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New diagnosis of PC

Posted , 5 users are following.

PJC2
PJC2

My husband was just diagnosed with PC about a week or so ago. His PSA has been running about 17.9. He had a 12 core biopsy, all positive, 5 were Gleason score 6, the rest were 7 (one was 4+3) 10 had PIN. He is 59 years old and overweight. He has been trying to loose weight unsuccessfully to date.

He is going in for a bone scan and CT scan on Wednesday. The urologist did not think surgery would be the best route for him and advised hormone therapy for 3 months and then radiation therapy, but we are awaiting the results from the scans and then meeting with the Radiologist Oncologist.

I have been searching the net since I found about his PC trying to learn as much as possible and just stumbled upon your forum. This looked like a place where I could share and learn as we start our fight against PC.

Additionally, I know this forum is in the UK, we're in the US, I hope you all don't mind ; )

1 like, 15 replies

15 Replies

  • Kombi_Cruiser
    Kombi_Cruiser PJC2

    Posted

    Welcome PJC2...

    Sounds something like my results about two and a ahlf years ago...

    PSa was around 18 - 12 core biopsy - minimum 9 @ 95% - Gleeson 4 + 5...

    MRI & Bone Scan were both clear... Not too sure about your Gleeson Score references as the normally add up to a maximum of 10 being a 5 + 5...

    ​Mine was a 5 + 4 = 9... My advise was surgery followed by radiation therapy... All Good... 

  • cliff77640
    cliff77640 PJC2

    Posted

    Yes, and I am in New zealand. It is helpful to hear different views and experineces no matter where in the World.
  • georgeGG
    georgeGG PJC2

    Posted

    Dear PJC,

    You are very welcome. I have a very good friend on the forum from the States. 

    I am very sorry to learn that your husband has this dreadful disease. I know the lives of both of you will have been turned upside down. Do you have children and grandchildren? They will be distressed too. I know how my diagnosis affected my family.

    From what you have written the PCa has been found in time to give you a real hope of a cure. Really. If your husband gets some weight off his chances of a cure will be even better. Lower weight will also help with side effects. He is on hormone therapy. Help him to embrace that gladly. The side effects are not nice but it is a significant therapy especially if it is extended concurrently with his radiotherapy and afterwards for at least two months. My hormone therapy is for up to three years maximum. There is an important recent study on that. I found after 3 months on hormone therapy I and my side effects settled down so I felt quite normal and comfortable. 

    I am so glad to read that you are fighting this PCa along with your husband. My wife immediately had me on a strict vegan diet - no animal products, no dairy, Where possible we buy organic food. Amazingly in a week I was enjoying it and not craving meat. I eat a little chicken, fish and eggs now to help repair cell damage as I finished my radiotherapy in December. I really prefer the vegan part of my diet. I was at the high end of normal weight and lost 22 pounds without effort after starting the vegan diet. My new weight has been stable at the lower end of normal for almost three months.

    Please have a look at my profile. A click on my picture will take you to it. Please also put the dates, weight , diagnosis and treatment on your profile. Those details are such a help when we try to answer your questios. 

    I am so glad you found this forum. It has been such a help to me from first diagnosis and from time to time when PCa got me down. My friends here have been wonderfully supportive, comforting and infimative. There are also inteesting discussions in the Chatroom Group that take your mind off your troubles.

    Wishing you and your husband a very good outcome.

    George

  • PJC2
    PJC2

    Posted

    Thank you all so much for the warm welcome!

    Kombi, sorry for the confusion. I am still new to PCa terminology. To clarify, his overall Gleason score was 6/7. He had 12 biopsies all positive with either 6 or 7. His biopsies that were 7 all were (3 + 4) except for one which was (4 + 3). As I understand it, a 4 + 3 is far worse than a 3 + 4.

    George, thank you for sharing your experiences with me. I copied your reply to sent it off to my husband. He is a real meat and potatoes kind of guy. He likes his veggies, but smoothered in dressing and butter! I also found this website _________ which supports your post. I am hoping by his reading these, it will help him make the changes that need to be made.

    We have 3 sons 23, 21, and 18, (he is step-dad) we've been married now almost 10 years.

    Truthfully, I am most concerned about the hormone therapy as I have read so many things that state that it really changes a man's personality and moods. I have read that some wives said it was like living with someone entirely different, like a total stranger. He is naturally a very passionate/emotional man. He wears everything on his sleeve and has no problems "expressing himself" ... lol I am the calm, logical and patient one. I am worried what the hormone therapy will do to him.

    Emis Moderator comment: I have removed the link 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

    • georgeGG
      georgeGG PJC2

      Posted

      As to hormone therapy, some men find it very difficult and some wives too. The ones who find it easier are less likely to feel the need to communicate their experiences. I have found the changes in me interesting. I do not find that family and friends have found I am any the less the person they knew before HT. Some of my characteristics have been modified or accentualted and not only for the worse. Once I settled down almost exactly at three months, it was a clear transition, I became quite comfirtable and the troublesome side effect of sudden and brief emotional outbursts have not been repeated even in similar circumstances. The benefits of HT as I described very heavily outwiegh any disadvantages I have suffered.

      With best wishes to you both

      George

  • cliff77640
    cliff77640 PJC2

    Posted

    I haven't noticed much diference in my personalaity. The greatest problem is coping with hot flushes, an average of about two per hour. I stand in front of a desk fan and run the air down my neck and chest to dry the sweat. A little battery hand held fan is handy in bed or to take out anywhere.
    • georgeGG
      georgeGG cliff77640

      Posted

      I found Tincture of Sage very effective. At 5 months of HT I had to reduce the dose as it was making me feel cold. Two days ago I stoped and so far so have the flushes. 

      I found sage pills no use at all. PM me if you want to know where on the web I got the Tincture of Sage.

    • Kombi_Cruiser
      Kombi_Cruiser georgeGG

      Posted

      GeorgeGG you say you've stopped two days ago so what's next...???

       

    • Kombi_Cruiser
      Kombi_Cruiser

      Posted

      Sorry hope you don't mind as I've not long come from a follow up appointment with one of the three doctors I now have regular appointments with...more non-committal answers as expected... an acknowledgement that three years is the average time on Zoladex...also a reference to the aggressiveness of my EWI... I hate this space... The presence of the unknown seems to have put me in a very unfamiliar headspace... 
    • georgeGG
      georgeGG Kombi_Cruiser

      Posted

      I think I have settled down to the new hormone levels and my temperature is stable. Now day three and temperature steady and comfortable. I am keeping the unused Tincture in case, but so far so good. I started HT end of July 2014. Still on three monthly injections.
    • Kombi_Cruiser
      Kombi_Cruiser georgeGG

      Posted

      I often think about the gambles in life's journey to date as I had my first and only one so far on Melbourne Cup Day November 4th 2014... You've got a few months start on me so I'll see how things go... I'll probably surpass you as as always us youngsters always seem to be in a hurry and I can tell you that that is my gravest reality...I look forward to the journey...
    • georgeGG
      georgeGG Kombi_Cruiser

      Posted

      Oh yes, Kombi Cruiser, I am no gambler but with PCa to freeze is painfully deadly. I found that the only sensible conservative thing to do was to take a gamble. And such a gamble too.

      So forced to it, I wanted the the most agressive treatment I could get. Preparatory HT then radiotherapy IMRT with total theraputic dose of 74 Gy and with concurrent HT plus HT afterwards for the maximum, currently three years in all.

      A recent study shows that is a good choice. But I do not like gambling, Still the possibility, I may even say the probability of a cure is worth the hazard of many side effects.

  • PJC2
    PJC2

    Posted

    Hello again,

    DH went for his bone scan and CT scan yesterday. We have an appointment to see the Chief of the Urology Department on February 12th, which is a really long time to wait to hear results. So DH asked to have a copy of the reports to us, which should arrive in 2-3 business days. I work as a medical editor so I should be able to read the results even though we still will not know what the recommended therapy will be until our appointment.

    DH really fought against making any significant dietary changes, I did try. I made 2 vegan dinners which the whole family ate and loved, we have my father and 2 teenagers living with us so that says a lot I think, but he basically said that he values his quality of life and his food choices are high on that list. He was very emotional about the entire issue, so going vegan is out. He won't give up his milk or dairy products, wants to continue to eat meat, so the best I can do is load him up with as many veggies as I can.

    • georgeGG
      georgeGG PJC2

      Posted

      Part of being human is we weight things up and make our choices. I wish you all well.
  • ken47739
    ken47739 PJC2

    Posted

    Hi

    i hope you are finding the forum helpful.

    I was diagnosed in Nov 2010 and was given the option of radical surgery, with the possibility of radiotherapy and hormone treatment or radical radiotherapy followed by possible hormone treatment.  I have been helped in all my decisions, not only by a brilliant clinical team but also by my son who is a Senior Anaesthetic Reg in a London Teaching Hospital.  I really went for the surgery option, what I called the bucket solution, I really wanted the disease out of my body.  Following Surgery my PSA started to rise and I underwent a course of radiotherapy and 2 years of Zoladex implants.  Since the radiotherapy my PSA has been undetectable.  So far all good news.

    yes there are side effects, hot flushes and virtual impotence, but the alternative was death, probably during 2012/13. I see it as a no brainer decision.

    As a matter of interest my wife and I saw The Theory of Everything yesterday.  If you think we have problems then watching this film makes you feel incredibly grateful for everything we still have.

    I hope this might help you and wish you well for the future, because you still have one.

    Ken

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