Doc visit

forme

Hi All,
Well, I have news, and not so great. I had to stop by my Dr office to pick up an rx, it was the end of his work day. Thought it was a quick in and out. Nope, he wanted to go over stuff with me and just check me out. Spleen is still very enlarged and tender to the touch. Nothing new. Then he tells me that had gone over my ct and pet/ct and was concerned. He said that one of my salivary glands was showing hot and also my mandibular/jaw on the same side. I asked why he didn't tell me this before and he said that he was waiting till after the rads in Nov. WHAT B.S. To not tell me and then to tell me like that is B.S. So now I know it's in my jaw and parotid. I am some what in a state of dis belief. He said that hopefully the rads will take care of it and we will go from there. Am I crazy or is this guy crazy. maybe he thought that one of the other docs was going to tell me. But no one did. I was so shocked that I didn't even ask him that question. He is planning on calling me tomorrow to talk more about everything.
I just am so angry and feel lost in the system. It's hard to be so tired and have such a big fight to win. I'll fill you in after tomorrows phone call. ( this is the doc who charges for phone calls).....
Lisha

Hey John, you have great advice, I could really use some right now and can I borrow your soapbox..

COBRA666

Advice
Lisha,
It does sound like a lot of bullshet your Dr. is shoveling to me. We are talking about a persons test results here. Thats why we have the test to begin with. You are having those scans to check the hot spots. Thats why we all have those tests. When the radiologist reads those scans they list everything they see concerning the reasoning for the test. If it is mentioned in the report it is a reason to be concerned unless the radiologist states otherwise. They use words like consistant with diagnosis or most likely derived from and of course the $5 medical words we can not understand. They will go from head to toe with their findings in each area and remark with their impression. When it was remarked in the report of hot spots found in salivary and mandible area by the radiologist your Dr. should have made it known to you. Like I was saying thats what the test boiled down too. Some Drs. will leave you in the dark. I always get a copy of all my reports from blood work to x-rays to all scans. That way I can go over it myself and read the final impressions of the radiologist. Those hot spots are important to know about when they find out about them. They are in your body and you should be aware of whats going on. Get a copy of the report and you will see what they are checking for. It will say right in the beginning of the report Patient has lymphoma. That way the radiologist knows what info is the onc. dr. is asking about. They are checking the internal organs as well, such as the liver,stomach,pancreas,colon,large intestine.etc,etc for any uptake in activity. If there is any activity they will note it.Just like it was noted about the salivary and mandible area. I would be a little pissed and to be honest it would make me a little worrisome about my Dr.Some may say thats a bit drastic to feel that way, but I bet everytime they go in for an appt.they would be thinking.Are they telling me everything I should know?
Just try and get a copy of your reports. It should be no problem and they should be free of charge,so you have peace of mind and know what is going on for yourself. John
(FNHL-1-4A-5/10)

vinny59

fight
Lisha, don't get down, it's hard, real hard, but keep fighting. I agree with John, get the report's, and I would go see another Doc.,you need a Doc. you can trust! Vinny

tcvine

Docs
Hi Lisha,

So sorry to hear about this salivary and jaw involvement. It sounds like this was always there, but they didn't tell you about it. That sucks! I'm so sorry.

I have to agree with John and Vinny on this. If it is possible, I would seek another oncologist. Not just because of this, but other things you've mentioned. (However, I don't know where you are or what the realistic possibilities might be, so it may not be possible.) If you can, is there a major cancer center anywhere that you could get to? When I was diagnosed, we were very surprised to find out that I could get into M.D. Anderson just by calling them myself - no doctor referral. Even though it is a 5 hour drive one way, it is worth it for me.

At least try to explore some alternatives if you can.
You have my best wishes and prayers.
Tom (DLBCL-4-7/10)

truckingalong

I know how u feel
Lisha,

I was not happy with my first 2 doctors because they were wishy-washy about tests and what to do with my symptoms before I got diagnosed more than a year later. Now I am satisfied with my 3rd doctor. Do not give up. Have others support or do research for you - I know you have limited energy. Do what you can. Now I have to fight to stop the unneeded spread of cancer I have from prolonged finding of this diagnosis. John's and others' suggestions sound good.

Best of luck and in prayers,
Liz

yesyes2

PET Results
Hi Lisha,

Let me start by saying this really sucks. What kind of an idiot doctor do you have anyway? I'm afraid your going to tell me this Onc is one of the Stanford docs. Wherever he is from you need to see/find someone else. What John had to say is very good advice, these reports are yours and you should get not only a hard copy of every scan and test but also a CD to keep for your files. What came to mind for me is that at this point how do they know which of your cancers is in the jaw and gland without doing a biopsy. Doesn't make sense to me to radiate without knowing what your trying to kill. Also what is the SUV on these sites. On my PT from Dec 09 my tonsil lite up. My Onc didn't feel it was anything to be conserned about, either did my Hemo/Onc from UCSF and am ENT who looked at the scan. Todate no action has been taken and I have not had another PET, my CT scans don't show the throat. Sometimes I wonder about it but have not had any problems and sure hope it is OK. I have had 3 or 4 false positives on scans so yours may still be OK.

Please let us know what happens. We all care about you and wish you the very best.
Leslie

allmost60

Just not right!
Hi Lisha,
I'm so sorry this happened. With everything else you have been through, on top of feeling so fatigued, this is the last thing you needed heaped on your plate. I agree with everything John, Vinny and the others have suggested. When I had my biopsy done and received the pathology report, it allowed me to research the findings and get a better understanding of what was going on in my body. Having a hard copy of your test results is very important. In the event that you do find another doctor it will also help having all of this information to show him/her to avoid added tests that may not be needed. I've come to realize that we just can't take it for granite that our doctors are always on top of things, because the minute we do, we get blindsided with something outrageous that turns our world inside out. I'll keep good thoughts that you get this doctor situation resolved before you start radiation in November.. Love...Sue (FNHL-2-3A-6/10)

forme

COBRA666 said:

Advice
Lisha,
It does sound like a lot of bullshet your Dr. is shoveling to me. We are talking about a persons test results here. Thats why we have the test to begin with. You are having those scans to check the hot spots. Thats why we all have those tests. When the radiologist reads those scans they list everything they see concerning the reasoning for the test. If it is mentioned in the report it is a reason to be concerned unless the radiologist states otherwise. They use words like consistant with diagnosis or most likely derived from and of course the $5 medical words we can not understand. They will go from head to toe with their findings in each area and remark with their impression. When it was remarked in the report of hot spots found in salivary and mandible area by the radiologist your Dr. should have made it known to you. Like I was saying thats what the test boiled down too. Some Drs. will leave you in the dark. I always get a copy of all my reports from blood work to x-rays to all scans. That way I can go over it myself and read the final impressions of the radiologist. Those hot spots are important to know about when they find out about them. They are in your body and you should be aware of whats going on. Get a copy of the report and you will see what they are checking for. It will say right in the beginning of the report Patient has lymphoma. That way the radiologist knows what info is the onc. dr. is asking about. They are checking the internal organs as well, such as the liver,stomach,pancreas,colon,large intestine.etc,etc for any uptake in activity. If there is any activity they will note it.Just like it was noted about the salivary and mandible area. I would be a little pissed and to be honest it would make me a little worrisome about my Dr.Some may say thats a bit drastic to feel that way, but I bet everytime they go in for an appt.they would be thinking.Are they telling me everything I should know?
Just try and get a copy of your reports. It should be no problem and they should be free of charge,so you have peace of mind and know what is going on for yourself. John
(FNHL-1-4A-5/10)

I am just not me
Hi John and all of you,
This really brings it home, the fact that I am not with it. I always get copies of records, scans etc. But this past bunch, I was so over whelmed that I never even remembered to to so. I will get the copies for my files. I have always gone over everything with a fine tooth comb. Thats the nurse in me..LOL. I am assuming for now, that this is more mets from the thyroid ca. But it does need to be clarified. The doc who told me this info is not my onc, but my pcp. I will ask him today why I wasn't told about this. I let you all know what he has to say. I also have a call in to my onc. I will also let you know what she has to say...
Clearly the combination of fatigue, stress, pain and everything else going on in my life is getting to me. Thank you all for your quick replys. I knew I could count on all of you for great advice and support. My world is a much better place with all of you in it....
Peaceful healing
Lisha
BTW I posted a picture in my expression page of the wonderful birthday desert I had in florida. I just wanted to share with all of you. Click on the pic to enlarge it. YUMMY...

COBRA666

forme said:

I am just not me
Hi John and all of you,
This really brings it home, the fact that I am not with it. I always get copies of records, scans etc. But this past bunch, I was so over whelmed that I never even remembered to to so. I will get the copies for my files. I have always gone over everything with a fine tooth comb. Thats the nurse in me..LOL. I am assuming for now, that this is more mets from the thyroid ca. But it does need to be clarified. The doc who told me this info is not my onc, but my pcp. I will ask him today why I wasn't told about this. I let you all know what he has to say. I also have a call in to my onc. I will also let you know what she has to say...
Clearly the combination of fatigue, stress, pain and everything else going on in my life is getting to me. Thank you all for your quick replys. I knew I could count on all of you for great advice and support. My world is a much better place with all of you in it....
Peaceful healing
Lisha
BTW I posted a picture in my expression page of the wonderful birthday desert I had in florida. I just wanted to share with all of you. Click on the pic to enlarge it. YUMMY...

BIRTHDAY DESERT
Lisha,
How dare you to post a picture like that and leave me with my tongue hanging out. hahahaha John

forme

COBRA666 said:

BIRTHDAY DESERT
Lisha,
How dare you to post a picture like that and leave me with my tongue hanging out. hahahaha John

Sorry
John,
I had to share, I only wish I could have packed it up multiple servings and shipped to all of you. It was a big help in my mood. I wanted to be home with my family for my bday, but since I couldn't, this made up for it.
Lisha

allmost60

forme said:

Sorry
John,
I had to share, I only wish I could have packed it up multiple servings and shipped to all of you. It was a big help in my mood. I wanted to be home with my family for my bday, but since I couldn't, this made up for it.
Lisha

mmmmm..yummy!
That looks soooo yummy Lisha! Something new for me since round 2 is my appetite. My chemo nurse said it is caused from the pred. The week of taking the pred my appetite is down, but the next 10 to 15 days I'll eat anything thats not nailed down! I've gained about 5 pounds since August 31, round 1, but I can stand to gain some weight, so I'm ok with it.
Love...Sue

yesyes2

allmost60 said:

Just not right!
Hi Lisha,
I'm so sorry this happened. With everything else you have been through, on top of feeling so fatigued, this is the last thing you needed heaped on your plate. I agree with everything John, Vinny and the others have suggested. When I had my biopsy done and received the pathology report, it allowed me to research the findings and get a better understanding of what was going on in my body. Having a hard copy of your test results is very important. In the event that you do find another doctor it will also help having all of this information to show him/her to avoid added tests that may not be needed. I've come to realize that we just can't take it for granite that our doctors are always on top of things, because the minute we do, we get blindsided with something outrageous that turns our world inside out. I'll keep good thoughts that you get this doctor situation resolved before you start radiation in November.. Love...Sue (FNHL-2-3A-6/10)

Your so right
Sue, what you said is so right on, as soon as we take everything for granted we get blindsided. That's why I have such a trust problem. As soon as I trust my doctors they do something to shake up that trust. But it's just not a good way to live.
Leslie

forme

allmost60 said:

mmmmm..yummy!
That looks soooo yummy Lisha! Something new for me since round 2 is my appetite. My chemo nurse said it is caused from the pred. The week of taking the pred my appetite is down, but the next 10 to 15 days I'll eat anything thats not nailed down! I've gained about 5 pounds since August 31, round 1, but I can stand to gain some weight, so I'm ok with it.
Love...Sue

Wishing
Hi Sue,
I wish that was my problem. Since all of this began, I have only gained. Same thing happened last time I had the thy ca. I have been a stable normal weight since, but now only seem to go up. Even when I don't eat!!!
Oh well, I am sure that the rads will work their magic and I should lose all the new crazy weight I have found.
Lisha

COBRA666

forme said:

Sorry
John,
I had to share, I only wish I could have packed it up multiple servings and shipped to all of you. It was a big help in my mood. I wanted to be home with my family for my bday, but since I couldn't, this made up for it.
Lisha

YUMMY DESERTS
LISHA,
I WAS ONLY KIDDING ABOUT THE DESERTS, BUT THEY DID LOOK RATHER TASTY. I GO ALONG WITH SUE ABOUT THE AFTER EFFECTS OF THE PRED. THE COFFEE TABLE WAS STARTING TO LOOK GOOD RIGHT AFTER THE PREDS KICKED IN. JOHN
(FNHL-1-4A-5/10)

dixiegirl

yesyes2 said:

Your so right
Sue, what you said is so right on, as soon as we take everything for granted we get blindsided. That's why I have such a trust problem. As soon as I trust my doctors they do something to shake up that trust. But it's just not a good way to live.
Leslie

Crap
I am so sorry you are dealing with even more. I agree with everyone else, get another opinion. Ask your doctor the hard questions, and don't take what you think is wrong. I once read a discussion thread with a woman who's onc wasn't listening to her. He kept ignoring her questions and she got fed up. She grabbed his tie and pulled him down eye to eye and said "You WILL listen to me. You WILL give me your full attention right now". She said his eyes lit up big and they came to a better understanding very quickly LOL.

We shouldn't have to do that, but do what's necessary. If you don't have the energy to do it yourself Lisha, get an advocate who can step in for you. Don't settle for less.

You are in my heart and prayers and I think of you often throughout the day. Desert looks AWESOME!

Take care,
Beth
Stage 3 LPL/MALT/Follicular 4/2006