Recently diagnosed - Stage 4 with mets

Hi,

I am posting for my dad who has recently been diagnosed with stage 4 metastatic prostate cancer. To give you a background, my father is 75.5 years old and is healthy as can be with no other health conditions except for one. He has been suffering from constipation for a decade or so and had a piles/Hemorrhoid surgery for the same around 7-8 years ago and has been taking an ayurvedic medicine (psyllium husk based) for his constipation. Two weeks before diagnosis the constipation started troubling him enough to loose his sleep - he was able to have rountine bowel movement once or twice in a day but had this feeling of constipation pressure but was unable to pass stool. He thought it was a relapse of his piles problem and went to a Gastroenterologist who advised him to get his PSA test done since it seems to be an issue of the prostate enlargement. The PSA was 114 ng/ml, we then went to a urologist who performed the DRE and found the prostate to be solid and recommended a TRUS biopsy - the biopsy came out with 4+4=8 gleason score with perineural invasion and rectum involvement. The urologist said the disease is advanced and we had the PSMA pet scan which revealed that the cancer had metastasized to his lymph nodes (multiple places from the prostate to behind his neck), it had only one bone involvement at his pubic bone. The staging was stage 4. The urologist said hormone therapy is the treatment option for him currently and may add radiation later on as radiation is targeted therapy and may not work due to multiple lymph node involvement and asked him to get simple bilateral orchiectomy done since he would be requiring hormonal therapy for lifetime and is cost effective and less hassle free than getting injections every 3 months. We went to a oncologist for a second opinion - he also advised hormonal therapy via orchiectomy and asked us to get a PSA test done 1 month after the orchiectomy and said he may add abiraterone acetate to the treatment plan later and radiation would not be needed. So while the urologist said radiation would be the next step and oncologist said Zytiga (abiraterone) along with hormonal therapy both advised orchiectomy so we went ahead with it. The urologist also put us on Casodex/Caluran (Bicalutamide) which is assume is total andogren blockage or combined androgen blockage. He asked us to get PSA test done after 3 weeks and then meet him for the plan of action. Few days post Orchiectomy and Bicalutamide the constipation symptoms/pressure was relieved, though he continued to take the ayurvedic medicine for it as the doc had advised to continue it. The urologist does not seem positive about the diagnosis and though did not mention the prognosis just mentioned its stage 4 and advanced whereas the oncologist was much more positive and said that the metastasis will retract/melt from the one place in the bone where it is and though it is advanced and you are late as in it cannot be removed or cured but still it is not very late - we can control the disease - you need not worry- more often Pca patients die of some other reason than Pca. So whatever normal lifecourse which GOD has willed for him he will live - be it 5 years or 10 years or 15 years. On the other hand the urologist mentioned to us that Pca with lymph node mets has a worse prognosis than Pca with bone mets - i checked a few articles online and found it contrary. It is a dark phase for us. Though my dad is 75, we were late children - i am 29 years old and my brother is 32. He got married 6-8 months ago. All their life my parents have lived for us - working, bailing out of trips or expensive shopping as they were saving up for our education, marriage, my brothers house in Australia etc (we are based out of Ahmedabad, India and my brother lives in Melbourne, Aus)... my brother lives on rent in Melbourne had recently started looking to buy his own house out there with the help of a loan and my parents had arranged to help him with his downpayment - now with my brother married and about to purchase his own house, my parents felt that their responsibility is over and its time for them to live their life -to indulge a little - we had even planned a family trip to Vietnam, cambodia, laos in Nov/Dec - a first international family trip in years for us - we kids wanted to take our parents on a europe trip as well but since it would be expensive and not the right season we thought to keep it for next year or the year after that - our parents have done so much for us it was finally time for us to do something for them and live without worrying about finances or his children there came this stage 4 cancer and now it is looming over our head - at times i wake up in the morning thinking its just a bad dream - his friends of our age have seen their grandchildren and my parents have not had that fortune. I feel helpless and want to do everything in my power to prolong his life so that he can go to australia and live in my brother's house with a feeling of pride and we can go on the family trip to europe and vietnam, cambodia and laos. I pray to GOD everyday for it to happen and to give us children the chance to let our parents live without worrying about us or the finances and to enjoy and fulfill their dreams.

Could someone help with it - how bad is the prognosis for him? the oncologist is positive whereas the urologist is not so much - is lymph node mets worse than bone mets? He has no pain no issues whatsoever and is leading an active life currently - Will we have enough time to be able to plan the trips ? Will he be in a condition to travel or will the treatments refrain him from it? I am currently working full time and if my dad has less time left i would really want to quit and spend some time with him - currently working a full time job and juggling between my inlaws home and parents home does not leave me with much time - though my dad would never want that - but i dont want to regret it later. Also, the urologist feels after the total ADT blockage , radiation will be the next step the oncologist says radiation wont be required and he may put in Zytiga - whom should we follow if both have a different view point - should we also involve a radio oncologist to the mix or will it just confuse us more? Also, we are vegetarians so primarily diet is fine, but should we eliminate sugar and dairy completely and increase the intake of cooked tomatoes and carrot juice? Have read different things online about it- specially about dairy - while some say dairy should be avoided completely some say during hormone therapy your body needs dairy so should add some dairy - though not go overboard with it. Also, with initial PSA of 114 - how much PSA levels should we expect 3 weeks post orchiectomy and Caluran/Casodex?

I know i have written a lot but could really do with your honest and frank opinion.

Thanks,
Anuja
23/06/19 - visited Gastroenterologist with a problem of constipation (feeling the pressure but unable to pass stool) assuming it to be a relapse of piles, which he had operated 8-10 years ago - he said issue seemed like prostate enlargement and advised PSA test and referred to urologist
24/06/19 - PSA - 114
TRUS biopsy - malignant - Gleason 4+4=8, perineual invasion with rectum involvement more on right side
PSMA Pet scan - mets to several lymph nodes, only 1 bone involvement (pubic)

Treatment:
Simple bilateral Orchiectomy done on 10/07 and started on Bicalutamide (Casodex/Caluran)
To get the PSA done test done on 1/08 and chart the future course of action with urologist and medical oncologist

Hi
The standard of care indeed would be Lupron (or orchiectomy) + Zytiga/Prednisone. Mets to the nodes being worse than to bone is also contrary to my knowledge. Usually when there are mets involved treatment is transferred to a medical oncologist experienced in Prostate cancer, such as your MO seems to be.

Androgen Deprivation Therapy (ADT) (Lupron or Orchectomy + the Zytiga) can have serious side effects and there is a spectrum on how it affects different men. There is also variation in how long it works - my MO tells me the average is about four years - but it can be much longer.

You're in good hands with your MO. Radiation could come into the picture, but probably much later when ADT stops working.

Other members may come in with similar or different thoughts.

Your dad has a good chance for being around for quite a while.

Good luck!

Hello!

I was diagnosed in my 40s, with a PSA over 100 at the time of diagnosis.

By the time I was diagnosed, the prostate cancer cells had infiltrated both my lungs.

I got started on immediate treatment, just as your father is now doing.

Treatments began working immediately, in my case, for which I give thanks.

My health treatment history is revealed below my signature at the bottom of this message.

Since diagnosis, I have pursued various treatments and taken various medications in order to maintain my health goals. These have included chemotherapy, a round of radiation, and the medication known as ZYTIGA.

I have reached six years of survivorship since diagnosis. What I needed most then, and what I am sharing with you now, is the message of HOPE. My family, friends, and doctors have been a GODSEND to me, and I continue to work full time and I remain active. At diagnosis, I did not believe this was possible. Soon after diagnosis, a nurse talked to me and said that above all else, HOPE was a powerful thing. I'm sharing that message with you now, six years later ---

Give the initial treatments some time to work --- I hope you will see a decrease in PSA values, which can be an indicator that the first treatments have begun to work.

If you need some encouragement and inspiration, go to the search box at the top of your screen. Type in this thread title, as follows:

LETTERS TO THE NEWLY DIAGNOSED.

The search box will immediately find this thread --- read the letters, and share them with your father. The letters will help give him some encouragement and some HOPE as he begins his new treatments.

Wishing you the very best, from across the miles,
CYCLONE ~ Iowa State University

You are done with your URO. You have great advice from your MO and great advice and support here. I hope you agree we have indeed given you some sunshine. Best of luck moving forward. Keep us updated on Dad.

Hi givemesomesunshine, Welcome to the board but l am sorry that you have to be here. There are a lot of us guys here with advanced cases and a lot of spouse's, children and the like who are concerned about their loved ones. Like your dad, I have an advanced case of Pca. I was diagnosed in 2013 and am still here. Not without setbacks but none the less I am here and doing well. You said your dad is a strong and healthy 75 year old man. That is good news. The androgen deprivation therapy may be tough on his body so make sure he continues to get his exercise and good nutrition.
You are in the first phases of treatment for an advanced case and will likely continue until your current treatment plan is no longer effective. How long it lasts depends on many factors which I cannot even begin to explain. But your dads overall health will be a benefit to him.
I don't think I read anywhere about chemo. If your dad hasn't considered it, chemo may be another option. All treatments take their toll on the body but the body can generally recover. I don't have much more to add except that treatments can help extend one's life by many years.

Sunshine,
The studies show that Zytiga (or Xtandi, a somewhat similar drug) are at least as effective as chemo. I have an unscientific sense that these drugs may be more effective than chemo. It seems most men here opt for Zytiga or Xtandi and save the chemo for later.

One factor to consider is the cost of Zytiga and Xtandi - both are about $10,000 per month. There are programs that help with the cost. Your MO will know about such assistance.

Great advice already posted above. I want to offer encouragement. I was diagnosed over eight years ago, G9. Bone mets discovered two years later. There are many very effective treatments out there. And some promising trials ongoing.

It's different for each man, but it will likely drop rapidly. It won't reach it's low point after three weeks but the PSA should go to undetectable, or at least very low, after a few months. Be patient. The ADT will very likely work quite well.

Hi everyone, we got the 3 weeks post orchiectomy and Casodex PSA Results today - the PSA has dropped to 4.46 ng/ml and the free PSA is 0.55 ng/ml from the initial PSA of 114 ng/ml. We have an appointment with the doctor on Monday. The MO did not mention what the drop should be like but the urologist thought out aloud about some treatment option if it being less than 2 ... but dint really clarify or mention anything last time... we are now worried if the drop to 4.46 isn’t good enough. If any of you have any guidance please help

Good result so far. Hopefully it keeps dropping.

Thanks a lot for your replies. It made me feel better. The PSA test awaiting for the result and later awaiting to meet the doctor is such an anxiety invoking process - and I know this is just the beginning - I really hope the treatment is able to keep the beast in control for a long long time ...

Thanks a lot Cyclone.


An update: We visited the urologist today, he was indeed happy with the PSA results. He discussed with the assistant doc whether they should refer us to the radiation onco now but the assistant doc said it is early as dad has no symptoms right now. Then they advised us to go in for a PSA test 3 months later along with a sonography and then come back - and that the PSA should drop to 0.5-1 by then. They did not refer us to the oncologist - neither MO or radiation oncologist.

When we had met the MO post diagnosis he asked us to visit him after a month with the PSA results and said he may consider adding abiraterone (zytiga generic) then. So i asked the uro if abiraterone needs to be added - he said it is the second line hormonal therapy - to be added when the first line stops working which could be any time - 6 months, 5 years or even 10 years later - now it is not required to see the MO or RO. Now this is what is confusing me - which approach is better ? first line hormonal therapy fails and then move to second or early addition of Zytiga as some trails do suggest its benefit whereas others don't. Without the uro's referral to visit the Onco - the insurance company may not pass the medi-claim. Nonetheless, we are thinking to consult the MO once for his opinion. Any inputs on what should be the treatment plan now and if both of them have different opinions how to deal with the same? Also, i asked the urologist if my dad should start taking Vitamin D3 tablets for his bone health - the doctor said u can all continue to take the multivitamins he takes currently - i said he does not take any - should he start taking Vitamin D - finally he said yes you can, it can be good.

Post Edited (givemesomesunshine) : 8/5/2019 4:43:46 AM (GMT-6)

GMSS
Your Dad's PSA drop to 4.46 from 114 is great! Using straight math thats a 96% drop!! Treatment is working. The right treatment will work even more. Also, I agree 100% with mattam last response. You need a well versed Oncologist, preferably at a Cancer Center where you can see other specialists to mange your Dad from here on. He has Advanced PC and there is nothing more important than to keep him with the latest up to date treatments, and supplements that are out there. If your current Insurance won't approve a visit and treatment by an Oncoligist, shame on them, try to switch insurance coverage. Be the best advocate for your Dad.
P.S. After a review of my lastest blood test I was advised by my Naturopathic Physician to take 2,000 IU of Vitamin D every day, but that is primarly due to being on Zytiga, which weakens my bones.
Keep the faith
Wings