Heather, SPTCL, the Next Chapter – Hang on to Your Hat!
[To catch up on previous chapters of Heather's story, link here (post #1) and here (post#2.)]
Heather had her first oncology appointment today. She was lucky to get in so quickly after her primary care physician ditched her (that still makes me shudder) and she was prepared. Last week, after my post about her diagnosis of CGD-TCL, cutaneous gamma-delta t-cell lymphoma, she had been contacted by Judy Jones at the Cutaneous Lymphoma Foundation, and she was feeling as prepared as she could.
What she was NOT prepared for was what happened!
Her oncologist was happy to tell her that the results of her clonality test had come in and it turns out that no, she does not have cancer. No treatment needed. They will continue to follow her for awhile, but don’t expect the diagnosis will change.
WHAT??
If you’ve read my story of SPTCL, then you know the clonality test was pivotal in my story, too. In fact, my entire diagnosis was predicated on this clonality test, and like Heather’s — the clonality test proved I did not have cancer.
While Heather was there, the oncologist got back in touch with the lab in California that reviewed the clonality of her lymphatic cells. They reviewed the slides, reviewed the findings, reviewed studies and all agreed that no — Heather has no cancer. She does have some problem some lymphatic cells, but she will not be treated. Instead, she is working on diet and nutrition. She’ll be checked again in four months.
To say Heather and her family — and her co-diagnosed friend Trisha — are euphoric, doesn’t begin to touch it. We’ve not even met in person, but Heather and I will share a bond forever. She lives in Nevada, and I’m supposed to be out that way in October — so we hope to meet.
Mostly I’m thrilled, just thrilled that the system worked the way it should. Heather’s friend Leslie found me and my experience, Heather and I consulted, and two patients worked together to arrive at the right answers for this young mom who only deserves the best.
Now read what Heather has to say about it all — and post a cheer or two to her blog. Woo HOO!
(And Heather — thanks so much for your kind words. I still choke up everytime I think about what we accomplished. We made quite a team, didn’t we?)
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Trisha,
I am one of Heather’s sisters and I wanted to say thank you. Your story made us all hopefull and your guidance made Heather empowered. We can all “be there” for her, but you helped her move mountains. I am so thankful that you came into her life. WOW, I just cannot express how happy I am that she doesn’t have cancer!
Thank you is just not enough!
Natalie
Natalie,
Thanks for your kind words… I can’t tell you how happy I was that my bad experience could make someone else’s experience a bit easier. That said, your sister is a strong and remarkable young woman who knew how to take her energy and apply it in all the right places!
There will be someone else who needs help – a year, two, or ten from now. BOTH Heather and I will be there to lend an assist. That’s how it works — and — it works well!
Time to celebrate!
Trisha
My fifteen year old son has just received this diagnosis from his hematologist/oncologist. I have read information from different sites online, and I’m baffled by the fact that he does not have all the symptoms listed. I will proceed to have a clonality test done asap. If there is any other information you can share with me, please do not hesitate to contact me.
Baffled in PA.
Sonia,
I tried to reply to you by email but it was returned. Here was my note to you:
I’m more than willing to hold your hand through this process if you are interested.
The clonality tests can be confusing. And you need to get a hold of a copy of the original pathology report that diagnoses SPTCL yourself — I can help you decipher it. I’ll also refer you to the NIH can give you that information.
What made you go to the doctor to begin with?
Let me know if I can help.
Trisha
write to me at: blog – at – epadvocate.com