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Incremental Improvement


icbn

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I got a written copy of my PET scan Monday and the official word from my Onc today. The report stated that the SUV of the Lymph Node has decreased from 12.0 to 6.5. Its size remains at 2cm.

I assumed this meant I'd be in for more Chemo or Radiation.

The Onc said no. It was great news. My Radiation stopped on 3/6 and the PET on 3/31. The Lymph Node will continue to decline. He is very pleased. I made a mistake and said, "When I first saw the report I thought it was bad news. I thought the node would be fried."

The Onc said I am Brusk and confrontational. He said I may not be aware of it but I am. I'm definitely not aware of it because I've never had any disagreement with his findings or anything else. If I ask a question its because I don't understand. But I ask to learn not to question his diagnosis or prognosis.

Then he said that he's the expert whose been doing this for 30 years and I'd just have to trust him.

This has blown my mind. I have always enjoyed this guy. I never questioned any decisions he's made, everything has been fairly straight forward. Just the basics for LC treatment. I had and have no agenda except to listen.

For the last month of radiation and its afterglow of fatigue I have been trying to "get my affairs in order" to do all I can for my wife in my absence just in case. It has been an uphill battle that has made me feel worthless. His comments have leveled me to a grade below that now.

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Wait a second, you should be happy, so BE HAPPY. This is good news, right? So, the messenger let you down today. May sound dumb, but maybe he was offing an "off" day. You have trusted and valued him for a while, right? Celebrate the message. Forgive the messenger.

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I am glad you are doing well. Don't be upset over the misunderstanding-- it's his problem, not yours. No crime in asking questions and if he's threatened by that then maybe he's not the doc for you. Glad you checked in with us.

Rochelle

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I agree it was and is great news. I hate to sound unappreciative. My problem is the irony that when I finally get some good news it is sullied by the Onc's blow up.

The best thing to have come out of this day is the great fellowship here. Thanks LC Gang.

Bill

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Bill,

Congrats!

As for the doctor being the expert of 30 years, etc., maybe you should inform him that as for YOUR body, YOU are the expert of how many years? Geezzzz, THAT might be brusque and confrontational! Whatever... Heck, if he fixes it and makes it all better, ya don't gotta kiss him! :wink:

Celebrate, and give him a break - this time. He could have just been having a bad day, his wife coulda met him at the door with a rolling pin the night before and told him where he could stick that stethascope if he didn't get his boxers to the hamper... Well, it COULDA happened...

Take care,

Becky

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You should never feel that you have to apologize for being proactive about your own healthcare and your own life. Your doctor is the one who is off base here. He knows how serious this awful illness is and he should be doing all that he can to take all the stress out of anything that he can for you. I had a doctor in the beginning who would not give me my PET scan reports. I learned how to go around her and get them myself and then I got rid of her sorry self when she told me that I was expecting too much.

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Glad to see your name here,

and happy about the news.

For the confrontational remark, just

file it away in your memory for the

next time you see him. Wear white gloves

next meeting.

It is your body and you know it for

so many years so that must be more than his

30 years of practice.

You are the patient and you assume that more

chemo could be needed, that is very normal

you don't have his 30 years of practice

but you have lc.

Don't let it mar the good news you had.

Easy to say but I know how you feel, I,m

in the same situation with my GP and still

have not find a way to clear the air.

Congratulations Bill.

Jackie

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Congrats on the good news! As for the onc., his 30 years of practice don't make him immune to questioning at all -- as just about everyone else has said, it's your life and your treatment journey, not his. Don't ever believe that you're confrontational for wanting to know and understand what's going on. Hopefully he was just having a bad day. Please don't be discouraged.

Hugs,

Linda

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Great news and PLEASE don't let someone who probably just had a fight with his wife upset you. Everyone is human and unfortunately we are probably so much more fragile than most. Go out and enjoy this good news and just forgot your doc ever said that.

Joan

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I'm joining in with the "great news gang," but I think you have a legitimate gripe.

We had a ped. years ago who took a full year to "forgive" me for asking for a pertussis test on my infant son. Turned out he had RSV, but there was a horrible outbreak of whopping cough in our area that year, and I wanted to be sure. She told me it was a waste of time, and I told her I had good insurance. She eventually quit making snappy comments to me, and we eventually built a good relationship. She was a very good Dr.

You have the right to ask questions. Don't let him make you gun-shy. It could have just been an off day for him. Shame on him for stealing your good news day!

We'll all celebrate with you now!

:) Kelly

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Wonderful, wonderful news, Bill!!!! I am celebrating with you, for sure I am :lol: !

Now I WON'T get on my soapbox about inept doctors.......no I won't. But this guy needs a good big chill pill, for sure! Seems like you made an innocent.......maybe even light-hearted comment.........and this howdy-doody took offense. Well, he will NOT spoil my good mood right now. Don't allow him to spoil yours!

Kasey

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I am glad you don't have to do more chemo and the uptake is going down Bill.

I had a similar experience with a radiation oncologist at my last consultation at Swedish Cancer Institute in Seattle. He did not get real upset or anything, but made some comment about how he was the leading expert or something, I don't remember his exact words, but I got the impression he was a little bit defensive. It did not make a huge impression on me. I just kept asking away with my questions. He was the last specialist I consulted with out of 4 that I saw there. I think I kind of impressed them because I was well organized and could speak a little medical jargonese. Apparently they don't get many self advovcates. They are, however, the best medical team I can find regionally and I like them. I think I will mention to the radiation oncologist sometime, that the main reason I ask so many questions is because I want to know as much as I can about my disease and its treatment. It is the way I cope with having this d__n disease. I know others don't want to know anything, that is the way they cope, but I am not one of them.

Don M

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So very thankful for your good news. Just wonderful. The docs are all human beings and have their own set of problems but we can't let them control us or our behavior. If he feels threatened by questions maybe a different doc would be better for you So thankful to God for your good news. pammie

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1) Congrats on great results.

2) Your doctor may have been having a rough day. They see a lot more of this disease I think than we do on a daily basis. Debs Onc was home on the holidays for a few hours in the morning and he would be back at the hospital with his terminal patients for hours on end. I used to catch him at 5 am when deb was in hospital. That was the only time he could make rounds because he was so swamped in the clinic. These are my experiences and thoughts so don't get mad if you disagree. JUST A THOUGHT.. Saying prayers and Congrats on the good news really!!!

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Hey Bill,

I'm sorry I missed this post yesterday.

First of all- WONDERFUL news. You must celebrate and enjoy it, you worked hard and went thru hell to get where you are. Be happy for this news.

My heart hurt when I read your post about the doctor and him CONFRONTING you and how that made you feel. Yes, he may have had a bad day, yes, he may have been taking it out on you...yadda yadda.... does'nt matter to me what HE is going thru- for those 30 or so minutes that he is talking to you and treating you- it is ALL about you.

Depending on your nature, you can cut the guy some slack and give him another chance because of your history together- or you can talk to him and see where it goes. Either way, you can't be secure in your medical treatment OR him, if you let this eat away at your hope and confidence in him.

It may come down to a misunderstanding and some apologies, or you may end up getting a new doctor altogether- but whatever the case,

you deserve a doctor who is intelligent enough and secure enough to appreciate a patient that is advocating for their own survival, who wants to learn all they can about their disease and treatment and who is willing to work side-by-side with a patient to reach success and survival.

It's your life and your survival we are talking about. You shouldn't be made to feel badly for wanting and doing everything you can to beat this disease.

Many positive thoughts going out to you, friend. I'm celebrating this good news with you today.

Hugs,

K

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