Dad's diagnisis

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Barry's daughter
Regular Member


Date Joined Nov 2010
Total Posts : 34
   Posted 11/6/2010 4:06 AM (GMT -6)   
Hello everyone,
I'm new to this forum and desperatley need some help and advice. My dad has just this week been diagnosed with prostate cancer (although has to go for a biopsy to confirm on thurs) as I understand this is just a formality. As most of you will understand our lives have been turned upside down. It was picked up during scans and tests as dad was due to have hip replacement opp as he also suffers from osteogenisis imperfecta (brittle bone disease) since childhood. Docs have said it has spread outdide the prostate and is 'peppered' in his bone, some in adrenal gland and small amount in his liver.
We went to see uroligst yesterday and he was started in HT injections there and then (2 in his tummy). The nurses were absolutely lovely and done a fantastic job to comfort and keep us positive and inform us that lots can be done to help.
Looking on the internet can be both a good and bad thing as sometimes it's great to find info and othertimes it's so negative. We came away from the hospital feeling optomistic as having no previous info or warning with it, I think we were all expecting the worst. Having looked on the net last night I can only find info that says HT only works for a couple of years before it stops responding. I just wanted some help and advice, and if at all possible some positive stories. I cant bear the thought of loosing my dad as he is just the most wonderful man and the center of our family. I would be so grateful of any feedback.
 
Thanks
Lisa x

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4835
   Posted 11/6/2010 4:44 AM (GMT -6)   
Welcome to the site and sorry you have to be here.
 
There is a ton of reading material in two of the links at the top of this forum.
 
Prostate Cancer: The Really Useful List made by HW people for HW people.
 
Prostate Cancer Resources and Direct Links to Sites, Videos, Books...etc.

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 11/6/2010 6:14 AM (GMT -6)   
Lisa, I'm sorry you are here but glad you found us.

I just read that Michael Milliken, the wall street "financier" was diagnosed with advanced PC 17 years ago and given 12-18 months to live.

In all of life, we are nothing without hope.
52 yr old, newly diagnosed. PSA 3.5, Gleason 6 with 3 of 4 top nodes (0%;1%;10%;1%) cancerous. Bottom 2 floors are clean.
Da Vinci surgery scheduled for 12/30/10
Hoping that the robot does not become "self-aware" (we all are old enough to get this reference)

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/6/2010 7:45 AM (GMT -6)   
Welcome Lisa (and Dad: I assume Dad=Barry)
Sorry you've had this news.

How old is you dad by the way?

Your dad's case is one of the unusual ones where the PCa diagnosis has been made before a biopsy has been done (due to it being advanced and thus detectable outside the prostate.)

The biopsy will however tell you what his Gleason score is. which is basically an indication of how aggressive the cancer cells are, but they must be quite aggressive to have got out.

With the cancer where it is HT is the best option at this stage. HT can slow things down a lot, but I've not had it myself so I will leave it to others to give you better info and advice.

All the best.

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/6/2010 9:15 AM (GMT -6)   
Sounds like you got Zoladex for HT therapy, proper protocol should have been casodex prior to LHRH type drugs like Zoladex, Lupron, Precisis, Eligard, etc. Did he experience any pains after receiving this injection, like from bone areas or nausea and such??? My uro-doc did the same thing in error, which is very common and supposedly they down play 'flare' as no big deal...Dr. Strum and other say way differently and with reasons. Probably a good idea to learn all you can about various hormone therapies and what are options and choices to consider. You should find a PCa oncologists to treat you going forward, the uro-doc only knows the basics in this arena and is not schooled enough, it is like going to shade tree mechanic to fix your Ferrari. It varies alot as to future prognosis's, so keep hope alive and well.

www.yananow.net  
www.hrpca.org     (advanced treatments for cases like yours)
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 11/6/2010 8:18:57 AM (GMT-6)


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3788
   Posted 11/6/2010 10:24 AM (GMT -6)   
Shortly, you will have a PSA number and a Gleason score..These two readings will play an important part in determining your Dad's future treatment..In the meantime, pick up a couple of books that explain prostate cancer and develop a knowledge base to work from..

Dr. Walsh's Guide is a good one...best of luck to you and your Dad...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
age 61: 5.2
age 64: 7.5, DRE "Abnormal"
age 65: 8.5, " normal", biopsy, 12 core, negative...
age 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
age 67 4.5 DRE "normal"
age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9

medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 11/6/2010 11:34 AM (GMT -6)   
Lisa - very sorry to hear this news.  My dad died of prostate cancer, so I guess maybe I have some insight into what you are going through.  Don't be too focused on the "hormone treatments only work for a few years" stuff.  Results vary widely.  There are men who live a long time with hormone treatments and end up dying in old age from something else.  And these days there are also various "second line" treatments that can be used if and when the initial treatments fail.  The key here is to get a really excellent medical oncologist who specializes in prostate cancer.  There are fewer of these people than you might expect, but they are out there.  The real experts know about all the treatment options, the right tests to do to evaluate the disease, etc.   If you tell us where you are located, someone here can recommend an oncologist to consult with.  Best wishes, Medved

Barry's daughter
Regular Member


Date Joined Nov 2010
Total Posts : 34
   Posted 11/7/2010 3:20 AM (GMT -6)   
Thanks for advice,
Dad is 62 and is currently well with no apparent symptoms other than pain from his hip which was due to be replaced next month. I read somewhere that tablets to stop a 'flare up' are sometimes offered and that worried me a lot, although there is nothing that we can do about tha now.
His consultant is Dr. Chadwick at James Cook though we were told we would not see him but one of his team (a young lady called Jenny) who asked more questions about his brittle bones? It's so hard to know if you have the best consultant. I don't know what to do next for the best. I will fight tooth and nail to make sure he has the best treatment but unsure of what or who I should be aiming this at.
 
so far he has been ok after injections, slight soreness in tummy but otherwise fine
 
Thanks so much everyone
Lisa

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2216
   Posted 11/7/2010 3:42 AM (GMT -6)   
Lisa,
I was worried about the idea of you being online at 2.20 am, (where I am in Holland it's 9.30am local time), but then Google told me about a surgeon called David Chadwick at the James Cook in Middlesbrough commenting about a team from his hospital climbing Kilimanjaro to help raise money to buy a (da Vinci) keyhole machine, so I guess that tells me roughly where you are and that it's breakfast time on Sunday morning for you too. (I'm in Holland now, but originally from the West Country, so I'm afraid Teeside is like another country for me!)

I thought I'd chip in with the above observation in case you want some advice/help from closer to home as there are in fact a few folk at Healing Well from the UK, so you may be able to tap into them for help relating to UK methods, the NHS etc. (Though despite its US nature I still find that HW is the best place I've found on line.)

Alf

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1406
   Posted 11/7/2010 4:28 AM (GMT -6)   
Lisa, I am so sorry you have a need to be on this forum, but I can tell you it is one of the best!  It is obvious the love and closeness you share with your Dad.  I hope you find the advice given to be helpful, and I wish you the best in finding the additional information you need.
 
Wishing your Dad the very best!
 
Aimzee
 
Husband Ron, age 63
4/1/10 PSA 5.5 Prostate size = 50 cc.
Biopsy on 4/20/10 12 samples... Adenocarcinoma: 3 positive on right side, one core left base (5% ` 0.5 mm) - two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Bone Scan/CT Negative (2 lesions on liver)
8/18/10 - Da Vinci Prostatectomy
Post Op: Gleason 7 (3+4)
Negative surgical margins and lymph nodes
Both nerve bundles spared
Catheter - 13 days
ED / Day time incontinence.
Post Surgery PSA 8 weeks - .01
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