I’m frustrated (damned if we do and damned if we don’t question doctors)

[SuppWife]

Doctors seem to resent when I ask questions that indicate I’ve obviously been reading on the internet, but in my experience if I’m not paying attention I’m not confident they’re doing what’s best for my husband.

Prime example:

After my husband’s 2018 RP his PSA only dropped by half (at surgery it was 34) even though bone scan was negative and lymph nodes taken during surgery showed no cancer, it was assumed he was metastatic, so his urologist wanted him to immediately start ADT. At that time I asked about an Axumin scan and the doctor said they are likely to produce false negatives and/or false positives and he did not think he should wait to start ADT bc he was almost certainly metastatic. Husband was also discouraged from salvage pelvic radiation bc the high post RP PSA almost certainly meant metastasis.

Started Firmagon. Undetectable probably after third shot.

Fast forward ten months. Advanced PCA doc at the urology practice recommended he stop ADT and watch PSA. We sought a second opinion in North Carolina. NC doc said he would add Zytiga and probably never take my husband off ADT. His assessment was also based on history and high post RP PSA. (Gleason 9, EPE, positive margins....large gnarly prostate, 80% tumor). HOWEVER, he also said, the other doc’s suggestion to stop and see what happens was not unreasonable. NC doc ordered a scan which came back negative. Remember at the time he was undetectable from Firmagon. If a scan is useless when PSA is undetectable why would a reknowned PCa specialist order it and use it to guide treatment decisions??

Why would they NOT listen to me right after RP before ADT when PSA was 17 and do sensitive imaging??? What am I missing? Does that high PSA make imaging unreliable?

Husband was off adt for several months and PSA stayed undetectable the started to slowly rise as my husband’s T recovered. His T got back up over 600 and PSA was moving relatively quickly, so advanced doc who suggested he take the break said we should do an Axumin scan before restarting Firmagon. Great! But why would he not wait till PSA was at 2? The scan was done when his PSA was at 1.6. Less than two weeks later it was at 2.09.

It’s so frustrating to me that when I ask questions I don’t get results and when I count on them to make the best decisions for him I am not sure they’re doing that.

All agreed the Axumin scan showed uptake only in the pelvic region so he was a very good candidate for pelvic radiation. When he went back on Firmagon while we waited to get in for radiation (bc of covid and AUS surgery there was a delay) he did not get back to undetectable like he had his first go round.

When I asked his team about adding another drug to get it lower we were told it is not indicated in nonmetastatic PCa. So why do they assume metastasis when I’m asking for scans, but not when I’m asking for a second drug to address his PSA??

I’m so frustrated.

[addicted2cycling]

I am saddened to read about the lack of understanding, i.e. - listening to patient/patient's advocate, you have experienced and only wish I had a solution. ;,o(

KEEP STOKING THE FIRE !!!! 👍👍

[SuppWife in reply to addicted2cycling]

Thank you ❤️

[Magnus1964]

You are a great advocate for your husband.i too dislike doctors that resent questions. I have fired a few doctors along the way. You are right to ask and if the doctor doesn't like it, too bad. Find another doctor.

[SuppWife in reply to Magnus1964]

Thank you ❤️

[mike__c]

It does seem like a mistake not to do the scan post-RP and guide treatment from there. Everything else mostly makes sense in their communication. I don't know that there would be a significant reason to scan at PSA 2 vs. PSA 1.6. It seems like your original doc has made some questionable decisions without providing solid answers. The doc in NC seems to be suggesting a more expected SOC path.

[SuppWife in reply to mike__c]

One problem is the two docs we were/are dealing with are in different offices so conference in real time is never possible and early in the process it was all coming at us so fast. But yes, I asked about the scan, and it didn’t matter, so that’s really frustrating.

[Cancer2x]

Remember - “MD” does not mean “GOD”.

[SuppWife in reply to Cancer2x]

Amen to that. 🙏🏻

[Hidden]

My RO when I brought some things up said I was “well read.” Probably why everybody likes him. I’m wondering if in 2018 the scans were considerered reliable as today. Things are moving fast. I do think that would have been a good choice to detect metastasis

[SuppWife in reply to Hidden]

Maybe so. That was definitely how his urologist/surgeon painted it in mid 2018. Unreliable to use to guide treatment decisions. He was very nervous about the high PSA and obviously thought it was unlikely to be confined to his pelvic region. Sure feels like a missed opportunity.

[Tall_Allen]

I've seldom had a problem bring a peer-reviewed study published in a respected journal to a doctor for discussion. (sources matter!) But all the doctors I've met have been at teaching hospitals. I usually find them eager to discuss those papers. It also helps when I go in speaking their language. In this case, it may help to say that NCCN guidelines for "persistent" PSA after prostatectomy call for a scan (and if no occult metastases) immediate SRT. And then follow-up with : why are you recommending against their guidelines? (being open to that there may be a reason).

Regardless, doctors should be practicing "shared decision making" rather than "paternalistic decision making." Last month, I went along with a patient to a new oncologist at a top teaching hospital. We got into a discussion where two options were within SOC guidelines. He was firm on option A. I asked " if the patient prefers option B, you'll still go along with that, right?" He replied, "definitely not - he should find another oncologist." That's exactly what we did.

I agree with you that a PSA of 17 should have been high enough for an Axumin scan to show occult metastases. If none showed up, salvage radiation should have been started right away.

[SuppWife in reply to Tall_Allen]

Thank you. It undoubtedly helps when you’re a man. As the wife of the patient my questions, no matter how respectful and deferent, are often met with a tinge of annoyance. I got actual hostility from his GP.

I really didn’t feel that from Dr. Burgess in North Carolina and he discussed the alternative plan the nashville docs were recommending and supported our choice. Notably, he was also the first to agree the constipation issues that had been a consistent problem for my husband were absolutely related to his PCa. His nashville docs all said no way.

As the daughter of a physician who has worked with and around physicians for decades I try hard not to be pushy and to defer to their knowledge and experience, but it’s very frustrating to feel like I’ve asked the right questions and it didn’t matter.

May I ask if you think adding zytiga would be wise for my husband? Dr. Burgess said he would add it, but the Nashville guy said it’s not indicated because he’s not demonstrated metastasis. If there’s a study I could reference I’d take it to him and respectfully ask.

[Tall_Allen in reply to SuppWife]

I have some compassion for oncologists. Although they've all been schooled that it should be a collaborative process, a lot of patients expect them to "play God" and tell them what to do. I wish I had a nickel for every patient I've heard ask "if I were your father, what would you tell me?" How many patients or wives do they see who are like you and are willing to collaborate? It must be difficult to switch gears for different patients. When I go along on visits (starting to happen again since I've been vaccinated) I can act as a mediator. I'm usually pretty good at keeping options on the table and getting them into a "what if..." mode to explore outside of the SOC. But as I related, I'm not always successful. Some have that "my way or the highway" attitude. It's very frustrating - I do understand.

One thing I often do is ask patients to email journal articles before the meeting. This gives the doctor time to review it and think about it, instead of putting them on the spot. No one likes to be surprised.

I'm kind of surprised that he only had pelvic bed radiation and, I assume, targeted radiation to the single iliac LN? IMO, the entire pelvic LN area should be targeted, if that hasn't happened. Lymph is a slow-moving fluid that carries cancer cells around among the nodes in the entire drainage area. Where there is one cancerous node you can see there have to be many more too small to be seen on a PET scan. That was the subject of a recent retrospective study at Mayo. Metastasis-free survival was significantly better when all pelvic LNs were treated and there was only one cancerous LN at baseline:

prostatecancer.news/2020/12...

If he only had protons to the one LN, there still may be a chance to cure him if IMRT (45 Gy in 25 treatments) is given to the entire area.

We don't have results yet, but there is a major clinical trial in the works to see whether the addition of advanced hormonals (Zytiga and Erleada) with salvage radiation for node positive patients can improve outcomes. You may want to check the list if there is a site nearby:

clinicaltrials.gov/ct2/show...

You will probably not be able to get insurance to pay for those drugs unless it is within the clinical trial.

[SuppWife in reply to Tall_Allen]

Thank you very much, TA. I need to get a report on his radiation treatment.

[kaptank]

So painful to read that. At our stage we need a team (eg at our stage we would have our GP, a urologist, a radiologist and an oncologist) all of who we can have full and frank discussion with in terms of their speciality. If not we must find someone else. I have found it to be useful to directly ask: do you want me to find another doc? If yes, do so immediately. If no see if their behaviour changes.

Best wishes

[SuppWife]

Thank you ❤️

[Boywonder56]

Have they offered erleada?

[SuppWife in reply to Boywonder56]

No, we were told a month ago by our local guy a secondary drug is not indicated bc he is not metastatic. In 2019 Dr Burgess in NC suggested zytiga bc his high PSA likely indicated metastasis. Nobody is offering a secondary drug right now.

[Boywonder56 in reply to SuppWife]

Erleada was first developed for nmpc....look up spartan trial

[SuppWife in reply to Boywonder56]

Thank you! I’ll look it up.

[MateoBeach]

Very frustrating. I wouldRequest and insist on a PSMA PET

Scan and self pay if needed. Pretty inexpensive in AUS.

[MateoBeach in reply to MateoBeach]

Or $2800 if at UCLA in the USA. Agree with T_A completely. Get to a good RO for full pelvis RT if that still has not been done. My PSMA scan showed ONLY 2 PLNs with cancer and no other sites 12 years after RP.

[SuppWife in reply to MateoBeach]

Thank you for your reply and thoughts. I need to look more closely at what his radiation treatment was. 👍

[j-o-h-n]

To cheer up you and your husband:

The lawyer looked at his rich client and said, "I've got some good news and some bad news,"

The client said, "well gee, I guess lets hear the good news first."

So the lawyer said "You're wife has found a picture worth $10 million."

The client replied, "Oh that's fantastic! But whats the bad news?"

"It's a picture of you and your secretary."

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/30/2021 8:29 PM DST

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

😂👍

[Stevecavill]

It doesn’t sound like they resent your questions but rather just don’t give the answers you wanted to hear. And the reason you get conflicting answers is advanced prostate cancer is complicated, and there’s no one right answer. Asking 2 doctors will almost invariably give you 2 answers.

So don’t be discouraged for asking questions. It’s the only way to make sure you’re getting the best advice.

[SuppWife in reply to Stevecavill]

It’s really not that I’m looking for specific answers. Most people who have responded agree the docs would have been wise to scan him three years ago before planning treatment. That’s an opportunity we can’t get back.

So I won’t stop asking questions and advocating for my husband. I get there’s more than one way to treat PCa. And it still up to us to decide what is the “best advice.”

That’s just fundamentally frustrating bc I don’t have a medical degree. Thank god I have these wise and experienced people to learn from, but it’s also terrifying to think that’s necessary.

I want to do what’s best for my husband so I’ll keep asking questions. ❤️