Friday, July 26, 2013

The Nitty Gritty

I did it! I requested my records from Tulsa Cancer Institute. I've read over them three times already and will read over them many more times! I feel a little more educated about what I've been through the last six months - especially in the beginning.

It all started with an ultrasound on my neck that showed abnormal appearing enlarged lymph nodes. Biopsy was recommended. My surgeon did a needle biopsy that day on the prominent lymph node at my collar bone. The results included the phrase highly worrisome for malignant lymphoma. It's a good thing I didn't see those words until now!!! I'm so thankful that my surgeon didn't tell me exactly what the report said! Dr. Bruns was so kind with what he told us and how he took care of me!

Since the needle biopsy wasn't definitive, I had surgery to remove the lymph node for biopsy. It showed non-Hodgkin lymphoma - diffuse large B cell lymphoma (aggressive), likely arising out of a follicular lymphoma (indolent). I wonder how long I had the follicular lymphoma...

So, all my progress notes show the diagnosis as:

Diffuse large B-cell lymphoma with a component of grade 3 follicular lymphoma, Stage III disease above and below the diaphragm.

I learned that two lymph nodes were removed from under my arm where I thought it was just one. They were not positive for lymphoma, but a component of minimal involvement by follicular lymphoma is not excluded. Again, I wonder how long I had the follicular lymphoma...

Actually, I'm thankful that it progressed to the aggressive lymphoma so I could get treatment. The aggressive lymphoma has a higher rate for cure! Both the large diffuse B-cell and follicular respond well to the targeted monoclonal antibody treatment of Rituxan! Plus I would hate knowing I had the indolent follicular lymphoma where nothing could/would be done until it became aggressive. I did all that waiting without even knowing it!!!

My first PET scan showed the cancerous lymph nodes were from my neck down to my abdomen. If you want the technicalities: Multiple hypermetabolic enlarged lymph nodes are seen involving the lower left neck, superior left mediastinum, periesophageal region of the lower mediastinum, and periarotic and pericaval nodes. It also gave specific measurements and SUV (glow) on the more prominent lymph nodes.

A bone marrow biopsy was also performed while I was knocked out for the lymph node surgery. Thankfully it did not show lymphoma!!! However, it did point out that there is virtual absence of bone marrow storage iron placing this patient at future risk for iron deficiency anemia. Good to know!

And my echocardiogram before starting chemo showed mild-to-moderate mitral valve regurgitation, mild tricuspid regurgitation, and trace pulmonic valvular regurgitation. At least my aortic valve is fine! Goodness!

Oh, the BEST lab result from my pre-op work up was a negative pregnancy test! Woo Hoo!!!

After three rounds of chemo, the CT scan showed encouraging findings:
  • No mediastinal mass or mediastinal lymphadenopathy
  • Previously seen superior mediastinal lymph node is no longer identified
  • Lower periarotic lymph node is decreased from previous exam
  • No retroperitoneal mass or adenopahy is seen

And then after three more rounds of chemo, the PET scan showed "excellent" results. I'm glad and relieved to read Dr. McHam's notes after he talked to the radiologist:

"I discussed the case with the radiologist and he felt like the degree of remaining hypermetabolic activity is not clinically significant showing excellent response to the treatment that was given previously."

So that's the nitty gritty of my medical records for this cancer journey to date. As I read over all the reports, I can't help but notice how many people have been involved in my care. Of course I have my four main doctors - Primary Care, Surgeon, Oncologist, and Oncologist NP. Then you add in all of their medical staff, chemo nurses, surgery staff, those who performed tests/scans/labs, those who interpreted tests/scans/labs, office staff, transcribers, etc. It's a little overwhelming! I'm thankful for all of them! And I'm thankful for those who have researched my disease in order to identify it and find a treatment for it. 

Give thanks to the LORD, call on His name; make known among the nations what He has done.
~ I Chronicles 16:8 

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