I got the results from my PET CT scan and they were "shocking" in the words of one of my oncologists. The scan showed uptake in 4 different parts of my body: armpit, esophagous, and two sides of my groin. Both of my oncologists and my ENT doctor believe the scan shows a false positive for the following reasons:
1. Nothing showed up in the original site of the cancer, my adenoids. If it were going to show up elsewhere it should also show up here. Had I undergone treatment with radiation it would be possible for it to be gone here but show up elsewhere. I never had raditation treatments.
2. Lymphoma spreads to nearby nodes and progresses toward the spleen. This scan shows uptake in disparate parts of my body.
3. I feel fine and show no symptoms of lymphoma.
I'll need to redo the test on July 1st and I will undergo a biopsy of the tissue surrounding where my adenoids were next Thursday. If the adenoid tissue comes up clean, the rest of me should be OK too. I'm doing my best to stay positive and act like this test never happened.
The purpose of this blog is to share my experiences with ABVD (Adriamycin, Bleomycin, Vinblastine, Dacarbazine) chemotherapy treatment for Hodgkin's lymphoma. I hope this takes some of the mystery out of treatment for cancer and makes your own experience more pleasant. I was inspired to create this blog by Jon, the author of Adventures in ABVD. You can compare his experience to my own at http://www.adventuresinabvd.blogspot.com/.
Jamie
What? Me worry about hair loss?
Feel free to email me at jdstorella@verizon.net.
Background
I'm 43 years old and live in a suburb of Boston, Massachusetts.
After decades of having a stuffy nose and breathing through my mouth I decided to have surgery to correct the blockages in my airway. The procedure included fixing a deviated septum, cauterizing enlarged turbinates and removing huge adenoids. The surgery was successful (and painless) and my breathing improved dramatically once the splints were removed from my nose a week later. My care at Melrose-Wakefield Hospital was top notch and the staff was kind and professional. I felt better than I had in ten years.
Two days later I received a call from the office of my ENT. I was told that the biopsy of the adenoid tissue that was removed was inconclusive and the doctor wanted to see me that day. I learned that two hospitals had reviewed my biopsy and thought I might have Hodgkin's lymphoma. I would have to wait a week to have more sophisticated tests performed at Massachusetts General Hospital. Boy was that a long week!
On November 16, 2007, the diagnosis was confirmed. I had cancer. I was told that it was a highly curable form of cancer and that a CT scan suggested that it may have been caught in a very early stage. A PET scan confirmed that it was located in a single area of my body. Since I had no symptoms I was diagnosed with stage 1A Classical Hodgkin's lymphoma, a cancer that affects only about 8,000 people per year in the United States.
After decades of having a stuffy nose and breathing through my mouth I decided to have surgery to correct the blockages in my airway. The procedure included fixing a deviated septum, cauterizing enlarged turbinates and removing huge adenoids. The surgery was successful (and painless) and my breathing improved dramatically once the splints were removed from my nose a week later. My care at Melrose-Wakefield Hospital was top notch and the staff was kind and professional. I felt better than I had in ten years.
Two days later I received a call from the office of my ENT. I was told that the biopsy of the adenoid tissue that was removed was inconclusive and the doctor wanted to see me that day. I learned that two hospitals had reviewed my biopsy and thought I might have Hodgkin's lymphoma. I would have to wait a week to have more sophisticated tests performed at Massachusetts General Hospital. Boy was that a long week!
On November 16, 2007, the diagnosis was confirmed. I had cancer. I was told that it was a highly curable form of cancer and that a CT scan suggested that it may have been caught in a very early stage. A PET scan confirmed that it was located in a single area of my body. Since I had no symptoms I was diagnosed with stage 1A Classical Hodgkin's lymphoma, a cancer that affects only about 8,000 people per year in the United States.
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5 comments:
Jamie, Jamie. We are staying closely tuned in through your Dad and John, hearing Janet's thoughts. We are hanging in there with you Jamie, expecting this to get straightened out, and more encouraging results to show up soon. I am sure it's hard not to get a glowingly clean report after all you have been through. No doubt we are dealing with one more medical system complication. Think good thoughts, and have a restful weekend if you can, dear cousin. We love you. -- Ventana
When they suspect a false positive, don't you wish they'd just make up something like "giant flood in the reading room---all tests ruined" instead of causing the understandable -but-most-likely-needless worry? for another three weeks?!? Geez, doc, ain't you ever been a patient?!? I'll be thinking of you these weeks, my friend. ---Beth
I wish you didn't have to wait soooo long to find out. We are praying for you, and hoping to hear some good news. The Smith Family
Hi Jamie,
I too was diagnosed with Hodgkins lymphoma in December 07. I went through my 4 cycles of ABVD, which ended on April 18th. I had a PET scan on May 5th and my results too showed a new area of uptake that wasn't in my original scan! I had a biopsy and, thankfully, it showed no signs of malignancy. The month I spent waiting for the biopsy and then the pathology report were awful, so I know what you're going through. Hang in there and know that there are other who know exactly what you're going through.
Best wishes and god bless,
James
Jamie, stay strong, I'm on the same path. I have been diagnosed with Hodgkin's Lymphoma on Jan 3, 2008 and have been on Chemo (ABVD) since Feb 1, 2008. After the 8th session (4th Cycle) I had a PET Scan with false positive results, it showed up so many activity in the bone marrow, as well as testicles, but no activity in the mediastinal area where the original malignacy was, so I'm thinking the PET Scans are no so precise as doctors believe. My Hematologist told me that the increased activity in the testicles area may be a physhiological change or reaction, as well as the increased activity in the bone marrow, doctor said that after chemo is normal that the bone marrow increases it's activity because is recovering and producing a lot of cells. Actually I'm on the 10th session (5th Cycle) of Chemo, and need to complete 2 more sessions (1 cycle more), then my doctor will order another PET Scan, a testicle sonogram, and a Torax simple X-ray to see if I'm out. Hopefully I'll be out of this, I got a lot of Faith in Jesus Christ my Lord, and I'll pray for you to him too. GOD Bless you Jamie !
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