Doctor says husband's situation is rare

October 2022 my husband discovered a lump near his ear which turned out to be a tumor in his parotid gland. Grew very quickly in the 2 months before it was removed in December 2022. Biopsy proved it to be adenocarcinoma.

Doctors said it was rare to find this type in the parotid gland. He had radiation to clean up leftover cells.

Had a PET scan in January and they said everything was clear except a small place in his spine of which they said was "probably scar tissue". Because of the biopsy, they expected to see cancer in the prostate, colon or lung due to the markers. They were baffled when nothing was in any of those places. The pathology report stated that the tumor in the parotid gland was a metastatic tumor.

Had follow up PET scan in August and he now has mets in at least 9 places in his bones including his spine. The one small spot on his spine from January has grown to 2cm and he just completed radiation on it to relieve the pain. They have done all kinds of scans and tests. No tumor or mass in his prostate.

Did a biopsy on one of the lesions on his hip and it was the same as the one from his parotid gland last year. Adenocarcinoma with faint signs of prostate origin. PSA has been right around 6 for a long time.

The doctors are very confused and said this is all rare. They have also said repeatedly that this is life threatening. They started him on Firmagon last week. Any others heard of situations like this?

[GP24]

I know a patient who has mets from a prostate cancer, but the primary tumor somehow got extinct after spreading. They removed the mets via surgery and radiated the affected area after this. Then he got ADT.

[Hidden in reply to GP24]

When I asked one of the Oncologist how he could possibly have prostate cancer when there is no cancer in the prostate and he also said that on rare occasions the primary tumor can be very small and absorbed. This patient that you knew, did it ever metastisize to his bones? You are the first person who has replied to any of my post that has heard of such a thing.

[StayingOptimistic in reply to Hidden]

I am not a doctor and don’t have much experience with this who thing but just thought of a scenario where this might happen. There are veins that runs through the prostate, there is something called PNI. It might be the cancer cells just got through these veins , got out of the prostate, run through the blood stream and landed somewhere. At that time, if you scan the prostate, you won’t see anything. Does this make any sense, I don’t know but it’s the only scenario I can think of.

[anony2020 in reply to StayingOptimistic]

On slightly different question, is it possible to remove the primary tumor by TURP, so the rest of the cancer just died?

Dont mind me. I am just another layman trying to make some sense of the whole thing.

[j-o-h-n in reply to anony2020]

Keep trying you're beginning to make some sense............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/08/2023 6:22 PM DST

[Explorer08 in reply to StayingOptimistic]

Interesting that you mention PNI. I had perineural invasion (PNI) which was the pathway used by the prostate cancer cells to escape out into my system. You can Google perineural invasion to learn more about its mechanism.

[GP24 in reply to Hidden]

This is basically called "cancer of unknown primary" and happens not just with prostate cancer. However, if ADT lowers the PSA value and a PSMA PET/CT shows mets, it is prostate cancer. The patient I know had very big affected lymph nodes but no bone mets.

[Tall_Allen]

It is obviously not prostate cancer. Did the IHC give any clue as to its origin?

[Hidden in reply to Tall_Allen]

All pathology reports say prostate.

[Tall_Allen in reply to Hidden]

IHC was positive for NKX3.1?

[Hidden in reply to Tall_Allen]

Yes

[Tall_Allen in reply to Hidden]

Amazing that there is nothing in the prostate!

[Hidden in reply to Tall_Allen]

And that is why everyone is confused.

[StayingOptimistic in reply to Tall_Allen]

TA, what do you think of my answer above ?

[Tall_Allen in reply to StayingOptimistic]

Cancer eats and replaces healthy tissues. I've never heard of prostate cancer that is not found in the prostate.

[j-o-h-n in reply to Tall_Allen]

When they tested, those tiny wienie Mothers were probably at siesta......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/08/2023 6:26 PM DST

[anony2020 in reply to j-o-h-n]

Now who is trying to make some sense of this? 😂😂😂

Dont mine me. I am just another layman...never mind. You know the rest. hehe

[j-o-h-n in reply to anony2020]

Don't mind me. I am just a laying man trying to make it with some wrench's hole thing.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/09/2023 2:04 PM DST

[anony2020 in reply to j-o-h-n]

👍

[tango65]

Was the PET scan a PSMA PET/CT (Pilarify of Ga 68 PSMA)? Parotid glands and prostate cancer express PSMA. There are some reports of experimental treatment of metastatic parotid tumors with Lu 177 PSMA.

I would request a second opinion of the pathology slides.

pathology.jhu.edu/patient-c...

[maley2711]

Of course they are saying no cancer in prostate...solely because imaging doesn't show anything ? Could it be that PCa smaller than the size detectable by scanning has metastasized from the prostate.....I know that is definitely theoretically possible. I have heard of cases where man had to have 5 biopsy sessions done before PCa in prostate was was found !! We are constantly reminded that all type of scans have detection limits..even the latesst and greatest.

[pakb]

Is he on any other treatments? If they say they believe it's prostate cancer have they put him on any Pca treatments to see if they help?

[Hidden in reply to pakb]

Only Firmagon at this time.

[Hidden]

At this point anything theory is possible as far as I'm concerned. It's very frustrating that they have decided to try Firmagon and wait and see. I just feel like since it is life threatening according to them that they would be a little more aggressive. As of right now he is pretty healthy. He had radiation on the 2cm in his L4 and that has relieved the pain. He has a little stiffness in his back. Other than that he is still working and doing most of everything he usually does. My fear is they are going to take too long to figure it out and by then he may not be healthy enough to handle some of the treatments or it will have spread too much. He is 61 yrs old. Trying to get him into a bigger Oncologist group in hope someone will figure it out. I appreciate all of the ideas. At least now I have some ideas to throw at the doctors if they say "we just don't know " again.

[GP24 in reply to Hidden]

Taking Firmagon will stop the cancer from growing further. You do not have to worry that a different treatment should be done quickly now. If Firmagon results in a decreased PSA value, this will confirm PCa again. If this is the case your doctors will add Xtandi to Firmagon to make ADT even more effective.

I personally would try to get into a trial with Lutetium 177 therapy while he is on Firmagon and Xtandi. This will radiate the prostate cancer cells in the whole body.

[Hidden in reply to GP24]

Thank you. This makes me feel a little better. If I can get him in with the bigger group of Oncologist and they say the same thing as our current Oncologist I will feel better also.

[Professorgary]

Has he had any dental implants requiring bone grafting?

[Hidden in reply to Professorgary]

No

[westobutch123]

In a rare case like this, is there a "generic" or "multipurpose" chemo that you might want to try to see what happens? How baffling. It's one thing to fight a known enemy but here? Yikes!!

[Hidden in reply to westobutch123]

They mentioned something about xtandi but they wanted to wait and see what happens with the Firmagon first. It's the "wait and see " that is bothering me. If it was a situation that they knew without any question what they were dealing with ot would be different. My fear is the Firmagon is not going to work and the cancer will be spreading in the meantime.

[GAdrummer]

My dad had cancerous parotid gland surgically removed back in the '80's. He probably had prostate cancer at that point but was ignoring symptoms. The prostate cancer went into his bones and eventually brain before he died. The treatment options then were limited. He got so much radiation that his skin was burned.

[Hidden in reply to GAdrummer]

Did he have any other treatments besides radiation? I know things are different now.

[GAdrummer in reply to Hidden]

I don't know. He was diagnosed in '87 after he couldn't fasten his seat belt to drive from Chicago with my mom for my son's high school graduation. They missed his valedictory speech. My dad was gone within 4 years. I had a new job during that time to pay for my son's college, so rarely saw my folks. Mother rarely talked of his treatment, mostly of pallative treatment near the end. He loved to share puns and spin wild tales for my kids. My mother saw his doctor crying in the hallway after leaving his hospital room for the last time.

[j-o-h-n in reply to GAdrummer]

It's sad............ but time heals all wounds but leaves scars........... 40 plus/minus years and I want to offer my sincerest condolences.............. Hopefully he's been having fun upstairs with my dear DAD who passed away in 1955 from heart disease.......

You know I like fooling around.... but not now.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/08/2023 6:34 PM DST

[GAdrummer in reply to j-o-h-n]

He watched over my mom in the garden when he wasn't singing in the heavenly choir or playing trombone with Gabriel.

[NotDFL]

Although the picture is quite confusing, ADT (Firmagon) might well work for a considerable amount of time. Hopefully his PSA will drop significantly before long. If it does not, then additional intervention would be warranted.

[slpdvmmd]

A visit to PubMed showed multiple cases of prostate cancer first presenting as a parotid gland mass. Agree with comment above about limits of detection. I always think of a college friend who went on to become a brilliant and famous neuroscientist. She developed back pain and was blown off for months. Finally MRI showed spinal metastasis. Further workup showed other skeletal mets and the biopsy was consistent with a squamous cell carcinoma of unknown origin. Lots of hunting for primary ensued as she worked a major university medical center. Finally a small primary was found during sinus endoscopy (was done because path and markers were most consistent with a head and neck cancer). Theory was that this little tumor, not visualized by any imaging, was just sitting there dropping mets. Cancer really knows no rules.

[Stevecavill]

I would ask for the biopsy to be re-examined. "adenocarcinoma" just means cancer of a gland. Which can be any gland, not just prostate, so the parotid gland for example.

If it's NOT prostate cancer, then androgen deprivation won't do much use. I would want to be sure I'm treating the right illness !

[Hidden in reply to Stevecavill]

It has been examined several times by several pathologist. Plus biopsy has been done on bone mets also. All are the same with faint markers of prostate origin. They are struggling to determine the right illness that is why they are saying it is unusual. They are treating as prostate cancer because it is faintly androgen receptor positive.