Do you want your oncologist to be honest? - Lung Cancer Support

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Do you want your oncologist to be honest?

celltelluser profile image
24 Replies

I was dx in Dec. 2013 with stage IV NSCLC.  I was told after a VATS surgery that I was inoperable but if I had a gene mutation I could take an oral targeted therapy that would give me more time.

My first oncologist was a very upbeat, cheerleader type, always giving a thumbs up and rushing me through appointments if I ask for more information.  I got a second opinion and transferred my care to a doctor that does research, only treats LC, teaches and brings a lot of trials into the cancer center that he is affiliated with.  He is much more straight forward and doesn't sugar coat what he tells me.  I am also a recently licensed R.N., so I know my prognosis and keep up with new treatments.

My question for this group is would you rather not know too much or would you rather be reminded that the goal is time not cure?  

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24 Replies
Laura4 profile image
Laura4

My family doesn't like my current oncologist because she does state the truth. I prefer it though. The honesty is what I appreciate. I feel we really need to know what we are in for to plan and help us deal with the reality of where we are.

bpettigrue profile image
bpettigrue in reply to Laura4

Hello, I feel we already know what the doctors feel the reality is of course it's good to know information but I choose to hear only the positive because there is no point and listening to a bunch of negative stuff because that's just wasted energy if it's something that you absolutely need to know of course you want the doctor to tell you but I always say only God knows when I'm leaving this Earth so while I'm here I want to keep it positive and try all the things that they have to offer.

Wardth profile image
Wardth

I would rather know the truth, my onocaligst is very straitforward , a diagnosis of cancer is a life changing event. Not only for the one that has cancer but for the entire family. I am sure not everyone will agree but in my case I want to know. My lung cancer was found by accident , no symptoms, had a ct scan for a minor nagging cough, that is how it was found. Ct scan and blood work in July , I have to plan for the worst and pray for the best. I know what I am up against, my  radioligst explained the success rate of the sbrt procedure I had done and was very honest about it .i respect her answers. So my answer is yes I want to know. Wardth.

Ruthie1950 profile image
Ruthie1950 in reply to Wardth

I totally agree with you.  Only the truth!!!

611935 profile image
611935

I would like to know, things I need to do but I know that some personalities would fold up,stay in bed welcoming extra attention until the end. 

611935 profile image
611935

 Time if no cure.

Katybeth profile image
Katybeth

I run from doctors that sugar things.  I want (and have) an oncologist that takes his times, explains things, looks for alternative treatments (I won't do chemo) and is totally honest with me.  I respect honesty.  Don't try to BS me.

AMR3 profile image
AMR3 in reply to Katybeth

Why won't you do chemo, if you don't mind me asking? I'm faced with making this decision right now and I'm agonizing over it. I'm stage 2B and my tumor has been removed it was very large 9.5 cm. All of the research my oncologist has given me puts me in an very low percentage category of survival with chemo 5%, but the overall 5 yr survival rate is low at 36%. She has not given me an answer if there is any other options for treatment.

anrean profile image
anrean in reply to AMR3

I have personally decided against chemo because I've already done it for 2 breast cancers and do not want to spend the time I have left being sick from it. I am also different from you - I have 3 larger tumors (we have killed one with rads) and also have 10 critters that are growing. For me, the chemo won't buy enough time so my focus is on quality over quantity. If things weren't so "bad" I might very well have a different feeling. Chemo saved my life in the past, but this time it won't make a significant change in the outcome. The game plan for me is to continue using rads, which also makes me sick (I had liver ca and my liver doesn't like rads.) This is my 5th primary ca, and as of last week the tumor on my vocal chord "doesn't look good" - even I could see the difference in the video from 3 months ago and last week's video.

Keep in mind that once you do make the decision to do chemo, it is not written in stone that you must continue; if you find it makes you too sick, you DO have the option to stop!

Esthersm profile image
Esthersm in reply to AMR3

Have you sent your tumor for genectic testing?see what is your abnormal genes. There is a lot of targeted & immunology therapies for treatments . Esther

bpettigrue profile image
bpettigrue

Honestly, I fine it easier to email my doctor with my question because he is the chief of staff he is pretty straightforward but I don't like to see people's expression or hear the tone in my voice. My thing is this only God knows when it's time for me to go all I want to know is the good news I don't want to focus on any negativity because it's only wasted energy and gives you more to sit there and think about as long as your doctor has a plan and you know what that plan is and agree I don't think we need to know every single detail.

Ruthie1950 profile image
Ruthie1950

I want a Doctor who will tell you the total diagnosis.  I don't want anything sugar coated because it is not what I want to hear. I want the truth, good or bad!!!  Don't hold back, I want to know. 

gibdonnalee profile image
gibdonnaleeCommunity Superhero

Yes, I also feel that honesty is best. Why wait till it is all thrown at you all at once.

Mary43 profile image
Mary43

I want the truth !!!  No sugar coating for me .....😊

lakesregion profile image
lakesregion

Truth only, who would want anything else.

Judylmac profile image
Judylmac

It is very important to know what your body is dealing with.  I see no reason to have a doctor who evades the facts of what happens when one develops lung cancer.  Knowing facts can give one a better chance of survival thru reading, diet, exercise and mental attitude.  We all know, or should, attitude has much to do with recovery.  Recovery means remission , as a rule, because most times the big "C" will show up once again.  Love the days you have, thank God for life, make a bucket list of things to do and act on them.  My first  item was to learn to use an iPhone.  Did it.  I have a long list and I keep marking off items on my lists then adding more.  It really helps.  Keep your friends and family close and, even though there will be times you would rather not discuss a current  change in your health, find a way to tell your family and friends. The  more you talk about your condition the more at ease you will be with yourself. Pray...it works!

rlccnor profile image
rlccnor

I always want the truth, I know I'm dealing with life extension, not a cure.

Luvly2457 profile image
Luvly2457

Yes I want to hear facts, Im a realist, I do far better with truth and facts! I cant work with fiction. I still cant get a straight answer out of my Doctor lol hes a great guy and savd my behind from the first sq cell ca in my left lung, then the renal cell in my right kidney and now the inoperable lul adenocarcinoma in my upper right lung currently. My current doc just says I am "stable" when I ask my status  or what my stage is currently, even though my tumor has grown twice its size over the last year and though I am on prednisone (steroids) i have lost about 40 lbs over about a year and a half without dieting.To me that doesnt sound stable, that sounds like cancer creeping up on me again ( this is my 4th different form of cancer and Ive had chemo, radiation  and surgery, I may be near the end of my treatment rope if I in fact have active cancer again once it lights up the Pet scan at 2.5 suv or higher. Its not there yet, thank God the TOMOtherapy radiation I got for Christmas of 2013 is still keeping the cancer invasion at bay for now at least from spreading past my remaining lung this time. So yes honesty is best for me but I dont feel Im getting it for (their) fear of upsetting me and having no more tricks in their bag to help me. I can cope with it if I have answers, at least so I think, but then again, maybe they know best and have seen a different reaction from people like me than I expect, maybe I am not so tough after all and might lose my ability to fight this out of fear of defeat in the long run if I was told there may not be any more majic tricks in the cancer fighting bag and that I was now on my own , just me and time and my adenocarcinoma of the lung? 

anrean profile image
anrean in reply to Luvly2457

I want total honesty to the point that I went for a second opinion. I ended up having a total melt down (extremely unlike me) with the pulmonologist because I had told the first specialist that "You can't scare me. I want to know everything" and she lied anyway. The pulmonologist sent me back to the original ca facility but with a doctor of his choosing. No sugar coating - there are 3 larger tumors (we have killed one with rads) and 10 little critters that are significant because they are growing. Knowing the whole truth, I've come to terms with everything and have purposefully made decisions that would have been different and less care-taking of my desires. For example, in Sept. friends and I are going to the National Aquarium - something that has been on my bucket list for years! I am also learning to ask for help instead of putting things off.

For me total honesty is the only way to go.

Twotimesurvivor profile image
Twotimesurvivor

I want the truth no sugar coating anything

rlccnor profile image
rlccnor

I believe in total honesty. let's face it, they can be wrong.

Miracles happen everyday! Keep the faith!

yes I would want my dr. to be honest with me. so I know what time I have left. so I can have the chanceto do things i've always wanted to do. but he would have to let me know what things I could do.

anrean profile image
anrean

I want total honesty. This is my 5th primary ca, and I want to know everything so I can make informed decisions. My first specialist lied to me, even though I told her "You can't scare me." Had a bad feeling that she was not telling me everything so went for a 2nd opinion and sure enough, she had left out significant info. I ended up having a total melt down (very unlike me) in the pulmonologist's office because she lied. He sent me back to the original ca facility, but to a specialist of his choosing. Now that I know the truth, I am making decisions that are more focused on what I want instead of just going along. My bucket list has become more important and I am more conscious of doing some of the things on it instead of saying I will do it some day. I'm learning how to ask for help. I know what I am facing and am making sure that with the time left, I will be taken care of properly instead of having to make hasty decisions. And yes, I have become a little more selfish. My friends have been wonderful, and although I don't share every detail, they are very supportive and helpful.

Sugar coating things would have robbed me of time and doing some of the things I want to do!

lespa profile image
lespa

I would want the truth. One doctor told me it had spread to my rib cage,(WHICH WAS NOT TRUE!) This doctor lost her certification! Look up all of your physician credentials (A MUST!)

My thoracic surgeon operated on me on Wed Sept 19th 2015, then I went home on the 19th Of September and was back at work a week and a half later! Dr. Matthew Van Deusen is a Godsend to me! He is out of Pittsburgh

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