Docs and the Truth

nwasen
nwasen Member Posts: 235 Member
Saw something on tv today, may have been the Today Show. they were discussing docs who don't tell you the truth and whether or not that is a good or bad thing.
I am curious to hear what your docs told you when you were diagnosed.
I was stage 4 and my cancer was found by my ENT who is local. I remember he stuck his hand down my throat feeling my tongue and took about 3 steps back and with a look of horror said a very bad word. (lol)! I asked what he meant and he said it was cancer. I remember thinking what the hell does he know, he is an ENT not a cancer doc.
Well, he was right on with his diagnosis. He made me go to the James where I got the very best of care. I flash back to my first visits there with scopes and so on. No one ever told me I was going to die or how grim it actually was. Just the numbers and that it was beatable.
One year to the day that my ENT found my mass, we went out for cocktails.He admitted to me that night that on that day one year earlier, he didn't think I would make it. My head was reeling for about a week...but now I am glad he told me. I am also grateful that he didn't say those words to me on that awful day in 2010. I think I would have still fought like hell but being already scared, I think I would have been terrified, instead of just alittle scared.
And you?? What do you think?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    an interesting question
    you pose. I've known my ENT oncologist for 14 years, and I value him both as a doctor and as a human being. I know he's gotten to know me well enough throughout the numerous office visits and hospitlizations to feel he can speak the type of words I need and want to hear.

    When my cancer came back this last fall, I knew my choices for treatment would be very narrow, very difficult, and not with a high probability of success (my results, thusfar, prove how giving odds may not make sense). He didn't mince words for any length of time with me. He told me of the PET scan results within 60 seconds of entering the room, and went immediately into the choices and options portion of the discussion. Hospice was actually discussed on that initial office visit. As well as general thoughts toward radiation retreatment through IMRT--- much of which was new information to me.

    He didn't confuse the issues by telling me percentages or odds, but told me there was reasonable chance of cure, without permanent severe disability by combined chemoradiation for me. My decision to proceed with treatment was predicated on his comments in that 15 minutes. Had he chosen differnt words, I very well might have chosen hospice. Had I chosen hospice, I would now be dead, as I had a rapidly enlarging, already significantly debilitating cancer. This is, to me, much like your decisions might have been shaped differently if your doctor had said everything that was on his mind when he first told you of your cancer.

    It is a very difficult thing that these doctors do, who deal in life-and-death every day with us. It is hard for them to read their patient, oftentimes without many office visits of personal insight into their emotional needs, and to avoid falling into the trap of projecting their own personalities, beliefs into the conversations.

    I have made it clear to my doctor that my priorities include some kind of assessment of quality of life. It isn't sufficient to me that we just push on, damn the torpedoes, no matter what the price. I think I once phrased it to him that "I am not interested in living just to be someone's laboratory experiment." But that's injecting my personality into my health-care mix, which I have been allowed to do. Had I now, I wouldn't have retained this guy as my physician. OTOH, when we are new to catastrophic health care, we don't necessarily have the luxury of choosing our physician this carefully. Or maybe being this lucky in our choice.

    Nearing completion of this current treatment, I'm glad you reminded me of all of this. It is much easier for me to face with this concept, and to potentially deal with it again, knowing I've got the kind of partnership I need to make my decisions.

    Sorry for the ramble.

    Pat
  • stevenl
    stevenl Member Posts: 587

    an interesting question
    you pose. I've known my ENT oncologist for 14 years, and I value him both as a doctor and as a human being. I know he's gotten to know me well enough throughout the numerous office visits and hospitlizations to feel he can speak the type of words I need and want to hear.

    When my cancer came back this last fall, I knew my choices for treatment would be very narrow, very difficult, and not with a high probability of success (my results, thusfar, prove how giving odds may not make sense). He didn't mince words for any length of time with me. He told me of the PET scan results within 60 seconds of entering the room, and went immediately into the choices and options portion of the discussion. Hospice was actually discussed on that initial office visit. As well as general thoughts toward radiation retreatment through IMRT--- much of which was new information to me.

    He didn't confuse the issues by telling me percentages or odds, but told me there was reasonable chance of cure, without permanent severe disability by combined chemoradiation for me. My decision to proceed with treatment was predicated on his comments in that 15 minutes. Had he chosen differnt words, I very well might have chosen hospice. Had I chosen hospice, I would now be dead, as I had a rapidly enlarging, already significantly debilitating cancer. This is, to me, much like your decisions might have been shaped differently if your doctor had said everything that was on his mind when he first told you of your cancer.

    It is a very difficult thing that these doctors do, who deal in life-and-death every day with us. It is hard for them to read their patient, oftentimes without many office visits of personal insight into their emotional needs, and to avoid falling into the trap of projecting their own personalities, beliefs into the conversations.

    I have made it clear to my doctor that my priorities include some kind of assessment of quality of life. It isn't sufficient to me that we just push on, damn the torpedoes, no matter what the price. I think I once phrased it to him that "I am not interested in living just to be someone's laboratory experiment." But that's injecting my personality into my health-care mix, which I have been allowed to do. Had I now, I wouldn't have retained this guy as my physician. OTOH, when we are new to catastrophic health care, we don't necessarily have the luxury of choosing our physician this carefully. Or maybe being this lucky in our choice.

    Nearing completion of this current treatment, I'm glad you reminded me of all of this. It is much easier for me to face with this concept, and to potentially deal with it again, knowing I've got the kind of partnership I need to make my decisions.

    Sorry for the ramble.

    Pat

    Eyes
    My doc simply said you have cancer and it is serious.
    StIV of the right tonsil. My wife and daughter
    were there and of course they became hysterical.
    I just sat there because I really already had a
    feeling that I had C. He never took his eyes off
    mine as I asked what next? And he told me the next
    steps, and said I can tell by looking at your eyes
    that you will make it. I credit this doc for saving
    my life. And he was very truthful.
    Best,
    Steve
  • jtl
    jtl Member Posts: 456
    My ENT is about as blunt and
    My ENT is about as blunt and straight forward as a person can get which suits me just fine. Even before finding the primary site and biopsy results he was talking cancer based on his visual inspection. However he thought it might be lymphoma which was just a guess at that point in time since I did not have an identifiable "mass" or any symptoms other than a single enlarged lymph node. When it was confirmed as SSC and the primary was indentified he told me how tough the treatment would be and even said not to be talked into a PEG by anyone until I talk to him. I later found out that he had written a paper when he was in his residency about the use of PEG's and recovery from HNC therapy. After the primary was located he told me that he was confident that I could be cured, bold statement but that is his opinion and I liked the sound of it.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Yes, An Interesting Question
    As Pat brought up, it is a very difficult thing our doctors have to deal with, more times than not delivering bad news to us. I clearly remember walking into my ENT's office when I finally received an 'all clear' on my 3rd PET/CT scan, 1 year post TX. I could tell by his demeanor as soon as I walked in there was good news afoot. I didn't even get a chance to sit down before he was telling us the results. I really think he was almost as elated as we were.

    I was originally diagnosed by an ENT who strongly suspected (and was absolutely correct) that I had BOT cancer. He then referred me to an ENT cancer specialist at another hospital for confirmation and treatment. They were quite straight-forward with the treatment options, risks and general survivor rates. They didn't beat around the bush with the prognosis and I guess I would prefer it that way.

    Yeah, those 1st few days after diagnosis sure are a blur now. Though once we decided upon a course of action, the entire medical team was quite optimistic all during treatment. Cheers.

    Jimbo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    ENT
    Nancy....my ENT saved my life as far as I'm concerned....not just an ENT.

    Even though my facility is rather small incomparison to some...it is associated with the Moffitt Cancer Center in Tampa...for what that is worth.

    But, my ENT graduated from Harvard Medical School, and did his internship at John Hopkins. He is constantly doing research and white papers, speaking, teaching , etc....

    I feel he is very qualified..he actually was the head of my cancer team, and still is my main go to MD for routine exams, scopes and monitoring.

    My GP (at the time, since fired by me)...messed around for two months with minor meds and anti-biotics...he never even took a throat culture to rule anything out. The only good thing he did was refer me to my ENT.

    On the first visit, my ENT scoped me, sent me for a CT and told me to come right back after. As soon as I got back, he told me he was 90%+ sure that I had SCC Throat Cancer, more than likely HPV+ since I wasn't a tobacco user.

    At that time hardly anyone on here or their MD's were mentioning HPV much, and the media wasn't there like now.

    He send me down that same day for EKG, scheduled me two days later for the tonsils to come out. When he took them out he did a quick biopsy and confirmed it was STGIII SCC. A few weeks later the results came back also confirming HPV+.

    He then assembled the Team - Hematologist/Oncologist MD, and Rads MD....

    He has been spot on with everything, and always let me know upfront what to expect. He also said it was very curable these days and not a death sentence.

    I think a lot has to do with genetics, health and age going in, attitude and faith. Faith not necessarily meaning religion (but that doesn't hurt), but faith in yourself, your family and friends, and faith in your MD's.

    Best,
    John
  • Greg53
    Greg53 Member Posts: 849
    Skiffin16 said:

    ENT
    Nancy....my ENT saved my life as far as I'm concerned....not just an ENT.

    Even though my facility is rather small incomparison to some...it is associated with the Moffitt Cancer Center in Tampa...for what that is worth.

    But, my ENT graduated from Harvard Medical School, and did his internship at John Hopkins. He is constantly doing research and white papers, speaking, teaching , etc....

    I feel he is very qualified..he actually was the head of my cancer team, and still is my main go to MD for routine exams, scopes and monitoring.

    My GP (at the time, since fired by me)...messed around for two months with minor meds and anti-biotics...he never even took a throat culture to rule anything out. The only good thing he did was refer me to my ENT.

    On the first visit, my ENT scoped me, sent me for a CT and told me to come right back after. As soon as I got back, he told me he was 90%+ sure that I had SCC Throat Cancer, more than likely HPV+ since I wasn't a tobacco user.

    At that time hardly anyone on here or their MD's were mentioning HPV much, and the media wasn't there like now.

    He send me down that same day for EKG, scheduled me two days later for the tonsils to come out. When he took them out he did a quick biopsy and confirmed it was STGIII SCC. A few weeks later the results came back also confirming HPV+.

    He then assembled the Team - Hematologist/Oncologist MD, and Rads MD....

    He has been spot on with everything, and always let me know upfront what to expect. He also said it was very curable these days and not a death sentence.

    I think a lot has to do with genetics, health and age going in, attitude and faith. Faith not necessarily meaning religion (but that doesn't hurt), but faith in yourself, your family and friends, and faith in your MD's.

    Best,
    John

    Same as LTS
    As I think he has pointed out in another thread, Pat (LTS) and I have the same team of doc's. I "interviewed" 3 teams of docs before settling on the team to do the dirty work. As soon as I spoke to him I knew it was a good fit. And "him" is the ENT and lead on my team and the same guy Pat referred to above.

    As with this crap we have, everyone deals with it differently mentally as well as physically. And I think everyone is not the same on what they need to hear. I am definitely looking for honest answers and no BS along the way and that's what I got with my ENT. But I think he varies his bedside manner to fit the patient as well. My sister went to him also for epoglotis cancer and she definitely did not need to "hear it straight".

    I think I've told this story before but to me it shows this ENT knows his patients well. I have a tendancy to be bit sarcastic and joke about everything (maybe a bit too much). The morning of my surgery he came in and my wife and I and a couple of my buddies were there, scared shetless probably, but don't remember that for sure. All he said was "Man I feel great today. I wish I could just shake this dang hangover." I loved it and I was still laughing my butt off as they rolled me into surgery.

    Greg
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Greg53 said:

    Same as LTS
    As I think he has pointed out in another thread, Pat (LTS) and I have the same team of doc's. I "interviewed" 3 teams of docs before settling on the team to do the dirty work. As soon as I spoke to him I knew it was a good fit. And "him" is the ENT and lead on my team and the same guy Pat referred to above.

    As with this crap we have, everyone deals with it differently mentally as well as physically. And I think everyone is not the same on what they need to hear. I am definitely looking for honest answers and no BS along the way and that's what I got with my ENT. But I think he varies his bedside manner to fit the patient as well. My sister went to him also for epoglotis cancer and she definitely did not need to "hear it straight".

    I think I've told this story before but to me it shows this ENT knows his patients well. I have a tendancy to be bit sarcastic and joke about everything (maybe a bit too much). The morning of my surgery he came in and my wife and I and a couple of my buddies were there, scared shetless probably, but don't remember that for sure. All he said was "Man I feel great today. I wish I could just shake this dang hangover." I loved it and I was still laughing my butt off as they rolled me into surgery.

    Greg

    Humor....
    Who you, I think I resemble that remark as well....

    Hey Greg, you better start boning up on your fishing... I think I heard LTS saying he was gonna put a fishing seminar on and you were gonna be a hurtin afterwards, LOL....

    Not sure though, maybe I got my facts wrong...could be a case of chemo brain..., that's my story and I'm sticking to it.

    Best,
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Complicated answer here.
    People were pretty blunt with me, and I really appreciated it. I don't believe much in mincing words.

    The ENT who found it didn't say a whole lot, held my hand, asked if he could pray with me, and then referred me to the oncologists.

    I high-tailed it to my GP, who baldly stated that life was really going to get ugly, I was going to need help to eat, I was going to lose all my teeth, and I could expect to be cut, burned and poisoned, and sick as a dog, likely all at the same time. GP admitted that he had called my ENT about my prospects, and that my ENT had stated that my chances were 50/50.

    I did my own homework, connected with some great docs at Stanford, figured out that my chances were a hell of a sight better than the ENT thought, and then started educating my ENT and GP. Poor guys couldn't figure out why I was so insistent they immediately order HPV tests for my tumor biopsies, but they did it. After treatment was done, and I got the clean 3 month PET-CT, my ENT knew not to even argue when I told him to give me the HPV-vaccinations on the slim chance they'd help.

    In my case, the silence was what scared me. I didn't get calm and really rev up for the fight till I heard the honest opinions of my GP.

    Deb
  • IAmStrong
    IAmStrong Member Posts: 58
    D Lewis said:

    Complicated answer here.
    People were pretty blunt with me, and I really appreciated it. I don't believe much in mincing words.

    The ENT who found it didn't say a whole lot, held my hand, asked if he could pray with me, and then referred me to the oncologists.

    I high-tailed it to my GP, who baldly stated that life was really going to get ugly, I was going to need help to eat, I was going to lose all my teeth, and I could expect to be cut, burned and poisoned, and sick as a dog, likely all at the same time. GP admitted that he had called my ENT about my prospects, and that my ENT had stated that my chances were 50/50.

    I did my own homework, connected with some great docs at Stanford, figured out that my chances were a hell of a sight better than the ENT thought, and then started educating my ENT and GP. Poor guys couldn't figure out why I was so insistent they immediately order HPV tests for my tumor biopsies, but they did it. After treatment was done, and I got the clean 3 month PET-CT, my ENT knew not to even argue when I told him to give me the HPV-vaccinations on the slim chance they'd help.

    In my case, the silence was what scared me. I didn't get calm and really rev up for the fight till I heard the honest opinions of my GP.

    Deb

    First Diagnosis, then Second
    First diagnosis was good, I had all information I needed and processed it well. Hubs and I prayerfully made our treatment decisions with the doctor I work for supporting us along with the Head and Neck Clinic support. They recommended a full neck resection because I had a 10% chance of recurrence. Expect neck, shoulder weakness possible mouth drop etc. I was a full time caregiver for my elderly medically challenged parents who both lived with us (I am an only). To me, I could not affort that, we decided 90% said I would Not have recurrence. We monitored closely.

    I found a lump in my neck, lodged right after Christmas. We disagree (my surgeon and I) on my pointing it out to him in late Nov when it was smaller. However, that doesn't matter in the end. I was diagnosed, and in surgery with a modified resection. Two positive lymph nodes, with cancer broken through one and "sticky stuff" around my jugular. Lab was inconclusive whether in penetrated. My surgeon was UNHAPPY with me!!! He told me this was "critical and the next two years will be critical"...and wham, put me under. Not cool. You do NOT tell a nurse this is critical! Critical is life and death momentarily. I freaked, I believed I was going to die then, for over 6 weeks I believed my chances of survival were slim because of the "critical" comment and his harsh demeanor with me. Then came a new lump at my clavical while healing from surgery and awaiting treatment. He was POSITIVE it was cancer and scheduled a PET scan. IF it was anywhere else, he said we no longer would be treating for cure. I prayed my heart out, cried until I could no longer.
    I prayed I could have the treatment I had feared. Praise God, I had no other cancer, and the one he was sure was....was not! His demeanor with me changed.

    My oncologist....I will not speak to him today. He blamed my kidney failure, sickness, anemia, everything on me not drinking enough. I had to beg for a peg tube, my radiologist arranged that for me! My oncologist told me no after drastic weight loss. I puked for two months....constantly. To be noted, I am sensitive to MANY medications. I was surprised at how sick I was though. I begged for enough IV fluids because of my incessant vomiting. Finally I had home health and IV's daily at home (my co workers did this, I have worked agency for 18 years). My co workers caught my decline and I was admitted to the hospital for 2 1/2 weeks for blood, fluids, heck I can't remember all. It was then, that I nearly didn't make it. I had a different team locally then, and they saved my life as far as I'm concerned.

    I saw my surgeon after all of this. My oncologist too, who blamed me totally for where I was. My friend who took me said last month she regrets not going back with me when they initially hooked me up for my last chemo. She says there was an error, I wasn't suppose to get the cisplatin? I am getting my records now. I didn't want my last treatment, I was so sick. He talked me into it with no compassion no interest and his nurse wasn't available to me or the team either. After the last treatment, I lost my kidneys, hearing and developed tinnitus.

    It was a long slow climb back up, but I made it!!!

    If I would have a recurrence one day, chemo is not an option for me. I have NO CHOICE but to beat this, and this is where I see myself! I am working out, doing yoga, have totally changed my eating habits and eat only wholesome food, Nothing processed.

    I had a horrible nephrologist on my second hospitalization. He was on call for my awesome one, he looked at me with his daughter same specialty and said, "Weelll, I hope you make it.", upon my dismissal. Pizzzed me off, something in me recoiled and I could barely speak but told him, "OHHHH! I WILL MAKE IT!". My friend was in the room, looked at me and said, "Did he just say what I thought he said???"

    Bedside manner, means Everything. I Always look for the positive. I've seen people get well and go home who we KNEW wouldn't make it through the night. I've seen people get well and come off of hospice, plus have hear of it as well. I've also had patients die in my arms while talking to me and not expected too (not the norm).

    Who is man to say? I chose to focus on Living!

    Thus my self talk became "I Am Healthy, I Am Strong" when I was Everything But:) What we say, what we believe makes so much difference in our outcomes.

    Google......I refrained from it.

    I went through this to support our friends, whose late in life only daughter was diagnosed with a diffuse glioblastoma....non treatable brain stem cancer. She was diagnosed last Feb and died in Nov. Her treatment was chemo and rads, same as us but beamed to a different area.
    We understood without words what they and she were going through without knowing what it is like for your young child to die. That my friends, is the tragedy of it all.

    "This IS the First Day of the Rest of MY Life!" I will make it count!!! Linda
  • IAmStrong
    IAmStrong Member Posts: 58
    D Lewis said:

    Complicated answer here.
    People were pretty blunt with me, and I really appreciated it. I don't believe much in mincing words.

    The ENT who found it didn't say a whole lot, held my hand, asked if he could pray with me, and then referred me to the oncologists.

    I high-tailed it to my GP, who baldly stated that life was really going to get ugly, I was going to need help to eat, I was going to lose all my teeth, and I could expect to be cut, burned and poisoned, and sick as a dog, likely all at the same time. GP admitted that he had called my ENT about my prospects, and that my ENT had stated that my chances were 50/50.

    I did my own homework, connected with some great docs at Stanford, figured out that my chances were a hell of a sight better than the ENT thought, and then started educating my ENT and GP. Poor guys couldn't figure out why I was so insistent they immediately order HPV tests for my tumor biopsies, but they did it. After treatment was done, and I got the clean 3 month PET-CT, my ENT knew not to even argue when I told him to give me the HPV-vaccinations on the slim chance they'd help.

    In my case, the silence was what scared me. I didn't get calm and really rev up for the fight till I heard the honest opinions of my GP.

    Deb

    D Lewis
    I Really like your comment, "Rev up for the fight"....because that is exactly what it is:)
  • DrMary
    DrMary Member Posts: 531 Member
    They stopped smiling
    I knew Doug's rad docs were keeping something from us when they stopped smiling when they did an update with us (almost daily at one point, when he'd lost a lot of weight). He had no more chemo planned and only a few weeks of rads left, but they seemed worried that he was not gaining much weight (even though he'd finally stopped losing). I got one alone and asked what was the big concern - he'd gain the weight back eventually. "We just want him to be in better health, in case we need to extend his treatment." That was the first I'd heard of that possibility - I'd noticed his tumor shrinkage had slowed quite a bit, but I hadn't realized that might cause them to change the treatment plan. Knowing that the doctors were worried scared me, but at least I understood why their concern about his weight loss was so great.

    There was not much we could do about it, other than work on getting him healthy, which we were doing. Then, the tumor started shrinking again, and they were happy, so we were glad we hadn't worried.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    IAmStrong said:

    First Diagnosis, then Second
    First diagnosis was good, I had all information I needed and processed it well. Hubs and I prayerfully made our treatment decisions with the doctor I work for supporting us along with the Head and Neck Clinic support. They recommended a full neck resection because I had a 10% chance of recurrence. Expect neck, shoulder weakness possible mouth drop etc. I was a full time caregiver for my elderly medically challenged parents who both lived with us (I am an only). To me, I could not affort that, we decided 90% said I would Not have recurrence. We monitored closely.

    I found a lump in my neck, lodged right after Christmas. We disagree (my surgeon and I) on my pointing it out to him in late Nov when it was smaller. However, that doesn't matter in the end. I was diagnosed, and in surgery with a modified resection. Two positive lymph nodes, with cancer broken through one and "sticky stuff" around my jugular. Lab was inconclusive whether in penetrated. My surgeon was UNHAPPY with me!!! He told me this was "critical and the next two years will be critical"...and wham, put me under. Not cool. You do NOT tell a nurse this is critical! Critical is life and death momentarily. I freaked, I believed I was going to die then, for over 6 weeks I believed my chances of survival were slim because of the "critical" comment and his harsh demeanor with me. Then came a new lump at my clavical while healing from surgery and awaiting treatment. He was POSITIVE it was cancer and scheduled a PET scan. IF it was anywhere else, he said we no longer would be treating for cure. I prayed my heart out, cried until I could no longer.
    I prayed I could have the treatment I had feared. Praise God, I had no other cancer, and the one he was sure was....was not! His demeanor with me changed.

    My oncologist....I will not speak to him today. He blamed my kidney failure, sickness, anemia, everything on me not drinking enough. I had to beg for a peg tube, my radiologist arranged that for me! My oncologist told me no after drastic weight loss. I puked for two months....constantly. To be noted, I am sensitive to MANY medications. I was surprised at how sick I was though. I begged for enough IV fluids because of my incessant vomiting. Finally I had home health and IV's daily at home (my co workers did this, I have worked agency for 18 years). My co workers caught my decline and I was admitted to the hospital for 2 1/2 weeks for blood, fluids, heck I can't remember all. It was then, that I nearly didn't make it. I had a different team locally then, and they saved my life as far as I'm concerned.

    I saw my surgeon after all of this. My oncologist too, who blamed me totally for where I was. My friend who took me said last month she regrets not going back with me when they initially hooked me up for my last chemo. She says there was an error, I wasn't suppose to get the cisplatin? I am getting my records now. I didn't want my last treatment, I was so sick. He talked me into it with no compassion no interest and his nurse wasn't available to me or the team either. After the last treatment, I lost my kidneys, hearing and developed tinnitus.

    It was a long slow climb back up, but I made it!!!

    If I would have a recurrence one day, chemo is not an option for me. I have NO CHOICE but to beat this, and this is where I see myself! I am working out, doing yoga, have totally changed my eating habits and eat only wholesome food, Nothing processed.

    I had a horrible nephrologist on my second hospitalization. He was on call for my awesome one, he looked at me with his daughter same specialty and said, "Weelll, I hope you make it.", upon my dismissal. Pizzzed me off, something in me recoiled and I could barely speak but told him, "OHHHH! I WILL MAKE IT!". My friend was in the room, looked at me and said, "Did he just say what I thought he said???"

    Bedside manner, means Everything. I Always look for the positive. I've seen people get well and go home who we KNEW wouldn't make it through the night. I've seen people get well and come off of hospice, plus have hear of it as well. I've also had patients die in my arms while talking to me and not expected too (not the norm).

    Who is man to say? I chose to focus on Living!

    Thus my self talk became "I Am Healthy, I Am Strong" when I was Everything But:) What we say, what we believe makes so much difference in our outcomes.

    Google......I refrained from it.

    I went through this to support our friends, whose late in life only daughter was diagnosed with a diffuse glioblastoma....non treatable brain stem cancer. She was diagnosed last Feb and died in Nov. Her treatment was chemo and rads, same as us but beamed to a different area.
    We understood without words what they and she were going through without knowing what it is like for your young child to die. That my friends, is the tragedy of it all.

    "This IS the First Day of the Rest of MY Life!" I will make it count!!! Linda

    your story is a distinct contrast to how mine ended
    I started kind of like you did, but I wsa lucky enough to bolt from the impending mess and luck into a better situation before my actual treatment even started. More luck than skill, that move. When we are a patient, we are many times powerless. Even the "empowerment" of the internet doesnt necessarily arm us any better than we already were. Even being a healthcare provider doesn't protect us from this result. I know you know this. Your post indicates it and I have read enough of your background to know you learned this long ago.

    It is sad to think there are these interactions, in great numbers, out there waiting to trip us. Maybe as many bad ones as there are good ones. My own satisfaction with my current healthcare excepted, I know this satisfaction could end with the retirement, other change of circumstance to my point of entry physicin---- the ENT oncologist.

    Here's to your self-advocacy. And your post speaks eloquently to the need for an advocate. In my case it is my wife. She and I talk this through enough she knows pretty much exactly how to stand in my stead if I'm unable to get the job done.

    Thanks for posting.

    Pat
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    DrMary said:

    They stopped smiling
    I knew Doug's rad docs were keeping something from us when they stopped smiling when they did an update with us (almost daily at one point, when he'd lost a lot of weight). He had no more chemo planned and only a few weeks of rads left, but they seemed worried that he was not gaining much weight (even though he'd finally stopped losing). I got one alone and asked what was the big concern - he'd gain the weight back eventually. "We just want him to be in better health, in case we need to extend his treatment." That was the first I'd heard of that possibility - I'd noticed his tumor shrinkage had slowed quite a bit, but I hadn't realized that might cause them to change the treatment plan. Knowing that the doctors were worried scared me, but at least I understood why their concern about his weight loss was so great.

    There was not much we could do about it, other than work on getting him healthy, which we were doing. Then, the tumor started shrinking again, and they were happy, so we were glad we hadn't worried.

    A Phone Call
    The first that I was difinitively told I have/had C was over the phone at work. Yes, the ENT had told me he suspected the two neck growths were SCC, but that was on the first visit- the same visit I had the needle biopsy on, which did NOT come back Positive. I had called the ENT office, and there was a dispute about the urgency for me to get something done, and the ENT's Nurse just blurted out- "Doctor Dvorak says you have Cancer, Kent..." That was between 8-9AM, and I worked the rest of the day, but it did jolt me some.

    The flipside was the other ENT, who I opted for- he told me about the 95% survival, and that the results of the two surgical biopsies and initial PS/CT told me I had every reason to believe I'd be in that 95%.

    Also, of note, is my appreciation for my Onco, who told me on the first visit in her office that I had to get a PEG and Port, and with what they had planned for me I would be on the Morph. That, again, was my first visit with her, and it didn't take a lotta thought to realize where she was gonna be taking me, albeit with the rad's contribution. And, yes, I had made the Google Images mistake to see the extreme cases- should not have done.

    kcass