What to ask oncologist after previous surprising appointment.

[spouse21]

Last month we discovered that my husband’s normal looking blood tests were wildly out of sync with all the mets that appeared on the bone scans since last year. (He was high Gleason 9, low PSA from the get-go) Here’s the link to that question with the responses. healthunlocked.com/advanced...

The oncologist characterized the mismatch as a “conundrum.” He ordered the Guardant360 test to see what might be going on and said to arrange chemo for later this month.

The Guardant360 turned up nothing. Moreover, yesterday’s blood tests came back looking more stable, even improved (see updated profile)—totally in the middle ranges of normal. (We do know from some of your comments that some kinds of cells, particularly neuroendocrine, don’t express much PSA or other signals.)

My husband’s PSA has been .64 for the last three blood tests. The slightly elevated liver enzymes from last month (after the Zytiga suspension) are back in the normal range. He’s been off Zytiga for six weeks and is only on Lupron and 5mg. of prednisone now. All things considered, he feels “Lupron good,” with no notable aches or pains that he hasn’t felt before. (We just returned from a very active overseas trip with no problems.)

A couple of you suggested that a biopsy of met tissue might be a good idea to get a more accurate read on the nature of the cancer cells to tailor treatment. Should we ask for such a biopsy if the oncologist doesn’t suggest it? Are there other tests and/or scans that should be done to help guide the kind of chemo my husband should get? Last month, the oncologist said further scans wouldn’t be meaningful for three months (from last month).

What should we be prepared to ask (or ask for in the way of further testing?) How rushed should we be if we have to factor in possible biopsy and/or more imaging? The oncologist will probably come in with a plan that addresses some of these questions, but the appointments are always so rushed, we need to be better prepared than we were last month. Thanks so much in advance in helping us prep for next week's appointment.

[Hidden]

In my opinion, you definitely need to get a biopsy to find out what's going on since there are indications that don't make sense. We can do a lot of speculation here about what is going on, but you really need to have these new mets looked at.

As far as I know, with a PSA of .64, Neuroendocrine Differentiation is unlikely if it's even possible. It's going to to mixed with PSA producing Adenocarcinoma so I really think .64 is too low for that.

But again, a biopsy is needed to know for sure.

[Schwah]

I agree with Gregg57. Be persistent with your oncologist and ask him to explain why a biopsy now is not called for. Proper treatment is difficult to attain without a proper diagnosis. If you’re not satisfied with his answer, get a second opinion. Let the group know your location and they will help you find a good second opinion.

[spouse21 in reply to Schwah]

Thank you, Gregg and Schwah. We go to Dr. Matthew Smith at Mass General in Boston but if we need a second opinion we can get to New York as well since we have family there. In a moment of panic last month, I tried to get an second-opinion appointment with Dr. Paul Nguyen at Dana Farber since everybody's crazy about him. Then I came to my senses and thought: "A. He's a radiologist. B. We have the head of Genitourinary Cancers at a top hospital and no definitive first opinion yet. Let's see how the Guardant360 and next tests go before running around like chickens." I'll check back in after Tuesday to see what Dr. Smith recommends now that he's had a month to explore the "conundrum" as he calls it. We'll definitely ask about a biopsy if he doesn't suggest it. There's a lot to talk about in our allotted 15 minutes.

[2dee]

Learn all you can in order to ask the best questions for YOU GUYS. Write them down and get answers with each team visit. Diary and document everything. Learn the meaning of any unfamiliar term.

Get more informed opinions and feel YOU have made the best choices to fight on...

2Dee

[dmt1121]

Seems to me that due diligence has not been followed in a considered and coordinated way. I have similar issues in Portland Oregon. If you don't have a MO who is really paying attention and sharp, the decisions can be based on inaccurate information.

It's possible the bone scan is not correct and/or the blood test are off. I certainly wouldn't begin chemo on the basis of what you do and don't know. In my opinion and experience, even targeted-chemo tends not to be very effective. If Zytiga causes liver problems at full dose, maybe some form of lower dose of that or another drug like Xtandi will work with reduced side effects.

I think it is definitely second opinion time in a hospital with top rate prostate cancer team. You should get a better answer than "We don't really know why the tests aren't in alignment but we should probably start chemo." Chemo can breakdown one's immune system and overall health with little benefit. make sure it is the right choice BEFORE you decide.

Don't give up and don't feel trapped where you are going for treatment! Good luck and keep us posted.

[larry_dammit]

I’m surprised that they haven’t taken biopsy, hard to tell what type of cancer without one. The Do should have a plan. Don’t let him rush you. Take a pad and pencil to write down what he says so you can reflect on it later good luck with the monster 🙏

[spouse21 in reply to larry_dammit]

Thank you everyone. The head of Genitourinary Cancers at Mass General Hospital--a top cancer center--is my husband's oncologist. He's very data driven--a good thing but there's not much time for discussion. My husband's mismatch of blood work and scans was one of those "black swan" situations, which our oncologist acknowledged on the spot. It'll be interesting to see what he's made of the post-Guardant360 data since we saw him last month. That has to have ruled out some possibilities. Maybe he'll prescribe a biopsy of mets next since the Guardant360 didn't disclose anything.

If needed, we may cast a wider net and get a second opinion. The usual chemo for these rare situations isn't always effective. (My husband's biopsy at diagnosis five years ago had ordinary adenocarcinoma features, no neuroenedocrine. The high Gleason, low PSA was an anomaly, but he did well on Lupron for 33 months. However, the first and second line ADT may have caused the cells to evolve into cells that don't give off the usual indicators--hence the healthy seeming blood work and low PSA. This is something that happens to 25% of men on second-line ADT. I'll check in after our visit to update the forum so it can be helpful to others, plus we may have more questions. We greatly appreciate your comments.

[j-o-h-n]

Take a tape recorder with you and that will scare the hell out of the doctor... 15 minutes...I bet you wait in the exam room for more than that. Gimme a break....Damn primadonnas...

Good Luck, Good Health and Good Humor.

J-o-h-n Monday 10/07/2019 8:43 PM DST

[spouse21]

Thanks for the good wishes, John. It would be an interesting role reversal to scare my husband's oncologist instead of the other way around! We don't want to scare anybody, though, and we do take good notes. I do think if we were starting all over again, we'd get the #2 oncologist instead of the #1 who's head of his department, so has a lot going on. Since we're a couple hours away, we're getting an oncologist at our end as well. But thank you for your outrage! Tune in tomorrow. We're heading out for our appt. soon, armed with HU questions, and I already managed to spill the coffee.

[Hidden]

Feeling “Lupron Good” now that is looking at the bright side . Great attitude . That will serve him well . Its pretty common to feel off kilter with the Docs not giving much time for q&A time . The correct path will be taken to extend his life . Enjoy any days under the sun . May you both find peace of mind and love during this journey . Scott .

[spouse21]

Thank you all for your responses. We did have a hellish day getting to Boston due to traffic, so we were an hour late. Again, we had a rushed appointment. The end result is that my husband will start chemo--docetaxel--soon. My husband shared that he's starting to feel some pain now. He'll get a bone scan after the fourth session. The chemo will be supervised by an MO in our local hospital, a satellite of Mass General. While this local MO is not a prostate cancer specialist, she works with Mass General all the time, so now she can ask the questions.