My Brother (age 35 years) was diagnosed with SCC of soft palate and went thru CT+RT, and still fighting side effects.
We went for PET scan 85 days post treatment. the findings are very similar to the PET pre-treatment. The Dr has advised us to come back on Tuesday where our case would be discussed with multi disciplinary team.
our doubt is they didn't treat 2 lymph nodes during the treatment.
What questions should we asking to the Drs on Tuesday??

Thanks

I would ask for a punch biopsy of the soft palet. Not sure what to do about lymph nodes but can tell you that my recurrance came in a lymph node so if it were me I would discuss a neck disection with the doctors. They can also do a needle biopsy of the lymph nodes so maybe that is the next step.

Biopsy's should tell you if the cancer remains although that is harder to determine with a needle biopsy in lymph nodes. Sometimes they do not get enough material.

Yup to what Kelly said! Biopsy the palate (I'm surprised they didn't remove it surgically prior to rads and chemo) and a neck dissection should have been part of the surgical equation. For HPV positive cancers this isn't a given but for non HPV it is often part of the initial treatment. Best of luck tuesday. Hugs and prayers to you both.

Thanks Kelly and Cheryl...

During our first treatment. we didn't get good guidance from the Drs. We opted for costliest hospital and procedures but now I think we were not informed on so many aspects. I think this forum was more helpful than drs were!!

Cheryl: We did ask drs, if we need surgery and we wanted to opt for that route but drs were affirm that we dont need it. they also confirmed that Cancer hasn't spread to the neck and seems they had completely ignored the first PET.

Kelly: at the original site of cancer, my borther doesnt have any lesion or pain now and it seems completely gone. we dont understand why PET is still showing tissue fullness at the same site. Is PET mis reading a scar for cancer? the recenet PET shows regressions of both the tumor. is that good sign? should we wait more?

We wanted to be more prepared this time so we could get better outcome this time.I cant see my very healthy brother suffering this much.

Any advice is muce appreciated!!

Let me share one fact with you cancer can seed to other areas (I'm sure you know this) - usually with tongue cancer this is the nodes first. I had 2 cts and an MRI that said I only had the tumor in my tongue. I could feel a node pop up over a 5 week period between dx and surgery - the mri which was negative - was 3 weeks prior to surgery - - my dr. Had already decided to remove 40 nodes from my neck regardless of the scans - my post surgical pathology showed one node full of cancer and it had broken through the capsule - microscopic cancer can sit in the nodes for a while before progressing to a tumor state - and it's undetectable on a scan until its a certain size.

Hopefully this weeks meeting goes well, push them to move quickly an do mething.

I would still make sure they do biopsies. They are simple to do and are the only sure way to know if the cancer is still present. I would also spend some time with them discusing the lymph nodes. Keep in mind that the treatment must kill all the cancer. Not 98% but 100%. Any cancer that remains will grow again and kill him. If the doctors are not sure they have achived 100% eradication of the cancer, your job is to find what you can do to get to that point.

I doubt them not treating two lymph nodes. There are between 200-300 lymph nodes in the neck anyway, most microscopic, and if two tested positive, and assume it was the soft palate involved (oropharynx), they probably treated from the top lip down to the bottom of neck, and possibly on both sides, which includes chain of lymphs in levels I-VI, usually level II is first involved in the oropharynx, to get any not picked up on the PET and areas likely to metastasize, usually when less than 1cm. As mentioned, ask if the lymph nodes were treated, and they can do a biopsy of the soft palate, and the Lymph nodes, which may be done by needle biopsy, if possible. It could be a false positive, necrotic lymph node, inflammation on the PET, so only a biopsy can tell if it's cancer or not. Usually for a recurrence in the lymph nodes a neck dissection is done, and may want to do that anyway, as a planned neck dissection, instead of watch and wait, even if negative. Soft palate may have several options. Good luck with the doctors.

A pet can pick up inflammation and healing, also infection the sugar solution they use shows the most metabolically active areas... Metabolism can occur for all those reasons. As someone else said... Regression is good but unless its gone, it will just continue to come back and grow. Best of luck.

Okey..We been to Drs today..

Their interpretation of the PET is: "Per PET, there was no cancer ditected in pre or post treatment PET. They did the biopsy (pre-treatment) cause there was lesion in soft palate. Now there is no lesion now so no biopsy needed; they would keep monitoring it.
For Lymph nodes : they would remove lymph node with 2 suv, and do post treatment biopsy. if positive they would remove other lymph nodes in a seperate surgery."

We did press for Biopsy but they were of the opinion that we dont need biopsy of soft palate right now and lymph nod biopsy is easier post removal.

:)we feel very relived as Cancer seems gone from soft palate.

Please let us know, if you have any inputs before we go for surgery or have inputs on Drs Opinion.