Hello I am an 8 yrs alk+ cancer survivor. Fast forward... I had Mets in the brain that cleared with Alsensa except for one. When this progressed it was radiated and 6 months later I developed radiation necrosis. Took dexamethizone for 9 months trying to save my right peripheral vision. Side effects of Dex to severe so tapered off, lost vision and now have avascular necrosis in both hips. Over last 2 yrs have had 2 rounds of Avastin treatment for brain swelling and headaches. Last MRI showed 2.5cm x 2.9cm x 3.5 cm. (2mm increase) Drs can't tell if necrosis or met and want to surgically remove. Dr doesn't recommend going to next alk drug without knowing if it's cancerous. I'm concerned about brain surgery risks.
Question: Is 2 mm clinically significant for a tumor this size. Is brain surgery really necessary at this time or could we watch It without jeopardizing surgical results in the future?
I would greatly appreciate your thoughts on this...
Thank you
Reply # - May 9, 2020, 10:31 AM
Hi B, Welcome to Grace. I'm
Hi B,
Welcome to Grace. I'm very sorry about your diagnosis and treatment side effects. This is a good question to be asking. I'll contact Dr. West to see if he has any thoughts to share.
Congratulations on your response record. You know what they say, responders respond.
All the best,
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - May 9, 2020, 11:02 AM
These cases are agonizing
These cases are agonizing difficult, and we are often faced with ambiguity. 2 mm isn't a big change, but it's often followed by another few mm, then more, and each time an ever-escalating concern. I've definitely seen cases in which we all became anxious enough with interval growth and then went to surgery, just to find no viable cancer. But it's a question of risk of potential over-treatment vs. potential under-treatment, and being unable to really know what's happening with taking it out.
It's obviously an ambiguous situation. Perhaps you should ask yourself which would be worse: undergoing surgery and finding that there's no viable cancer, or following it and having it progress, possibly significantly if it is viable and develops a new mutation along the way?
Good luck.
-Dr. West