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New diagnosis help :(

Bailey1996
Posts: 4
Joined: Jun 2020

Hello all!

I'm excited to be apart of this group. My family is doing their absolute best, but it doesn't compare to people actually going through the same thing. A little background on me:

I'm a 24 year old female. Two weeks ago I was in the hospital for what I thought was a kidney stone or kidney infection. They did a CT and found a 3cm mass on my diaphragm as well as an enlarged spleen. They sent me for more workup with my primary care physician. When I went to get the tests done, I thought the worst thing they could tell me was that it was a little more worrisome than they originally thought. While there, they did another CT scan with dye and they found an 8cm x 7.5cm x 4.5cm tumor in my anterior mediastinum that protrudes into the superior mediastinum. The radiologist diagnosed it as lymphoma due to the location, amount of lymph nodes involved, the shape and structure of the tumor, as well as the blood flow to the tumor. My doctor has yet to make that diagnosis. In fact, he hasn't even brought up wha the radiologist said. I only know what was said because that was in the report by the radiologist and I spoke to the radiologist herself. I go in for a PET scan on Tuesday, June 23rd. While I know that we can't know for sure until we get more tests done, I'm still quite worried. I would rather be prepared for the worst possible situation (just so I know how bad it could be) than have the rug pulled out from under me because I thought everything was fine. 

What do you guys think about this? Did you guys have similar stories to mine? I'm trying not to use "Dr. Google", but it's so hard! Everything I've read so far says that a tumor as big as mine probably means that it's more advanced than I would like it to be. I've also lost 18% of my body weight over the last 4 months. So I'd just love some validation that I'm not crazy to be a little worried and to just assume that it's lymphoma; especially since the radiologist told me that's what it was!

Anyways, if you've read that far, thank you so much! Much love to you all! Xxx

Bailey

PBL
Posts: 222
Joined: Jul 2016

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
Posts: 4
Joined: Jun 2020

Thanks for your reply! They're hesitant to do a biopsy right now, because apparently it will be a very invasive surgery just due to where the tumor is. So an excision always biopsy is off the table for right now. But even a needle biopsy is pretty invasive (according to them). So they're hoping that a PET scan will be able to point us in the right direction!

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

Please see a specialist as soon as you can. Many Doctors are certified in both oncology and hematology so you may not need to choose between the two. An NCI designated center is good for long term management, but there are lots of excellent doctors in private practice who can get lymphoma under initial control. Try to choose one which is in a convenient location. Travel while sick is not good so some place close is best. Also I recommend getting multiple labs to examine any biopsy. Sooner is better. Weight loss is a classic B symptom. Lymphoma is very treatable and youth is on your side. Hopefully your tests are negative!  Good luck.

Bailey1996
Posts: 4
Joined: Jun 2020

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. 

ShadyGuy's picture
ShadyGuy
Posts: 517
Joined: Jan 2017

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!

PBL
Posts: 222
Joined: Jul 2016

To add to ShadyGuy's point regarding stage, one may argue that, in your case, and in the event the PET scan does not show any easily accessible lymph nodes, bone marrow involvement would provide an opportunity for a simple and safe biopsy...

Fingers crossed for you. Do keep us posted on your results.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3452
Joined: May 2012

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's picture
lindary
Posts: 695
Joined: Mar 2015

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.

Evarista's picture
Evarista
Posts: 287
Joined: May 2017

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. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Evarista

I knew there was another site but could not  think of it. Glad you did. LLS is great.

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