Hi Momentary:  I sent you a private message via CSN Email.  The link for this is in the upper left-hand corner of the page and you have to be logged in to retrieve.  If you do not see it, be sure you have your settings so that messaging is permitted.  

Period. The drive is absolutely worth it. They are world reknowned, cutting edge, active in research and clinical trials and are, IMO, the best chooice for treatment that will lead to the best outcome. Even though we may be satisfied with our hematologists, the point is results. 

Momentary said:

What if treatment is pretty straight forward?

Thank you very much everyone for your answers, I appreciate your help so much and very happy I found this forum!

Regarding going to one of the world's best cancer centers, If I have a typical very treatable run of the mill type with a standard treatment (will find out this week) do i really need to go to somewhere like Md Anderson? My understanding was places like that were more for people with difficult cancers or recurrences and harder to treat who might benefit from leading-edge trails. Or am I completely off-base?

You want to make absolutely certain that the pathology on your biopsy sample is correct. Mistakes are still made, even at major centers - especially in cases of lymphoma. After that, if it is run of the mill, you want to make certain that your hematologist is willing to consult with MD Anderson along the way. No doctor has all the answers. More sets of eyes on your case, the better.

Recently, there was a 26 year old young man from northern California who was diagnosed with Anaplastic Large Cell Lymphoma (a T-Cell Lymphoma) at a major NCI cancer center. He underwent intensve therapy and even a stem cell transplant. There was an immediate relapse and he was placed on oxygen. He traveled to Seattle for a second opinion and it was there that it was determined that he did not have ALCL, but Hodkin's Lymphoma! His condition was now so frail that he had to participate in a clinical trial. Sadly, he succumbed to sepsis. All because of a mis-diagnosis of an easilly treated lymphoma.

Momentary said:

Thank you everybody. Thanks

Thank you everybody. Thanks to your recommendations, I have contacted the only NCI-designated cancer center here in North Texas, the UTSW  Simmons Comprehensive Cancer Center. They were easy to contact, took my details and said they will chase up with my current oncologist and surgeon to get all the records and slides to review and then contact me with an appointment with a suitable hem-onco. I feel like I am in good hands!

I had a PET scan today and have an appointment with the oncologist at Texas oncology tomorrow arvo. Hopefully the rest of the results from the biopsy detailing what type will be in and we can know more. From the sounds of it, he will most likely refer us to a Hem-Onco within Texas oncology which I will visit just to have another set of eyes/opinion. My heart is set on UTSW however, but like everyone has mentioned, its better to get a second opinion. 

I will post updates as I go along. Very very happy to have your support and help!

 

Greetings Momentary,

I know you have made a decision on where to go and I wish you the best treatment and outcome possible!  I wanted to share part of my story though as MDA truly is one of, if not, the best in the country!  I was incorrectly diagnosed by my local Oncologist with an indolent type of Non Hodgkins Lymphoma and thankfully took the advice of some on this site and also one of my dear colleagues, which all lead me to MD Anderson for an independent diagnosis.  I live in far Northern CA, so traveling to Houston is a day-long trip, but in my case well worth it.  I fully agree with those above who mention how critically important the pathology is in determining treatment for this type of cancer regardless of where you get diagnosed and treated.  For example, those who are positive for MYC and BCL2 and/or BCL6 need the most aggressive treatment plan possible as these pathology combos make the cancer more resistant to treatment and more susceptible to relapse.  My pathology was "weakly positive" for MYC, with some evidence of BCL2 and BCL6, but no evidence of any high percentages.  By the time I made it to MDA, my version of DLBCL had spread to my left hip and I was limping due to the serious damage the cancer had done to my bone marrow and iliac crest area.  It was also in other places attacking my bones and bone marrow, with evidence of possible infiltration to my brain.  Not trying to scare you, but DLBCL also sometimes travels through the CNS fluid into the brain.  Anyway, I chose to check into MDA and start treatment the same week that I went there for my independent/2nd opinion.  This was also coincidentally the same time Hurricane Harvey swept through the Houston area.  Fast forward: I finished all my very aggressive and life-saving treatments (6-rounds of DA-R-EPOCH, 2 consolidation rounds of High Dose Methotrexate, and 11 separate intra-thecal infusions/lumbar punctures) in January of 2018 and have been in full remission since that time.  I cannot say enough great things about the quality of care I received at MDA.  They don't mess around and provided me with the strongest and most aggressive combination of treatments I could tolerate and I am optimistic and hopeful that my situation is "one and done!"  My local Oncologist had prescribed 6 rounds of R-CHOP and would not even authorize an MRI of my brain despite me asking three separate times.  I don't even think he knew to check pathology for double or triple hits, especially since he diagnosed me with Follicular Lymphoma and had not discovered that if it had started as Follicular, it had already transformed to very aggressive DLBCL.  I am glad you are seeking diagnosis and treatment at a reputable and knowledgeable center!  Best wishes to you on your journey!  Stay strong!

Sincerely,

Scubamom for two!