will always take the time to listen, and answer questions to the best of his ability. I did have to dump the first one my surgeon referred me, to because of communication issues.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: Are your oncologists like politicians, too?

Postby jalusa » Thu May 28, 2015 11:10 am

I wonder how they do it. I have been told bad news a couple times and I wonder afterwards why anyone would do that job.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Are your oncologists like politicians, too?

Postby KWT » Thu May 28, 2015 11:35 am

jalusa wrote:I wonder how they do it. I have been told bad news a couple times and I wonder afterwards why anyone would do that job.


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