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#57503 12-04-2005 02:16 PM
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Minick Offline OP
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My brother has not responded to any of the treatments for his Stage IV tongue cancer. He's had the initial surgery, 37 radiation treatments, numerous rounds of chemo (the current being with methatrexate), and even a new pill, tarceva. Nothing has reduced the tumors that are growing on his neck.

For the last several weeks, these neck growths are bleeding continually. He goes for treatment at the end of one week, and each following Monday he has transfusions to replace the blood he has lost. So far he has had three transfusions!

Is this crazy? The oncologist referred him back to the surgeon, who suggested a procedure similiar to angioplasty where he would enter through the groin and try to stop the bleeding (not sure of the specifics). My brother won't even entertain this option, frankly because I think he has given up. He is in so much pain and is extremely weak.

Can anyone give any suggestions what he can do? I never heard of such a thing as bleeding constantly. When asked what's causing it, he's told it's the cancer. Is this typical?

He is waiting to see another doctor at Sloan Kettering, but apparently there is a "process" before going to get a second opinion.

Which is why I'm soliciting suggestions from this knowledgeable group.

Thanks in advance,

Minick

#57504 12-04-2005 06:23 PM
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There does not have to be a referral to get a second opinion, but he must get there with all his medical records and scans, and insurance or money to have the referral. This is certainly true at MDACC and many others. There should be no reason for any quality doctor to not want to get a second opinion of his patient's situation unless he fears that he hasn't behaved in accordance with accepted standards of practice. Delays, especially in cases that are not responding well, are completely unacceptable. Get on the phone and make lots of noise.

Most docs welcome confirmation that they are on the right track or obtaining a new idea if theirs is not working.

As to commenting on treatments, there must be some misunderstanding about what the surgeon is considering doing.... going through the groin for an oral cancer seems like a long way around things if you get my drift.

Lastly, no matter what the stage of a patient's disease there is no reason for him to be dealing with pain. Pain management is the most basic right of any patient in treatment, and doctors can prescribe additional or alternative medications to bring this under control. This is again something that you should get on the phone to the doctor about and DEMAND that something definitive be done immediately to control the discomfort.

A discussion of the situation with the doctor to get his prognosis is important. Given the rate that this is moving and the lack of response, I would want to know where things were going, and what his impressions are about the future.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#57505 12-05-2005 04:49 AM
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I know Sloan-Kettering can be very responsive when the situation is serious -- we called them on June 30 of this year (for a second opinion on a Stage IV DX) and they set up a morning appointment with head of department for July 5, the day after the holiday. His office admin asst called us on the Friday to be sure we had info on transportation, directions and also, if we needed accomodations. They did want all his scans and I had to drive to hospital where my husband's surgery was done for his pathology slides, otherwise it was pretty painless to get the second opinion.

And Brian is right, it should be expected to get 2nd opinion in serious cases; our Hopkins doc was the one who suggested the various potential consults and was in no way offended by our request.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#57506 12-05-2005 01:11 PM
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Minick Offline OP
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Thank you for your caring responses. Here's what I was told about Sloan: If a patient is currently in treatment, they do not usually schedule an appointment for a second opinion until the patient is at a decision point in between treatments. I told this to the current doctor, and he said he would intercede. I know he sent all the records, so I'm urging my sister-in-law to be more proactive and and keep nagging at the Sloan doctor's office to insist on an appointment.

Some of their reluctance is that my brother is so very weak, traveling into NYC is an ordeal. I will relay Gail's info about their possibly arranging transportation.

I confirmed with my sister-in-law about the groin procedure. So, while I understand this seems like a circuitous route, there must be some reason for it--I will urge her to question further.

Brian, you are correct in wanting a candid discussion of the situation--however, my family is very adverse to candor--particularly if they might receive some tough information.

Thanks again for the postings. If anyone should have further information or suggestions--I monitor this wonderful site daily.

Best wishes. . .

M.

#57507 12-06-2005 04:55 AM
Joined: Nov 2002
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Minick, don't get the wrong impression, MSKCC will not provide more than local bus transportation. Even that is from the various campuses. The trip to NYC will be a lot on him and I would look closer to home. MSKCC is very good, but all the top hospitals share the same protocols. Are they near any major cancer center? Oh, the second opinion rules are very easy to get around, if you have $$ or good insurance. Again, don't get me wrong, they are very good, but that takes money and they will get it.

Glenn


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