Janice

Christine and I understand from bitter experience the Anger, Guilt, and Fear that washes over a patient and caregiver when this cancer comes back. Anger that it came back. Guilt imagining something you did caused it. Fear that this time the damn cancer will win. While these feelings are universal,there is no rational basis for you feeling guilty about Mike's cancer coming back. You can doublecheck with your ENT surgeon, but when I got my PETscan in Oct 2008 with an "all clear", my ENT felt a lump in Nov 2008. PETscans often miss tumors at the base of the tongue when they recur so even if Mike had one immediately, it's no guarantee of a different result. Plus I ended up not getting surgery for that Nov 2008 lump until March 2009 which was four months later. By the time this cancer is noticeable when it returns at the base of the tongue, the damage has already been done.
A false PETscan result like I got could have meant Mike would have gone far longer before getting the real diagnostic test:
the biopsy.

More importantly, don't give up on having additional radiation for Mike. Since you are going to John Hopkins, ask specifically about using CyberKnife for radiation. If they tell you it can't be done, ask them to double check with Dr. K. William Harter of Georgetown University Lombardi Cancer Center's radiation department. I know for a fact that while the run of the mill radiologists simply accept the "maximum" radiation guidelines as Gospel truth, experts like Dr. Harter know that while difficult, radiation can be done to the same spot already irradiated.
The Cyberknife has such a range of motion and focus that an expert can program it to deliver the radiation to the same area and tumor that has been "maximum radiated" but use somewhat different trajectories thru the head and neck than the ones used with the IMRT machine. The RO needs access to the plotting and graphs used in the IMRT to make sure he can avoid the same entry tangents as much as possible. The target remains the same.
Bear in mind that the situation has to be as dire as Mike's to be worth the extra risk. When my cancer came back, I did not want the surgery so I went to Dr. Harter again and asked for radiation. He said it would be better to get the surgery and gave me the same advice you see on the boards here about "maximum radiation" and guidelines etc. It was only when after the surgery, my margins were not great and the pathology report showed perineural involvement that Dr Harter reconsidered on the basis of my ENT's reguest. He stressed that he could not use IMRT but only CyberKnife. He warned me that the extra radiation would probably mean I'd never swallow plus have lots of side effects but it was all worth the damage to me if it stopped this cancer from coming back yet again.
It's just a matter of physics and calculations of the path of the radiation beams. It is outside the guidelines, but then both Mike and my cancer acted outside the "guidelines". They do not usually use CyberKnife for head and neck cancers but prostate and brain tumors so don't expect them to volunteer it. You will have to bring it up.

I also had a second round of chemotherapy but that appeared to be within 'guidelines".

So sorry to hear this.
Charm

Last edited by Charm2017; 01-03-2011 01:19 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13