Docs and the Truth

longtermsurvivor said:

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

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

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

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