Just venting

[407ca]

Right now I find myself somewhat frustrated, please bear with me.

I have recurrence with lymph nodes (2) and a single lesion on the sternum. as well as a lesion on the prostate. These were found by PSMA scan in Western Europe at a teaching hospital attached to a university.

I have avoided ADT , and yes, I realize it is the standard of care. Still, I am loath to begin this regimen even knowing full well that it is the standard.

I went to M D Anderson and consulted with a med onc. He reiterated that ADT is the standard but fully understood my disdain for it. He was good enough to research and make some calls to others who would radiate my sternum and lymph nodes to lessen the cancer burden.

I contacted the research hospital in Europe where I had the PSMA and they agreed to treat the prostate area if I had the sternum and lymph nodes dealt with. They told me to get a fusion biopsy to confirm the prostate lesion. I already had the disc from Europe to use as a guide, it is very precise as to the the lesions location.

I asked my local urologist to prescribe the fusion biopsy and he is blowing me off. He says lupron, lupron ,lupron. There is no need for a biopsy.

So, yes, this focal approach is not the standard of care...I get that. Still, The MD Anderson onc pointed out that lessening tumor burden is beneficial, as did the doctors in Europe, as well as the radiation onc who will zap the nodes and sternum.

I am not asking my local urologist to endorse this approach or do any part of it. I only ask for a biopsy so that others can help. I know I can get this done in Europe if I need to as they already indicated so.

Given the fact that three specialists have gone out of their way to help I cannot fathom why a local urologist is being a problem ( all the specialists are hours by airplane away and all said I could get this locally much more easily and cheaply).

OK, finished venting.

[YostConner]

Why not get the prescription from the medonc? It sounds like insurance is not your issue.

[407ca in reply to YostConner]

Good idea. I will call him at MD Anderson to find out. I live in Florida so hopefully that will work. Insurance....I have medicare with supplement and part D. Everyone takes it. Thanks.

[George71 in reply to 407ca]

Have you looked into Dr. Dattoli in Florida -- I hear he is excellent -- I am considering RT of lymph nodes that drain the prostate and the prostate bed with 2 months ADT only in Houston

[407ca in reply to George71]

I did see Datolli 12 years ago and considered him for primary treatment. I was somewhat put off. I thought him to be a great salesman but too full of himself. That does not mean he isn't good, or even great, merely that I did not take to him.

[teamkv]

Many think they are a god, TBH

[407ca in reply to teamkv]

Yes, many do. I am a devout athiest with no use for any god.

[George71]

If you don't mind me asking -- who was the OC at M D Anderson you are seeing? He sounds very helpful.

[Break60]

If you’re not willing to accept the SOC , You’re up against it. But I read your “vent” for whatever that adds to your outlook.

There’s no doubt that quality of life and length of life are trade offs one must decide upon.

There’s other systemic tx with possibly worse side effects and less effectiveness.

Being realistic is always Best. Otherwise your not making fact based decisions.

[Hidden]

Lawyers. Doctors are afraid that if they don't strictly adhere to standard-of-care they will be sued when things go badly.

[j-o-h-n]

Venting is good for the soul... so is praying.....

BTW who was the OC at M D Anderson you are seeing?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/09/2019 1:41 PM EST

[407ca in reply to j-o-h-n]

Thanks for the reply. Who did I see at MD Anderson?....I am reluctant to give out anyone's name online without their express permission, which I do not have, so I would rather not say. As far as prayer goes....not for me. I am not a believer but I have no issue with those who are so if it helps then by all means use it.

All the best

[j-o-h-n in reply to 407ca]

Thanks ... I didn't mean for you to pray to God... Just pray to anyone/anything or even yourself. I pray/wish to hit the Lotto.... So far my prayers/wish have gone unanswered. But I do pray/wish my ex-wife.... well never mind.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/09/2019 7:19 PM EST

[Hidden]

Just an off comment....... I relied on many sources in 2004 as I fought metastatic prostate cancer - from the best Research Medical Oncologist available to a “prayer roll” stuck in a wall of a temple in Tokyo, my name on a roll prayer in SLC, a Sun Dance Ceremony in the Dakotas, and, yes, in local churches of all faiths. My suggestion, never under estimate the Power of positive reinforcement of well wishes and concern from all. I wish you the best of luck in your fight; and, yes, though I am not a church going man, I’ll offer a Prayer for your success.

Why no systemic treatment for your metastatic disease? If researchers are correct, you have mutated cancer cells traveling in your vascular and lymphatic system looking for another place to land and grow.

GD

[George71 in reply to Hidden]

Hi gourd-dancer,

I conversed with you a while back. I went to see Dr. Amatto but he stopped his practice 2 weeks after I saw him -- due to his own cancer. I was unable to find any Dr. @ Memorial Her. Houston. that was continuing his protocal.

[Hidden in reply to George71]

Yes George, I remember. Dr A has stopped clinic and spends his time in research and lecture. I did not know that protocol by the attending MO’s changed. I wonder what they think about me? I was there two weeks ago. I’ll have to find out next visit. I hope that you are doing well.

GD

[407ca in reply to Hidden]

Maybe your prayer did have some effect....things seem to be coming together now.

Thanks

[AlanMeyer]

407ca,

I think your chances of completely avoiding hormone therapy are pretty low, however you may be able to postpone it, and it's possible that the surgical and radiation treatments you get will indeed postpone it longer. They may even cure you, though the odds against that are pretty high.

It sounds like you've educated yourself and consulted with experts and understand what you're doing. And your body is yours after all, and I think you are right to insist on your right to make your own decisions.

I do want to put in a word for your urologist. It's possible that he could make some extra cash by performing your biopsy, but he probably thinks it won't do any good and he thinks he'd be encouraging and facilitating you in what he considers to be a mistaken course of action. Not knowing as much about the latest research as your MD Anderson med onc, he may not be aware of the fact that there is recent research that makes your approach something less than horrible, even if it's not the standard of care. So perhaps you can cut him some slack and find another uro to do the procedure. He may really be trying to help you by doing this.

Good luck with whatever you do.

Alan

P.S., if push comes to shove and ADT turns out to be necessary, I and others can testify that it's distasteful and you won't like it, but it really can prolong your life and you can live a pretty good life while taking it. I even found, to my great surprise, that sex was possible on Lupron. I had no interest in it but, when I forced myself to try anyway for the benefit of my spouse, I actually got into it and really enjoyed it. We didn't do it as often as before, but we did it and maintained a satisfying intimate physical relationship.

[407ca in reply to AlanMeyer]

Thank you, and everyone else who responded. I have to say that just having a means to blow off some steam is beneficial.

With that being said, I know full well that what I am very unlikely to be cured and that at some point I will be faced with the castration alternative. It is postponement that I am after.

Yesterday I had a biopsy on the sternum which is not that big of a deal. When I was being prepped I told them I had an appointment with my urologist right after lunch so please go easy on the meds as I did not want to linger waiting for them to wear off.

I did make my appointment despite the hour long drive. I was still wearing the wrist band for the hospital when I got to the appointment. I talked to the uro and documented my research and showed him my correspondence with the other specialists. He pointedly questioned me and made certain that I was aware it might all fail and that I knew the risks. Once he was satisfied he ordered the biopsy.

I know my uro had my best interests at heart. I do agree that his reluctance was based on not wanting to encourage me in what might be a fools errand. Once he saw that indeed there is scientific basis for treating oligometastatic cancer, and that I was aware of the risks, he agreed to the biopsy.

And Alan, I want you to know that I do very much value your input. I saved one of your posts that I reread again and again. It begins with "Your life will change, but more importantly.....". It offers encouragement and goes right to the heart of our fears, offering hope and comfort.

Thanks again,

[407ca]

This is just a follow up to my original post "Just Venting"

I had a biopsy of my sternum done a week ago. I had an appointment with my urologist 2 hours later and when I showed up he could see I was serious about my treatment choices and ordered the fusion prostate biopsy.

Next Friday I will begin radiation to my lymph nodes and sternum. After that I will return to the hospital in Europe for TULSA HIFU to treat the prostate lesions. All these specialists are communicating with each other and I am CC recipient on the emails.

Persistence pays off. It took some time to get doctors from 4 different hospitals to communicate and work together but as of right now, all looks good. I think that doctors tend to think in the context of their own institutional capabilities without considering that each institution might not have the total treatment package. It is our job as informed patients to bring them together and this is no easy task.

I have been fortunate to have found specialists who are capable of reaching out beyond their institutions and comfort zone on my behalf. It may or may not all work. That is OK. It is still worth the effort.

[pilot52]

Hi on PAMA I have 22 bone mets and 3 very small nodes....feel great but headed for LU-177 . Xtandi failed....Been on Lupron for years....never really had any trouble from either.....Axumin and CT have been negative for everything.....Do not fear ADT and it may keep you in the game for years....we all want time until the discoveries keep playing out...best of luck...

[pilot52]

PSMA not PAMA