(Liza) Johns Hopkins and the fake "Multi-Disciplinary Approach"
Last Friday we went to Johns Hopkins for a meeting with a "Multi Disciplinary Team" approach. Dad scheduled this appointment which was suggested by his onc Dr. Lessin at Wash Hosp Center - don't know why. Maybe because we are considering radiation for the two new liver mets, and Lessin was unable to get us an appointment with Nancy Kemeny until late November? Don't know.
When Dad was first diagnosed I saw a newspaper article with a statement just made by American Cancer Society I think, recommending the "multi disciplinary approach" for initial diagnosis of every new cancer patient. Got a list of hospitals that do it, tried to get my Dad to see one of these, but he wouldn't hear of it - he felt all he needed was the one doctor, who, since he was such a great doctor, would be a multi-disciplinary team unto himself - a team wrapped into a single person.
Anyway, here it is seven months later, and now he's ready to see a team.
So we go to Johns Hopkins for this big meeting. So first we meet for about 20 minutes with a delightful young man, a nurse practitioner, who takes the entire history of my Dad's case from scratch, taking copious notes.
Of course we had already sent him the entire history of my Dad's case, with all Dr. Lessin's and our detailed notes about it, beforehand. But that's okay - we didn't mind telling it all over again.
Then in comes Dr. Donehower, alone. Big tall man, overweight, imposing, not particularly friendly. He takes the seat at the desk now, the nurse practitioner sits over in the corner with a pad to take notes.
We ask about the multidisciplinary team - where is the rest of the team?
Donehower tells us that the procedure is for him to meet with us, and then next Tuesday in the evening he will meet with the other doctors on the team to discuss our case. He said that's how they do it, because it's hard to get all the doctors together in one room. And then after their meeting, he will make a recommendation to our onc, Dr. Lessin by phone.
But he says can tell us right now that he knows exactly what the team will say. They will recommend no surgery, no removal of the two mets, since there is a liklihood that more mets will show up soon, and they won't want to perform surgery again and again. Instead, they will recommend trying to shrink the tumors with chemo - CPT-11 by infusion not HAI (since these ports are not without their troubles he says - hepatitis, clots, infections - he doesn't believe in them, doesn't recommend HAI).
He says this way we will know, for future mets, whether my Dad's cancers are susceptible to CPT-11 or not. And then when other mets turn up, we'll know already if CPT-11 will be able to kill them.
I asked about the ability of a cancer to mutate to become resistant to chemo - wouldn't that happen?
He said every cancer becomes resistant to every chemo - that is simply the facts of how chemo works. He said that the length of time this takes to happen varies from two months to two years, and you can never know for each individual which chemo will work
longer and which will work shorter. He said that because two mets were able to grow while my Dad was on 5FU that shows that 5FU does not work against my Dad's cancer.
He flatly did not want to discuss radiotherapy. He said they don't do it there, and he had not heard anything about it anywhere else. Never heard of it.
He seemed angry at the mention of this, in fact got up to leave after telling us his recommended course of action, and seemed put-upon to have to stay to answer questions after he had made clear the best course of action.
But, I though okay - I've got to ask questions even if I appear to be a total dummy here, or perhaps irritate him by making him stay longer than he had planned. So trying to be clear and friendly at the same time, I described what we have been able to find out about radiosurgery - and our opinions about the bad rap it has gotten in the US because of Lederman's used-car approach at Staten Island, and what we had found out about trials being conducted around the US that were providing some real data on this procedure, at reputable teaching facilities, etc.
So I said this, and when I finished he sat back down, sort of slammed back down really, highly perturbed, and said in the weirdest strange squeaky voice - not looking at us at all but but only looking and talking to the nurse,
"We've had some patients come see us from Staten Island - they've been very happy with the procedure - haven't they? Yes yes come to think of it we just saw a few last week who have had this done and they've been pleased."
It was just plain weird. Dad and I didn't know what to say or do it was so awkward suddenly. I have NO idea what in the world motivated this peculiar behavior or comments, and it was confusing since he had just told us five minutes earlier that he had never heard of this procedure and knew nothing about it.
Then he suddenly just got up and left the room, leaving us with the nurse to figure out in embarrassed voices which records and papers went where, and that was it.
So Monday morning my Dad called the nurse at Johns Hopkins, to find the name and email address of the radiation oncologist that is part of the multi-disciplinary team, so he could send him informatiion on the facilities for radio surgery that he's considering, and our questions about it, to get his opinion. And guess what ... Donehower's nurse said there IS no radiation oncologist who is part of the team. She said there is no Tuesday meeting, either. She's looking, there's nothing she sees, no, Dr. Donehower doesn't seem to have any such meeting on his schedule. She says that as far as she knows when Dr. Donehower meets with a new patient he discusses the case with the surgeon that he always works with, and that is what my Dad must be thinking of.
Okay, so I am writing this story now for anyone else out there who might be considering Hopkins for this multidisciplinary team approach - so you can check up on it yourself to see how (if) it will be handled. Or for anyone going to other hospitals for this service - check first and see precisely what they mean by "multidisciplinary."
We have decided to do radiosurgery to remove the two mets we know about. I don't understand his rationale about not removing them, to see if chemo can shrink them.
But what chemo should we use, and when, and how, after the mets are removed? CPT-11 or Oxaliplatin? Is CI best? Should we do HAI too? This doctor scared us about complications with the HAI.
Liza
Daughter of Dad; 76 yrs. old; Stage IV; Tumor removed from caecum
3/00; Second surgery to remove impaction and adhesions 8/00; Right
lobe of liver removed 3/01; 5FU+leuk weekly low-dose 4/01- 8/01; PET
9/01 shows 2 liver mets 8 and 10 mm
When Dad was first diagnosed I saw a newspaper article with a statement just made by American Cancer Society I think, recommending the "multi disciplinary approach" for initial diagnosis of every new cancer patient. Got a list of hospitals that do it, tried to get my Dad to see one of these, but he wouldn't hear of it - he felt all he needed was the one doctor, who, since he was such a great doctor, would be a multi-disciplinary team unto himself - a team wrapped into a single person.
Anyway, here it is seven months later, and now he's ready to see a team.
So we go to Johns Hopkins for this big meeting. So first we meet for about 20 minutes with a delightful young man, a nurse practitioner, who takes the entire history of my Dad's case from scratch, taking copious notes.
Of course we had already sent him the entire history of my Dad's case, with all Dr. Lessin's and our detailed notes about it, beforehand. But that's okay - we didn't mind telling it all over again.
Then in comes Dr. Donehower, alone. Big tall man, overweight, imposing, not particularly friendly. He takes the seat at the desk now, the nurse practitioner sits over in the corner with a pad to take notes.
We ask about the multidisciplinary team - where is the rest of the team?
Donehower tells us that the procedure is for him to meet with us, and then next Tuesday in the evening he will meet with the other doctors on the team to discuss our case. He said that's how they do it, because it's hard to get all the doctors together in one room. And then after their meeting, he will make a recommendation to our onc, Dr. Lessin by phone.
But he says can tell us right now that he knows exactly what the team will say. They will recommend no surgery, no removal of the two mets, since there is a liklihood that more mets will show up soon, and they won't want to perform surgery again and again. Instead, they will recommend trying to shrink the tumors with chemo - CPT-11 by infusion not HAI (since these ports are not without their troubles he says - hepatitis, clots, infections - he doesn't believe in them, doesn't recommend HAI).
He says this way we will know, for future mets, whether my Dad's cancers are susceptible to CPT-11 or not. And then when other mets turn up, we'll know already if CPT-11 will be able to kill them.
I asked about the ability of a cancer to mutate to become resistant to chemo - wouldn't that happen?
He said every cancer becomes resistant to every chemo - that is simply the facts of how chemo works. He said that the length of time this takes to happen varies from two months to two years, and you can never know for each individual which chemo will work
longer and which will work shorter. He said that because two mets were able to grow while my Dad was on 5FU that shows that 5FU does not work against my Dad's cancer.
He flatly did not want to discuss radiotherapy. He said they don't do it there, and he had not heard anything about it anywhere else. Never heard of it.
He seemed angry at the mention of this, in fact got up to leave after telling us his recommended course of action, and seemed put-upon to have to stay to answer questions after he had made clear the best course of action.
But, I though okay - I've got to ask questions even if I appear to be a total dummy here, or perhaps irritate him by making him stay longer than he had planned. So trying to be clear and friendly at the same time, I described what we have been able to find out about radiosurgery - and our opinions about the bad rap it has gotten in the US because of Lederman's used-car approach at Staten Island, and what we had found out about trials being conducted around the US that were providing some real data on this procedure, at reputable teaching facilities, etc.
So I said this, and when I finished he sat back down, sort of slammed back down really, highly perturbed, and said in the weirdest strange squeaky voice - not looking at us at all but but only looking and talking to the nurse,
"We've had some patients come see us from Staten Island - they've been very happy with the procedure - haven't they? Yes yes come to think of it we just saw a few last week who have had this done and they've been pleased."
It was just plain weird. Dad and I didn't know what to say or do it was so awkward suddenly. I have NO idea what in the world motivated this peculiar behavior or comments, and it was confusing since he had just told us five minutes earlier that he had never heard of this procedure and knew nothing about it.
Then he suddenly just got up and left the room, leaving us with the nurse to figure out in embarrassed voices which records and papers went where, and that was it.
So Monday morning my Dad called the nurse at Johns Hopkins, to find the name and email address of the radiation oncologist that is part of the multi-disciplinary team, so he could send him informatiion on the facilities for radio surgery that he's considering, and our questions about it, to get his opinion. And guess what ... Donehower's nurse said there IS no radiation oncologist who is part of the team. She said there is no Tuesday meeting, either. She's looking, there's nothing she sees, no, Dr. Donehower doesn't seem to have any such meeting on his schedule. She says that as far as she knows when Dr. Donehower meets with a new patient he discusses the case with the surgeon that he always works with, and that is what my Dad must be thinking of.
Okay, so I am writing this story now for anyone else out there who might be considering Hopkins for this multidisciplinary team approach - so you can check up on it yourself to see how (if) it will be handled. Or for anyone going to other hospitals for this service - check first and see precisely what they mean by "multidisciplinary."
We have decided to do radiosurgery to remove the two mets we know about. I don't understand his rationale about not removing them, to see if chemo can shrink them.
But what chemo should we use, and when, and how, after the mets are removed? CPT-11 or Oxaliplatin? Is CI best? Should we do HAI too? This doctor scared us about complications with the HAI.
Liza
Daughter of Dad; 76 yrs. old; Stage IV; Tumor removed from caecum
3/00; Second surgery to remove impaction and adhesions 8/00; Right
lobe of liver removed 3/01; 5FU+leuk weekly low-dose 4/01- 8/01; PET
9/01 shows 2 liver mets 8 and 10 mm
posted by Liza May at 2:25 PM
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