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Recommendations for Cancer centres in Dallas, TX?

Momentary
Posts: 5
Joined: Mar 2019

Hi all, 

I am newly-diagnosed with B-cell lymphoma, doing a PET scan and bone biopsy with further testing to stage it and classify the type. I have been dealing with texas oncology and have only had a limited exposure to them due to the newness of my diagnosis but have not been impressed with their facility. When my primary care physician referred me to an oncologist there to check out my suspicious lump, I had great difficulty even getting on to someone to make the initial appointment. Texas Oncology appear to only function using voicemail, which I discovered when trying to contact them regarding my lab results or trying to make the Pet scan appointment. I have left several messages and had to go physically to the center to get any answers. My Pet scan should've already been performed if not for an error and carelessness by the scheduler. 

Since receiving the diagnosis I am now concerned that I will only have continued issues with them and even though I am very happy with my oncologist, am looking at other options for Cancer centres in Dallas.

Could anyone please suggest/recommend any places near Dallas (we are north, near Garland) that you have heard good things about or have experienced.

Thank you very much!

Iluvlucy
Posts: 25
Joined: Feb 2019

I have no experience at all in TX being from the Midwest, but I would strongly recommend going to a National Cancer Institute, at least to get your initial resting and treatment oprions, even if it means travel that is inconvenient.   I traveled 3.5 hours to get an opinion that ended up finding cells that were not noted in my original path report.  I recvd my treatment reccomendations and am receiving my treatment locally.  Others here will support this as well.  I looked and there are a few in TX but none in Dallas that I can tell.  Good luck and best wishes to you!     Paula

Evarista
Posts: 255
Joined: May 2017

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.  

po18guy
Posts: 991
Joined: Nov 2011

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. 

Evarista
Posts: 255
Joined: May 2017

I know several people who have gone  to MDA or Sloan Kettering for cancer diagnosis and arranging a treatment plan. They then get that treatment administered at an appropriate local facility. Reduces the number of trips to Houston should you wish to go that route.  Good luck.

Momentary
Posts: 5
Joined: Mar 2019

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?

po18guy
Posts: 991
Joined: Nov 2011

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Momentary,

On this subject generally, I differ somewhat from most or all of the views shared thus far. 

IF a person has a 'common,' straightforward form of lymphoma, then in most cases the treatments they would receive at a place like Sloan-Kettering or MD Anderson will be identical, or close to identical, to what they would get at a large, regional oncology center in most locations throughout the US.  But as Po mentioned, with lymphomas, of which there are over 60 versions recognized by the World Health Organization, correct classification by the pathologist is game-changing.  Most of these differing strains respond very differently to various treatments, and what works for one will not work for another.  But a second-opinion can be got from a place like MD Anderson or Johns Hopkins without you having to go there yourself -- just arrange it and have the biopsy shipped to them. There is a fee, and insurance may or may not pay for the second read, but it is probably worth it.  I have heard people mention how much they paid out of pocket to do this, and the amounts were not that high.

There are times when a premier center is necessary.  A few of these circumstasnces are (these overlap somewhat, of course): 

(1) If you have an extremely rare or complex disease, then you need to seek  out a specialist in specifically what you have, and usually these sorts of doctors are congregated in the prestigeous hospitals.   Some examples of this might be T-Cell disease, disease with CNS (spinal/brain/occular) involvement, and a few others;

(2) Patients with relapse or repeated relapses need to be at the absolutley best hospital they can afford; (2 b) Patients who, after significant trreatment, remain refactory probably need to find a new center;

(3) Patients who are alread seriously sick with other diseases (comorbities) that limit their ability to undergoo treatments ;

(4) Patients with no recourse except to clinical trials are more likely to find these at the largest, best centers. But Databases exist that will tell patients where in the nation, or even world, trials of relevance to them are scheduled for.  Sometimes, these are regional hospitals. It just depends.

The vast majority of cancer patients use their local cancer center for care.  And, most cancer patients never consult a Discussion Board like this.  But then again, a large percentage of the population cannot name either of their two state senators.  But the price of the newest I-Phone -- THAT they can quote instantly.

 

po18guy
Posts: 991
Joined: Nov 2011

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
Posts: 5
Joined: Mar 2019

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! <3

 

Scubamom for two's picture
Scubamom for two
Posts: 18
Joined: Apr 2018

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!

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