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Primary Mediastinal B Cell Lymphoma or Double Hit?

webejam
Posts: 3
Joined: Apr 2019

43 years old and I was just told on 4/22/19 that my Primary Mediastinal B Cell Lymphoma was in complete remission after 6 rounds of DA-EPOCH-R, but have been referred to a stem cell transplant team for a consultation.

 

My oncologist has never used the term "double hit" until the referral.

 

Wouldn't they have diagnosed me with double hit lymphoma after my biopsy? (I had 2 biopsies and no mention of that term).

 

She did say the referral was preventative, but I am still confused and worried.

 

Anyone have any information that could clarify this for me? 

PBL
Posts: 182
Joined: Jul 2016

Hi,

First of all, congratulations on achieving remission! That must be a great relief.

Regarding your oncologist's puzzling statement, it is helpful to remember that, devoted and competent though they may be, doctors are only human and can, occasionally, make a mistake. If you have never seen the term "double hit" in your pathology reports, it might be a simple slip of the tongue and your quickest way out of the anguish it has caused you would be to ask your oncologist what she meant. 

I hope this helps.

PBL

webejam
Posts: 3
Joined: Apr 2019

Thanks for the reply.  My main issue is I can't get a good response online about what it really means.

 

PMBCL is a sub type of DLBCL but is very different biologically.  Most of the info on DHL is in regards to DLBCL. 

 

See a new oncologist at a large university cancer center tomorrow about SCT, will ask then. 

 

I just want to stay in remission!

 

PBL
Posts: 182
Joined: Jul 2016

It is often difficult to find precise answers online, as there is an infinity of variations in the lymphoma realm. I have Follicular Primary Bone Lymphoma and have never really found any other individual with the exact same features. 

One of my "cancer mates" had PMBCL and went on to an autologous stem cell transplant to consolidate her chemotherapy. Your hematologist is seeking to avail you of the longest remission possible - some here frown upon the word "cure", but that is what you can get, and what she is aiming for.

I hope your appointment tomorrow brings you all the answers and reassurance you need. Do keep us posted.

PBL

Evarista
Posts: 254
Joined: May 2017

I'm wondering if you were able to see the final pathology report?  Because the molecular testing for "hits" takes longer than the other diagnostics and is often "sent out" to a specialized lab, that report may never have come to you.  But it is definitely something that you should be able to see and should clarify the issue for you either way if your doctor cannot.  Hope the consults all go well.

webejam
Posts: 3
Joined: Apr 2019

My oncologist (treats many kinds of cancer at a large community hospital) used incorrect terminology when she referred me to a lymphoma specializing oncologist at a large research university hospital.  The oncologist at the research hospital said I did not have double hit and was not even a candidate for a stem cell transplant even if I did. 

I immediately transitioned my care going forward to the research hospital oncologist.  I live in a decent sized city with 2 private health organizations and 1 university controlling all 16 hospitals in the city (minus 1 for the VA hospital).

 

PBL
Posts: 182
Joined: Jul 2016

It's always better to put your life in the most expert hands you can find.

You must be relieved to find that yours is a "standard" PMBCL with no further surprises...

PBL

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