So much for shrinking lymph nodes and normal blood work

[mercyriver]

Not that anything is "abnormal"...but I don't think we honestly can tell!

We went to his appointment with the oncologist yesterday. Found out when they said his lymph nodes shrank, they were comparing it to the last CT, not PET/CT, the last CT was in November....yeah duh they shrank. Then the oncologist tried to convince us that he should use the December PET/CT....no....that won't work either. Finally we got him to look at PET/CT from April. I don't have a copy of the report from the June CT (YET), but from what he was saying and what I remember, they are about the same size. Like I said though, we really can't tell. He said the lymph node measurments on a CT and then on a PET/CT can be different.

Very helpful.

They also did NOT take blood for markers, just for a CBC. I honestly don't know what these people are thinking sometimes!!!!

No his tumor markers haven't been abnormal since before his orchiectimy...but still!!! Geez!

So they are doing tumor markers in July. They will do another CT in August or September and another PET in October.

Thankfully they are also sending the latest CT results to the urologist...who is ALWAYS more on top of things then the Onc.

So I am really trying not to worry. I am just glad I got to ask the Onc, rather then letting it fester in my brain.....

My husband was talking about finding an onc closer to home and his work, so he doesn't miss so much work for appointments....maybe I need to push on that one more!

Becki

[Already Bald]

Becki,
Unless you are planning more surgery (ei: RPLND) your Oncologist should be your "Attending". And is sounds like you need a new Oncologist.
Must be a terrible feeling to not have faith in your doctors- I am fortunate that I am close enough to PENN so that I am treated by Dr. Vaughn.
I would ask your Urologist, who you seem to have trust in, if he can recommend another onc.
Best,

[Margaret]

Ugh Becki, that must be so frustrating!! Don't you hate it when you feel you are more concerned and on top of things than the doctor you are depending on??!! I would find a doctor closer to home and one that you trust more.

I am sorry!

[mercyriver]

Thanks guys....

Good news is, I was looking at the cancer center (same group that we go to right now)....that is less then a minute from where he works. And one of the medical oncologists they have on staff did his fellowship at Sloan-Kettering .......could almost kick myself for not finding him before....

Clearly I hope it will never matter!

Becki

[oscar666]

hi

Unfortunately, these modern and expensive scans are still far from perfect diagnostic and monitoring tool, especially for TC follow-up. This is one of my reasons to take the RPLND way. And doctor’s and whole system negligence is the other reason. Last time I had to spell the tumor marker’s abbreviation in order to add them into the standard pre-op blood test (The doctor was a nice 80 years old guy and he trusted me and wrote AFP and bHCG ) . I found that I am actually on surveillance, and I have not blood test last month.
That’s it. I am preparing myself to the RPLND “choice”, which after all my efforts was scheduled 9 weeks after I/O.
I am a regular patient living Montreal, Canada.
So far I had 2x15 minutes discussions with doctors at all. One with urologist and one with oncologist. My I/O is made by a (really very good) resident.
Yeah … after so long waiting, and such conditions, even I am not sure I need RPLND.

So Becki, just keep pushing and good luck !

[mercyriver]

Here are the numbers

OK, I have the actual lymph node measurments. When they did the PET/CT on 4/6/07 the aortocaval lymp node measured 1.1 x .5 cm and it now measures on the CT done 6/6/07 1.2 x 1.0 cm. The second lymph node in question is an aortocaval lymph node roughly at the level of the bifurcation of the aorta. On 4/6/07 it measured 1.8 x 1.0 cm on the 6/6/07 CT it measured 1.9 x .9 cm.

That is my interpratation of the matter, the cancer center as I said was compairing it to a CT from 11/24/06. Prior to even diagnosis of the reaccurance and way before chemo.....don't know what they were thinking.

Just sharing...

Becki