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Dlbcl tumor on heart

JacquieK's picture
JacquieK
Posts: 14
Joined: Jul 2011

Hi!  Searching for someone who also had dlbcl with tumor originating on heart to share discussion with.  Thanks!

po18guy
Posts: 1081
Joined: Nov 2011

Lymphoma is known as a "liquid cancer", and so may present anywhere in the body. I have never heard of a tumor forming on or in the heart, but it is just as treatable as if it was anywhere else, which is the good news in all of this. What is important is if the lymphoma cells have any special mutations which might make them a challenge to treat. That would depend on the pathology that is done. Particularly in cases of lymphoma, a second opinion on the pathology report and biopsy sample is always an excellent idea, as lymphomas can be mis-diagnosed, or even missed completely. Since its type and sub-type will determine the treatment, it can be crucial to know precisely what it is. If you are in the US, the best pathology labs for a review of the biopsy are located in National Cancer Institute Designated Cancer Centers. You can search state-by-state for the nearest center. 

Mmacko
Posts: 1
Joined: Jan 2017

That would be me ! Diagnosed at 20 yrs old on 8/15/16z currently in remission as of 12/31/16. My mass was forming right against my heart and it was about 8x7x9 inches in length. Completed 6 rounds to R-Epoch with getting to a level 3 dosage 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

Be careful to differentiate between a node-encapulated tumor pressing against or adjacent to an organ, verses actually growning "on" an organ.  The former, as PoGuy noted, is hardly ever heard of.  The latter is actually rooted into the host organ, and alters the organ's biochemical and/or mechanical funtioning.  The most common organs for lymphoma to metastasize to are (1) bone (far and away the most common) and (2) the lungs.  But also as Po noted, it is systemic, and can go essentially anywhere.  But it is moving then toward a metastatic (spread) point, not an origin-point.  An extremely rare exception are the few CNS diseases that seem to begin in the spinal fluid.

Compare, for example, typical liver cancer: this is a type of cells that begin from liver cells themselves, and baloon into tumors, eventually destroying the funtions of the liver. The same is true of lung cancer (both small- and non-small cell types), and so forth.  I had nodes enlarged inside my lungs also, but never had "lung cancer."

Similiarily, I was first diagnosed from a heart scan: the ER though I was having unstable angina (a 'heart attack'), and sent me to a regional chest pain center via ambulance.  It was later determined that the pain was from a mass of tumors (nodes) pressing against the exterior of the heart.  These and all others were a  conventional strain of lymphoma, and treated as such.   I had tumors from the neck to the pelvis, and across both axillary points (armpits), as well as daisy-chain wrapped around the escophagus, and the superior vena cava, end-to-end.  In short, a massive amount of disease, all over.  But I had no form of organ cancer, and the cellularity of my lymphoma had nothing to do  with the heart, lungs, or escophagus.

My heart pain was limited to one afternoon, and did not return, although I did not begin chemo until at least a month after that episode, probably longer than that.  If the pain had returned or worsened, I do not know what could have been done.  I suppose it well could have become life-threatening or even collapsed the heart in a worst-case scenario.  Cancers kill in a variety of ways, but destroying various organ's ability to operate is the most common: the heart can no longer pump, the lungs can no longer oxygenate blood, ect.

max

 

JacquieK's picture
JacquieK
Posts: 14
Joined: Jul 2011

Did you also have to have open heart surgery and replacement pericardium to remove it?  I wish you strength and recovery!!

JacquieK's picture
JacquieK
Posts: 14
Joined: Jul 2011

My tumor originated inside my pericardium and was the size of a mans fist when found.  It had grown up through the pericardium and wrapped around almost all structures in my neck (which is how we found it; lump under my left collar bone felt like a thumb).  Had a sternotomy with replacement of top half of pericardium with artificial material.  Surgeon was able to remove most of tumor from heart, pericardium, chest but not all and definitely not all from neck.  Surgeon cut phrenic nerve on left causing no diaphragm function/lung function on left.  He also knicked my vegal nerve to heart causing my heart to beat uncontrollably fast and necessitating meds twice a day to slow heart down to around 105 bpm at rest (vegal nerve is like your hearts brakes).  Then, had Rchop chemo 6 rounds and finally 2 months of radiation because there was still a small nodule on my heart and a few in my neck.  The radiation damaged my right lung leaving me with only 39% tidal volume.  I am aware this is an EXTREMELY rare form of dlbcl, however, due to the severe problems my treatment to remove the cancer have left me with, my docs are pulling me away from the work force and what I love to do.  I have never not worked since I was 11 years old and parents made me join the workforce.  I am trying to find someone who's journey (yes, I know each of our journeys are unique) has been similar to mine to talk with.  I miss my littles, my classroom and the joy of watching children learn and excel everyday!  I am sad that cancer or the treatment thereof has left me feeling like yet again even 5 (almost 6 years, as of May 20th) has won.  What's worse to me is docs pulled me from work because sick all the time and prednisone (which I had in high doses for chemo) and seems to be the only thing that works for my lung now, has now caused diabetes and started osteoporosis.  Yet, I have been sick with same severe wet cough the 3 months I've been home and budesonide been using in place of prednisone is not working.  Can anyone relate?  Please?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3489
Joined: May 2012

I've never heard any story remotely similiar to your.  How the heart was able to funciton at all is incomprehensible.

The rarest lymphomas here have been CNS related, various T-cells, and a few in the eye socket, but nothing like yours that I can recall, and I've been reading here nearly five years.

max

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JacquieK's picture
JacquieK
Posts: 14
Joined: Jul 2011

Thank you Max.  I keep looking.  I wish you health!

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