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PET results and a forked path

Anonymous user (not verified)

Well, the news wasn't good, and I have failed R-CHOP and the cancer has still grown despite treatment. Though, it is still much smaller than my first PET scan! I'm going to take that as a great sign!

Problems. Problems... I have to make a choice now, and it's a bit confounded. Of course, we have to act fast... but there's a problem in the data that bothers me. Let me explain:

Doctor doesn't know what stage I was in to begin with - On my initial PET scan, my liver was gigantic and I had a spot in my lungs. Add in B symptoms, and I was stage IIIB-E.(Extranodal) Fast forward to now, and the spot in the lung is gone.. he thinks I could have been stage IB-E. He is unsure what stage I am.. now isn't that weird?

Because of this, he thinks that instead of doing a stem cell transplant, we might be able to get away with radiation and being done with it. I'm torn, because it sounds like an easier route.. but I'm not convinced that I was a stage one. I'm worried that the localized radiotherapy will only kill that spot on the liver, and other areas will grow right back. Then, at that point, my health might have deteriorated too much for an SCT?

I'm keeping an open mind.. and seeing a radiotherapist on Monday for a consult. I'm also going to call around and see if I can also find another opinion. Things have to happen fast.. as I'm supposed to be doing something.. chemo or radiation within a week due to the pace of growth.

Any opinions of this fine cancer family would be welcome. Has anyone else experienced such a strange reconfiguration of their staging?

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I would strongly recommend a 2nd opinion. I would find one fast even before going the radiation route. If the Dr. was not sure of your stage in the first place how can you rely on his opinion now. Good Luck and keep us updated. John

jimwins's picture
jimwins
Posts: 2001
Joined: Aug 2011

Hi Nathan,

Sorry you didn't get totally good news. From what you've said, it
does look like you were responding to chemo so I'm a little confused
(you said it was smaller than first PET scan).
How many rounds or R-CHOP have you had?

I agree with John. Get a second opinion. Also, if you are not
being treated at a top notch facility, consider finding one.

My friend who has been going through R-ICE as a second line of
chemo (after R-CHOP) got disappointing news recently. The R-ICE
therapy is doing nothing. So, he's going to start radiation
treatment this week (right kidney and bladder/urethra area).
He told me his doctor was very encouraging about the radiation.
He responded very well with the R-CHOP except in that one area.
The positive news for him regarding the radiation is it won't
be debilitating (probably some skin irritation). He's to undergo
two weeks of rad treatment 5x a week.

Try not to freak out and if you're not on anything for anxiety, etc.,
ask for it. Believe me, most of us will tell you here - it helps
take the edge off the "worry monster". Take a deep breath and
move forward, Nathan. That's all you can do and we're here for you.

Feel free to message me if you want to chat.

Hang in there, keep your chin up and be strong.

Big warm hugs,

Jim

hiccup (not verified)

I am moving forward indeed! I have a lot of ideas going on, and I'm waiting for Monday to hit and make some phone calls and do some begging for a consult! I really think a second opinion regarding staging, etc is a good idea.

I had 6 rounds of R-CHOP, and the tumor began to grow and resist the treatment. I knew the bad news was coming because of the feeling of fullness I was having, and it's causing some issues breathing. I'm certainly not heartbroken from the news-- more determined actually to get some real answers here.

Regarding the radiation treatments, for some reason I have a lot of anxiety about it. The tumor is so close to my heart, lungs.. and apparently the liver is not so radiation friendly. I am also having some irrational fear about it maybe. I have a lot of questions for that poor radiation oncologist.

I sure wish they had just gone ahead and called me with the news.. now I have to wait until Monday for action.

anliperez915's picture
anliperez915
Posts: 747
Joined: Sep 2011

Man what a bummer Nathan, hope you can talk to another doc soon! I got a second opinion and at first he didn't really want to take me and said a lot of "ifs and buts" and also made it a little difficult for me...but in the end he sort of got no other choice haha! Anywho, I wish you only the best and lots of luck. Please keep us updated!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Nathan,
So sorry to hear this news. May I ask if you ever had pathology done on any tumors? I was under the impression the only way to determine the stage is through a biopsy...someone please correct me if I'm wrong. I'm with the others...seek a second opinion Nathan. Please keep us informed on your situation and I will keep you in my prayers. Best wishes..Sue
(FNHL-2-3A-6/10)

hiccup (not verified)

Oh Sue, I'm so glad you asked! I forgot about that!

Well-- I did ask him, and there were no pathology reports available about tumor genetics. He said they "couldn't get a signal." I'm not so sure what that means.. I did have a fine needle biopsy, so they may not have had enough sample to do all of the genetic testing.

All they could confirm from the biopsy was DLBCL. So, I don't really know much else than that.. and neither do they!

The staging issue is due to the suspect spot on my lung-- if it is indeed lymphoma, I would have activity above and below the diaphragm. That would make me stage III. Now that chemo got rid of that spot, they are unsure if it was lymphoma or some PET anomaly.

For now, I won't know! They didn't biopsy the lung back then as I was not doing so hot and they wanted to just forge ahead with the chemo to help me breathe. I think this has been the problem all along.. things have been pretty rushed and a large part of the picture is certainly missing.

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