Looking for thoughts on receiving diagnosis

[kimblanchard]

Thank you all for your responses! I appreciate your insight into this tough topic.

Lisa and Fay, thanks for your honesty. As a rule I really try not to talk to family members without consent from the patient but as in this case there are times when I break that rule. I guess many times I have to follow my gut. In this particular case, it was fairly obvious that this gentlemen was turning to his family/children for directions. But in retrospect, I think you're right, I should have told them that I needed permission from the father. I will say this was a somewhat overbearing family, my exam room is fairly small and my nurse tried to ask them to bring back only 4 family members but they all walked right back through the office and crammed into the room, had to ask one to please allow me to sit at my own desk!

In cases like stage 3 lung cancer, I try to concentrate on the fact that it is potentially cureable and that will always be our goal while there is any chance. In stage 4 lung cancer, my explanation goes like this: I can offer treatments to control the cancer, sometimes even make the cancer go away for a while. The ability to take the cancer away forever is not within my power. I then tell them about my patient with metastatic disease in his spine who remains in complete remission now coming up on 4 years (true story). I tell them we hope for the best and plan for the worst so make sure everything you need to take care of for those you love is taken care of.

ELLAKC2, the difference between 3A and 3B lung cancer is in 3A lung cancer, the tumor itself is resectable but the lymph nodes in the center of the chest (mediastinum) are involved by the cancer. So even though the cancer can be removed by surgery alone, the success for cure is very low. Treatment of 3A is controversial but best results appear to be with chemotherapy or chemo and radiation followed by surgery. In 3B, either the tumor has advanced so far that surgery is not possible (invading/encasing a major blood vessel, trachea, etc) or the lymph nodes on the opposite side of the chest have been involved. Generally, 3B is treated with chemotherapy and radiation. If the cancer can be "downstaged" i.e. shrunk enough, in selected cases surgery can be attempted. That is VERY controversial and my belief is that for most patients with 3B their survival will be worse with surgery than without it. A special category of 3B is a patient with a malignant pleural effusion, i.e. cancer has spread to the lining of the lung and is causing fluid filled with cancer to surround the lung. In that case, it is treated more like stage 4 with chemo alone.

Back to the family thing, I still feel torn. Would you feel put off if the oncologist asked you to sign a consent at the first visit listing the people who he had permission to discuss the case with? Typically, if a spouse calls and asks questions (wants to know test results, etc) or a child who has come to office visits and I know is involved, I will talk to them. If its a family member I don't know or who has not been involved in their care, then I tell them I can't talk to them without permission from the patient. Most of the time, the situation is what Peggy described. At the visits, the patient and family want to hear only "positive" things...i.e. no talk about the fact that this is a terminal illness, etc. Then afterwards a spouse or child will ask me in private about how much time I really think they have, etc. It always makes me terribly uncomfortable but I know that sometimes its important for the patient to not allow "negative" thoughts in.

[kimblanchard]

LOL, Donna you saw Steve Duane? Wow, small world, he is one of my partners! Is he not one of the nicest human beings you have ever met?

[betplace]

I am one of those patients that believes knowledge is power. I knew my DX when I went to see the oncologist, I had the report in hand and I had already read about extensive stage sclc and knew the statistics. I did not know a time frame. I asked the oncologist and what he had to say was very frightening to me. I literally whimpered in fear. I didn't know that kind of sound could come from my mouth. But then after that he explained what we could do and how it would work and he left me feeling hopeful. I don't know that he would have told me if I hadn't asked. I think if the patient wants to know, tell them, then give them hope. If they don't ask, don't offer that info up. I have beat my initial time frame by 1 month now, so I am very happy these days.

Blessings

Betty

[Andrea]

Dr Joe,

I skimmed the responses quickly and I disagree and agree with some of the things. Here are my thoughts:

My mom is the one with cancer, there are a few things I sometimes want to know that I may not want to ask in front of my mom, ie statistics, etc, and I expect the oncologist and all doctors to answer me b/c my mom does not want to know and does not need to know. One way to resolve the issue is on your incoming patient form, ask the patient to check "Do I have permission to speak to anyone about your condition without your consent? Who?". Then yu will know how the patient feels.

I think it is im p ortant to be upfront and truthful. My mom's oncologist said he is not g-d, so he cannot tell her statistics, etc. He did tell her chemo can kill her and if she did not exercise every day and do as he says, he wo uld not treat her. His scare tactics worked

We saw the head of thoracic at a major LA hospital--he was confident and full of hope. His younger associate was also confident, he said to us that they don't make the patient sick with chemo if they don't think there is a chance. BUT he did give us the statistics up front. I liked both approaches, I dont think there is one way to necessarily do it.

[kimblanchard]

A lot of great points have been made that I don't need to make again, but I want to add a little about the one oncologist we didn't like throughout the process.

It was the middle of a crazy day in Houston; the oncologist had just returned from a conference and had about seven million people in line to be seen, so that he was over four hours late in getting to us. It was late enough that Becky went to see the internist/pulmonologist that she had a later appointment with. So I am in one office and she is in the other, and her dad is running the CT scans back and forth as needed basically. I know this could not have been this doctor's best day just from what I have written already.

But he basically told me that he didn't need to see Becky; he just needed the scans. And I guess that is probably true. But Becky was never just a collection of pictures of her tumor. She was a wife and a mother and a teacher. And we had only one goal for the cancer, and that was cure. We wanted the treatment that gave us the best chance of growing old together. And this guy talked about three years being a positive result. Three years meant Becky would never see our daughter in the first grade. How the hell is that a positive result?

So first of all, I think your judgment is very accurate about when to deal with family members. You are clearly sensitive enough to be right on the money. I can't imagine with Becky or Elaine or Snowflake in there, you having any trouble realizing they were completely in charge of what was going on.

But then the next thing I think is important is that you share the goals of the patient and the family. I don't know the line for IV's, but surely when a 30 year old woman is in there with a IIIA, she is not looking for three freaking years. This was a binary battle for us; either she was going to be a long-term survivor or she wasn't. And all talk of positive outcomes should have reflected that.

That being said, that was one doctor out of a dozen or so we saw over 15 months, and everyone else was the epitome of professionalism. So I never want to tell the story without including my overwhelming gratitude to the rest of the doctors, nurses, techs, who were completely professional and treated Becky so honorably.

Curtis

[kimmek]

Hi Joe

Thank you so much for being here for us, and I am so very glad to be of any help to you.

My mom's onc is a somewhat personal friend. Mom works at a private catholic school here and her children went to school there. First her husband who is a surgeon, performed Moms heart surgery 2 yrs ago, and when mom was asked if she had thought about who she was going to use for a onc, she immediatly said Ariel...I was like who is that?? But the doctor (her cardioligist, another "friend" from school) knew excatly who she was referring too, and immediatly put a call into her. Dr, Lee came to see mom that very evening in the hospital, having been about 60 miles away at the time of the call, she came almost imedialty. I was at home when she paid my mom her first visit, so I really have no idea what was said, but Mom did call me at home while she was there and put her on the phone with me, which I thought was pretty amazing.

At the time, not knowing alot about lung cancer, I really only wanted to know my mom wasnt dying that day. When she began explaining the plan of treatment to me i remember vividly her saying " It's definetly worth trying" and I still wonder today what exactly this means. The very next day mom was put thru almost every test known to man to see if this had spread, and to the best of the dr's knowledge it has not and treatment was started the very next day. Mom checked out of the hospital and we went directly across the street to start treatment.

We have never asked about numbers, and this drives my brother crazy, I know that you cannot predict how long someone can live, and mom is one of these patients who wants to know NOTHING expect when her next chemo is. I really dont think she even knows it is not curable (unles she was maybe told this by onc then day in hospital when i wasnt there) I have been to every appointment, treatment etc and nothing has ever been said. I am sure though were we to ask we would get an honest as can be answer from her.

So for now we go everyday with the though that this treatment is going to work. Mom was not a candidate for surgery due to her underlying COPD,and this I dont really understand because there is only one tumor and it is small 2cm by 3cm. I know there is no cure and many times I have told mom that this cancer recurs often in hopes of preparing her for the battles that could be ahead. I am optimistic but yet I have to have plan b,c,d etc ready if needed.

We have been very happy with all of moms doctors and both onc and rad have answered any and all questions, we have just never asked the how long question. I have also wondered if mom knowing her dr, would play a part in how/what is being told to her. I certainly dont want her treated any different.

I know I have rattled here and probably not answered your question, but I hope it helps..

Kim

[Ry]

Just a follow up on your question regarding the release to speak with the family. The nurse at our onoologist's office gave us one to list people information could be released to. This was done with the preliminary paperwork and went into John's file. We knew his sister might call from out of state so we listed her. We were not offended in fact, I appreciated the confidentiality. With the new HIPAA law I think you have to have that release now before releasing anything.

Rochelle

[Snowflake]

Another chime in from Michigan...

I went in to the oncologist's office after surgery. Prior to surgery, I was told my cancer was caught early and was Stage I, Stage II at the worst. I did my "homework" online and had my fingers crossed for Stage I since I had not read my surgical report nor had anyone spoke to me in the hospital about staging, etc.

I can remember all the details...I was still taking major pain meds after surgery because pain management was something that kept me in the hospital for nine days after surgery. The office was sweltering, over 90 degrees (no exaggeration, the heating source seemed to be set at "Hell"). I waited in his office for over 90 minutes, far from comfortable with surgical pain and straight chairs that didn't allow a comfortable position...

In the office, he has my surgical report with all the "pertinent information" highlighted in pink and "IIIA" also written in two inch letters in pink highlighter on the page. Of course, I thought he must have someone else's chart...

...but he didn't. As soon as he told me my stage, I felt as if I had been kicked in the gut. I couldn't breathe...I HAD done my homework and I knew my new set of odds... I couldn't think...my husband was blind-sided, as well, but he could at least string words together...

Some of the oncologist's spiel went "it is not recommended to do chemotherapy with lung cancer, there isn't enough of a positive to balance the side effects...radiation is less invasive and I'll help you get scheduled if that is what you want..."

My husband then asked, "She's so young, what would YOU do if she were your wife?"

Oncologist, "I'd check into trials. She's young and healthy, that would be your best odds."

My oncologist suggested a second opinion and lined me up with MD Anderson - I left for Houston a week later.

MD Anderson was a negative experience for me. I'm pretty sure it is an emotional thing, I went for good news, for "hope" and the "super-oncologist" I saw there started out with "I'm sorry you have this disease, we have nothing for you here." - THIS after waiting over three hours beyond my 'first thing in the morning' appointment!

She didn't suggest chemo NOR radiation as they are not proven (yada, yada, yada)...too bad for me, life's tough, basically...

So I went home...back to my first oncologist...and began radiation...

Trials of Iressa were going on, he asked me about a double-blind trial - I said no way. I'm either fighting it or I'm not, but I want to KNOW that something is being done, not just guess at it...

So he put me on Iressa - "suppressive therapy" trial. I was supposed to be on it for a year, but after two months he pulled me off it due to side effects.

Well, that was a lot to type for background...

BUT, were he to just talk to my husband ABOUT me, if only my husband were privy to the statistics, the "odds", the real "truth" and I had asked to be left in the dark, I would have KNOWN when I looked in my husband's eyes... Somehow, I think the "fight" would be different if he knew more about my odds than I did. I call the shots, the treatments have to be run by me and I want to know ALL the known side effects. I don't want ANYONE making decisions about how I will live or NOT live but me. I may weigh his opinion, but in the end, the body is mine.

My oncologist is wonderful, after the shock of that first meeting and "the knowledge". I take questions, he answers them. He volunteers NOTHING that could be viewed as negative, I have to pry it out of him (giving me the opportunity to NOT know if I prefer to keep my head in the sand). He's almost always late - but I know that once in the exam room with him, I have his full attention...and I don't mind him being late if that time was spent reassuring someone else that might have some extreme doubts, some fears and NEED to talk to him. (Of course, I DO call to see how behind he is so if I'm hungry I don't end up starving...lol)

It's a dance...the whole thing is a dance. You are the doctor, you are supposed to lead...but sometimes following is hard and the patient needs to lead. The balance is knowing when to switch off - and that can only come with time and experience. Actually caring is a very good start...I feel that my local oncologist CARES and that the oncologist I saw in Houston was just doing a job... I'm NOT office furniture, I'm not your next test case, I'm a PERSON, and dammit, I expect to be treated like one!

Boy, my apologies, that was long winded...

My guess is that you are on the right track, you're asking the right questions, gathering differing views....and learning again and again that people are all different. Some of us are just plain tough!

Thanks,

Becky

[cindi o'h]

With me, I already had lost two young brothers to lung Ca. When I learned I had lung Ca, that was pretty scary for me. My sisters and close friends were in the pt. waiting area while I was having the mediastinoscopy and potential pneumonectomy (NOT). It was a good friend who came in to my face when I had awakened and said that the doctor was not able to remove my lung. I cried for the first time. Apparently, the surgeon was drilled by my sisters and forced to answer questions. He told them that I would not see 5 years. They did not reveal this to me, however. Which was fine. They told me instead that he was very hopeful about treatments. You see, they know me better than the doctors do. I did have an oncologist who came to my hospital room who I just remember as rather "cold". I was given his business card. I did request my records and he bluntly admitted in his notes that there was not much hope of survival. (I am glad I had the instinct right away NOT to pursue this doctor)

At my first onco. app't with the chosen doc, I was as nervous as he was. I needed to make some big decisions. So I asked him if my $$ would be better spent on a sunny, beautiful island and some margaritas or on some nasty chemo. I said, "If you were me, what would YOU do?" He said he would go for the treatment..."most people don't survive this stage and type of cancer, but SOME do."

Right then and there I knew in my gutt that I was going to be a part of that SOME. I sensed strongly throughout my treatment and office visits that he did not have the confidence in me that I had in myself. (I am a toughie) That relationship never did take hold and was toxic. I did appreciate his quote to me, however, and that statement gave me the ability to make up my competative mind that I was going to get through this.

I am not saying that it wasn't scary, and that it still isn't scary. I am saying that MOST of me believes that in five years, that I will have a smirk on my face.

My 37 yo brother was given a 5% chance of survival. He made it to six months. My 42 yo brother was told by a PA to get his affairs in order. Up until that time he was very happy and tolerating every procedure emotionally well. When she told him this, he then became depressed and died 3 weeks later. He died very sad and very scared.

With my 37 yo brother, his siblings were his next of kin. At dx, he was so ill, intubated, and almost in a coma. We needed to make decisions as a group on his behalf. The doctors told us that he would not make it very long but they wanted to give him treatment to give him just a little more time. At that time, he was so very ill, that I just wanted to let him go....I am glad that we decided on treatment. Those last four months of his life, I would not trade for anything. And he was happy, very happy too. The nurses absolutely loved him. And he proposed marriage to countless nurses...(he was so funny).

The onco. advised us not to tell him his prognosis unless he asked. He never did ask. The onco. told us that if he wanted to know and if he were ready to hear the answer, then he would ask and then we should tell him, but not until. This onco. was a wise man in his early thirties.

Hope all of these notes from everyone helps you. I have read so many of everyone's experiences, that it helps me also.

Good question. Thank you. Cindi o'h

[BoBennett]

First let me say I am so impressed that a doctor would take time to listen to a patients thoughts and I feel so lucky to be here at this time.

I wanted and want straight up facts.

My Onc read Stage IV into his Dictaphone and then when I asked him how much time I had, he somewhat laughed and said to me “your healthy”. I knew what the stats were for stage IV so,,,,,,,,, He also said to me “we play to win” Two visits later I asked again, he said ask me in three months, Two months later I asked him again, he said he’s had stage IV patients who have lived for years.

During the initial period from diagnosis I went from knowing I was past my survival time, and feeling like I was a short timer to going into complete remission and resolution of bone mets.

Years ago “Now early in my career I would at this point go into statistics, 2 and 5 year survival rates, etc” I remember everyone being given a time period. Years ago I remember most all not making it.

Today I exercise daily and run twice a week have no pain and have no plans to leave due to cancer.

Personally I feel it is detrimental to be given a time period without a healthy talk about statistics being just that, statistic. If my Onc would have given me a time period and I had not learned that some folks squeak by and if my pain had not gone away I don’t think I would be here today.

In my opinion, as a rule, society thinks that cancer is a death sentence and the doctor knows the date.

I applaud you for understanding and asking about this serious aspect of diagnosis.

“Was I right in giving this information to the family without the patient being present? Should I have told them I can't really talk to them without their dad being present (that is the response the hospital lawyer would want me to give )? Am I not being "up front" enough?”

Sometimes families need to know. I believe a responses should be individual. Lawyers!!!!

Bo

[kayd]

DOCTOR JOE,

On the first visit if you give too much information, it isn't going to stick with the them,By the time they leave your office they won't remember half of what you tell them, It seems to me the mind has a way of shuting down when the stress gets to large to handle. I can honestly say that I remember very little from the first visit, and I doubt that My husband remembers much either, we were so devastated from the dx. that nothing was registering.

I personally think that most of us want to know, is it curable? if not, what is the best course of action? Most familys just want as much time as possible to be together.

I only found out recently what stage my husband's lung cancer was when first found, At the time of Dx. it would have done no good to tell me as I was too freaked out and telling me would have made it worse. only now ( after a year) do I feel I able to handle it, This is a learning experience in progress, each turn is different in this on going disease!

I think if the family doesn't ask don't tell them, if they ask, don't lie, they will learn to adapt. I am amazed an how much my family has grown through all of this. KAYD

[Don M]

Hi Dr Joe;

I think you probably made the right decision at the moment in light of your later post describing the family dynamic, where the patient appears to have turned over the management of his medical discussions to the family members. I guess legally you were hanging out there discussing the case with the family members without the patient’s permission, but you needed to address that moment of interaction with the daughters, as humanly as possible, and maybe that was not the right time to discuss legal matters.

Anyway, as a patient, I would want to know every thing, including the odds. I pretty much knew everything about my cancer by the time I saw my oncologist. I obtained copies of all the medical reports. During the midst of my cancer odyssey, I was looking at the possibility of inoperable lung cancer with possible lymph node involvement and mets to the liver. But a PET scan ruled out mets to my liver, and so I had surgery. I knew the surgery could be aborted if my lymph nodes were involved, but they turned out ok. So, after surgery, I knew I had stage 1b. When I saw the onc, I told him that I had read that the benefits of adjuvant chemo were marginal. I told him that I was leaning to not do chemo, but asked him for his opinion. He agreed that chemo provided me with marginal benefit, and so it was a mutual decision to not do chemo. I received no pressure at all from the oncologist to do chemo. I believe that I have had a surgical cure. Another reason I did not do chemo, was the surgeon’s remark, “I had a well behaved cancer”. I thought that the onc was a good listener and a caring man. I go to him for my regular checkups now.

[Debi]

After my surgery, both my Surgeon and Pulmonary Specialist told me that I did not need any kind of follow up chemo or radiation, that my cancer had been contained and removed, and that I needed to use my strength toward recovering. I had specifically asked them both if they suggested adjuvent chemo since I had read on here that a new report had come out in May of 2003, that according to a test group, chemo did improve odds. BOTH of them talked to me at length about the study, and although I won't get into it since this isn't what this thread is about, told me that they would be surprised if an Oncologist offered me chemo after seeing my pathology report. They both spent a great deal of time giving me hope, and telling me to get on with my life (while remaining vigiliant of course).

I had made an appointment at the (only) local Cancer Center with an Oncologist since my Surgeon and Pulmonary Specialist were 4 hours away and it would've been difficult to do followups with them. The moment he came in the room with my medical record in hand (I had brought my pathology reports, etc), he asked me, in puzzlement, why they had only taken a wedge of my lung. I explained to him that they took 2 lobes, that they had taken a wedge at the start of my operation, to send to see if it was cancerous. This sort of set me back because it showed me that he actually had only skimmed my report, or worse yet, read the first few sentences.

Next he told me that he was making an appointment for the following week to have a port installed in my chest. At that point I felt almost like I was in shock, I asked him why. He told me that according to the findings of a recent study, yada yada, I needed to have chemo through January (it was August). I told him what both my other doctors had said and he told me that it was evident that they weren't aware of the new findings. I told him that they WERE, in fact they were affiliated with Cancer Treatment Centers of America and knew all about the study, and he just shrugged. He told me that my cancer was very very aggressive because I was so young and had it, and that it would definitely be back. By this point, I was actually belligerent because he hadn't even made eye contact with me yet, obviously hadn't read my report since he didn't know about my lobes being gone, had undone any confidence that CTCA had tried to give me and was rushing me into something that I hadn't agreed to. This is MY body and right or wrong, the decisions about it are made by ME.

I still see this Oncologist basically because he is the only game in town and I would hope that he could at least read a test result. If the cancer DOES come back, I will be the first to go up to OKC or back to Tulsa because I will not allow this man to treat me basically because I am still waiting for eye contact. Oh, and this man who told me that my cancer would definitely come back, told me at 9 months out that he only needs to see me every 6 months rather than 3. I see my GP in between to at least have a chest xray taken.

As far as telling family members, I think as some others have said, alot depends on the patient. I do NOT want anyone knowing what is going on with me unless I choose to tell them. The next person may be different. And thank you Dr. Joe for showing me that there ARE good Oncologists out there...

[SJAS]

Dr. Joe,

Wow, you sure got some response to this one! Thank you for being so caring and brave enough to ask.

My husband does not go online for all the facts, statistics (what's that line - "Lies, d#*@ lies and statistics"), but like so many of the spouses, I do. My husband has said repeatedly that the one thing the doctor said which has sustained him was, "We can treat this for a long time." And then he started right out with an aggressive course of action. My husband was hospitalized within two hours with a chest tube. Radiation started soon after - he was taken out daily by ambulance. So the doctor's words seemed to ring even more true.

One phrase that still drives me crazy is "quality of life." I know what it is supposed to be addressing, but it immediately says "lack of..." in my brain. Instead of that tired old stock depressing phrase, how about saying something like, "We're going to give you some choices so that you can best decide which meet your needs." That also addresses the other major issue for patients and families, which is the feeling of having no control over their life anymore. My husband really took an upward turn when he started making more decisions about the course of his treatment.

Could say more, but sure you must be overwhelmed by all our lengthy responses anyway. Just want to thank you again for taking a deeper look at the human instead of the disease.

[richinsdakota]

Hi Doc; glad to see you seeking the feelings of the patients on Dr./patient relationships. If you have seen my posts, Im a very disapointed with the relationships Ive had with surgeon...not sure yet about my Onc., just one visit so far. But it seems even my fam. doc just doesnt exhibit much sensitivity towards my plight. Pervasive attitude these days it seems...dont they teach any "bedside manner", any more?

Sounds like you strive to show sensitivity, tho, kudos for that. Maybe Im old fashioned, not having been treated mu;ch since the 50s and 60s...but just dont know how it can be justified for a physician to dispense some of the kinds of indifference and lack of sensitivity I have read posted here, and observed myself.

I asked the surgeon if the stats, (10-12 months if untreated) applied to me...he emphatically stated "probably!" Hes a man of few words...sigh

But at least he seemed to know his stuff, and didnt give me the feeling we were stumbling along in the dark, or something. I settled for the assurances that his surgical skills were good., that was the important thing, I guess. The empathy could wait for another time.

The best attitude I saw was the anesthesiologist dr....energetic, cheerful, friendly, thorough. He was a bright spot in the few days I encountered him. What a difference just a little cheerfulness made.

Im sure its tough to sort out all the considerations drs. are faced with...legal, ethical, personal relationships, etc...but I think there are a lot of them that could certainly try harder. I applaud your efforts in this area....if I could offer one thing that might help, its that just a little sensitivity, consideration goes a long way towards helping the patient feel more comfortable with the relationship.

[Nushka]

Dear Dr. Joe,

As the others have said, I appreciate your being here and trying to teach as well as learn. That said, I must agree with most of the above statements. I was not ready to know at my first appointment any stats. I had read plenty and thought my stage was IIA at the time. Only one mediastinal node showed any activity and that only upon immunohistological staining. They really didn't know what to do with me. So, my doctor said that he was not sure...but that he knew Dr. David Johnson, head of oncology at Vanderbilt and would call him and talk to him about my pathology etc. He called me the next day and told me that together they thought I should have chemo (carbo/VP-16) and follow it with radiation. I was given three sessions. I appreciated his interest and his admission that he was not sure the best way to go. I also sent my report to MD Anderson and they concured. All in all I was impressed favorably by his demenor etc. I asked for stats and he knew I wasn't ready to hear them so he replied.." what we are doing is the best thing we know of for a cure". That made me feel like I had a fighting chance.

Now for the negatives of using my oncologist. He NEVER reads any reports prior to coming in the exam room. I go for tests...then wait several days for an appointment with him to get the results. I am a nervous wreck each time. He comes in...greets us...then begins to read the report. I anxiously watch his face....scared to death. So far the results have been good...but if they are NOT good in the future, I would prefer that he KNOW when he comes in the room what he needs to say and do with the current situation. He answers only questions that are asked and I wish he would be a little more forthcoming, but I know he is competent and will probably stay with him. I find that as our relationship builds with time, he seems to understand more what I need and seems to be well read. That is also important to me.

Again, thanks for being here and I am sure you are prepared when you go into an exam room. If not, take a few minutes outside the door reading the chart...

Nina

[Pamela]

First, thanks for caring. If you've got THAT, everything else can be worked out.

When my Dad was told his diagnosis, all 4 of his children were there. The statistics of "6 months to a year" were quite a blow. My Dad was 77, and we all had the strong impression that the oncologist felt Dad's situation was hopeless. He basically dropped the bomb, said he was sorry, asked if Dad had questions, then walked out when Dad said he didn't. He virtually ignored all of us.

Throughout Dad's treatment, we had doctors repeatedly emphasize that "it doesn't matter what we do, nothing will change the outcome." When Dad had a lung infection, we had one doctor actually ask why we were fighting so hard to keep Dad alive since "even if he gets better now, he's going to die from the lung cancer anyway."

We kept having to repeat that we were fully informed about lung cancer(after extensive research), and we fully understood Dad's situation. We weren't in denial and we weren't looking for a cure. We couldn't make them understand that for Dad it wasn't about the eventual "outcome." It was about grabbing quality time for him -- every hour, every day, every week, every month we could. The essence of life isn't in the years, it's in the hours that make the days that make the weeks that make the months that make the years. You start with the preciousness of every hour.

Dad sensed early on that the doctors didn't have any hope for him. After the initial diagnosis, Dad wouldn't ask questions, didn't listen when the doctors tried to explain a procedure, and basically closed out any discussion of the disease. His children, however, wanted to know everything, and we took over.

As you can see from the responses to this thread, there are no rules that fit each situation. We had only one doctor spend time with Dad to ask his goals for possible treatment. She was very compassionate, and she explained that his goals made a difference in the type of treatment. Dad told her that he just wanted to feel as well as he could for whatever time he had left so that he could enjoy one more fishing trip.

I'm crying as I'm writing this because he never got that fishing trip, primarily because the other doctors working with Dad never understood, never understood, never understood. They just plugged him into their little "do this for Stage IV NSCLC with brain mets" program, and prescribed away. If it kills him, so what? He's going to die anyway.

My opinion? The best thing you do for any patient and family is listen. Listen with your ears and your heart. Listen to the silences. Look into the patient's eyes and see, really see, that person. Pay attention to what questions are asked, and what questions are avoided. Connect. Ignore the statistical "eventual outcome," and believe in the value of one more day. If you don't have time for that, your schedule is too full. Quantity of patients seen each day isn't nearly as important as the quality of time spent with each patient.

You are in a wonderful, beautiful, horrifying, terrible situation. Every day you deal with people who are enduring perhaps the worst thing that has ever happened to them. Because it is an incredibly emotional and vulnerable situation, you will likely have a significant impact -- positive or negative -- on each and every person you see. You can't go wrong by allowing yourself to truly care about each one.

Good luck, and God Bless!

Pam

[Donna G]

Yes, Dr Duane took care of me!!!!!!!!. I sent you a message so check your mail box. Donna G

[Remembering Dave]

From Virginia (and man, you asked for it, look at the responses you got!):

My husband got diagnosed, preliminarily, in the ER. The ER doc said it could either be LC or an infection (we had recently returned from China) but in his opinion was looking like LC, so we, at least I, was prepared for the final diagnoses. The oncologist visited Dave in his hospital room a few days later, after the surgical biopsy confirmed it. He did tell us the stats, but in a very gentle manner- he tempered the blow with "but you are young and strong and healthy so you can beat this." He explained what type of LC Dave had (SCLC), the stage (limited) and what the treatment would be. He did not go into alot of details about stats but like I said he did mention them. We had some time, a week or so, to digest everything he told us and do some research, before meeting with him again in his office - an appointment I must say that I called up and brow beat the nurse into giving us - she wasn't going to give Dave another appt. until after his first round of treatment and like I told her - that ain't gonna cut it, honey - one brief conversation with Dave, totally doped up, suffering from lack of sleep and still reeling from the shock of what was happening to him - in his hospital room before he even knows what's going on - wasn't enough. So we got that second appt. and cleared up alot of thing. He had his first chemo in the hospital, the next day after seeing the oncologist there, but then we had questions and questions and questions. I think the oncologist admired our spirit and gladly talked to us in his office. He said that there was a 5% or 10% (I can't remember which) survival rate with SCLC but that there was no reason Dave couldn't be in that 5% or 10%. He also said that a positive attitude, a will to live, a strong support system from family (and looked me straight in the eye), etc., etc., made a ton of difference.

So, in other words, he gave us stats, but we never asked "how long to live " (I think that's a stupid question anyway) and the stats he did give us were also given with reminders that stats don't apply to the individual.

Now, about talking to the daughter privately . . . I think there are very good instances where you CAN get the feel from the family, the dynamics of what's OK to talk about and to whom. If the man brought his whole darn family with him to the meeting, then obviously he didn't mind them knowing anything you had to say. I think it's OK to talk to the daughters seeing as they were at the meeting, and I think you probably had a feel for how they would treat that information. Were they going to run back to daddy and say "gosh, you only have SIX MONTHS to live" or were they going to take that information and use it for themselves, as a gauge for what to expect and how much they need to tune in to their needs of their dad and mom? I suspect you knew that or otherwise you wouldn't have talked to them.

Frankly, Dr. Joe, I don't think you can go wrong, because you obviously CARE. It's the docs who don't care that are going to make people unhappy.

I hope this makes sense.

From a VERY supportive, hand holding, tell it like it is spouse,

Karen C.

[Connie B]

Well, on my first visit with my Onc Doc, we spent 2 hours with him. (although we had to wait over two hours to see him) It was a wait worth waiting. He was so sensitive and caring and professional and explained things sooooooooo well to us. NEVER, EVER did he mention the dreaded STATS!! Never did I ever ask and never did ANY of my Doc's mention the dreaded STATS! They all assured me I would going to be just FINE! We were a great team, all my doc's, and family and me! We all worked together and were open and honest with one another. Now, I will say, at the beginning of this journey, there were things I didn't want to know but, in time to come I knew I would learn more as time went on. I can NOT remember ever hearing anyone mention death, or dying, or people with my kind of LC don't do good, etc.... We all remained positive and HOEPFUL! Now, I will say this. After I surpassed the three year mark, my Pulm Doc made mention that I am a MIRACLE! Then when I passed the 5 year mark, my SURGEON made mention that I AM A MIRACLE! (I ran into him at the hospital one day) And now I'm looking at 10 years come next July and I don't mind being a MIRACLE! But, I am so very GRATEFUL and THANKFUL to have such a wonderful team of compassionate, caring, educated Doctor's. I have been blessed in more ways then ONE! They showed me they were human beings and that made all the difference in the world to me. I knew they were going to do the best they could for me with the best that medical tech had to offer. They also showed me I was a human being, and that too gave me strength and hope to fight this battle. Never have my doctor's talked down to me or over my head. They are all on my level when we are doctor and patient chit chatting. After all this time, all my doctor's have become my friends as well. Now, I know that doesn't happen often, but in my case my doc's have gone the extra 1000000 miles in the fight for lung cancer.

They want to HELP people live from this disease and they NEVER blamed my cancer on the fact that I smoked. They all said it was a "contributing factor" Along with many other factor's. As a matter of fact, my Pulm Doc said to me a few year back, "IF everyone in this world quit smoking today, we would STILL have lung cancer 50 years from now"

This question for ME brought me back to "memory lane" It's been a while sense I started my journey, but I still remember the beginning days! And in this time I have learned one very important lesson in life, I am the HOPE others need to see and hear about. I have beat the odds and many other have anc CAN as well. As one of my Support Group members always says: "It's Another Great Day to Be Alive"

Best Wishes,

Connie B

[ellakc2]

Hi Doc,

Thanks for your response to stages. You kind of helped me. When I

was dx on 7-31-03 the Dr. said stage II from CT scan. My tumor is gaint cell. (clear cell) 2cc w/ two lymphs. It was in top right lobe(bronchial) .which was removed. No

pleural effusion. After surgery the onocol.surgeron said he legally had to

classify it as stage III, but that it was extremely early stage III. They found one microscoptic cell starting to go under sterum. Six wks. later started cemo for six wks. once a week (carboplatium/taxol)and 22 rounds

of radiation. No Dr. ever put a letter after my stage. Have been cancer

free ever since. I am very curious. I will not see my Dr. until December

what do you think? Stage III what?

[ellakc2]

This is to Donna G.

I was reading all the replies to Doc and was reading yours about your

systoms of chest and shoulder pain. No it is not common but one of my

best girlfriends had the same systoms and thought she pulled a muscle also and called her MD for muscle relaxers and he wouldn't give them to

her until she went for her annual chest x-ray (heavy smoker) so she went and they found tiny tumor in top R lobe,she had lobe removed and

didn't have cemo or radiation. She was way lucky that she had a MD(had him for yrs.) that was stubborn and wouldn't give in until she had the

x-ray. She been cancer free for three years. Just thougth I'd share that

with you.