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Worried for family member

Posted , 6 users are following.

maja1907
maja1907

Hi. My dad who is in his 60s has been diagnosed with PC yesterday. His psa score is 16 and gleason 7 (haven't been told the combination) He now has to wait weeks for further exams and I am of course very worried and frustrated. My biggest problem is that I have planned to go abroad for all of March and have these horrifying thoughts that I may not see him again if I go. He wants me to go, since it's a great work-opportunity for me, but I would never forgive myself if something would happen with him while I was away. I know his scores aren't low, but I also don't know how bad they are. Any input would be appreciated and also if someone has had the same scores. Thanks

0 likes, 11 replies

11 Replies

  • nick00586
    nick00586 maja1907

    Posted

    Hi maja1907

    Really sorry to hear about your poor dad.  It is particularly difficult for you all because it is all so new.

    For your information I was diagnosed on Christmas eve just done, with PSA 624 and Gleason 9. I have had 2 x 1 monthly hormone injections and my PSA is down to 11. I am due to start chemo in 1.5 weeks. I am eating a VERY strict diet, walking daily, doing chinese medicine and a whole lot more besides. I feel fantastic. So I would encourage your dad to do everything he can to get on top of it. Leave nothing unturned and try to get into a position of control. There is hope if you all believe.

    It is very difficult for you and for others who are onlookers because of course you want to do everything in your power to change the situation, yet the power is with your dad. It is really didfficult to advise you on the best thing to do. All I can suggest is that you eveything you can to ensure that your help keep your dad's head in a very positive space, whatever that entails. It is easy for me to say it but I do think we have generally got our priorities upside down these days: most work siutations should come second to family - i suggest that you put yourself in various situations and ask yourself which one you would live to regret.

    Wishing you, your dad & your family strength and love.

    • maja1907
      maja1907 nick00586

      Posted

      Hi Nick, thank you so much for that. It sounds like a tough journey for you as well, so great that your scores have lowered, that's amazing.  My dad actually seems to be doing ok with the news and both he and my mom are looking for alternative treatment already. My dad is not too optimistic about hormone treatment since he has heard stories about how it can change the physical shape, but he has always been very active and as you say it's more important to stay active and positive while getting treatment. If I decide to go I will be in contact with my parents every day so I know how things are going and I can easily get home if that should be necessary. My dad really wants me to go and it's nice that he supports it and I don't want to make him feel like the reason I don't go, since he wouldn't be happy with that.  

      Thank you so much for all your positive input. I wish you all the best. 

      Thanks, Maja

    • mike_51753
      mike_51753 maja1907

      Posted

      Hi Maja

      meant to type 68years of age also side effects of hormone injections are not to bad and can be managed main effects in my case are weight gain around mid drift , hot flushes these stopped after a while and tiredness but these are probably better than the alternative 

  • mike_51753
    mike_51753 maja1907

    Posted

    Hi Maja 

    was diagnosed with prostrate cancer a year + ago Gleason score 9 grade t4  psa 26 are 68 started on six monthly hormone injections plus casodex tablets for the last three months feel fine in myself go cycling and swimming two or three times a week and still work part time in most cases I believe prostrate cancer is slow to spread so a trip for March should be fine I know when first diagnosed most thoughts are negative but this soon passes and you look to the positive side and take each day as it comes hope this is of some help 

    • maja1907
      maja1907 mike_51753

      Posted

      Thank you very much, it really helps a lot and I'm so glad there are forums like this. I'm happy to hear that you're doing well and active, my dad would love to go back to work and really hope he will. You are so right, at the moment it's still such a shock and feels very unreal, but I see he's the same as before and he feels well. I wish you all the best and thanks again 
  • mosski
    mosski maja1907

    Posted

    Maja,

    No question you should proceed with your Europe trip -- and have all the fun in the world!

    PC is a slow progressing cancer and nothing dramatic is going to happen in the next month....or the month after that or after that.

    I suggest your dad take a deep breath; read tons on PC on REPUTABLE websites -- major hospitals and cancer orginizations both in the US and GB.  Best to be prepared and knowledgable when he meets with the doctors. I recommend he order the Prostate Cancer White Paper from Johns Hopkins Hospital.  It a 70-80 pageg book/magazine that is updated annually and VERY thorough and full of information!  I beleive you can get it on line, too.

    And absollutely do not jump at the first treatment offered.  There are so many factors to be considered and one course of action or another will not be the best for all men.  I suggest your dad get at least two (or three) medical opinions and that he definitely meet with an Oncologist.  This doctor will have no "skin in the game" and will give a less biased opinion than a surgeon or a radiologist.

    I was diagnosed last July and had treatment 5 months later (a radical prostatectomy in December).  I met with three surgeons and two medical teams (surgeon, medical oncologist and radiation oncologist) before deciding on RP.  Along that road I was informed that the cancer had spread to the seminal vesicles and it was suggested that I participate in a medical trial which would have put me through a chemical cocktail hormonal hell for six months.

    The second team I consulted with believed that my cancer had NOT spread outside the prostate and said I should in no way join the clinical trial.

    Pathology of my prostate after removal showed all cancer was contained in the gland and there was NO seminal vesicle invasion.

    Lesson? Do not be hasty and get two or more opinions. Your dad has more time than his spinning head tells him he has.

    Good luck and enjoy your trip!

    Moss (Vermont, USA)

    • maja1907
      maja1907 mosski

      Posted

      Hi Moss, thank you for that, that's a big help. I know also that the prognosis is good with PC, I think just the word cancer is very scary and makes me immediately frightened. I just met with my dad and he's doing good and keeping happy. Next week he will be further examined and will consider the options from then. I can't believe that you have had so many different answers with various doctors, that really shows that there is a very good reason for seeing more than one. Unfortunately here in Denmark the options are limited, so my dad is considering going to Germany for treatment since we hear a lot about the great options there. I have told him your story and he also can't believe that doctors can really be that un-professional and not be able to find the real results. My dads brother had prostate removal surgery with a psa of 5 and gleason of 6, so we're also having trouble trusting the hospitals here. 

      Thanks so much for your encouragement, it helps a lot. I wish you all the best. 

      Thanks, Maja

    • mosski
      mosski maja1907

      Posted

      Maja,

      Glad to hear things are calming down a bit.

      In the course of conferring with different doctors I had three different "readings" of my biopsy slides at three different hospitals.  All agreed that 8 of the 12 core samples showed some cancer -- first pathologist saw all at Gleason score 6 with one 7 (4+3); second saw the same, but interpreted the 7 as a 3+4; third saw it as all 6's (no 7).

      Then I had an MRI with endo-rectal coil.  First radiologist saw seminal vesicle invasion (that's why I was "offered" admission into a clinical trial); second radiologist did not see any invasion.

      My PSA in ranged from 7-9.  The team who said, "You are not high risk. Do NOT participate in the clinical trial," also said that if there was seminal vesicle invasion my PSA would most likely have been higher.

      The final pathology on the removed prostate showed cancer throughout 30% of the gland and just a tiny portion was a 7 (4+3).

      I would not say that the doctors were unprofessional. In reading results of tests there is some room for interpretation.  I might say that some doctors are cautious  -- in that they "error" on the side of seeing the cancer as more aggressive or advanced. Others error on the side of seeing the cancer as less advanced. One approach may lead to unneccessary treatment (along with its side effects); the other may more likely lead to the patient going the Active Surveillance route.

      Sorry to go on and on.  Hope this helps!

      Moss

  • alfred5
    alfred5 maja1907

    Posted

    Hello, in my opinion with a gleason of 7 he may not need treatment yet anyway. Depending whether it was 4+3 or 3+4. The 4 first means it will need treating sooner. My other half had a gleason of 3+3 as was encouraged to leave it and just watch it. But 6 months on we decided to have treatment, he had brachytherapy, he was 57 in full time work as a farmer and we have 3 young children. He did not need hormone treatment, he took a few days off with paid help when he had the brachy done but otherwise continued to work as normal. He has suffered from bad side effects but not enough to stop him working. 

    I would go away if I were you as I think you'll find there is no urgent rush for treatment. Had he had a gleason of 9 or 10 then it would be more urgent. They will probably do more tests over the next few months anyway like an MRI, bone scan etc before giving him a choice of treatment. Good luck.

    • maja1907
      maja1907 alfred5

      Posted

      Hi and thanks so much for your reply. We just found out yesterday by looking at his web-journal that the gleason is 3+4 which is good I guess and I just had tea with my dad and he is doing well. On Thursday he is going for the scan and by that time I have left. It's nice to know that you've considered the different treatments and not jumped into anything, I'm sure that's the way to go and sounds like you picked the right treatment. Thanks so much for your support and I wish all the best for you and your partner. Thanks, Maja 
  • Dudley71081
    Dudley71081 maja1907

    Posted

    Hello Maja,

    Your concerns are understandable,  but please try to reign in the worry.  Your Dad had PC last year,  the year before that and probably for many years prior.  So he is going to go along just fine from now on,  but eventually with a treated condition ( depending upon what he chooses ) as opposed to one that otherwise would have remained untreated.  

    The equation is that with treatment his worthwhile life will in all probability be significantly extended.  And that is true for the majority of us.  Nothing is for nothing though and as  with most interventions,  there are side effects.

    Once the initial shock subsides you will settle down for the long haul as your Dad adjusts to the new status quo and selects, hopefully with his Medical Team's full clinical awareness and backing,  whatever treatment modalities best appeal to him.

     

    So yes, go on your trip and don't over dramatise the situation by phoning home every day.  Your Dad will need to deal with his new situation (  i. e. awareness of a most likely,  long standing condition ) in a calm manner.  It would seem undoubtedly, that you are an integral part of a loving environment and this will be a great comfort to him and frankly,  as good as it gets.

    Best Wishes

    Dudley

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