I’ve been quiet about the results of my biopsy because there’s not really an answer.
I’ll begin by explaining where we’ve been since chemo ended in December, then talk about what we’ve done to figure out where I stand with the cancer, and finish with the latest biopsy on Tuesday, 3/29, and what it really means.
When chemo ended in December, I had a PET scan. For a PET scan you get radioactive sugar injected into you, then you wait quietly for 45 minutes while cells take up the sugar before they run the scan. Cancer loves sugar, so it concentrates the radioactive sugar from the blood. That makes cancerous areas show up HOT on the PET scan.
My PET scan in December showed a 2 cm HOT spot in my chest, where the 4inch (10 cm) tumor had originally been when I was diagnosed with cancer. This was not good because there should have been nothing left there after all the chemo, so they did a needle biopsy of that spot in January and got several tissue samples, each about the size of a grain of rice. The biopsy results were not helpful, so we decided to wait and see what the HOT SPOT would do.
We had another PET scan in March. In the meantime, my tiredness starting coming back. This PET scan showed the HOT SPOT had doubled in size (4 cm), and there was another smaller hot spot next to it. The cancer, or whatever it is, is growing. They performed another needle biopsy on March 22nd to see what we could see. The surgeon got 5-6 tissue samples, each about the size of a grain of rice. Unfortunately, the results were “suspicious for cancer but not diagnostic” because no Reed-Sternberg cells could be found.
Although my tiredness is coming back and the PET scans show my nodes are feeding on the radioactive sugar and growing, we need to confirm it is the HODGKINS LYMPHOMA returning, so we can treat it with more chemo, High Dose Chemo, and stem cell transplant.
This meant that we needed a bigger sample which would require more invasive surgery. The original plan was to do a mediastinoscopy, where they make an incision in my neck and stick a scope down my chest to get samples. However, the thoracic surgeon said that he could not get to the HOT SPOT using this method. Instead, he recommended an anterior mediastinotomy, also known as a Chamberlain Procedure. This involves making an incision in the chest, removing a small section of rib to make a window through which he could obtain big tissue samples.
We did this procedure on Tuesday, March 29. The procedure went well. It took twice as long as expected, because the lymph node had grown since the last PET scan and the surgeon had to work with what was there. It was wrapped around my aorta and pulmonary arteries. He took a LOT of tissue – the biggest piece was over 3 cm long. No, the doctor did not put the piece of rib back. He just used it to make Jacqui more amazing.
We got the results of the biopsy back on March 31. The pathologist was unable to find any evidence of inflammation (the other thing that likes sugar and makes nodes big) The pathologist was also unable to find any Reed-Sternberg cells to confirm it is still Hodgkins Lymphoma, in spite of looking really hard. The oncologist is confident it is still Hodgkins, but again we can’t treat till we prove it and we don’t really want to wait for me to get really sick while we are trying.
It’s time for a second opinion. Road trip to Vanderbilt. My tissue samples were shipped there Thursday. Another pathologist will be able to analyze them and maybe have some other fancy tests to run. We’re going to meet with a distinguished oncologist who specializes in ‘the weird ones’ on Thursday, April 7th.
Although we would like to be glad that they cannot find any Hodgkins Lymphoma in the tissue samples, we’re also very scared because we don’t know why the lymph nodes are growing and we have to figure that out before we can get me better.
I will have more news next week after we see the doctor at Vanderbilt. In the meantime, Jacqui and I are going to keep living life to the fullest.
Friday night we got to go see The Streamliners, a 16 piece big band, at the Alive After Five show at the Knoxville Museum of Art. Look for a blog post about it soon.
Also, today we are starting work on the Multi-House Blitz for Habitat. Today is the pre-build, where we get a jump start on next Saturday, April 9th, when the official week-long build kicks off. I’ll be posting pictures and updates on my blog each day. We’re going to build 7 houses next week. The houses should be ready for move in on Saturday, April 16th, which is also Dedication Day. Everyone is invited to the Dedication Ceremony. The official ceremony starts at 11am, and I would recommend getting there early so you can tour all the beautiful houses and meet the homeowners.
Hope everyone has a wonderful weekend, and thank you again for taking the time to read this.
Peace and Love,
-A
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