Round III

Lym999 said:

Hoping For The Best

Wow, That was a surprise! I am hoping for the best for you. My biggest fear isn't about getting Lymphoma again, but another kind of cancer down the road. Was the node removed from the lung area?

Headed down the Yellow Brick Road to the oncologist in about an hour.   Of course, 'nothing'  available at My Chart-- no results.  I do hope the doc will have them.

An interesting little dvelopment:  my hospital system began transformation into a new medical group about a year ago.   Pretty soon, it will seemingly own most hopspitals in SC west of the coast, where some other powerhouses are ensconced in such a way as to never lose their monopoly in that region.   They are changing their MYCHART posting practices:  Beginning in November, as soon as a result or lab is completed, it goes straight to My Chart, with no doctor release required.   I rejoyce at this.   Doctors have monopolized and sat on this information for too long.  Of course I have no idea whether this policy will effect MyChart in other areas.

LYM,   my biopsy node was just below the surface, front axillary (armpit), not near the lung.   The symmetry with my 2009 left incision would be perfect, except that this new one is 4.25 inches long.  It hurt terribly for sevelar days, and I still have a little trouble lowering the arm down.  The surgeon felt for the node just before rolling me back to the O.R., but still could not feel it at all; repeated that he would have to guide his incision via ultrasound.

I am thinking some form of leukemia, but I do hope for the best.  I just pray for a treatable/managable disease that is not rapidly fatal.  PBL, I have been sleeping all day, every day, and have not seen your link yet, but thank you dearly, I will get to it.

po18guy said:

Leukemia...

would not normally manifest itself outside of the marrow and bloodstream. AFAIK, that would have lead to obvious symptoms, such as anemia, bleeding or infections. But, pathology has the last word here.

Today's trip to my new onc was a total waste.   In fact, her nurse came out and told my wife and I to go home before I met her, because they still did not have my results.....  I was wondering: They didn't know this yesterday ?

The onc's office called later in the day, saying that she had called the pathology lab herself, and they told her that they could not determine what disease it is, and were forwarding it to a more sophisticated facility.   Proceeding at the speed of modern medicine.....   I have a sister-in law who, about 12 years ago, developed lumps all inside both lungs.   At first, the docs thought lung cancer, then lymphoma.  A team of pathologists, a pulmonologist, and medical oncologist took OVER A YEAR to determine that she had (has) sarcoidosis.  I am not making this up.    Best advice I can give is, be sure yor cancer is slow-moving.

po18guy said:

Speaking of which

Hope that SIL is OK now! Sarcoidosis is not an affirmative diagnosis. Rather, it is a blanket term that describes various considitions that do not fit any other diagnosis. Thought I might have had this in 2015 and doctor replied "We can't rule it out" but you know what it ended up being. Fortunately, many cases of sarcoidosis resolve - but it can be rather nasty as well.

It is a good sign that your local path lab is sending your tissue out. Since they must know what they were looking for from your prior diagnosis, you would almost certainly know by now if it was a relapse. It just might be one of the many type of HTI lymphoma - Hard To Identify. Although....there are a number of benign lymphoproliferative conditions. Good news: being non-cancerous, they relieve one's headache. Bad news: They just cause a different headache. Such is a pilgrim's journey.

My surgeon, as he revieved my timeline and the CT, mentioned something to me about CLL, but I don't know why that in particular came to his mind.

Otherwise, still a nothing burger, with extra nothing on the side.

Max Former Hodgkins Stage 3 said:

Bless you

I very much appreciate your kind words Sandy.

I looked up the Pathology group that services our hospital system.   They state that most results are back to the submitting physician 'within 24 to 48 hours.'    They also state on their website that they are as certified and have as good equipment as Duke and Emory medical schools.   I guess they know what they are doing....   Meanwhile, it is now NINE days

I went to my surgeon yesterday for routine post-surgical check of the biopsy incision.   He had just that day received some results via e-mail.

The sample was studied in two premiere labs, and signed off on by four pathologists specializing in blood malignancies.   The result is "PTGC, with follicular hyperplasia."  PTGC (which I had never heard of before) commonly accompanies NLPHL (what I had in 2009) and follicular NHL.    It can occur before, during, or after lymphoma, but is often BENIGN, and is not regarded clinically as a precursor to NHLPL, but it does require constant following and possibly scanning.   

I am attaching an article on PTGC.   It should be of interest to anyone dealing with NLPHL, follicular NHL, or simply PTGC itself.

Also, let me mention the site OncologyGo, which I get via Amazon Firestick steaming.  It is also available as an APP,  on Apple TV, and RoKu.    Short presentations by oncologists discussing their latest research.

Needless to say, I am quite relieved, and appreciate all of the kind sentiments shared,   

max

To open the link, Highlight, then r click, then hit "Go to......"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5910479/