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.

Correction on my last post. He's not getting treatment yet. He's hooked up with the radiation oncologist and they'll do a scan in the next few days to determine whether radiation to the brain should also be included. Also discussion about whether low dose chemotherapy should be applied while radiation is ongoing. But his appointment with the chemo doctor is still 2 weeks away. So I just reemphasized my concern about the slow pace of things. His surgery and pathology results were nearly 5 weeks ago.

I know you said a CCC is not an option but it really does make a big difference where a patient is treated, especially in complicated cases. I still say it would be a good idea to get them over to a CCC where a whole team of specialists will get together and discuss the patient on a case by case basis. They will all sit down and come up with a treatment plan together. This approach is what is used at the top CCC's around the country.

The top CCCs arent always convenient for every patient but there are free lodging places to stay nearby each one and also free airfare too. I just noticed you made other posts which said your friend already started their treatments. Your friend may want to check into a place to stay if their commute is an hour each way. There could be free places near their current treatment facility. Let me know if you need the links for the lodging.

If they already started treatments its doubtful they will get chemo as their appointment isnt for another 2 weeks. By the time chemo would begin, they would be half way thru rads. Your friend should call the chemo doc and tell them they need an earlier appointment, if necessary speak to the office manager or get on the standby appointment list. Im surprised their rad doc didnt wait until they saw a MO to start.

Wishing your friend all the best with everything!




PS.... A while back I sent you a private message (PM). Look at the menu bar that goes across near the top of the page. Click on the flashing envelope next to"My Stuff". Please make a signature when you can it will help us to help you. Detailed instructions are in the PM. Thanks!

As Christine mentioned, there are free lodging facilities. I have to mention American Cancer Society's Hope Lodge. I stayed at their largest in NYC with 60 rooms,12 floors, this past October/November for free. It has everything you need, expect no meals. Anyway, each floor had a kitchen, laundry, and sitting room, plus other amenities, services and entertainment. Staying at a similar hotel in midtown would easily cost $400 a night, and I worked in hotels in manhattan for 25 years, and can say this place was very nice. Anyone can stay, some as long as 6 months, even with a companion, which is preferred, as long as you live an hour away, even in other countries. They usually have them near top cancer cancers, about 26, throughout the Country. Good luck

Bilge,

I will affirm what Christine and Paul said about a CCC. I didn't think a CCC was an option due to the cost of lodging and travel but I was fortunate to get a room at Hope Lodge in Baltimore which is about 1.5 miles away from Johns Hopkins where I was treated.

I had an unknown primary SCC MO to the lymph nodes stage IV. They did a selective neck dissection and chemo/rads 6 weeks 30 rads 6 weekly chemos.

I can't speak highly enough of my team. They are tops in the field and took great care of me. Check out the link below. Maybe there's a hospital listed near you.

http://health.usnews.com/best-hospitals/rankings/cancer

Positive thoughts and prayers

"T"

Why are they considering radiation to the brain? Earlier you posted no signs of cancer anywhere else. I'm confused. I also agree these delays are unnecessary. I too would look for a CCC and QUICKLY.

Thank you all for your suggestions. If I were the one with the problem I'd be doing exactly as you recommend. I went to my friends house 2 days ago and talked seriously with him and his wife for about 15 minutes. My thrust was clear, they are getting bounced around between 3 doctors (surgeon, chemo, radiation) and he's the loser as it moves so slowly. My recommendation was that he call his surgeon right away (he has a followup appointment in a week) and ask him if he is confident that the cancer is/was only local, even though the pathology report said it came from an unknown primary. If he will not decisively say yes, then tell him you want to start the appropriate chemotherapy right away. He and the wife took me seriously but were discussing which of the two should make the call. I saw him briefly today, and he had nothing to say about what we discussed on Tuesday. My sensitive problem is that I cannot intrude too forcefully. Believe me, this is very front and center for me, but I cannot overreach.

In my discussion with them on Tuesday I said that if they went to a major cancer center like Mayo or MD Anderson or somewhere all the docs would be working together and there would be no delays. And his wife indicated that her friend had also suggested that they go to a major cancer center. But I don't think it is going to happen. They have established a good rapport with the radiologist who is smart and competent, and probably they don't want to throw that away. I'm afraid I need to leave the ball in their court, once again. They express appreciation for my caring and interest but never reach out proactively to me.

He's a friend that I've played baseball with for a couple years, but we've not been serious friends about the meaningful things in life. Ethnically different, different education levels, the common ground is not deep enough to encompass this easily.

PS. Thanks Christine for info re the flashing envelope. I will follow up.

David,
My sense is that the radiologist is ready to start radiation right away, but wants to be clear that brain radiation is not advisable, else he'd perhaps be doing both with each visit. I believe the schedule is for 6 weeks radiation. This'll start quickly, but the chemo doctor is a laggard both now and via reputation, and I'd consider my friend lucky if he started chemo within a month. It is sad for me to watch this. There is more I could say about history of treatments here (and with my friend's family) but discretion precludes it.

Im sure it must be very difficult to watch a good friend struggle. Its not the best situation. Im very glad you had a good talk with them and I do understand you are walking on eggshells. But...... being that you obviously care very much for your friend, you must speak up and be even more blunt. They need to understand this isnt anything to fool around with. Oral cancer patients can easily die when they arent treated properly. Oral cancers survival rate is only around 50% of all patients diagnosed will still be alive 5 years later. When I see someone who is bounced around like what you say has happened to your friend I see history repeating itself a few years down the line. I see a patient who didnt take their health condition serious enough and is putting their life in jeopardy.

I know its not easy to push someone who isnt in your immediate family to seek out other doctors but please think of it like this..... If this was reversed and you had a dear friend who knew you were making a life and death bad decision, wouldnt you be grateful to them for telling you? I would also refer them to this site for help.

Its great to have a rapport with a doctor. The best doctors dont have to be "nice" people, they have to be highly skilled. Good bedside manner helps but it isnt what will make a cancer patient well. How I wish your friends would spend just 5 minutes talking with me. I speak to oral cancer patients over the phone all the time. I will send you another message with some info to pass along to your friend.

Good luck!!!!

If they don't want to hear common sense from you perhaps you could offer my contact number and I'll speak to them. Bottom line...his life is in the balance and this is a horrible way to die and to watch someone die!

Bilge, you are a good friend and your intentions are the best.......But I honestly don't understand your assumptions.

Why do you insist that your friend have chemo? Not all oral cancer treatments incorporate chemo. If it's not medically necessary, chemo should be avoided because the side effects can be severe and prolonged. In fact, the Natl Cancer Institute's treatment guidelines for parotid tumors don't mention chemo at all: http://www.cancer.gov/cancertopics/pdq/treatment/salivarygland/healthprofessional

Why do you believe that your friend, his wife, his surgeon and his radiation oncologist are all incapable of making reasonable treatment decisions? Isn't it more likely that they have information you don't, than that you have information none of them possess?

The only thing that could make a cancer diagnosis worse would be well-meaning casual acquaintances second-guessing one's choice of treatment and doctors. It's good advice to explore the options, good advice to consult a CCC, but once you've had your say the decisions belong to your friend and his family.

Here are some ways to get your friend's back no matter what treatment and docs he chooses: Acknowledge the skill and determination he's demonstrated in getting that tumor out so quickly and finding that smart radiologist. Offer to mow the lawn, take the kids to the zoo, repair the porch railing or anything else you can do to ease the coming difficult weeks. Strive to be a source of strength and support, not doubt and anxiety.

Many clues in your post suggest that you are aware at some level that your interventions have probably become unwelcome. You mention the casual nature of your friendship, your sensitivity to boundaries, your uncertainty about your "role," the fact that your friend never sought your input and now has no news for you. Trust that small inner voice telling you to back down.

I don't mean to offend by any means -- Your friend is lucky to have you in his life and is going to need your help getting through this.

I'm with Mamacita. You clearly have good intentions but you state you really don't know the fellow at a deep level. There are likely a number of factors that he has not shared with you that are influencing his actions and decisions.

I totally get the absolute importance of getting this issue diagnosed and treated by the best in the best facilities but in the end every person has to do what feels right for them. We can advise, educate, influence but not force people to act. Maybe time to cool it for a bit and offer encouragement as you can. don

Thank you Christine, thank you Mamacita, thank you all. Nothing could be more on point than what you are seeing and saying.

Here's more detail which'll help you understand how the treatment situation looks from my point of view. First the surgeon is on a different island than the chemo and radiation doctors and the patient, and those two doctors are not located near to each other. The surgeon did a fine job from all that I can see. I know the radiation doctor is a good one, so I have no problem with his work.

As it went, the surgeon only recommended radiation, and passed the reference to the radiation doctor. The radiation doctor upon seeing the pathology and whatever reference materials came, he suggested to the patient that chemo be included. The chemo doctor now in the loop is historically very slow to move, and so it is in this case. His expertise I assume is fine, but I don't know. There is another chemo doctor on this island.

On the more specific level, I know that most oral cancers are of the squamous cell variety. And radiation is a prime treatment. But the pathology here indicates small cell neuroendocrine cancer, which is quite similar to a common lung cancer type but is not common with oral cancers. My supposition is the uncommon nature is why the pathology (after surgery) indicates it arises from an unknown primary. The pathology report indicated it's poorly differentiated with a brisk mitotic rate. Patience is not a good option here.

My background with this sort of cancer comes from my sister who had bladder cancer 3 years ago with the same pathological type, small cell neuroendocrine. Her case was the subject of a weekly doctors workshop where the surgery was performed, and they recommended a heavy cisplatin based chemo treatment. She was referred to the same chemo doctor that my friend is waiting to see at this point. I was able to get the referring doctors to agree to take her themselves, off-island, if this local chemo doctor couldn't get her started within a few weeks. He didn't and she went off-island for her chemo and it completely did the trick and she is cancer free at this time.

Back to my friend... He is not isolated, his wife and grown daughter are with him and he has lots of good social and family friends and support. They are not in a space where they are prone to evaluate treatment specifics themselves. Only the daughter is truly computer literate. They want to trust a professional, but they are also unhappy with the slow pace at which things are progressing. I'm also a friend of the wife's brother, and he is helpful to me regarding how much to push and when to leave things alone.

I think this should just about complete the picture. Thanks for your concern. My sister and I spent serious time on the bladder cancer support network that was very helpful to us at that time.

Thanks for taking the time to explain everything! It helps to understand the situation much better.

I never noticed you were located in Hawaii, I just saw you were in the US so I didnt understand why they didnt go to a CCC immediately. Now I get it, Hawaii is pretty far away from the mainland and it would have medical care set up a little differently than how the states have it here.

As a friend there is only so much you can do to help. Hope your friend's situation turns out for the best. Im glad the daughter is computer savvy and can help get important info to her parents.

Best wishes to your friend!

I just found out today that my friend will finally be starting treatment tomorrow, July 29. He'll be getting a combo of radiation and chemo for 6 weeks. I don't yet know the specifics of the chemo that he'll be receiving. But I'll find out in due time. I can sure offer to do some of the transportation since it's more than an hours drive each way. I just write now to keep those abreast who helpfully responded to my initial posts of a a few weeks ago. I'm saddened that the treatment has been so slow getting going. But I'm keeping fingers crossed for a good outcome.