WHAT SHOULD I DO NEXT ?

Greetings to all. I joined this wonderful PCa Support Group in September 2016.

I have just completed my 2 year continuous ADT2 ( Zoladex 10.8mg + Calutide 50mg ) which is a part of my initial treatment regimen. I am reasonably well informed about PCa but I am very much interested in getting the valuable advice of my friends here before I meet my Oncologist on 30th of this month. I want your replies on two questions :

1. Main question : What should I do next ? Simply, please tell me what you are going to do if you were in my position.

2. Taking into consideration my pathology at the diagnosis, the aggressive treatment I have taken with no loss of time and my present status, what would you say about my prognosis ? ( A guess would suffice )

Brief history of my PCa : I did not have any PCa related symptoms but a routine blood test indicated a high PSA ( 7.9 ). An immediate MRI Scan and a 12 core needle biopsy in March 2015 diagnosed a GS 9 PCa at my age 68 then. On 15th March 2015 I underwent a Radical Retropubic Prostatectomy. This was followed by 36 sessions of IMRT ( 74Gy ) along with a 2 year continuous ADT2 as adjuvant treatment.

Post surgery Pathology : No extraprostatic extensions, no seminal vesicle involvement, no lymph node invation, perineurial invasion present, Gleason sum score : 4 + 5 = 9 , positive surgical margins. Tumour burden : 40%, both lobes affected. Size of tumour : 12 x 10 mm. Staging : T2c No Mx

PSA Record : Before surgery - 7.9, Two weeks after surgery, before starting any other treatment - 0.079. ( March 2015 ) ADT2 started in April followed by IMRT in June 2015. PSA checked every 3 months during the treatment period up to date which has remained stable at 0.008 ng/ml ( 8 - machine noise ) . During this period I have checked my T level twice : 12.97 ng/dL and this April 7.18 ng/dL.

Side effects of aggressive PCa treatment : Lack of libido and 100% impotency. Loss of muscle mass and a slight drop in energy at times.

I have no other health issues. I am under the care of an Endocrinologist and all important metabolic functions are being checked regularly with the relevant tests and so far all are tip - top. I am very particular about my diet rich in vegetables that include antioxidants and anti cancerous substances such as brocolli, cauliflower etc. For Lycopene daily i take cooked tomatoes with olive oil. No red meat and dairy products but plenty of small fish, fruits and nuts. Green tea is my favourite. Vitamin D3 4000iu daily is the only supplement I take ( Please suggest any others if they are really beneficial ). Daily in the morning I do a 1&1/2 hour jogging session. There has been no increase in my body weight due to PCa treatments and it remains at 78kg with a good BMI. Physically and mentally I feel sound. I am very well looked after and supported by my family : wife, two daughters and my son who have given me a world of happiness with 6 grand children!

Limitations I face : There isn't a single Oncologist who specializes in treating PCa in my country. They treat all types. No hospitals or research institutes conduct any research on PCa. Advanced tests and scanning such as Gallium 68 PSMA PET and C11 Choline PET are not available. The nuclear bone scan available is very basic. T3 Multiparamereric MRI is the only reliable test if appropriate. Treatments come only from the text books. But I have learned the diplomacy of arguing with the doctors!

Back to my two questions : I am particularly interested in receiving the replies from Patrick, Nalacrats, Alan Mayer, Dan 59, Gusgold, Gourd dancer, Yost, Administrator Joel and any other good friends who are willing to help me.

Thank you for your time and kindness in advance.

Sisira

16 Replies

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  • If I was in your shoes I would stop the ADT and continue everything else and monitor your PSA,,,,,,good chance you are in a durable remission

    Gus

  • Thank you gus

  • Sisira,

    As I read your history from past post you have had undetectable psa for 2 years while on adt?

    I certainly think what Gus said is very reasonable as long as you continue to monitor your psa, as he also said. I wish you the best.You have done very well.

    Dan

  • Thank you Dan

  • Sisira,

    I think I agree with Gus and Dan. You've blasted the cancer with surgery, radiation and ADT. Maybe it's time to stop the ADT and see if there's anything left of the cancer.

    Some people argue that 3 years of ADT gets the best results before stopping, but I think the difference between 2 years and 3 years is small. See what your oncologist thinks and maybe search Pubmed to see if you can find a difference.

    May I ask - in what country do you live?

    Alan

  • Thank you Alan. I am from Sri Lanka. I am also a member of YANANOW and my regularly updated story is under my name Sisira Ramanayake. I follow up closely all GS 8,9 and 10 stories and also yours there.

  • I just did a Google search on (prostate cancer oncologists india) and came up with this medgurus.org/prostate-cance..., but I don't know that your insurance would cover treatment in India.

    Sometimes I think it's better to have a doctor that listens and is flexible than a doctor who is highly expert but won't listen and follows a rigid treatment plan for all patients no matter what.

    Good luck.

    Alan

  • You are absolutely right Alan. I had to drop my first Oncologist and also very sadly the expert Urologist Surgeon who did my RP because both of them are not prepared to listen to me and answer my questions. Now I am going to a more flexible Onco and Uro ( Who was the second Uro who assisted in my RP ). Even the oncological issues I discuss with him. Sometimes I take the printouts of various replies given by our HealthUnloked PCa support group and discuss with him and he appreciate good replies. He is really good. Thank you for the link provided to contact specialists in India. I pay out of my pocket for all my medical expenses so it does not matter in which country as long as I can afford.

    Your extended concern and most kind support is greatly appreciated.

  • I think you are doing great. In my case my Pathology is so mean and agressive, not one of my Docs. want to even think of a Vacation, IADT, BAT. They tell me to go as long as I can on my ADT program--Which is what I call ADT-5,[Vantas Lupron implant], Casodex, Proscar, Avodart and Dim[Di-Indole Methane]. Basically they do not what to let the beast out of the bottle--as they may not be able to get it in.

    A lot has to due with your Pathology, and the Particular Gene Mutations you have, Your surgical outcome was the same as mine--except post PSA I was 7.4.

    As to supplementation's, that have been discussed on this site, you can go to each of our names and pick up past posts, I think you can--I never tried it. Now we all discussed many supplements, and that does not mean they are being used by me or others. We have a lot of what-ifs.

    Nalakrats

  • Thank you Nalakrats. I read your frequent posts with keen interest.

  • Let me see if I got this straight. Is it that after intermittent ADT, when you go full time, that the 2-3 years kicks in? Or is it patient specific? I've been on ADT for 7 plus years, the last couple full time. I would love to take a break for awhile, but it started failing and I'm on Zytiga too. Now my PSA is creeping up by .2 a month. My Onc says we'll let it play out until I start doubling again. Inputs, friends?

    Joe

  • Joe, I had my RP in March 2015 being diagnosed in the same year. So this ADT is a part of my adjuvant initial treatment and it has run continuously for 2 years up to the point I have stopped it now as originally planned. So it is not a case of Intermittent ADT unless I restart it after a break if necessary. Thank you for your kind response to my post.

  • Sisira, that 2 years of ADT sounds like a standard protocol out of the guidebook. I seem to recall reading an article or reference on this site that suggested that too much time on ADT would make recovery of T levels and potency less likely. As others here have already suggested, a break from ADT is what I would do. It is actually what I have already done, post HIFU surgery and a prior 6 month eligard shot. My urologist wanted me to go another year and a half on ADT (the standard protocol for radiation patients). I told him no. For one thing, I wanted to gauge the effectiveness of my surgery. I am age 67. Good luck with your treatments and your journey with this disease.

    Ed

  • Thank you Ed for your inputs. I decided initially 2 years continuous ADT2 would suffice depending on my pathology at diagnosis and the most aggressive treatment regimen I have followed immediately : RP + IMRT + ADT2 ( I have given the details of my PCa ). My T level checked during this month ( April ) is 7.18 ng/dL which is less than 20. I want to check it again after 6 months and see. Hope my PSA will remain undetectable ( Main concern ).

  • My situation was similar to yours. Went through a RP in Jan 2010. Subsequently Radiation and THREE years of ADT. Same loss of libido etc. Ever since my PSA has been near the zero level.

    I am pretty fit and alwasy active and take no medicine. I am almost 74 years of age.

    Just my two cents worth about my own experience.

  • Wow! What an inspiration for me. Hope you will remain in stable remission for many many years. I think the aggressive treatments we have taken without hesitation should pay us the dividends. I should seriously consider adding one more year to my ADT and make it THREE. Even in Alan's reply he has just mentioned about it.

    Thank you very much for sharing with me your own experience.

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