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Advise re prostrate cancer treatment for my dad...

Posted , 16 users are following.

worriedformydad
worriedformydad

My dad who is a hale and hearty 79yr old who walks 2 to 3 miles most days has just been diagnosed with prostrate cancer, he has a PSA of 7, A gleason 7 (which is a 3+4), he has no symptoms. He is seeing a doctor on 1/6/15 to decide on treatment, surgery or hormone therapy with radio therapy. likely to opt for the hormone therapy with radiotherapy. Both read quite worryingly re side effects. Anyone out their with info/advice re hormone therapy and radio therapy. Is radiotherapy alone better as Hormone therapy described as chemical castration, sounds scary re side effects. My dad is fit with good quality of life. Any advice from those that have been there...Worried for my dad.

2 likes, 69 replies

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  • norma72045
    norma72045 worriedformydad

    Posted

    I'm the Wife of a man who has recently been diagnosed with the same as your dad Gleason 7.  I can tell you my hubby opted for ,hormone therapy&radiotherapy. I can only tell you how he feels.  Firstly like your dad he's was a very healthy 73yr old who walks every day.  Since he began the hormone treatment he has one or two hot flushes,he tires a little more but he eats well and he is still doing his walking. His oncologist told me to encourage him into normal life,once he's come to terms with the diagnosis.

    Now he hasn't got as far as the radiotherapy yet but he is on the hormone tablets and injections. Now from my point of view,he's a bit moody,he wants a bit of quiet more,he's not so talkative,but we do discuss how he feels.

    But on the whole if it's going to save his life without any drastic surgery we are fine with it.  I don't know where you've been looking but I think your description is all wrong.  My hubby had the biopsy and he had a week in Hostpital because he caught Septseimia,and he's still getting over that.

    I think your dad will be fine,but that's just my oppinion. Don't worry just support him,and push him into his normal life as possible. 

                      Take care you'll be fine.

    • worriedformydad
      worriedformydad norma72045

      Posted

      Thanks for that information. I would be interested to know how your husband fairs with ongoing hormone therapy and eventually radiotherapy. Researched information can be quite worrying, the best interpretations to note are how others using the treatment are fairing. Side effects particuarly re hormone therapy suggest a potential deterioration in quality of life which is scary especially when there is suggestions that watchful waiting/active surveillance may be better, though the doctors advise treating.

      Thanks for the information, much appreciated.

      Best regards to your husband.

    • Worried4myDad2
      Worried4myDad2 worriedformydad

      Posted

      Dear Sue

      I have found your post and subsequent replies from Carl etc so useful - I hope you won't mind me email you.

      My dad is 89(!) and has been diagnosed with prostate cancer. His PSA is 37. He has been recommended hormone therapy but is not keen to take Bicalutimide due to the side efffects (he is an ex Dr). I just wondered if your dad had undergone the hormone therapy in the end and if so, how he got on with any side effects. I am worried about him not taking anything.

      thanks so much

      Clare B

      London

  • carl05115
    carl05115 worriedformydad

    Posted

    Dear Worried for My Dad,

    Your father is very fortunate to have lived to the ripe old age of 79 and be hale and hearty to boot.  He is even more than fortunate to have a daughter who appears to care so much for him and his well being.  I will turn 70 in October and have a very precious daughter who will deliver my first grandchild, a son, in November.  I love her dearly and she loves me.  She is an allied health care physician and her older brother is an emergency physician with a post-residency fellowship in palliative care.  

    It is very likely the case that you will have many more years with your father as the likelihood that prostate cancer will take him is for all practical purposes nil.  It will be important, however, that you recognize and help him to recognize that far more prostate cancer is treated because of patient or care-giver fear than because of medical necessity.

    None of the stats on your father suggest the remotest of concern, save for his Gleason score which falls into the intermediate range.  A PSA of 7 is normal for his age.  Nothing suggests cancer aggressiveness.  

    You should read the United States Preventative Services Task Force Recommendation on Prostate Cancer and read it in its' entirety.  And, unless PSA testing was initiated because of an abnormal nodule felt by the physician on a digital rectal exam then you should seriously question a doctor who "screened with PSA" a 79 year old man.  If you read the above document and research the professional opinion of the person who developed the PSA test, you will learn that it should not be used to screen.  

    Your father is a perfect candidate for watchful waiting.  He does not need to be re-biopsied ever, but you might in six months test his PSA level and do it again each six months.  From that you can determine doubling time (there are sources online) and develop a plot.  That will give you an indication of aggressiveness.

    In 2005 with a PSA of 20 they finally found my cancer (my prostate had been biopsied twice before, starting in 1995, to no avail).  The cancer was graded 3 + 4. I, too, was screened with PSA and stepped onto the cancer treadmill.  Thankfully, I read alot and consulted with experts in the field.  Now, twenty years later (I probably had observable cancer twenty-five years ago) I still have no symptoms, although my PSA is now over 80.  I also haven't subjected myself to any treatment and, hence, have no side effects from treatment, effects that are life changing for a man.  

    The advice that I would give you from someone who has been there is to enjoy the company of your father, tell him often how much you love him, come to grips with the overall design that he will likely pass from this life before you and that that is part of the design, because it would probably kill him to live through the loss of his precious daughter.

    I Wish you the Very Best,  Carl

    • worriedformydad
      worriedformydad carl05115

      Posted

      Thanks Carl your post and advice is both touching and useful. My dad is a 'do as the doctor says' and is opting to treat at this point. I am the one researching the pro's and cons and various possibilities. I have asked him to delay for a few months to further consider as treatments appear to suggest far more radical negative effects than the cancer itself which can as you say sit dormant. Will see how he feels after we attend the doctors appointment on the 1st june.

      Your post is heartening and your decision to just get on with things and watch and wait is one I wish my dad would consider. The very thought of cancer frightens people.

      I really wish you well, I feel a forum like this is much better than scary impersonal information that I have read and researched. It puts things into perspective

      And the love of a family makes coping with cancer easier. I found your post uplifting in trying to decide a way forward fro my much loved dad. Thankyou.

      Best wishes to you.

      Sue

  • Dudley71081
    Dudley71081 worriedformydad

    Posted

    Hello WFMD,

    At this point it would be good if you could read all the Posts by Carl05115. Therein,   are a wealth of informed observations and conclusions which more than adequately encompass your Father's present status/condition and which should better enable decision making and forward planning.

    I hope your Fathers prognosis is not too severe and that you all manage his illness in good Spirits,   thankful for the life which he has had and cherishing,  what remains.

    Kind Regards

    Dudley

    • worriedformydad
      worriedformydad Dudley71081

      Posted

      Thank you for that. I am about to look at the posts for Carl05115.

      It is a very individual decision and making the right choice is important. My dad has a great sense of humour and positive outlook, that will see him through. (I do the worrying !!1)

      Thanks for your post.

      Best wishes to you.

      Sue

    • carl05115
      carl05115 Dudley71081

      Posted

      Hi Dudley,

      Thanks for the words of support.  It is precisely the situation of "worriedformyday" that activate my efforts on the forum.  79 years old and a physician screening/trolling for prostate cancer with a PSA test. Truly remarkable.  How's touring your sweet countryside going?  Carl

      P.S.  Not sure you'd want to brave the Biker Crazies in WACO. Australia is a lot more civilized.    

    • Dudley71081
      Dudley71081 carl05115

      Posted

      Hi Carl,  I have just lost two fuller responses,  so will keep this v. short.  

      Firstly,  thankyou for your calm,   wholistic and effective advice as always.   Secondly but not least I hope you are continuing to go well.

      Observations about the Bar in Arnie's T2 are now in the ether.

      I've sold my GSX-R and am currently looking at things I can't really afford.  Such is biking!

      We have had two good rains.  The countryside is green,  the Ocean clear but cold.  The sun is out,  the sky blue and I am looking at my wet-suit.  But am not sure I'm brave enough yet,  so I'm prospecting for a Buddy who is also nuts.

      Stay well.  I hope we hear good tidings from David 41094 soon.

      With Kind Regards

      Dudley

    • carl05115
      carl05115 Dudley71081

      Posted

      A man without his motorcycle.....a true travesty!  And you be a surfer......I grew up in southern California and, believe it or not, I never learned to board surf but did body surf at "The Wedge" in Balboa where waves would get a true fifteen feet high.  See, I'm probably at least as crazy as you.  For your information I live in the Pacific Northwest, in Oregon where it is always green (eat your heart out) and I have 150' (approximately 30 meter fir trees in my back yard)!  Must say that the Aussie life looks very good too though.  

      My Best to You My Friend,  Carl

    • Dudley71081
      Dudley71081 carl05115

      Posted

      Makes mental note ...  ' Do Not Compete With Carl '

       ...  Who's trees are taller

            Whilst my waves are smaller

            Who motorcycled the Soviet Bloc

            And who undoubtedly,  would have

            A bigger ...... Shoe size

            Whos land is ever green

            Whilst mine has rarely been.

           

            And somehow I feel

            I'm unwittingly competing 

            With an ex-Navy Seal !

            

            Best Regards

            Mon Ami,

            Dudley

       

    • carl05115
      carl05115 Dudley71081

      Posted

      :-)  Dear Dudley,  I have always found that the best way to compete (unlike this insecure nation from which I spring) is simply to capitulate!  You win!  Want to go riding?  Carl
    • Dudley71081
      Dudley71081 carl05115

      Posted

      Hi Carl,

      O. K. Buddy,  for the sake of the Site ... I'll buy it !   It's been fun.

      The digital age brings us instantly closer but ultimately,  emphasises the tyranny of distance.  A ride on a road threading between the Ocean and the pines would have been good.

      Take care of yourself.

      Dudley

  • elementalist
    elementalist worriedformydad

    Posted

    Hello, I am a 61 year old diagnosed with advanced prostate cancer, with metastases to much of my skeleton. I was diagnosed after visting the ER for intractable pain in my lower back. Since I had been having lower back pain since 1987, almost identical to the pain I have been experiencing as of late, with the exception of the intensity and insistence of the most current pain, I didn't think much of it, except I was thinking of surgery to relieve the pressure on the offending nerve roots. Well, my visit to the ER led to a CT Scan, which showed the relatively widespread tumors. I have had a lot to think about since the diagnosis, but I must admit that I haven't had the emotional shock that many have when they are first diagnosed. The back story may tell some of the stroy as to why. I went to my GP about 2 1/2 years ago, asking him to do a work up for prostate cancer, as I had signs and symptoms that could easily be indicating such. It could also be indicating prostatitis. When I told him what I wanted done he told me that's not how we diagnose prostate cancer. He told me we diagnose prostate cancer when it has metastasized to the bones and other organs. Well, hang on a second doc. I'm sure that is not quite true. As it turns out, if he had given me DRE (digitak rectal exam) and/or a PSA test, it almost certainly would have been indicative of cancer. But, this GP decided that he would not be told what to do by a patient. So, rather than swallow a little pride and check to see if I had cancer, he chose to treat me for prostatitis instead - twice. Very minor differences in the before and after with the antibiotic treatments. Anyway, fastforward to January of 2015 and I have my CT Scan in my hand. I decided to quickly dispense with the first 4 stages of Acceptance of a terminal illness and tossed aside, within a few short moments, Denial, Anger, Fear, Grief, and hung onto Acceptance as my Anchor. It just seemed the prudent thing to do with what may remain of my life. Anyway, I see people posting PSA levels of 7 and 20 and 25, etc. I was very naive coming in to the whole prostate cancer scene. I had no idea what certain PSA levels may indicate, and it seems that, in many cases, neither do the doctors who are treating us. Anyway, My radiation oncologist told me that, in thirty years of practicing as an oncologist, he had never senn anyone with a PSA level as high as mine. He told me it was 9,700 (yes, nine thousand seven hundred). This meant nothing to me. It only seemed to carry more weight when I had seen several doctors, all of whom had the same thing to say. They had never before seen a PSA level as high as mine. I still do not know what the full implications are at this time, 4 plus months after my diagnosis. I only know that the tumors are likely to shrink nicely if I can get the PSA levels closer to zero. I have had 3 more levels checked, and they have shown the following results after going on Firmagon (aka degarelix). The second level was 5,500, then ~ 1,200, then ~ 120. I am hoping my next blood test, to be drawn on June 9th, will yield a PSA level of zero. I have beel relatively fortunate that my symptoms, although not minor, are certainly something I can currently live with. I have some persistent back pain, but it is controlled nicely with opiates, and the radiation I had in the early weeks after diagnosis. Even day 1 after rafdiation, along with the magical steroid, dexamethasone, I dropped from a pain level of 8-10 to a very manageable 3 to 5, which was further reduced with management of my pain meds. I have virtually no symptoms in my prostate, I can pass urine with little trouble, I ahve none of the common burning, and very little of the stop and go type symptoms. My biggest complaint is that I love to play guiyar, and sadly there are tumors in my cervical spine that are causing sufficient pressure on the nerve roots to cause weakness, tingling, pins and needles, and numbness in much of my two arms, with most of it occuring on my left side, my fingerboard hand. I do have the option of having my cervical spine irradiated to relieve this pressure, and I will probabaly opt for this. The thing I dread is that the dexamethasone has been a very problematice treatment for me, causing me to gain about 70lbs (sorry I don't know what that is in stones - I am Canadian wink ). I am soon to be weaned off of the dex. within the next few weeks. I don't want to go on it again as I am going to be trying very hard to lose that weight again. Anywya, I would like to know if any of you have had similar readings of PSA and if so, what are the implications of that? I hope and pray for calm, peace, and recovery to the many of you who have been hit with this diagnosis. I believe there is hope, even for those who are in the advanced stages of the disease. I am ultimately looking at alternative cancer treatment protocols. I have found the ones I believe will be benficial to me. They are not expensive, some are simply minor modifications to diet, but some are also mixed with the use of certain "supplements", etc. I don't know if there is some restriction on speaking about alternative protocols on this forum or not. If nor I would like to share what I ahve learned. I am trying to sell one of my pieces of real esate to make it easier for me to afford the treatments, whcih may end up costing me somewhere between $300-500 per month. I thinkthat is a fair alternative to much of the conventional meds. And, what do I have to lose. I am essentially considered terminal by the world of conventional medicine. I like the odds that are given me in alternative treatments. At least there is some hope offered there. Anyway, I must run. Bless you all. Talk with you later.
    • Dudley71081
      Dudley71081 elementalist

      Posted

      Hi  Watson,

      Unbelievable Man,  absolutely unbelievable !  What a story.  What a foul up.  What can anyone say?

      Now,  if you'd like to hand me that hat in the corner,  the pointy one with the big 'D' on it,   I'll exit this site and leave it to the grown-ups.

      I hope you keep everything manageable for a long time yet.

      With Kind Regards,

      Dudley

    • carl05115
      carl05115 elementalist

      Posted

      That is quite a story.  And a 9,700 PSA at the time of final intervention. Lord man, that was a resounding miss by your GP.  It is interesting that you were so able to move from denial to anger to Fear to Grief and to Acceptance so quickly.  More power to you!  (You sound like a mental health therapist)  That story would have a lot of people lingering in anger and watching it morph into rage!  But probably neither of those stops is likely to be very healing.  

      I want to pick your brain about about your progression.  You say that you have had back pain of a similar nature since 1987.  That is 28 years and could suggest that your cancer had already metastasized 28 years ago at the age of 33!  For what it is worth to you, that suggests a relatively slow growing cancer at the onset that somehow escaped the capsule of the prostate.  It also suggests a PSA doubling time of approximately 3 years.  My reading tells me that you had an early onset intermediately aggressive cancer.  I'm told that because cancer finds a new blood supply in bone that its aggessiveness increases when it hits bone, but nevertheless, your cancer may not have been particularly aggressive at the onset.  

      Maybe, statistically that could mean that it wouldn't be as aggressive once metastasized as a pre-metastasized aggressive cancer would become.  

      I do wish you the very best elementalist.  We are here for you.  I have chosen to risk watchful waiting (without further biopsy) and my PSA is now 84, which of course pales compared to yours.  And I will be turning 70 in October.

      You mention that you are from Canada.  I am Pacific Northwest, USA. Where in Canada?

      Keep in touch, I'd like to offer whatever support that I can and I'd like to learn from you.  My reading on high PSA shows people with 23,000 PSA with minimal symptoms.  These people are rare.  

      Anyway, hang in there and keep us posted.  Carl

      P.S.  Some people rise above the statistics and are outliers.  I'm holding a place there for you!   

    • dealwithit
      dealwithit elementalist

      Posted

      Dear Elementalist,

      I found your post! What a remarkable story, unbelievable. Half of your case is similar to my Dads, but only bone metastasis on his spine, lower back. 

      I hope you will find a treatment and manage it for many years to come. Good luck.

      Best Wishes,

      Miki 

    • dealwithit
      dealwithit elementalist

      Posted

      Dear Elementalist,

      My dad was told Gleason 7, stage 4, PCBM spine, lower back, chest, unable to walk was terminal a week ago. However I couldn't and no way in accepting this, totally out of order. Then we moved him to Cancer Centre, was told 2yrs life span (well at least sounds better) in wheel chair, but who knows. Beside taking his routine med, we give him supplements, maintain low carb and low fat diets which we do hope will make a different. I do update and share his condition live from hospital in my thread. 

      Keep searching any treatment you may find and a big hope to you. 

    • worriedformydad
      worriedformydad elementalist

      Posted

      Dear Elementalist,

      I came on this site to find like minded others who were going through treatment re hormone therapy and radiotherapy to gain information  on how it all goes with treatment,  to be able to offer reasurance to my dad who has prostrate cancer luckily currently in early stages, as the sites with information only are rather frightening and disheartening re side effects of treatments and risks ....I found something else that is equally or more apropriately more important....the courage and determination, the positivity and hope that you show and others also... its about finding out and doing what you can but also getting on with things. Being brave and showing true sterngth of character, getting on with life in a nutshell. I will take off my worry hat and support my dad to carry on enjoying life rather than telling him to be careful. I got wrapped up in the what ifs and the scariness of the C word. I still want to find out what is best and what isn't re treatments as my dad is not someone who uses sites like these, he is a techno phobe. He has a great sense of humour and a positive attitude.

      To yourself, and to dealwithit, to Carl and to Dudley who sound like they live life in the fast line and show some of us younger ones up !!!!! I have found something more precious on this site than the details of the treatments, to get on with things, have hope, live life and appreciate the moment. Wish I knew you all and I would hug you and say thanks for your positivity....I'm a mental health nurse and you are a great example of attitudes that keep us healthy in mind. 

      Best to all.....

       

    • norma72045
      norma72045 worriedformydad

      Posted

      And there you have it in one word. POSITIVETY the key to good health.

                 

                          Take care your Dad is in good hands.x

    • elementalist
      elementalist worriedformydad

      Posted

      Hello worried,

      I do hope you find what you need here, and more appropriately that you find what your dad needs here. There are so many ways to deal with cancer at the curative level, and I posted a link on another comment I just made to Miki. It is in the queue for moderation due to the link. I guess I know now that external links are unallowed. There is a plethora of information on alternative treatments, and I think, for many people, myself included, the best possible treatment options. Since I am told I have a terminal illness, what's to stop me from seeking advice from people who claim to have beaten similar cancers? It would make no sense for me to say I'll just go on trusting conventional medicine, especially since they have written me off as terminal. Okay, so what if I am terminal. It still would make no sense for me to just give up without trying something that says there is still hope for a "cure" for me, not just life extensio, but a cure. I will gladly try that, rather than kay down and die. Anyway, I must go, as I have people to see, places to go. Bless you and your dad, and I truly hope and pray that you find what you need, wherever that may be.

      Emis Moderator comment: I have removed the website details as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • dealwithit
      dealwithit worriedformydad

      Posted

      Dear Worriedformydad,

      Sorry to hear about your dads PC, but stay strong and don't be dismayed.

      Please make sure you don't let Dudley scare you away for a second or even make you cry. (Sorry Dudley) smile 

      In the early stage, it sounds promising if you could find the initial appropriate treatment, follow up and management of his illness, hence he will be around for abundant years to come. That's all we can do for our parents. But don't forget to carry on with your normal life routine and having a laugh.

      If you are unsure of any advise from his doctor, do seek 2nd or 3rd opinion which you may find some assurance and act accordingly. 

      Can I assumed you are in the UK? 

      Good luck and big hug to you. X Keep us posted. 

      Best Wishes,

      Miki

       

    • Dudley71081
      Dudley71081 dealwithit

      Posted

      Hey Miki ... that's a bit over the top isn't it?  

      Steady on.  You posted a description of a condition that sounded terminal and in good faith I responded sympathetically to that,  trying to support you.  In a subsequent post,  you have actually said he was admitted to the Cancer Hospital as terminal.  But in between , there is an opinion that he will be able to be in a wheel chair for two years ?  Even though you have not been specific ,  I can only suppose that one opinion was for an untreated condition and the other prognosis,  for the condition if treated.

      Just like mine went from  ( untreated)  ' you will be gone inside 5yrs, with the last two being ghastly '  ' to  (treated by 42x Radiotherapy ) ' You should be O K  for the next 5yrs and even then we've got other modalities to use  '.

      Yes,  you have confused me,  so could you please cut me a bit of slack ?

      Thanks

      With Kind Regards

      Dudley

    • dealwithit
      dealwithit Dudley71081

      Posted

      Dear Dudley,

      My dad was 1st admitted to hospital 2weeks ago, unable to walk let alone sitting up, was in a very bad state (4mths after his prostatectomy, with tablet Calumin) and after all the medical procedure then we were told its Stage 4 terminal by his Urologist and given Casodex. I thought it was not right, then 2nd week we decided to moved him to Cancer Centre, consulted with Oncologist there and was told 2yrs life span but may spend the rest of his life in wheelchair (before treatment began). He is bed rest, incontinent (I call him a big baby). Now going through RT + PT 2x a day with help of Spinomed, he started learning sitting up and walking with support of walking frame the first time, 2nd time he tried it without the walking frame but with human support.

      Apologies if my humour is over the top (dry British). Cheer up. 

      Best Wishes,

      Miki

    • Dudley71081
      Dudley71081 dealwithit

      Posted

      Hello again Miki,

      Hang in there.  It seems you are doing wonders for your Father;  trying all you know for him and he is doing the same for you.

      Under the circumstances,  I can see that coming on-line must be a considerable release of tension for you.  No harm done.  ' It's all good ' as we say over here.

      Dudley

    • elementalist
      elementalist norma72045

      Posted

      Hi Norma, I agree that maintaining a positive mental attitude is going to be beneficial to anyone who is dealing with illness, whether physical or mental. We know our immune systems function much better when we are in a good frame of mind. That is why some people in the healthcare "industry" suggest comedies if one tends to like watching movies. I guess the endorphins produced also help. I haven't researched the true mechanism of the benefits of laughter and positive thinking, but I do have an innate sense that they work, probably much better than the average person may think. So, my layman's advice for anyone dealing with these nasty illnesses, is to keep smiling, laughing, and sharing the same with others who are in need. Some are going to be slower to respond to all of the joviality - be patient with them, and sooner or later they may just find themselves getting caught up in the idea that laughter is most certainly better than being downcast. Blessings to you all.
    • norma72045
      norma72045 elementalist

      Posted

      Thank you Elamentalist, My hubby has had a negative attitude all his life,and since he's been told he has Prostate cancer he's got worse. But I must admit for a man that's been fit all his life,that firstly was a shock then to top it,he got Septseimia from his biopsy,and nothing went right for him,so he slowly went lower plus feeling quite sorry for himself.

      But since we've got every question and treatment in place,his whole attitude changed and he looks and feels better.  So I'm talking about positivety through experience.   It works wonders.  Never give up.

    • supercargo
      supercargo norma72045

      Posted

      Hi Elamentalist

      As others have posted 'wow'

      Your posts show a lot of inner strength, well done

    • supercargo
      supercargo

      Posted

      Oops sorry Norma, my post was to Elamentalist.
    • supercargo
      supercargo elementalist

      Posted

      Hi Elementalist

      As others have said 'Wow'.

      Your posts show a lot of inner strength, well done.

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