New Member, diagnosed September

Hello, I am relieved to find a forum for this subject. I was given a routine physical and complained of urinary problems in late August. When I got my PSA, it was 410! The Urologist did the biopsy, gleason 9 in 12 regions. It is metastatic to the abdominal lymph nodes. I'm 62, still working with no pain. The October Eligard shot and lowered PSA to 69 and going down. The Oncologist said I need chemical castration hormones from now on. It is life changing to say the least. He said I would last 3-10 years. Has anyone discussed Orchidectomy as Eligard shots are expensive?

15 Replies

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  • Hi Tim, sorry you had to join our club. There are many, many more knowledgeable guys in this community than I, but my two cents worth is to not listen to your Oncologist about survival times, you are not a statistic, you are a person. Sorry I can't help with the Eligard question. My advice would be to listen to the best medical advice you can get, but also look beyond that for an integrative approach to survival and take time to think before making major decisions. I recently ordered a book online called 'A Salamander's Tale'. It is written by a New York based psychiatrist, who was diagnosed with metastatic PCa in 1984 and is still with us (yes that's 32 years!). Best of luck with everything.

  • Tim. I get very angry when medical professional try to play God by telling men how long they have left. The same thing happened to my 76 year old brother. I am also a PCa survivor. Having said that your statistics are challenging. Over the past two years I have written two books on PCa. I have spent more than 1000 hours research all factors relevant to PCa. I have concluded that pretty well all men can survive prostate cancer. I have also concluded that most men with metastatic cancer can only survive if they realise that conventional medicine by itself cannot cure them. What is required is a treatment plan developed by an integrative cancer specialist. That is a conventionally qualified Ca specialist who also uses alternative or natural therapies together with conventional treatment medicine.

    My new book "An ABC of Prostate Cancer Today - 2nd Edition includes a suggested plan to fight the disease. This plan consists of seven essential steps. These are:

    1. Alkalise the body - Get your body pH to 7.3 or thereabouts.

    2. Get any mercury/silver amalgam fillings removed.

    3. Undertaken vigorous exercise three times a week.

    4. Detoxify the body.

    5. Obtain Peace of Mind. Far easier said than done. Most cancer has an emotional or trauma component to it at the outset.

    6. Change your diet and supplement your new diet.

    7. Adopt an appropriate cancer treatment protocol.

    I should tell you that I am not a doctor, but am a regular speaker to support groups and seniors organisations in Australia. More details on me can be found on Amazon or my web site at anabcofprostatecancer.com.

    Finally, don't accept the input of one medical specialist. Get a second and a third opinion and be prepared to travel to get on top of your condition. Also get a copy of the DVD's available from The Truth about Cancer. You need to become fully conversant with the circumstances and challenges of your condition.

    I wish you all the best.

    Alan

  • Hi Tim, my situation was similar at examination although metastatic in lymph nodes, seminal vesicles, spine, hips, scapulae, ribs, chest etc. No pain. I think Paolo has given you great advice. As to orchidectomy it's irreversible and largely not undertaken as other ways of controlling PSa have come on stream. I was @diagnosis 200 PSA with those metastases 20 months ago and now @0.18. Take your time over your decisions. Good luck and well said Paolo.

  • Good Morning Tim,

    I was diagnosed 4+ years ago, somewhat like you. PSA 29, Gleason 9 and 10 in all cores, and many mets in pelvis and abdomen lymph nodes. With that type of diagnosis, surgery and conventional radiation are usually not recommended or possible.

    My thoughts:

    1. Find a Medical Oncologist who specializes in prostate cancer to guide your treatment. There are many new drugs now available that many run of the mill local doctors do not understand. Newer drugs can be very expensive if you do not have good insurance. A few world class Med Oncs would be Dr. Charles Myers in Virginia and Dr. Mark Scholz in California.

    2. You should probably be on a triple hormonal blockade, adding Casodex and Avodart to your Eligard injection. Again a Medical Oncologist is going to be taking a more comprehensive view than a Urologist. Firmagon might be substituted for Eligard.

    3. Change your diet to a Mediterranean one. This can be tough, as it means no beef, no pork, nothing fried, no corn, and no peanuts. You will eat chicken, turkey, fish, lots of veggies, olive oil is great, as are certain nuts, like almonds and macadamias. Google Dr. Charles Myers, as he has videos and several books on diet for people like us.

    4. Exercise and get the rest of your body and mind in the best shape possible for the battles ahead. You are not a statistic, so never give in!

    Best wishes,

    Vandy69

  • Hi

    The CHAARTED trial showed a significant survival benefit for men initially Dx'd with metastatic disease who used a combination of ADT plus Taxotere. You should be under the care of a medical oncologist at this point. I agree with other posters who recommend a second opinion.

    My situation was somewhat different than yours when Dx'd.

    I am not an expert only a patient. My cancer history is in my profile on this site.

    I am sorry to hear about your situation.

    Good luck

    Bill Manning

  • First, don't let anyone tell you how much time you have. I was diagnosed at age 47 and the doctor at Johns Hopkins told me I had 5 to 10 years. That was 24 years ago. There is a lot more out there today than when I was diagnosed. I have had the orchiectomy, it kind of devastating but this is a life decision. since then I have gone through radiation, casodex, fanastacide, aboratarone, and now xtandi. A lot of drugs and a lot of years, with a good quality life. Take control of your life, if you don't like a doctor fire him/her. I have fired a couple of doctors along the way.

  • Sorry you are here. As others have stated, do not let anyone tell you how much time you have. Instead, find a team that will fight for you - at least fight as hard as you are willing to go. Only you can make that decision.

    A lot of recent research has shown that agressive treatments can work wonders. I have Stage 4 D1, Ductal prostate cancer (G8, T3N1Mx). Some articles stated that I only had a 27% chance of making it for five years. When I shared that article with my team their response was that would be the case if they did nothing or were not agressive in their treatment. Had surgery last April (at first they thought I was to advanced for surgery) where they removed cancerous lymph nodes in addition to my prostate, went on hormonal therapy last June and just this month finished 38 rounds of radiation. Now I am in a holding pattern with blood work , CT/bone scans (Ductal does not always raise your PSA). If it goes up the next step is chemo.

    Good luck. Hopefully we both have decades ahead of us!

  • Hi Tim,

    I think you can get a very good start if you pay sufficient attention to the golden piece of advice given by Paulo in the first reply you have received here. I too hate Oncologists, Urologists and whoever who pass verdicts on survival like the oncologist you have mentioned, throwing a wet blanket before starting on anything!

    Prostate cancer is a DNA and genetic issue that it is difficult to predict with accuracy how the cancer will progress and the outcome of various advanced treatments now available to manage the disease and the individual's specific response to such treatments. Your cancer is like your thumb print which cannot be matched exactly with anybody else's.

    In dealing with your case, your sound knowledge on the disease will be the foremost important. Even when you look at all the replies given here and the medical advice you receive, how are you going to sort out unless you can interpret them analytically. Even the 3 - 10 year survival period is not bad, because you can learn a lot within one year and learn to survive more than double this period!

    The "Bible" that educated me on the subject of PCa is "Guide to Surviving Prostate Cancer" a complete book with 590 pages, really priceless at $15 ( Amazen.com ) written by Dr.Patrick C. Walsh, Professor in Urology who pioneered the Radical Prostatectomy and its modality Nerve Sparing RP. He held the Chairmanship of John's Hopkins Hospital over a long period of time and is the world's foremost authority on prostate cancer. You should be able to find several other good books too written by medical oncologists.

    If you are keen to know about predictions on survival you can use the robust predictive tools developed by the Memorial Sloan Kettering Cancer center. These are called "Nomograms" - automatic calculators. Go to mskcc.org/nomograms/prostate

    About the treatments I have to say : In the absence of other key information, your Gleason score being 9 and the initial PSA 410, you are likely to have high grade aggressive advanced metastatic prostate cancer. Aggressive PCa ( Gleason 8,9 and 10 ) should not be dealt with mild treatment protocols with the intention of avoiding side effects and enhancing the quality of life. Aggressive PCa needs equally aggressive treatment regimens. Depending on the age one must decide what is more important - to retain life and live or maintaining sexual powers! At 62 you have the age advantage also to lead a successful battle against this monster. But as much as the medicine you have to use your brains too. You have to "hold the bull by its horns" and fight.

    About your burning question on too expensive Eligard, all similar drugs used in the Androgen Deprivation Therapy ( ADT ) are more or less in the same range. The only thinkable much cheaper one is the Estrogen Therapy ( Trans dermal eastradiol with dexametasone ) which also can bring about the same results but I have seen many oncologists refusing this therapy, telling various things. Nevertheless, I know a friend who has high grade prostate cancer ( Gleason 9 ) using only this therapy and surviving for the last 18 years. Please don't rely too much on this because it is one of the isolated cases and his starting criteria could be different to that of yours. All the other drugs which we have to use when hormone therapy fails are still very much beyond the reach of the majority of PCa patients. To me some drugs and treatment protocols cost so much that they should be sent to the NASA Institute that usually spend colossal amounts of money ( that again is public funds ) to discover life in other planets, and not to the hospitals inhabited by poor cancer patients of this planet! So long as there are those greedy urologists and oncologists who are prepared to go to bed with the mafia of multinational pharmaceutical companies, we cannot have any sigh of relief.

    Looks like our battle is on two fronts - the most difficult being the fight against this mafia!

    Hope you will benefit by being with our fraternity and tell us about your progress for a long enduring period of time.

    God bless you brother!

  • If you do not have the insurance , orchiotomy is an alternative. On a second note , my own dx in June of 2006 was fairly similar to yours. I was bpsa 148, with a Gleason 10 confirmed by Jon Epstien at Johns Hopkins. Nowadays there is so many new therapies, Ie xtandi and zytiga, provenge, cabitaxol ect and more to come. My psa never went below 3 . I think the current standard of care is to initiate 6 cycle of docetaxol chemo with initial hormone therapy as that has shown to improve survival. I hate it when Doctors give predictions on death as if they have a crystal ball, I was given a year and here I am still prechemo but on continual hormone therapy for 10.5 years, after a while it becomes the new normal. I was diagnosed at age 49. I wish you the best.

    Dan

  • My dad had orchiotomy and radiation in the "dark ages", pre 1990 and was gone in a few years. My husband has been on Lupron + various ADT for 7 years and his PCA has hidden in abdominal lymph glands only, (only ~9% of men have lymph gland only disease), up to this point when it has started to sneak into the chest cavity. We wanted ADT3 at first, but the local urologist arrogantly refused. So we went along with "his Highness" and never got below 0.2 PSA nadir. We asked for second opinions from Atlanta and got nothing new. Finally in desperation, we went to NIH and got a plan of action that gave my husband 3 good years and a PSA nadir of 0.1, the best yet. The plan wiped clean the cancerous lymph glands, but not before at least one cell mutated and escaped to hide in a node in a spot too dangerous to biopsy, remove surgically or irradiate.

    You have to have a positive attitude to stay the roller coaster ride with PCA. My husband does that by refusing to read up on the disease. [He also refuses to listen to TV news programs.] But you also have to agree to dietary changes and exercise. It may not seem like it at first, but the changes will make an improvement in your quality of life. My husband was very uncooperative for a long time and paid the price: rectal bleeding that took two days in ICU to stop. He lost 20 pounds in a few weeks and is feeling much better now.

  • Thank you gentlemen for your advice on the road ahead. You have given me a great deal to think about and I realize I'm up against a big challenge. I have great support from my wife and daughter, and look forward to many quality years ahead. I will keep you posted on my progress against this unforeseen malady and maintain a positive mental outlook to deal with it. Thank you again.

  • Tim,

    I am glad that you found us. I do have a couple of comments to add to the very wise points already made about our expiration date. As it has already been said, nobody knows when any of us are going to die, it is that simple.

    As far as your question about an orchiectomy, it is a viable option for you given your very aggressive disease (Gleason of 9). The comment has been made that it is not reversible, which is true, but you will need to remain on hormone therapy for the rest of your life so it is an excellent option.

    You did not mention that the doctor has given you an additional hormone therapy drug called Casodex (bicaludamide). This should be added to your protocol, at least until the PSA is really lowered.

    You are also an excellent candidate for early chemotherapy as indicated by Bill. You should read my three posts on the advanced prostate cancer blog (advancedprostatecancer.net) about early chemotherapy (the last post is about the side effect profile). These specific posts can be read at:

    advancedprostatecancer.net/...

    advancedprostatecancer.net/...

    advancedprostatecancer.net/...

    Given that neither Casodex or early chemotherapy have been mentioned I question if your urologist is as knowledgeable as want. It might be time for you to move your care to a medical oncologist with an expertise in treating advanced prostate cancer. Generally, urologist are generalists and they are surgeons. you need a medical specialist.

    Joel

  • TIm f - I have heard (and believe) that the operation is cheaper than any ADT is, and I have heard some vague rumblings that it has some other slight advantage. I didn't pay attention and tell you what exactly, but it was in the area of castration resistance. Cant imagine what it was exactly because I doubt that it was a different time to resistance.

  • Your doctor of course does not know "how long you have", but he can say what the average survival time of people that seemed similar to your condition was as of a few years ago. He could probably also quote a standard deviation for the statistic, but again, what that means for you is not so clear. You know you will die sometime. That is pretty safe to say. The average male in his 60's today is expected to live (guessing) 20 more years, although the lifespan of a baby born to day is 75ish. Cancer of course reduces the expected years, and having metastatic prostate cancer (as I have) is not good. :-)

  • I am so glad I had an orchidectomy about 3 years ago. No shots and best of all, I know I have taken care of that area. Testosterone still from adrenal glands and lesions themselves, but the two little guys who cause the most trouble are gone!

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