I have not really posted much since finding out about my issue back in June. Once finding out I was HPV positive and the high curative rate of this type of oral cancer, I almost felt guilty. The treatment was hell as is the recovery, but compared to what some of the members of the board have endured, I felt fortunate. I went to Moffit. My Dr's were confident that they had this. I endured the 35 rads and 6 chemo treatments. It was brutal.
Originally diagnosed as stage 4a, because of an enlarged lymph node on the left side of my neck, the Dr's did not seem as concerned about the tumor as it was rather small. In fact, they considered not using chemo at all, but lymph node had them concerned. So we did the cisplatin
Yesterday, I went for my 3 month pet scan. Dr. and his assistant were both very pleased with the outcome. The lymph node issue had been resolved, and the tumor activity was greatly reduced and I was told it was not uncommon for this to occur. They told me this was very positive but they could not tell me I was cancer free. They scheduled another scan for late February to assess. Obviously I was disappointed about not receiving the all clear. My question is has anyone else being HPV positive had this happen after their first scan? How did it turn out?
I am trying to remain positive, but.... its hard, scary...
Ward, please feel free to post! We are here to help each other. What you go thru and write about could be exactly what another patient is going thru and can help hundreds of others.
I cant remember seeing any patient who has been given a "cancer free" diagnosis on their first check up after rads/chemo. I would highly doubt any physician would say that this early after finishing rads. The fear of a recurrence is something we all have. In time, this fear does slightly lessen but it still hangs around in the back of our minds for a long, long time.
Hang in there. We all know where you are coming from, we've been there too.
Ward,
3 month PETs are notorious for false positives. The BOT area was highly radiated. This will cause your body to repair the tissue which will cause the uptake to be elevated.
3 months was chosen because it a balance between when enough healing has occurred and a chance to catch other problems early. Pushing it out 6 months make false positives much lower, but I am not sure if "not knowing for 6 months" would make the patient happier. I would be happy with "very positive".
Thanks Christine, I will share.
Thank you for the insight hockey dad.
Hi Ward,
Well, you're at a top CCC that is part of the NCCN network, and I'm sure you're in good hands!
I often heard the terms stable, all clear, no signs of cancer, cancer free and such, but not "cured" which one of my ENT says will be at 5 years. As long as there is no suspicion of cancer, I don't care what words are used.
I agree what was already said. PET scan are highly sensitive, and from one report I read are in the mid 90% accuracy range at 3 months, even higher at 4 months, so time does matter. Just as important, is proper patient preparation such as diet, no chewing gum, coughing, swallowing, etc. and timing of the PET after the FDG, which can effect uptake. Then comes the experience of radiologist who interprets the scan. Besides the scan report, I obtained a cd copy to bring to my ENT, radiation and Medical Oncologist. I can't say how many times my doctors were happy having done so as they may not be posted fast enough as were my visits. Oncologists never seemed to review the scans other than the report, to my knowledge.
I've had enlarged nodes after treatment. Once my radiation oncologists waited 5 months to do a scan, in belief it was fluid, necrotic. which then came back negative, Other times it was suspected to be inflammation, but not suspect.
NCCN guidelines recommend follow-up scan 3-6 months post treatment, but it's only for certain disease, oropharyngeal is included, but for T3-T4 disease only. Anyway, all my doctors followed the 3 month post treatment scan, then 6 month repeat scan, sometimes alternating between MRI since I can no longer have CT contrast.
There are several schools of thought; watch and wait, a planned neck dissection or one that is responsive after treatment response. I think if the tumor hasn't shrunk more than a certain percentage, has a certain SUV, where it's located, then there might be more concern, and have an FNAB, a direct biopsy and or another type scan done. Even then it's difficult to say after treatment, and had enlarged lymph nodes that were positive by FNAB, which showed mixed pathology, but proved negative by surgical biopsy, and others that weren't, so it worked out.
It depends on the doctor too. Not sure who you saw, Medical or Radiation Oncologist, but had one oncologist that sent me for an MRI after a suspect PET, which came back negative. There should also be planned follow-up visits with your medical and radiation oncologist, ENT every 1-3 months the first year, increasing in time as years go by where they do a visual and palpable exam and some flex scope, so you will be monitored.
You can also do self monitoring by visual and palpable exam. I found all my cancers in the lymph nodes, cervical neck, except for one, which were then followed up by doctor visit, biopsy, and scan.
I hope this helps and good luck.
Hi Ward,
try not to worry about the three month check. as said earlier it is often not very accurate. Even at nearly 3.5 years out my ENT is not totally ready to say cured. He is willing, for my diagnosis and my case, to basically say once I cross 3.5 post that he unofficially called me "cured".