Do patients want their oncologist to be a cheerleader? - 1249708

Hi Dr. West,

When my mother was dx with ex-sclc last June the oncologist was clear that no cure was possible. However her rapid improvement after starting chemo along with the physician assistant's optimistic attitude gave us all something of a false hope. So when she went for her review after the four rounds of chemo (last October) we were floored when the oncologist said that there were few options remaining. While the cancer had shrunk "significantly" it had stopped shrinking. He gave her the option of a 5th and 6th round of chemo but made clear it would most likely not be beneficial. Her condition went down hill rapidly after Christmas 2011 and she passed away in February 2012 due to a fast grown brain metastasize.

I think a good oncologist is honest but sensitive to the individual patient's needs and feelings. Mom's oncologist did a good job doing that. His pa, however, did not (imo). She was too much of a cheerleader. There is nothing wrong with being a cheerleader but there is the danger of appearing too optimistic.

Just my two cents.
Keep up the great work here on cancergrace.
Jeff.

That's a tough one. It's a fine line to draw with out distroying hope. I believe all stage 4 patients should understand that their cancer is uncurable but may be controlled to add months if not years to their life's. Some will survive for many years. That's where hope comes in. Every body responds to chemo in it's own way, no one size fits all. So I guess I fall in the cheerleader side with realisim thrown in. Don't take away HOPE.

Andy

I want absolute honesty, but not necessarily when my family is in the room. I prefer to temper things with them a bit. Let them hold on to whatever hope gets them through. I want to know what the situation is. I have stuff to take care of, a bucket list of sorts, and if I need to ramp it up and get it done, I want to know. But it takes a while for the truth to sink in. I think maybe I am not "getting it" right now, since my last scan.

I think my onc is indulging me right now. I know he will start chemo whenever I say I'm ready, but he really doesn't see much point right now, and wants to spare me the side effects. He has made it very clear that chemo will not be curative. I get that... but it will buy some time, right?... it will hold off symptoms? I may be kidding myself. I guess I need to ask him outright. And I will want him to be as blunt as he needs to be to get the point across.

I don't think I represent most patients.

Debra

Great question, Dr. West.

I bet you'll get all sorts of different replies.

I want my husband's oncologist to be honest. I also want him to listen to our concerns and answer questions to the best of his ability. "I don't know; I'll find out," is fine. I don't want my husband treated like a statistic, and I don't want to be treated as irrelevant.

The cheerleading can be honest celebrating of a good scan. I want a doctor who will try his best for a cure, and believes that my husband very well could be in the five percent (unsolicited stat). I don't want my husband treated as if he were the walking dead, but treated as a partner fighting a devastating disease.

Honesty with empathy.

Holly

I want honesty and feel like I get it. I knew from day one where we were headed with stage IV so what I want from Tony's doctor is to send us on the best possible path that will hold it at bay (stable) for as long as possible. It's bargaining on our part; we know there is not a cure but we will take what we can get. I want a doctor who will talk to us; one that doesn't have one foot in the room and one foot out of the room. An oncologist should have a certain level of compassion due to the nature of the job. I don't expect a cheerleader; I do expect him to be straight forward about what Tony is putting in his body. We've said from day one that our goal is to be stable long enough for the next "latest, greatest" drug to gain FDA approval. None of us know if we will live to see tomorrow, or five months or five years - cancer or not! I want a doc that is in the moment and is concerned about our needs for today; give us a plan with short term goals. I don't want or need false hope. I want honesty...but not pessimism. Answer me honestly with facts,statistics or past experiences but don't be so blunt and say everyone with lung cancer will eventually die from it. Give me a chance to endure treatment; give me a chance to fight. After all, there are some patients out there that defy the odds and live a lot longer than expected. All I ask of my doctor is to lead me to the tools that will assist me in my fight.

I want the complete and unvarnished truth from my oncologist phrased in the most blunt and direct way. I don't want to have to cut through any sugar coating, and I don't want to try to parse oddly mixed messages. Just tell me what I have left to work with in terms of time and energy.

I often have twisted my doctors' arms to get them to give me my prognosis. I understand that it constitutes their best guess, not a certain prediction. I can see their fear of giving me bad news, so I try to make it as easy for them as possible. I really don't want any of my doctors to try to manipulate my emotions so that I remain in some sort of ideal-by-their-standards balance of "hope" and "realism."

I am flummoxed when I read that some oncologists will give chemo to patients who are highly unlikely to benefit from it just so that the patient can remain "hopeful." That's a mighty expensive (in all senses of the word) delusion to sustain. It's hard enough to cope with massive uncertainty about life and death matters. I don't want my doctors to stir in confusion by saying things they don't really believe. I depend on them for solid information, not to cheer me up with falsehoods or teeny tiny odds of things going better than they expect. I try to remain open to whatever happens, whether it seems good or not. I want to look my illness straight in the eye and not use my energy making myself believe it'll all go away.

I have been told that I am an unusual patient in this respect, and, indeed, it is my sense that most patients prefer to focus on any possibility of improvement and exclude information to the contrary. No right or wrong; I think it's just a matter of temperament.

I wouldn't want a prognosis as in timeline unless I asked for it. This is what I told my onc at our first meeting. I think we're a more informed group of patients than a typical cancer patient. Of course, we've been there and done that already! I like the honest and sensitive to the individual and support but no cheerleading. And never lead off with, I'm sorry I have bad news........
Take care, Judy

I was one who asked all three oncologists I had original opinions from about a survival timeline. They answered truthfully but said things vary from person to person which I certainly have learned is true. I also heard treatable but not curable and I accepted that.

Sometimes it's difficult to talk to other LC patients who seem to have such optimistic pictures of their disease; something that doesn't turn out to be true. One person told me she probably would have given up early on if she didn't have that hope of a cure. I however would have been thoroughly irritated if someone gave me false hope! Just points out we're all different. I don't envy the fine line oncologists need to straddle.

I am not surprised by the report, and in my humble opinion, it may perhaps be something positive. I can think of 3 reasons behind this phenomenon. (1) The Prizing of Hope: People are always being encouraged not to lose hope in anything in life. Hope is very much part of the "best paliative care" and could be of some value in enhancing quality of life ending experience. (2) The Not So Clear Line of Differentiation between a a non curable and the curable stage (in the eyes of general patients): Unlike medical professionals who are trained to decide precisely between recommending curative or paliative treatments, the public would generally hold simplier view of all cancers as being life threatening with different degree of survival chances based on several factors and the stage of the disease is just one, albeit the major one, of several. (3) The Commercial Factor: As what has been often highlighted in this forum that commercial motive could often be the reason behind some unnecessary or unproven treatment or investigative procedures, some doctors may just willingly recommend more actions that are of arguable value.
NJ

With my first oncologist, we were in shock after my Stage IV diagnosis. I can remember her saying words like 'treatable' yet 'incurable', but we weren't hearing her. We thought chemotherapy was a path to a cure. She uttered words we had never heard before, like 'palliative',without really explaining that it just meant pain relief (and I'm an English teacher with a substantial vocabulary). At first I wouldn't look up 'Stage IV lung cancer' on the Internet, but once I did, I started to get the picture. However, my husband wouldn't accept the prognosis (he still won't); he couldn't (still can't) understand why they wouldn't do Cyberknife on my lung tumors (because I had multiple mets elsewhere- spine, pancreas, etc). He kept asking-three major research hospitals turned us down for Cyberknife- they all recommended staying with chemo, recognizing the systemic nature of my disease.
However, the second oncologist had a more optimistic approach, suggesting looking for clinical trials. I can remember him saying "treatable' but never 'incurable'. Then he helped me find my current clinical trial. When I mentioned the trial doctor's name to my other doctors, they all said something like, "Oh yes, Dr. X, he's so optimistic". Dr.X never says 'treatable' or 'incurable'. He says to get my cholesterol down, because I am going to live a long time. He is definitely a cheerleader. But he has something to cheer about (anti-PD-1). If he didn't, I wouldn't want false hopes.
So my response to your question, Dr. West, is each person is different. I want the truth. I'm the patient. I don't want more chemotherapy if it's only going to give me a couple of months. I want to get my affairs in order, as painful as that sounds. But my husband, on the other hand, prefers hope, no matter how slim. Even today, he told me I'm cured, when I know it's WAY too early to say such a thing (I've only been in the trial six months). And he still wants to know why I can't get Cyberknife.

Neither my husband or I asked about a timeline when he was diagnosed, the radiation oncologist and the medical oncologist were both frank and honest with both of us. Both physicians were pretty amazed when he made the 1 year mark, and then the 2 year mark! So from that we knew that he' beaten the odds. Both men were caring and comforting also and I am so totally impressed with physicians and nurses that choose this profession as it has to be so emotionally draining, and yes at times very rewarding. My husband's Drs. and nurses were able to give excellent care and at the same time show compassion while being totally honest. I know my husband appreciated it as did I.

Very difficult for me. On the day we saw the oncologist for the first time, he said "maybe even curable". I built my "new life" around that. I truly believe we were going to make it. After the first CT, a few weeks later, Alimta had made an impact and there was shrinkage. Then I started researching because I was now more sure than ever that we would make it. The research didnt bode well....I began to see the picture....I saw for the first time the possiblility that we might not make it and it depressed me so bad. Hubby and I never spoke about that....and I wonder if he picked that up, too, on the internet (im sure he did). I just cannot have that conversation with him!! I cannot!! I cant find peace!! I spend my time searching for all the cures to the side effects of his treatment...thats how I get through this. Our oncologist is very vague....Im usually angry after a discussion with him because I had prepared myself to ask him a few thngs upfront but I never really muster that guts when I note that he is evasive. Yes, perhaps I would like to hear the naked truth. But what do I do after that? I dont want hubby to lose hope, and neither do I want to lose hope. True, I dont want false hope and I dont want to carry on with the treatment if its going to interfere with qualilty of life. Sounds confusing, hey? But thats what it is.

Most of the things that happened in my life, I could control. The worst part of this disease it that you have NO control. You can do all the right things and still lose the batlle. Thats the frustrating part

Delialolly,

You need to bring a list of questions you have when you and your husband see the oncologist. And you can even take notes when he answers the questions.

You broke my heart when you said that you feel you have NO control. I myself am a control freak so I see where you are coming from.. I read everything I could, I checked all the major hospital's websites that are known for cancer treatment, I discovered that our little hospital in central Iowa was doing everything for my husband that the major institutions recommended. So my advise to you is this, keep reading, keep educating yourself. My husband who was a computer addict lost interest after his diagnosis, and he was the one in our marriage who was the pillar of strength. I when the oncologist filled out my FMLA paperwork he wrote Mike's diagnosis, and estimated the length of his illness as 6 months to 1 year! I did not tell my husband as he'd never questioned "how much time do I have left" at the initial consult. So I kept it to myself, kind of like I thought I was protecting him. I assured him that we were going to fight with all we have, and his precious radiation oncologist, a man well into his 70's, who moved here from China in the 1960's, told my husband, "We fight the good fight". So that was our motto....I only found out that Mike had asked the Dr. "how much time", when I was not at one of his first radiation treatments. He was told 4 months to 1 year. Well, my dear husband was protecting me too, as he didn't tell me that until about 3 months ago. Mike was protecting me too! So yes, there may be lots of things unsaid but it's you and him protecting each other. Mike was strong and stoic all the way to the end, me, I started to fall apart the last several months. We began to discuss the prognosis in the last several months and I was the strong one, I just grabbed all the strength I could muster and when he would ask about bills, or anything that was stressing me out, I just told

cont.
him that everything was fine. I found some inner peace, and got myself back into control and decided that we were not going to waste time on anything stressful. It was him and me, and as much as it was emotionally painful, I was again in control. And it remained that way till the very end.
I realize this isn't the correct forum to put this in, but I wanted to answer you. You and your husband are always in control, even though it seems the cancer is. My husband fought a battle that he knew he would not win, and I was his cheerleader. We even used chemo days as date day...you can grab this and take control.
Also, women tend to want to discuss every thing, men don't seem to care to do that. Just know that the normal non verbal communication between a husband and a wife is still the same as it was pre-cancer.
Just know, what ever you do or your husband does, it's right, because it's what you do or how you react. Don't question yourself, don't beat yourself up. You both have the right answers. My husband outlived all of the Drs. expectations, and he and I both decided we'd both make the same choices that we had in the very beginning.
Good thoughts and many prayers to you both!!!
Don't lose hope, as there is always hope!

Great question, Dr. West. When mom was first diagnosed in September of 2011, it was difficult to take it all in. We got conflicting opinions, one doc told us to pray and not do chemo (he was a relative and a lung doctor) as it was Stage 4 and there was no point in making her suffer more. We derived hope from this forum where we learned that a diagnosis is not an immediate death sentence and that helped us a great deal with the coping. City of Hope told us to try a doublet and the doc from there was very encouraging, mom's doctor was extremely encouraging as well, from the get go she told us the aim was to keep mom comfortable and symptomless and to prolong life, no talk of a cure. Mom was not told it was Stage 4, she still does not know and I believe that it is this ignorance that has kept her going, she has survived the stroke, made great rebounds in speech, walking, etc and undertaken chemo cheerfully believing she will be alright. Absent that hope, she would have given up long ago.
So, to answer your question, does the doctor need to be a cheerleader, no, not necessarily but they do need to extend hope to the patient as well. Death is inevitable but to dwell on that to the exclusion of hope would make living less meaningful to all of us, patient or not. Human beings are not God, even doctors are not, though they come very close, cures can happen miraculously, no body is the same as another so facts laced with hope is what I would want from a doctor.

Yes. . .I think they do need to be cheerleaders to the extent possible without fudging the realities of what is happening.

There usually is a positive way to present new developments (even bad ones), and my Mom's Onc. is absolutely brilliant at it. I have praised her privately (and outside of my Mom's earshot) about this. . .and the humble woman that she is, she tells me that it's her "training." But, I don't think so. I think her training has something to do with it, but she is just very good at reading her patients and recognizing how she needs to communicate with them. I think some people require bluntness - - while others can't handle truths just handed to them on a platter. Dr. R. seems to know who needs what. . .

Some truths as I see it:

(1) The doctors cannot know for sure how long any particular stg IV cancer patient can live.

(2) As long as the disease is stable, life goes on.

(3) The doctors cannot know for sure how long stability can be sustained with any particular patient, which brings us back to (1).

(4) We must all die. With or without cancer.

With the above in mind, I sometimes find it presumptuous and dogmatic when heathcare professionals tell us things they cannot possibly know with certainty, like 'time left'.

Another of my pet peeve is the use of the expressions 'treatable' and 'curable' (sorry, I know we use it here all the time). What does it matter if my disease stays 'treatable' for X years, and if I could have a 'cure', I would live Y years, and X and Y are, broadly, comparable (which is a subjective issue)?

So yes, I want a cheerleader but only because there is very little directly applicable honesty to dispense. I also recognise that a cheerleader, by definition, only cheers me on; he or she is not a fairy godmother who can grant wishes.

Thanks Tammy. Please see my 'Bone pain since starting tarceva'