My 57 year old friend had a parotid tumor removed about 3 weeks ago. Pathology said neuroendocrine cells, likely from a primary elsewhere. Whole body scan showed nothing else. Further treatment should start very soon. Doc refers to radiation group. But I think chemo is likely most appropriate. Anyone can help?

Welcome to OCF! What a good friend you are to be helping you friend.

Chemo alone is not effective in eliminating OC. Chemo is used to boost the effectiveness of radiation.

The link below was taken from the main OCF pages. It will help you to understand more about the treatment of OC.

OCF treatment info

Can anyone help? Yes his cancer docs. He can get multiple opinions to feel comfortable but he should only listen to them.

Welcome to OCF.

I am not certain if people here would be able to help as when we talk about Oral Cancer, it is Squamous cell carcinoma.

I am not a medical professional but from my past reading, I believe that your friend here is probably dealing with Small Cell Neuroendrocrine Carcinoma with Parotid presentation. It is rare but curable and just like SCC, this too will have to go with Surgical removal followed by Concurrent Chemo-radiotherapy.

I see that surgery has already been performed, so progress with the rest of the course of treatment. Yes, it has to be concurrent chemo-radiotherapy.

Even though metastatic evaluation (was Whole Body PET performed?) was negative, if your friend did not had a second opinion, I would suggest one to rule out Merkel Cell Carcinoma.

Good to see caring friends! All the best to both of you.

Thanks for your input. My sister had a small cell neuroendocrine cancer of the bladder a couple of years ago. She received a rapid and heavy chemo regimen based on cisplatin, and came away cured (apparently). The surgery after treatment found the tumor to be completely necrotic.

It's good education for me to know that normal oral cancer is a squamous cell type. The small cell neuroendocrine type is fast moving (brisk mitotic rate in the pathology report) and my fear is that my friend will not get the adequate chemotherapy going quickly enough. But I need to attune my comments to the wishes of my friend and his family.

Here in rural Hawaii the medical facilities and staff are not of the quality found around most urban areas. And many people born and raised here are accustomed to leaving decisions in the hands of the trained professionals. Without being fully versed in the specifics of why a particular treatment is chosen.

Thanks for replying. You indicate that chemo alone is not effective. In my friend's case so much depends on the accuracy of the pathology report that we received. Since that report indicated that the parotid tumor was removed with clear margins, and also that the tumor came from an unknown primary, then my logic tells me that localized radiation is not a necessary or curative path. Local lymph nodes showed no evidence of cancer. But of course the decisions will be made by the doctors on the case.

Unknown Primary can mean the Primary has already been eliminated or they just haven't found it so radiation concurrent with chemo may be justified. I believe it's always best to seek the highest level of treatment facility available even if that means travel. Keep us posted.

Even with an unknown primary, some patients will still undergo radiation treatments. Their doctors want to ensure every teeny tiny cancerous cell has been removed. They use radiation to "mop up" and make certain nothing was missed.

Best thing to do is to find the top doctors, usually found at a comprehensive cancer center (CCC). There the specialists will work as a team and each case is discussed to find the best treatment available for that individual patient. Even with the team based approach of a CCC, a second opinion is still a good idea.

Christine,
For sure you are right to go to a top cancer center. Unfortunately that is not likely to happen in this situation. I've also been reading a lot more (on line) about these parotid gland tumors. And Eshwar's suggestion to rule out Merkel cell diagnosis seems right on point as well, given that my friend works in the sun every day.

So far the chronology of events has been a bit slow but still good outcomes are possibly in reach. He did have a clean PET scan of the body in June. My role if any is still unclear, so that's an overriding consideration for me. I'll keep in touch.

I saw my friend and his family today, he has started radiation treatments, about an hour's drive from home. Treatment plan calls for six weeks. No chemotherapy that I'm aware of. Hopefully this is the right approach for what he's got.