Need help re: recurrence and waiting for the next step...

Background: My husband was originally diagnosed with GBM Oct 1, 2008, right temporal lobe.  He had a gross total resection, and had a stroke during the surgery, and was left with a visual field cut and hemiparesis on his left side.  He spent the entire month of October in the hospital, then in a rehab to help with the stroke deficits. (He is doing a bit better now and can walk very short distances with a brace and hemicane.) 

In Nov/Dec of '08, he had the standard 30 days of IMRT radiation and 42 days of concurrent Temodar.

In January '09, he began a Clinical trial  for the CDX-110 vaccine.  He received monthly injections, plus 360 mg of Temodar, 5/23.  He completed 9 Temodar cycles. He was getting MRIs every 56 days. 

All along, there has been a small spot on his MRIs (maybe dime sized) that they had been watching. His NO was not sure if it was tumor, necrosis, or just  the way he healed.

 His October 8th MRI showed that the enhancing spot has grown.  I don't know exactly how much, only that it was "not a huge progression, but it's still concerning that it's growing despite treatment."    Now that he has progressed, he won't be in the study anymore. 

His NO is meeting at the team conference early Thursday morning 10/15, and we have an appointment with the NO to hear what they decide is the best next step.  The nurse said that when there is just a small amount of progression, sometimes what they do is get another MRI in about a month, and then reassess.

I am somewhat uncomfortable with this.  I have faith in his doctor, but waiting a month is hard.   I will feel like this is time wasted, possibly allowing the tumor to grow, when we could be getting treatment going, like Avastin, or something else. 

I HATE to hear the word craniotomy again.  It makes me sick to think about him going through that again. 

So, my question is...if they decide that it's best to wait a month and get another MRI, do I just accept that?  I hate to question them.  I respect his doctor's opinion. Do I try to be more proactive and try to insist upon getting treatment going sooner rather than later?  I am so fearful that I will have regrets, and look back and say "I really should have been more insistent that we try something sooner."   Especially since we all know how quickly GBMs can grow over a month's time.  

Any advice is appreciated. 

 

 

 

 

 

I think the best thing is to let the doctor know exactly how you feel about waiting.  The "nodule" has grown despite the extensive treatment he was undergoing. What will it do if left untreated for another month?  You can be insistent.  This is your husband's life you are fighting for.  Since you haven't spoken to him yet and the doctor is waiting until after conference, it means he is seeking the advice of others on how to proceed.  Listen to what the team suggests and perhaps there will be options to consider.  Is it a small enough lesion for gamma knife or cyberknife?  Ask a lot of questions and be prepared for whatever decisions you need to make.

When they were unsure about dads tumor back in Feb, the doctors at Duke ordered a PET scan to confirm if it was active.  Luckily the PET was cold, and it was just the treatments causing swelling and general distress to the area that made it look like possible progression.  I believe this is what they refer to as Pseudo-Progression. 

 

Thank you.  I hadn't considered the possibility of pseudo-progression, even though I've heard of it before.  One reason why I love this site and its member so much! I'm not thinking clearly.  It makes more sense now to me why they may take a "wait and see" approach. 

OMH,

Both jhawk and lorre are right...ask, probe, and question about waiting, but also look into the PET scan...it would be good to know what's happening on the cellular level.  That's what they did with my hubby and it was cold... meaning good news...even though scans looked weird.

all love,

janni

My thoughts are the same.  I would ask for a PET or MRS scan to help determine if it is tumor or necrosis.  Either one is good it depends on what the Dr. prefers altho I have been told it has to be a certain size for the PET.  I would also watch him closely to see if any of his symptoms get worse or if he develops new ones.