Starting ADT

[Blair77]

We met with the oncologist at UCSF. My husband will be part of the PSMA MRI clinical study that evaluates a new scan being developed for prostate cancer. They will be doing gene sequencing on his primary cancer in the prostate as well as sequencing the lymph nodes. Since he has been diagnosed as stage IV he will be starting on Casodex and Lupron ( every 3 months). I'm wondering if this is standard treatment and if we should be asking for anything different?

[BigRich]

They will be doing gene sequencing on his primary cancer in the prostate as well as sequencing the lymph nodes.

That is to determine, if needed, what medcine to use in the future.

Since he has been diagnosed as stage IV he will be starting on Casodex and Lupron ( every 3 months)

That is one of the standard medical protocols. I believe your doctors are taking good care of him.

Rich

[Attitude67 in reply to BigRich]

Agreed...

Adrogen Deprivation Therapy will reduce any tumor growth and lower PSA. As it will be the first treatment he receives the reduction may be dramatic. Almost 100% of patients survive five years. If the patients PSA decline is strong enough he may become a candidate for other types of treatment. It all depends on his response. He appears to be well taken care of. Good luck!

[Haliday in reply to Attitude67]

Source of 100% survival after 5 years? I thought stage IV outcome stats were 28% 5 years after diagnosis.

My husand is 3 years into a Stage IV diagnosis (one small sacral bone met revealed via PETScan thanks to UCSF doc finding hidden anterior tumor via a TRU. He has been on ADT since with two "holidays,". The first lasted for 7 momths until his PSA zoomed up. And in one now (oh happy days!).

[Blair77 in reply to Haliday]

Your statistics are correct ( 28% at 5 years) the statistic quoted is for prostate cancer confined to the prostate only.

[Attitude67 in reply to Haliday]

In the United States Prostate cancer mortality rates have declined steadily since 1990. The American Cancer Society estimates that the current 5-year relative survival rate for men with prostate cancer is nearly 100%.

*Many PCa patients have been advised by their practioners that there lives have beeen shortened or are in fact almost over when in fact they have significant life remaining. Fear is a mind killer. We must and they must fight it. Patients diagnosed with advanced metastatic cancer who respond well to first time treatment with ADT have been offered both Radiation and other treatments if their PSA drops to normal levels. Of course their risk is higher, however the possibility exists that their lives may be extended. No patient should simply accept a diagnosis without a second or third opinion as well as a recommmendation from a radiation oncologist. Particularly a patient fighting the mind killing fear of having been diagnosed with PCa for the first time or within the first year. Health Advocacy starts with patients who are both knowledgeable about their disease and the health care system. We all need to help each other try to survive by whatever means are available and offer them whatever hope we can.

[Blair77 in reply to Attitude67]

I am hopeful that the statistics don't take into account new advances, etc.

[Attitude67 in reply to Blair77]

Meaningful statistics never take into account new advances. New advances get guesstimates. If they make it out of clinical trials and become part of routine care real populations will yield meaningful statistics. Right now you are still at the stage where fear is a major factor. Dealing with both fear and stress clinically will help both you and him live longer. I very strongly suggest you ask the Social Work Services Department for assistance. A licensed Clinical Social Worker can assist you in coping with this desease. Your providers are among the finest in the country and I have faith they will see you through this terrible challenge to your lives. Give them a chance to get started and things will fall into place.

[Blair77 in reply to Attitude67]

Thanks for the kind words 😊

[Hidden]

Well the "Chaarted" trial set the standard of care to adt+chemo for men at stage iv at diagnosis, if they have "high-volume" disease. That means, I think, mets beyond the backbone and/or pelvis. Would not hurt to ask. For "low volume", the study did nor reach (any) conclusion. But some drs use the same regimen in low-volume as well.

The psma scan is the latest and good for you. it should identify the locale of mets nicely, down to a quarter inch (I think). Will they treat those mets they find, is the question. And, will they treat the "primary", ie the prostate with radiation. "No" may be the answer(s), so what is in it for you? [Ask/negotiate?]

Do lookup Dr Mack Roach, a radiologist. If you need a cover story, he is Hank Aaron's grandkid. But the real reason is that he is great, plus nice. and he may think of something.

[bitittle in reply to Hidden]

Agree on Dr. Roach! He was my Radiation Oncologist for SRT completed in September of 2016. He does not like to be challenged with studies and treatment information, but be persistent and you will be satisfied with the standard of care.

[Blair77 in reply to bitittle]

Do you think there is a role for radiation still at this point? The PET/CT used in the original Dx identified 3 spots in bone but two spots were in the upper skeleton ( upper arm bone and sternum). However, the Dr said since it was still only 3 this classifies as " low burden"

[Haliday in reply to Blair77]

My husband said NO to radiation after weighing risks, side effects and benefits. Also low burden bone mets. He just didn't want to risk damage from radiation to nearby organs. We still manage an active sex life and he has no problems with urination. We look at every medical decision through a quality of life lens.

[bitittle in reply to Blair77]

I did not have any signs of Dx when I received my salvage radiation. The side effects were minimal. My PSA was 0.182 and 3 mos after radiation was 0.06. It appears the radiation has reduced the PSA. Doc's say the radiated cancer cells have a 3 mo half life. Expectation in another 2 mos would be to see PSA at 0.03. We'll see. I was a G9, PSA 12, L0N0, SVI, ECE at time of RP. 2.5 yrs after RP PSA rose to 0.182 and elected to go SRT no ADT although recommended.

I would listen and evaluate Dr. Roaches opinion on radiation. I would think there may be an option for radiation at areas of Dx. See what Dr. Roach has to say. Good luck!

[Blair77 in reply to bitittle]

Ok, thanks we will check him out 👍

[Hidden in reply to bitittle]

Re: "Dr. Roach ... does not like to be challenged with studies and treatment information, but be persistent and you will be satisfied with the standard of care."

An integrative oncologist with patients all over the world recommended that I consult a man he considered the finest medical oncologist in the U.S.. That is, until the IO got to know me better and found that I ask a lot of questions backed up by a lot of research. At that point he said, "On second thought, don't go to that med onc. He is lock. stock, and SOC, and does not like questions ... in fact won't even answer them." Every oncologist I've consulted has told me I have a very unusual case. The last thing I want is a doctor who refuses to think, and I have fired several who refused to consider the very literature their precious evidence-based SOC medicine is based on. What they are really saying, wittingly or not, is, "It's what we've always done, and it's what I was taught in school. It's good enough."

Get out the poultice and the leeches, Ma. I got cancer.

I was taught analog electronics and the Bohr atomic model. The first flight computer system I worked on put man on the moon, but that big red manual ABORT button in the movie "Apollo 13" was there because I couldn't design an automated abort system good enough to operate at a measly 12 hertz; stuff happens too fast for that when ya got ~175 million horsepower on tap.

Much has changed since then in every field. I would not want a doctor who hasn't kept up since medical school and won't listen to informed patients treating my pinkeye.

[Charlesd]

Did he have a prostectomy?

[Blair77 in reply to Charlesd]

No, it was just discovered already stage 4

[Charlesd in reply to Blair77]

My husband was diagnosed with stage 4 and Gleason score 9. PSA WAS ONLY 7.5.Very aggressive. this was in May of 2012. He was 77. He will be 82 in feb. Had prostectomy - was in seminal vessels - 3 lymph nodes -neck of bladder. PSA was less than 1 month after surgery. Started Lupron. Now PSA IS 56- on eligard( same as Lupron) Zitiga & dexamethasone (just changed from prednisone) zometa for bone strength. Radium 223 for bone mets. The bone mets was discovered in May of last year & progression in October. He is doing well on radium 223 &continues to enjoy a good quality of life. Please be encouraged to be your own advocate in your treatment choices. He gives himself an injection methotrexate (1ml) per week for rheumatoid arthritis. We have read that methotrexate may be helpful with PC treatment. Our prayers & encouragement for all to have courage & hope.

[Blair77 in reply to Charlesd]

Thanks, I plan on reading up on everything my husband is 47 and we have a 3 year old and a 6 year old. He needs to be around as long as possible.