My crappy doctors just want to fill their sheduals.
My latest feeling that i am just getting thrown around.
Last wednesday the day before my second chemo session i get a call from the radiation oncologists office saying that they want me to come in to get mapped and mask made the next day.
I explain that i have my second chemo session in the morning and
dont know how i will feel can it be another day. They tell me no the radiation onc is leaving for vacation and will be busy when she gets back i need to do it then.
First of all i thought to myself it will be 7 more weeks till i am to get radiation. And i read how people have had to have masks remade because of wieght loss.
Plus they are supposed to be shrinking my giant lemon sized lymphnode with this 6 weeks of induction chemo , so how are they going to mark and map me now?
I have read people get mask made no earlier than a week or 2 before.
I wanted to switch anyway last week when i found out that the same radiation machine and treatment was availible at the hospital where i am getting my chemo. And my crappy surgical onc had set me up at a radiation place thats was far away ( i was told because of a long standing relationship with a doctor there)
So on chemo days when i getting radiation i wouldnt have to travel and check inn and wait.
So my social worker got me switched and i met the new radiation onc and he tells me he wont make my mask or map me till 10 days before my treatment starts not 7 weeks like the other place was trying to do.( i didnt tell him or complain to him telling other doctors about other doctors doing wrong i think is like telling cops on other cops they dont want to hear it and would never do nothing about it)
My surgical onc the one who was sending me far away to his buddies radiation is the same guy who tried to put in my feeding tube and port a month early just because he had a opening on his shedule. His secretary called me the day before to go in and get operated on when i hadnt even met with med onc or anybody and didnt even have a start date which ended up being 6 weeks later so i was supposed to walk around with a tube for 6 weeks because he had an open spot on his shedule, when i told them i couldnt go in the next day because of other appointments they called back and said ok we will do it next tuesday but first i have to go in for pre admitance anesthesia testing or something so i say well im busy all week can i go in monday , They tell me no you cant go in the day before we need to get the test results and etc. After i hang up the phone i realize they had just called me to operate on me the next day but then when i had to put it off to next week i had to get tested and it couldnt be the day before. I know what happened a spot opened up on his surgery sheduale so he was just going to throw me in didnt care if i have to walk around with a feeding tube i dont need for a few extra weeks. This is the same guy who sent me to radiation onc way across town
Ive got to find another surgical onc now i do not trust this guy. then on the day he finally did my port and peg tube i was shedualed for 10:30 am i was preped put on gurney with IV and ready at 10:30 then left in hallway till 2:30 for 4 hours came in didnt say a word to me. And my chemo nurse said to me my port
is not quite right i have to lay just right and cant move or i beep.
I got a few more complaints but i am in rhode island stuck with just blue cross and medicaid so i dont know who or what help i can get or how to tell when it comes times for surgery who is good.
Thanks Victor

Wow, and this is the USA? I do agree that we have to fight not only our cancer but everyone along the way.

Victor,

How far are you from Boston? Is there any way you can get up to Dana Farber? My oncology team here is wonderful and caring and they do everything they can to make this ordeal as 'easy' as possible.

- Margaret

thanks margret.
I went and got a second opinion or review at mass general,
After not getting a first opinion in 6 weeks from rhode island
i called mass general on a monday and on friday a team of doctors met and went thru me. They called and talked to my medical onc and told me he is a smart guy and his treatment is one they will probibly be switching to in the near future.
Anyway i told them i didnt like my doctors in rhode island but they told me they cant treat me because of my blue cross medicaid being from rhode island.
Ive got 4 more weeks of chemo then 2 weeks rest then 8 weeks of radiation and chemo then 4 weeks rest before surgery.
So ive got about 4 months before surgery .
I am preety much committed to the induction chemo and radiation chemo shedual i am on now but i dont like my surgical onc i can read people fairly well and i can tell this guy is the type that everything he has to do is a hassle and he could care less.
he is just the miserable type.
My mother lives in seekonk mass just over the border from me
switching states now could be a hassle and dont even know the rules of being covered in mass.
You know how you can tell by tone of voice and body language and looking in someones eyes well i can just tell this guy isnt putting the slightest bit of effort into anything hes 52 and hes burnt out and going thru the motions.
Maybe hes got good hands and is a good surgeon,
But i can tell i think a good way to describe it would be
the Labored sound of his voice and facial expressions when he is having to deal with anything.
The several doctors i met with at mass general all seemed interested in what they were doing and my piticular case i could see the wheels turning and hear it in their voices.
Down here my my burnt out surgical onc and my med onc and his nurse practioner i can tell they are just miserible what time is it , get me out of here, ok whatever, next, types.
Actually i think my med onc is a smart guy he is probibly just too busy . My surgical onc is just burnt out and going thru the motions thou.

You know i never read my posts before i submit them because i never would submit them if i did,
So thanks to everyone who puts up with my ramblings
Victor

Victor
Not all doctors are blessed with a fantastic bed side manner,and just because a Doctor smiles at you and looks animated doesn't neccessarily mean they are doing a good job.In my experience sometimes the most stoney faced medics,are the best,they just havent honed their people skills.

[quote=victor53] They called and talked to my medical onc and told me he is a smart guy and his treatment is one they will probibly be switching to in the near future.
[/quote]
I don't see any criticism of your treatment mentioned by the doctors you saw for your second opinion so it sounds like it is a personality clash between you.

My advice would be to get it out in the open ,and discuss your feelings,who knows Victor,he may not be aware what a poor image he is presenting.

Have you ever watched "House" victor.there is a Doctor who really does consider patients to be a pain in the rear,but it doesn't diminish his actual ability as a clinician.

A lot of time and energy can be wasted looking for something better than you have,but if his treatment plan was approved by other doctors,perhaps you should stick with him and try to get over the personality issues.
I see from your posts on the english mouth cancer forums,that you had this second opinion three weeks ago,so your treatment must be well along now how is the lymph node responding?

good luck
liz

Victor,
I am sorry that you are having bad experiences with your doctors. I wouldn't want their job, would you? They deal with patients who are in extreme pain, anxiety, fear and death. It takes a special person to work in oncology. Much of it is just luck of the draw. I had really good doctors and I was very proactive in every aspect of my diagnosis and treatment. None of my doctors were gone during my treatment phase and with expedited tests, etc., it was still about 2 months before treatment started. Maybe you're better off with a doctor who has had a vacation and comes back to this with a fresh outlook and attitude. I am still seeing all of my original doctors (one of which is now a cancer survivor himself) after 5 1/2 years post Tx.

About the mask - you won't lose weight fast enough to make the fit a huge difference. I lost 61 lbs. and they never refitted the mask.

You were wise not to complain to your new doctor - he(she) probably wouldn't comment on it anyway for legal reasons. Cisplatin is typically given in conjunction with radiation so my first day of treatment began with radiation then to trip across the Bay Bridge for infusion.

I have never heard the term "surgical oncologist" before. Do you have a head & neck surgeon or ENT?

If you want to have some insurance about "good" then try and get into a CCC.

This is a tough disease and many here have made extraordinary steps to fight it. I traveled 60 miles each day for RT because the CCC where I was being treated was one of the best. It sucked and as treament progressed and I got sicker and sicker (and weaker as well) it was a very difficult time. The San Francisco Bay Area also has some of the worst traffic in the nation, which just added to the misery.

I am not sure I completely understand your treatment protocol. Correct me if I am wrong. You are currently getting induction chemo, then you will have surgery, and a short break for healing and then you start RT? You may wish to breifly include your treatment protocol in your signature line so we can better understand what you are going through.

thanks everyone i know they cant be nice all the time.
My medical onc is smart and i think his treatment choice was thought out and is the newest treatment.
Theyre are no personality clashes ive only got to see him once for 15 minutes. ive got to see his nurse practioner twice for
15 minutes each time.
My surgical oncologist i got to see once for 20 minutes.
Hes the one i have caught just throwing me around for his own convenience. 1st time trying to throw me in for a peg tube and port 1 month before i had to get it in. Because he had a cancelation. Then he sent me to a radiation place way across the whole city, ( because i was later told of a long standing relationship) When i could get the same treatment from an even newer better machine right at the same hospital im getting my chemo. And my social worker who got me switched actually told me today that the radiation place told them i was right that they shouldnt have tried to have me to come in and map me and make my mask 7 weeks in advance. I also have found out that the hospital machine is newer and has alot less patients the other place is a factory private place that a bunch of doctors invest money in.

I grew up as a contractor builder from a family of builders surrounded by tradesmen. Theres alot simular with this doctor business you get to tell who is smart, who is burnt out, whos sending you to someone or someplace because theyre getting a kickback.
Every business and life is full of the good and bad the selfish
lazy ones . Try to find a good honest builder or auto mechanic your blessed if youve got one and blessed if theyve got the time for you.
Anyway im just writing it here because complaining to them is not going to change them. i just feel this surgeons only concern is his shedule I just feel hes the kind of guy who if hes operating an situation comes up and theres a choice of something to do hes not going to choose the one that will require more work or agrivation for him.
I figured out how to get out of the radiation factory he tried to send me to and get into the hospital by using transportation as an excuse.

now ive got to figure out how to get a surgeon i trust ive got almost 4 months to do it. maybe i can get some of that robotic surgery ive been reading about.
I never reread my posts because i would never submit them if i did.
Thank you Victor

Victor
I sincerely hope you find a team that you can have confidence in.
Trusting your Doctor is so important when going through this treatment, no matter how clever they are supposed to be if you don`t trust him he is not the one for you.
Apart from that.. I wanted you to know my husband had a similar diagnoses to yours and is now five years out!
Take Care
Marica