Late yesterday afternoon, I received a voice mail message from one of Dr. Lerner’s office staff, passing along a message about my test results. “It’s good news,” said the cheery voice in the recorded message. “The doctor asked me to tell you that your bone marrow biopsy came out clear, and your PET scan report was also good.”This wasn’t nearly enough information for me, so I phoned back. After a positive needle biopsy, I didn’t think the PET scan report could be unambiguously good.
It wasn’t. The person who’d left me the message had already gone for the day, but one of the nurses pulled my file and took a look at the narrative report, while I was still on the phone. Yes, the bone marrow biopsy report is good news, she said – no sign of cancer there. As for the PET scan – as I suspected – the news is a bit more ambiguous.
I asked her to fax me the actual report, and this morning I take a look at it. Here’s the summary portion, in the usual esoteric medical jargon:
“Enlarged hypermetabolic mediastinal prevascular lymph node is highly suggestive of malignancy/lymphoma.
There has been some enlargement of a right supraclavicular lymph node still abnormally hypermetabolic and is suggestive of residual lymphoma.
Spiculated mesenteric mass appears stable morphologically compared with multiple examinations dating back to 9/1/06. The metabolic activity is slightly increased in this region. I would still favor this to be related to previously treated lymphoma. This should be followed by PET/CT scan to exclude any current or residual disease.
Asymmetric focal hypermetabolic activity in the posterior right submandibular gland and in the anterior medial right parotid gland is noted and could be further evaluated by MRI. No discrete mass is seen on CT.
Previous enlarged hypermetabolic right submandibular lymph node has decreased in size and no longer demonstrates abnormal metabolic activity.
Stable circumscribed small liver lesions probably cysts although too small to characterize. Continued followup is recommended.”
“Hypermetabolic” is a word that occurs repeatedly, which is no surprise. What a PET scan does is measure the body’s metabolism of a radioactive sugar solution that’s injected into the bloodstream ahead of time. That radioactive tracer solution gets gobbled up by rapidly growing cancer cells. Any large concentration of sugar-craving cells lights up on the scan pictures as a “hot spot” that could indicate cancer.
Looking up some words in an online medical dictionary, and relying on my memory for others, I come up with this rough translation (remember, of course, that I'm not medically trained, so take it for what it's worth):There’s an enlarged lymph node in the thoracic cavity of my chest, behind the breastbone but in front of my lungs, that looks cancerous.
A lymph node by the right collarbone has gotten a bit larger since the last scan, and shows signs of returning lymphoma.
The shrunken remains of my abdominal mass haven’t changed in size or appearance, compared to any of my previous, post-chemo scans, although there are signs of possible metabolic activity there. Better keep an eye on this area with future scans, to make sure this isn’t a recurrence of cancer.
A couple salivary glands on the right side of my face are sucking up more of the sugar solution than they should, although there’s no discernible mass in this area. These could be further checked by an MRI scan.
The previously enlarged lymph node by my right jaw appears to have shrunk, and is showing no abnormal metabolic activity.
There are some lesions on my liver that are probably just cysts, but should be monitored in the future, just to make sure.
What Dr. Lerner may have meant by “good news” in the PET scan report is that things haven’t changed a whole lot since my last scan. The lymph node by my collarbone (the one that was biopsied) has gotten a little bigger. The abnormality by my jaw has shrunk in size, and doesn’t look too worrisome. The enlarged lymph node in my chest definitely looks like a recurrence of lymphoma.
“Good news” is a relative term. It’s looking more and more like I’ve got some recurring, indolent lymphoma – the slow-moving variety. It’s not aggressive, and that’s good news – but, it’s still cancer.
I’ll cheerfully accept whatever good news they’re willing to dish out. In the meantime, I’ll wait for the full story after I see Dr. Portlock at Memorial Sloan-Kettering on Tuesday.
5 comments:
Hello,
I have been following your blog and a few others linked with cancer. I feel you could really benefit from Low dose Naltrexone.
You seem to do your homework in researching material so this might be the solution for you now to stabilize the lymph nodes.
I have stage 4B ( metastases lung)Oncologist said nothing further could be done only palliative chemotherapy. My blog with link, my scans, charts, story, etc. www.ldn4cancer.com/
I was told of my terminal metastases in February 2007 with no chance to survive as no treatment would benefit. My good friend told me about Low dose Naltrexone and have been on it since. It is inexpensive only about US$38/per month and non toxic, no side effects.
I am doing great and feel fine and shouldn't be typing this to you now as I had only 4- 9 months. Your oncologist/doctor won't know about it. Mine didn't and dropped me as a patient. I contacted a local GP who didn't know about LDN but was interested and did his research and now he is prescribing it for many of his patients for various ailments.
LDN can stop /or regress cancer but not a cure for metastatic cancer. But stops it right where it is without any further progression.. I take it for cervical cancer now metastatic to my lungs and have slowed and stopped progression.
The websites below explains what it is and what it does...
http://www.lowdosenaltrexone.org/
http://www.lowdosenaltrexone.org/ldn_and_cancer.htm
http://www.susiemaui.com/low_dose_naltrexone.htm
http://health.groups.yahoo.com/group/LDN_4_cancer/
I recommend reading this book-
http://www.marybradleybooks.com/LDN%20Book.htm
Be well,
Dee
Did you have a simple PET, or did you have a PET/CT?
Thank you, Dee, I'll take it under advisement. I'm glad you think low-dose Naltrexone is working for you, but I have a preference for trying mainstream treatments - the products of carefully monitored clinical trials - first, before moving on to therapies like this one.
I realize that, in your case (with the oncologist having said there's nothing for you but palliative treatments), you may feel you have nothing to lose. And, you're probably right. Which makes the benefits you're experiencing all the sweeter.
As for me, I'm not in the same place you're in, so I'm going to stick to the conventional treatments. Unless and until I've exhausted all other possibilities, I don't want to take any medication on my own that could jeopardize the success of other treatments.
My good wishes and prayers are with you for continued healing, wherever it comes from and whatever form it takes.
Vance,
I had both a PET/CT fusion scan, and accompanying CT scans of everything from my neck down to my pelvis. The radiologist's report I'm quoting here is informed by all those scans.
Looks like your radiologists are like ours: they don't seem prone to give measurements of lymph node sizes.
I agree with your approach to "alternative" treatments. As Terry Hamblin has pointed out, "alternative" is just another word for "unproven." Because if it becomes proven, then it is no longer alternative.
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