I received a text from the WIFE of a buddy. She said he has been diagnosed with advanced PC. She had no real particulars other than it was in his spine, pelvic area and lymph nodes, bladder, etc. The really scary part of the text was she sounded upbeat because the doctor was very optimistic- just radiation, some ADT in pill form, no Chemotherapy. Just a walk in the park.
My first thought to myself was “holy shit” that is not what I have read here over my time on how to deal with advanced PC. Where is at least two forms of ADT and possibly Chemotherapy, etc. I guess my knowledge from this forum and my personal experience is driving me to question what I heard Or am I being over reactive. Of course I did not say any of that it was just racing through my mind.
Any way I would like some suggestions on do I wait for him to contact me? She reached out to me not him. How do I start the conversation if I call? Where do I send him for help with this? His wife did not know any specifics like PSA, test results, etc. All she knew was he started the pills, had a RO appointment in February. Nothing more! To top it off she just finished breast cancer treatment for a year.
Any thoughts and suggestions would help.
Thanks!
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Mgtd
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I’m suspecting that this treatment plan came from a urologist. Once it’s spread he should be seeing a medical oncologist specializing in prostate cancer. Bonus if you can get him to to to a center of excellence.
Yes you are correct. My thinking too. He lives 15 minutes from Mayo but the issue maybe a Medicare advantage versus a Standard Medicare. There maybe another one in Phoenix that takes Advantage plan.
I have been treated at City of Hope in Phoenix for almost 9 years now. (Used to be CTCA) My insurance broker screened many Advantage plans to find best one for my condition. Love the facility and my MO Dr. Bryce, he is the best
So it sounds like City of Hope takes Medicare Advantage? That’s great!
I was seeing Dr Bryce at Mayo for about 6 years when he moved to COH I guess about a yr ago. I miss him as he was simply wonderful. My loss is your gain.
they should sign up here. You shouldn’t be burdened with repeating what they can simply and helpfully read for themselves. And they can post their own questions here in real time. They are welcome
Starting with ADT in pill form, i.e. Orgovyx, and adding additional drugs later is ok. I assume the oncologist will recommend an additional drug and discuss chemo next month. If the cancer is in the pelvis only you can use radiation. You should just observe and wait until he contacts you regarding his cancer. He will probably do what his doctors recommend anyway and not what you think he should do.
I differ in opinion. I would be inclined to reach out to him asap. He’s likely struggling, confused, and hurting. I doubt anyone in this position would fault someone for caring.
I did not mean Mgtd should no longer talk to him. But I know a patient who completely trusts his doctor and avoids talking to me because he is afraid I may mention different treatment recommendations. If your doctor is always right, a different opinion is futile.
I never implied that anyone said he should no longer talk to him. You said he should observe and wait until he contacts you. I just disagreed with that.
He should go to medical oncologist asap. Triplet therapy is the best treatment. So he should require/suggest ADT(Orgovyx)+Chemo(docetaxelx6)+Nubeqa(darolutamide).And Flomax(in usa?)(tamsulosin) if difficulty urinating (hesitation, dribbling, weak stream, and incomplete bladder emptying), painful urination, and urinary frequency and urgency.
wow that’s scary. When you have a quiet moment together ,suggest that he joint this blog. He will be able to see for himself what is suggested. If that doesn’t work at least see if he will reach out to an oncologist for a second opinion on treatment. There is a point of no return on cancer. Help him be a warrior for a long time 🙏🙏
Call him and tell him that you just found out about his Pca and if he needs help to contact you since you're fighting the beast. You of course will direct him to our fine organization for further information and camaraderie. "You can lead a horse to water etc."
Well John it worked. He thanked me for my offer and will be talking in the future as things come up and he has question. He sounded mentally in a good place and was comfortable with his doctors especially since his wife had just gone through a year of breast cancer there.
For those in the Phoenix area he never wrote “where” was. I know he did not go to Mayo for insurance reasons with his wife’s breast cancer.
You describe your opinion of the response of the wife. This is no representation of the patient response. Your responsibility is to the patient and not to or through the spouse. He should know by now that she informed you thus your contact to him is free and open.
His treatment decision is for him to decide. Many of us here, if active in the community long enough, have the experience of a patient turning from our best advice, opinion, or even our experience. It is their option. We are a self selected group here that values what we find in this forum. Others find values elsewhere.
Thanks. I did contact him via email and he positively responded. and
I appreciate all the thoughts and suggestions. It helped me frame my thoughts and this forum helped me consider other frames of reference.
At our age and with my lack of knowledge I elected to not go near doctor or medical advice. As some above mentioned he is in his 70s and has been making up his own mind for years.
I decided my goal was to support and be there and to not add to the stress of the situation.
His first mistake is that he has a RO. I had 2 ROs and they were both 20 years behind the times. Yes, your hubby needs both the Eligard/Lupron plus an anti androgen. He needs to get the PSA down ASAP before it becomes castration resistant. Also, consider transferring to an MO.
Thanks. I am not the wife I am a guy who was wondering how to respond to what I felt was his wife’s desire to let me know that he had PCa.
After you have been around this cancer for a while you learn the flow of things. Urologist does the work up and they determine the severity. If there is no possible surgery in this advanced case so you get a referral to the RO to see what they might have to offer. If radiation is not a viable option at this point they either refer you to the MO or send you back to the Urologist so they can refer you to the MO. In the meantime time you are put on a HRT to lessen the PSA.
Finally you get to the MO and they prescribe either double or triple therapy. At this point it is like fighting a large tuna or gamefish. You put up little fight except maybe in his case to the Chemotherapy because you have witnessed what his wife went through.
Cynical, tried, exhausted, etc. All the above and more but that is the process. Like it or not. If you move someplace else the process starts again.
I would add have them join the Cancer Support Community in Phoenix. cscaz.org/
My local CSC has been great and I see that the one in Phoenix has support groups that can help is wife and him, if he will go, since talking face to face with people who are going through/have gone through the same situation is helpful -- especially in getting the knowledge one needs to talk to the MOs and ROs and all the other doctors.
What he needs now are good friends he can turn to when he needs someone to talk to.
First, get the person with prostate cancer on this forum so he can ask questions for himself. Failing that, the wife.
Next, break it down. What exactly has happened? What tests have been done? What stage cancer does he have?
Next, understand that fear is counterproductive. What you want is information and the more you get from here and from physicians, the better.
Understand there are many many oncologists and he should interview two or three before he decides on treatment, not only because some can offer better treatments but more importantly because he can find an oncologist with an empathetic personality; also one that bothers to explain things.
Educating themselves is essential. I always recommend reading: "Patrick Walsh's Guide to Surviving Prostate Cancer" on Amazon URL: amazon.com/dp/B07CZ19FVQ as a primer that explains the disease in detail, outlining stages, ascertaining risk level of the disease, treatment options, what to expect and information sources.
Beyond that, they of course need to check here for people's experiences to find patients in similar situations for advice. Checking reputable websites, such as : NIH, Mayo Clinic, City of Hope, UCSF, Sloan Kettering, Johns Hopkins, etc. for new information to run by their oncologist. Also, the value of a second opinion to see if the treatment plan seems right.
Mainly, It is about not just accepting the Oncologist's treatment plan without asking questions about side effects, efficacy for PCa at his stage and so on.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can someone have PC not show up in prostate gland on CT scan (get microsized) just with ADT (or orchietomy)?
Anne for Ron
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My brother has advanced prostate cancer
