New diagnosis help :(

Hi Bailey, and sorry to see you likely to join this club. I do not hold a medical degree, but considering your age and tumor location, what first comes to mind is (1) Hodgkin lymphoma or (2) possibly a particular type of non-Hodgkin lymphoma known as Primary Mediastinal DLBCL. 

The good news is, that those types of lymphomas hold the highest record for cure of all lymphoma - and for that matter, all cancer - types.

The PET scan next Tuesday will show two things:

- possibly missed involved sites (such as bone marrow involvement, but also smaller tumors) on the previous imaging, and 

- tumor avidity for sugar, which gives an indication of aggressiveness.

A note on this - in order to get the clearest results from the PET scan, you need to prepare for it by eliminating sugar from your diet for a couple of days ahead of the scan. So, no candy, soda, fruit or fruit juice, bread, pasta, etc. It's unflavored water and grilled or poached meat or fish with green veggies for you starting this weekend! You will also need to refrain from strenuous exercise all day Monday, so that your muscles do not "light up" more than small tumors. Of course, it's plain (unflavored) water-only in the six to eight hours leading up to your scan on Tuesday. This will ensure that the most sugar-avid cells in your body - the tumor cells - enhance clearly on the screen.

The most likely step after the PET scan will be an excisional lymph node biopsy, and possibly a bone marrow biopsy as well. This is the only way to determine the type of lymphoma (as there are many different types) and to decide which treatment is the most appropriate in your case. 

If you have not yet been addressed to a specialist - ideally, a hematologist - you may want to discuss a referral to one at a NCI-designated Cancer Center or at least to a teaching hospital, for the best possible, most up-to-date care.

I hope this answers some of your questions. I am sure others will soon be posting their own remarks. Do let us know how things go.

Kind regards.

PBL

(Primary Bone Follicular Lymphoma, Dx 01/2016, 6xR-CHOP21 03-06/2016, Maintenance Ritux 08/2016-04/2018 - Currently in remission)

Bailey1996 said:

Thanks!

I live on the west coast and I have Kaiser insurance which I love, but it's a little frustrating sometimes. Everything is internal, so I can't even call a specialist to see if they will see me without my primary doctor referring me first. My primary doctor has been in communlocation with an oncologist and the oncologist was the one who suggested to do the PET scan before the biopsy since the biopsy would be very invasive. I haven't pushed for one yet because this all started like 2 weeks ago. I'll push for an oncologist or hematologist after the scan on Tuesday if they haven't already referred me to one by then. 

Good luck. Sounds like you are headed down the right road!  Let us know what happens on Tuesday. And remember - if it is lymphoma - any stage is as treatableas the other. It all responds well to treatment. I was rather shocked when I was diagnosed as stage 4. My oncologist explained that it is all very responsive and that in lymphoma the stage is almost irrelevant. I will be thinking of you!

Bailey,

No CT or PET ever confirms Lymphoma (or, of course, the strain, of which there are at least 50).  Many things in medicine are difficult, and only a biopsy will answer your questions, difficult or not.  But based on the size of the nodes and where they are, it sounds almost definitely like lymphoma.  A general surgeon gave me my first assessment of the CT that discovered my disease, which was everywhere from my lower jaw to pelvic region.   The surgeon said, "I'm not an oncologist, but I do surgery on cancer patients all the time.  The only thing I've ever seen like this was a patient about to die of AIDS, but since you are in no AIDS risk group, it is virtually certain to be lymphoma."  He was correct, although all my nodes were "deep," and I had never felt one, even in that condition. (Today, ten years later, I have never 'felt' a lymph node in my life.)

As PBL and Shady noted, Stage is seldom important with most lymphomas, and nearly all can be gotten rid of.    Like my other cancer, Prostate, Lymphoma is virtually never an "emergency."  Despite my bulk of disease, it was over two months between that first CT and my first infusion. 

Know that you will get well,

max

lindary said:

Bailey1996

Like you I checked out google when I was diganosed. In fact the the Oncology/hematology Dr I saw for a second opinion recommended it. He said 'learn your disease'.

The American Cancer Society site is a good one to start with to understand terminology. Also Lymphoma Research Foundation. For chemo drugs I found Chemocare to be helpful. Good luck Bailey.

The Lymphoma & Leukemia Society (LLS.org) has a lot to offer as well.  Lots of educational videos, people to talk to directly. Good luck with the procedure and diagnosis.