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Posted 3/23/2010 2:19 PM (GMT 0)
 

Hello,

I stumbled across this forum after endless net research since my dad was diagnosed with PC two weeks ago. I am not sure if I have fully got my head around it all the C word terrifies me - we all know someone affected but I never fully understand the fear associated with it until now.

My dad is 58, I am on the other side of the country (soon to move closer to him) and I dont have all the details as both he and mum are reluctant to 'worry' the kids. I do know that is stage 2, gleason of 7 and localised, no spreading to bone, lymph nodes or seminal vessels. He is most likely going to have the robotic radical prostatectomy.

I have read many of your posts on here and along with my dad, think you are all incredibly brave people who have already comforted me just by posting your personal stories. I don;t really know specifically what I am after here - support and insight i guess. I just always imagined my dad old and grey not faced with this so young. I am also expecting my first child and the thought of not having a grandfather for him makes me feel ill.

I guess I'd also like to know (from those of a similar stage PC) what to expect over the coming months. Thank you in advance

Kylie smile

Posted 3/23/2010 2:26 PM (GMT 0)

Welcome to the site. Glad you found us and sorry you have to be here.

Get pops to open up to you cause knowledge is power...Meaning the more they tell you the less you have to guess and worry.

Good luck on the birth of your child. We'll want to see picturestongue

Posted 3/23/2010 2:38 PM (GMT 0)
Welcome to Healing Well, sorry you have to be here, but glad you came. You need to see if you can get Dad to join us, especially if he is in doubt as to his options or needs some reassurance. If not, ask away, we're all a bunch of 'know it all's' who usually have an opinion about everything, correct or not... smilewinkgrin
Posted 3/23/2010 2:41 PM (GMT 0)
Kylie - wishing you all the best for you ( and baby to be) and your Dad.
We are glad this site has been of comfort to you. This is a great resource site too - check out the links at the top of the page and the forum FAQ's -
Once again, all the best. (Maybe have Dad become a member too?)
hugs
BRONSON
Posted 3/23/2010 3:02 PM (GMT 0)
Kylie,
Sorry that you have to be here but glad you found our family of PCa patients. Your father's biopsy is fairly common and he certainly has plenty of time to seek different opinions and treatment options. I had the robotic surgery myself. I was upgraded to stage because of extra prostatic extension. If your Dad is set on having the robotic surgery, make sure that the doctor performing the surgery is experienced. Normally that means that he or she has done more than 500 such surgeries.
Posted 3/23/2010 3:30 PM (GMT 0)
kylie, thanks for stepping in and joining us here at HW Prostate Cancer. We welcome you and your dad with open arms. We have several brave daughters like you, that intervene on behalf of their dads. I have my own Girly Girl that watches out for her dad too.

At some point, it would be useful to post all the stats you can find on his, in this case, I am assuming from a prostate cancer biopsy he had recently.

we are here to help, to listen, to learn, to teach, to support, whatever you need. and if you or your dad need to vent, we encourage that too, gets it out in the open and out of your mind/heart. its good therapy actually.

please keep us posted, we will do whatever it takes to help you and him get through this.

david in sc
Posted 3/23/2010 3:32 PM (GMT 0)
Kylie,
I am sorry to hear about your father but there is a lot of hope, and my best guess is that he will be around for a few more grandchildren. I was 59 when diagnosed and 61 at this time, with three grandchildren and shoot my parents are still alive. Keep us posted and hope that you will feel free to ask any questions that come to mind. Whatever you find joy in doing, do more of that during this stressful time.
Michael
Posted 3/23/2010 3:34 PM (GMT 0)
Kylie sounds like you are the shinning star for helping your dad...some guys can't even be lead to drink water when they are thirsty...not saying he is that way.
It is not as worrisome as you are first thought even hearing the word 'cancer', most cases of prostate cancer are slower to progress and most have even decent control even with way-way worse  and even with uncureable and nasty stats, compared to his= (i.e. this guy ME, been 8 yrs. and still doing well with  very omnious start)..so it is possible to do way better than you likely believe and his numbers as far as we can guess herein,are towards good news versions of PCa, if you can understand that thinking.
You and he have time to study this, it probably took 10 yrs. for PCa to get to this stage, is mentioned by others...maybe very true..usually very slow growing.

Been around these types of forums for 8 yrs., seen alot of cases and information, Do Not Panic...knowledge is power...get fast track knowledge from these sources as a great start, then inform dad of the mulitple choices of possible treatments and then go see a few different types of docs that hopefully are specialists in PCa treatments get their opinoin(s) and take it further, thereafter.  I actually got 8 opinions (my case was not typical and very scary), good news, insurance paid for it all, even when I fired a doc or two..like I said my case is not anywhere near typical scenario., but a few opinions for something this serious is smart. If you can show dad this stuff and get him to look at it...way better: You can look at patients histories and how they are doing later at: www.yananow.net and get a wonderful education there ASAP, so check it out.

Book: A Primer on Prostate Cancer (Dr. Strum), maybe some others, Dr. Patrick Walsh (surgery) has a good book too
Web lessons 101 and on: www.prostate-help.org   www.yananow.net   www.hypertext.org   www.ustoo.org   (support groups and info)

Now you go....girl.. get dad's..education...is most helpful and conquers alot of fears, too.

Tell dad he has brothers at H.W. that actually give a darn and will answer about anything.

Posted 3/23/2010 4:20 PM (GMT 0)
Kylie, I got diagnosed at age 43, same stage and Gleason. I had the robotic surgery. Things have turned out fine, although I had to followup with radiation. I was worried at the time of diagnosis because I had gotten married not many years before, and had a family including a 3 year old. (Now I'm more worried about paying for his college than I am living to see him go!)

If it helps ease your mind, the five year survival rate for prostate cancer is practically 100%, and the 10 year survival rate is 91%. So, if we knew nothing else than that your father was newly diagnosed, we could say that the overall odds for him being around for his grandkid(s) are excellent. The medical history you have provided so far leads me to think that your dad's prognosis is very good. No guarantees, of course, but that's life.

There's no reason to think your dad won't sail through treatment, find out his cancer was indeed localized, and go back to enjoying life as before.

Best wishes.
Posted 3/23/2010 4:27 PM (GMT 0)
Wow - I had some dinner and came back to so many lovely replies already - thankyou very much. As you have said, knowledge is power, and I guess being a teacher it is a way I can understand and cope with the situation. As my folks are so far away the specifics are hard to get right now but I will try to get my mum to scan the test results through.

Dad is a typical Aussie farmer - salt of the earth kind of man who has never turned on a computer, however is a talker and has spoken to a couple of men with PC post treatments to get opinions. But right now I am the family member who is on the net researching her butt off.

I guess I'm also trying to see his point of view.....from mine, the decision is a selfish one - surgery to remove it so that I have my dad around and piece of mind (well temporarily) but I know there are side effects that will affect his lifestyle. I joked with dad that he doesnt need his man bits anymore as they have done their time butI know that is selfish.

I will definitely continue to read success stories and look up the links you sent me, and ask lots of questions along the way.

Cheers :)
Posted 3/23/2010 4:55 PM (GMT 0)
Hi Kylie,

As we always say to new folk, sorry you have to be here, but glad you found us.

I want to echo what others have said: Knowledge is power. To that end I strongly urge you to have your father have his slides reread by a second pathologist -- one who does lots of prostate tissue and is well respected. Pathology is an art, as well as a science. The pathology report is the starting gate to a cure. If the two reads are different you want to go with the worst possible, and plan from there. Doesn't mean the worst possible is the right one, just means you've got the bases covered.

Please do keep in touch and report in.

Remember. There are a number of things threatening your dad's life. Heart attack, being hit by a bus, choking on oysters, Lord knows what all. His PCa may be one of them, as it is for all of us here, but chances are he's going to be treated, and cured, in the next year. What you probably really need to worry about are those oysters! And, please understand, I don't mean to make light of your dad's, or anyone's prostate cancer, but I do want you to put it into perspective which is difficult to do when you first hear the "C" word.

Sheldon AKA Sleepless

P.S. Say "Hi" to Crocodile Dundee for me if you bump into him. And, Dr. Noel Friesn too if he happens to be on the case. (I'm a Canadian, and once in New York a man said to me, "Canadian --- you must know, Doug Arnett then." Well, that's my cousin who lives 1,000 miles from me in a different city, so ..... you never know. But, I do know Australia is an awful huge place with something like 25M citizens.)
Posted 3/23/2010 5:02 PM (GMT 0)
kylie, we do have some good Aussie brothers here too, hopefully they will come along and greet you, you need to meet my good friend Billy Mac, he can't help being upside down, like you, but he's a great guy. There are others too, and from New Zealand as well.
Posted 3/23/2010 6:44 PM (GMT 0)
Welcome to you (and Dad)

I hope you find the support, info, help and assistance you want and need.

Alfred
Posted 3/23/2010 6:59 PM (GMT 0)
Hi Kylie,
I guessed that you are Ausie when you said Mum instead of Mom. I lived in Sydney for 2 years and still visit friends there annually. I wish the best for your Dad.
Posted 3/23/2010 8:57 PM (GMT 0)
Hi Kylie,

We are in NSW Australia,  and 3 and a bit years ago I felt a similiar terror and panic when my husband was diagnosed with Pca. However now 3 years down the track I anticipate my husband being around for a long time. Our son was just 6 yrs old at the time - He has just turned 10 now and made the football team. My husband also has an older son who in the last 3 years has given him 2 beautiful little grandbabies. All this has happened since his diagnosis. This is a wonderful site and as you get more information you and your dad will start to recover emotionally and get your heads around it all somehow. My husband had a Gleeson 7 and all contained - similiar starting results to your dad, however my hubby was 10 years younger. Your dad is still in the prime of life Kylie,  so this is all positive in terms of his potential for successful treatment and recovery, or whatever he decides to do, or not do, in the future. I would definitely give up the jokes though. He probably would not want to involve you in the intimate recovery parts anyway - but take it from me, you may eat your words there, as my husband had no lasting side effects, and your dad may not either but second and third opinions are always an option if you have any questions there. If he does have side effects, you'll regret making light of it, so I'd not go there personally - I'm sure you know what I mean - if he shares it elsewhere he will have to cope with lots of inappropriate Aussie humour at the best of times  (sorry Humor I mean - my friend TC Las Vegas  another Mod -  can't spell our way!). For that reason my husband told not a soul in his immediate environment until he was fully recovered.

If you want to flick me an email,  I am happy to email you the Australian site we found helpful to start our own research and get our heads around it. If you are a teacher get some files ready (we have 6) to store and compile all or any new information you can get for your dad.  

Also (just a girl to girl thing) -  you really need to work extra hard on keeping calm and positive - for your baby and your dad. That's a big load to carry but it can be done. I remember one of our wonderful moderators "Doting daughter" was also here first when expecting her first child and also posting in regards to her dad, and she is now a mod! Keep up your own nutrition and calming exercise, positive thinking etc..I am sure you know all this.

Keep posting as you get more info and the guys here will come running to assist as you have already seen. Good luck Kylie. Sorry this is a bit of a rant. Kind regards, Lana

Posted 3/23/2010 9:25 PM (GMT 0)
Kylie,

Much of the PC world revolves around statistics. Statisically, your dad has a long life ahead, has a better than even chance of having no side effects, or one of the two main surgical side effects.

The surgery has very high statisctical chances of a complete cure ( 90 % or so ).

So be comforted if you that Grandpa will be around to see your new one get married.

That said, it can be an unpredicitable disease as well. There are statistical chances that he may need other treatments after the surgery. So, according to the nomograms (which you can find on various sites such as Johns Hopkins, give your dad a highly favorable statistical chance of many more years on the farm, spoiling his grandkids.

Welcome to our site, and good luck. be sure and tell your dad that we are pulling for him.
Posted 3/23/2010 11:40 PM (GMT 0)
PS. Excuse me Kylie for butting in with a comment but Hey Good life - I just noticed that your next post will be your 1,000!! Well done to you. Hope someone else noticed when you do it next. All the very best, Lana. PS.
Posted 3/24/2010 12:09 AM (GMT 0)
Kylie-
Your story is all too familiar. I too was pregnant (6 months) when my father was diagnosed. He is also Australian, but now lives in the States.
It seems like yesterday. My father had similar pre-op stats and unfortunately, our PC road has been a little longer than we had hoped for, but even so, my father is doing well and it has been three years since dx. My son was such a bright spot in such a depressing time in our family and I am sure your baby will be the same. I know I questioned the timing of things, but truly the timing could not have been better. I didn't even want to have a baby shower, but my mom insisted and I think she needed it more than I did. Regardless, it is important to remember to celebrate the joys in life, even if you don't feel like it. Your family needs it. Please keep us posted and let us know how we can continue to help as your journey progresses. All the best to you, your dad and that baby!!!
Posted 3/24/2010 1:08 AM (GMT 0)
Kylie as the say glad you found us, but also sorry you are here. But there is a world of information found on this site and a lot of experinced people that have gone thru alot of stuff fighting this diease plus people here are glad to help if they can. Take care of yourself with the baby thats one of god gifts I have a great grand daughter, the wife and I keep her 3 to 4 days a week she is17 months old but I recently ha to go back to work but I miss her more than I thought. The wife is still enjoying her.I talk to much.
DEERHUNTER
Posted 3/24/2010 1:13 AM (GMT 0)
Thank you Lana, I didn't notice it myself. I do enjoy HW and all of my friends here !
Posted 3/25/2010 3:17 AM (GMT 0)

Understand that of all the cancers to have, this is probably one of the most, if not the most, curable.  The "C" word is scary but it is survivable.  I had colon cancer 13 years ago which was cured due to early detection. I expect that my prostate troubles, 6 weeks post robotic surgery, are behind me. (The doctors assure me that the two incidents are unrelated).

Expect your dad to be around for a long time.

Posted 4/8/2010 6:45 AM (GMT 0)
Hello again,
I haven't had a chance to post for a while - and thank people again for your immediate support as I spent 2 weeks in Malaysia on holiday which I had planned last year - before getting pregnant and before my dad was diagnosed. I felt a bit guilty going, but for at least a little while I could put the overwhelming worry about cancer on the backburner.....just!

My folks seem to be doing ok - getting on with life, busy as they both still work and are too young for retirement and they have pretty much decided on the robotic surgery in Melbourne - the only thing holding up booking it in now is waiting on the insurance money to come through as it is a lot more expensive than the open surgery.

I do have a question - what comes next after surgery? Do they then test the removed material and can the cancer be restaged. Dad is T2 - clear bone and CT scan and no spreading to the lymph nodes and seminal vessels. Can this information be updated after the operation?

Thanks very much :)
Kylie
Posted 4/8/2010 8:11 AM (GMT 0)
Hello Kylie,
Hello OZ, (I'm a Brit with OZ family in Melbourne, and my wife used to live in SA)

Yes the tissue removed during the operation gets a thorough examination under the microscopes at the pathology lab.

The biopsy results can obviously only be based on what was in the samples/cores removed. After the op the whole gland can be examined, plus things like the seminal vesicles which get removed along with it. (sometimes some lymph nodes get removed too)

Updating is not really the right word, if is more about confirming the original info, but this detailed pathology is really useful though as it is gives a much clearer picture, and the key is to ask the doctor to explain exactly what they found where. My doctor did this by taking an illustration of the bits in question that was almost life size and then drawing on it with a pen to show me exactly where the tumours were and how big they were. The total amount, location and grade of the tumour along with PSA levels before the op helps the docs work out what is going on.

But yes, with everything there to examine after the op something may well be found that was missed at the biopsy, (as in my case where they found some Gleason 4 and found that the PCa had "escaped" into the seminal vesicles) but this sort of upgrading is not always the case. (I was actually strangely reassured by being upgraded, as after the biopsy I had been wondering and worrying if they had really found out everything)

Don't worry about enjoying a holiday. I want my family to do more than just worry about me all the time, and I'm sure your dad feels the same.
And enjoy being pregnant.

Alf
Posted 4/8/2010 8:28 AM (GMT 0)
Thanks Alf :)
I'm at work right now...naughty! however today my positivity has lapsed and the reality of dad's journey ahead has hit. I guess I was a bit naive in thinking that they can whip the cancer out then hey presto he is cured and life is back to normal again but I know that the journey is just beginning.

I lived in the UK back in 2001, working in a lovely boarding school in sleepy Suffolk...great memories there. Funnily enough I saw a glimpse of old Coronation Street on telly last night and had a missing pank for blighty!

On the pregnancy front...I had an ultrasound recently and found out it is a boy - Dad was the first person I called. I guess the only positive thing about this experience is that you tend to focus more on making memories and havign those significant moments really count....
Posted 4/8/2010 11:36 AM (GMT 0)
Kylie
Hey. It's not being naive to think that whipping out PCa can cure it. For many men the removal of the prostate is indeed enough to do what amounts to curing the cancer, in as much as this cancer can be cured. The aim when they operated on me was that it would be curative. And even if, like me the op doesn't do the business 100%, then radiation is available to have a second bash.

(If I go to the beach here, about 3km away and look west then that's Suffolk, at least it would be if you could see that far, trouble is there's about a hundred miles of the grey cold North Sea in between. My wife has family in Suffolk so been there a bit!) Were you a pupil or teacher back in 2001? They never had female Australian teachers when I was at boarding school in the West Country in the 60s and 70s! We never even had female teachers, or girls come to that.

All the best to your dad.
Alf
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