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Welcome Keith -- New Member Ksargent

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Prostate Cancer
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Posted 7/31/2013 9:13 PM (GMT 0)
Found a first post from a new member. Starting a new thread for him so folks can say hello.

ksargent said...
I'm a new member, too, unfortunately. My surgery had been scheduled for Monday, July 29, but last week they confirmed the cancer had spread to at least one lymph node, so the surgery was canceled and I started Bicalutamide last week. Shots (probably Lupron) will start next week. In two months radiation will begin and go on for another two months. Hormone therapy may continue for several years.

At 48, my PSA was 4.2, but I didn't follow up. Who takes an umbrella when the chance of rain is less than 1%? At 50 my PSA was 21, MRI targeted biopsy with 18 cores confirmed 3 lesions with cancer, Gleason score 8. Fortunately all scans showed it wasn't in my bones. I'm being treated at NIH and part of several studies and hope to enroll in more.

I want to be optimistic, but it's difficult. I'm an Eeyore, and many of the members here are older without lymph node involvement. But I don't want to spend any time being miserable. It serves no purpose. I'd like to hear some uplifting stories.

Keith

Welcome to the forum, Keith. Sorry you need to be here but glad you found us.
Posted 7/31/2013 9:35 PM (GMT 0)
Hi Keith...I mistakenly posted this on the other thread, so I'm copying and pasting it again here.

I'm so sorry to hear your news and for the fact that you have to be here. But given the cards you've been dealt, this is pretty good place to be.

It sounds like you've got pretty good medical coverage, but the more you learn and know the better. There is a great thread for those that have just been diagnosed by Casey59 and that will be helpful in case you haven't already read it. It's the very first one listed. It would also be helpful if you could add you statistics to your signature so we can have a better idea of your diagnosis without having to refer back to your original post.

I do have a couple of questions for you in the meantime. How did the learn about your lymph node prior to surgery--was it through an MRI or some other sort of scan? What is your plan for radiation? Is it just external beam radiation or would you potentially have it in conjunction with brachytherapy?

Good luck and please keep us posted!

Michael
Posted 7/31/2013 10:29 PM (GMT 0)
Hi Keith. Sorry you have to be here, but stay. This is a great group.

I'm 3 months into 2 years of hormone therapy (Lupron + Casodex), and halfway through my radiation series (44 sessions accumulating to 79.2 Gy dose level). It's pretty tolerable, so take a deep breath and dig in.

The battle's on!
Posted 7/31/2013 11:41 PM (GMT 0)
Keith, welcome to HW PC.

What a difference those 2 years made with your fast rising PSA score. I was in a similar situation. At age 55 mine was at 4.x, and a year later, 16.x.

Changing your primary treatment plan sounds like it makes perfect sense based on what they believe is really going on.

Wishing you the best, and hoping for the best for you.

Please keep us well posted of your journey,

David
Posted 7/31/2013 11:54 PM (GMT 0)
I'll find directions on how to add my signature.

> How did the learn about your lymph node prior to surgery--was it through an MRI or some other sort of scan?
MRI and CT showed it was likely, then a CT guided biopsy (Fine Needle Aspiration - FNA) confirmed it.

> What is your plan for radiation? Is it just external beam radiation or would you potentially have it in conjunction with brachytherapy?

I didn't have a chance to talk to the NIH doctor's after they told me the news. I had 15 minutes to rush down to the blood lab to have a chance at enrolling in a vaccine trial that uses the body's own immune system to target the PC cells. I haven't heard yet if I'm eligible.

BTW, if anyone wants a second opinion on Prostate cancer diagnosis, options and treatments, NIH in Bethesda, MD offers a free clinic each Wednesday. Doctors of surgery, oncology, molecular oncology, and molecular imaging, and several residents meet together and develop a consensus opinion for anyone that provides medical records, and can visit NIH for a medical exam that same Wednesday.

Keith
Posted 7/31/2013 11:55 PM (GMT 0)
Welcom Kieth , get yourself a top notch medical team, travel if you have to and are able to. Read up on the disease, be a self advocate, so as to be able to seperate the wheat from the chaff. there is plenty of both associated with your disease, If able and you choose, get a knowledge base to a point where you will be giving an uplifting story, to others. Good luck. ps the more information we know about you and the statistics available to you about your diagnosis, the more help the forum can provide. Also know , there are , the forum is comprised of a broad spectrum of knowledge, and by its very nature provides nuggets of knowledge, but you, must connect that information to fit you. Your best source of information should come from a well experienced medical team, not this forum, or any online forum. There are no magic bullets in your PCa journey,. I hope it is a short and successful season for you.
Posted 8/1/2013 1:49 AM (GMT 0)
Welcome, Kevin,
Sorry you have to be here, but HW has been a life saver for us. We're those older guys but we DO have positive lymph nodes found after the surgery. it's looks like you've got a good team at NIH.
There are some upbeat lymph positive guys here... TCLasVegas, worrywarts are living and loving life and many others are beating back the beast. They should be chiming in shortly.
Take care of yourself, like logos says be your own advocate , read everything.

Jim and Marie
Posted 8/1/2013 2:01 AM (GMT 0)
Keith,
Welcome and sorry you have to be here. My situation was not really parallel to yours - Gleason 7 and no initial lymph node involvement. But when I needed salvage radiation 3 years ago they found an enlarged lymph node and specifically targeted it. So far, so good. Three years later my PSA is 0.00. Best wishes. Keep us posted and ask any questions folks here may be able to help with.
Jim
Posted 8/1/2013 5:15 AM (GMT 0)
Keith. I have some what simlar story, at 53 my PSA was 4.1, rose to 6.2,but I lost my job and insurance and did not follow up.Four years later DX with advanced PC, with bone mets. You cant look back, only forward, and dont believe anything on the internet re statistics, etc. I want to encourge you to stay positive, Logoslidat gives great advice here. I believe there is great hope for the future, I am embolded by my faith, keep your immune system strong and keep resisting this beast! Lupron has done wonders so far for me. My battle is still in it's infancy. I met a man, George gig Larson who had my same conditions and is still kickin after 14 years DX,(and with bone mets)He is still strong, uplifted spirit and an encouragement for me as well as are many many others on this site. Hope to e-mail you soon, Dan
Posted 8/1/2013 1:47 PM (GMT 0)
Keith, I want to edit my last post..,I meant to say -"dont pay attention to Internet info statistics on prognosis" or overly concerned or ovloaded with various info and articles on the intermet implying numeric probablities. We are all different, each person is unique. I'm sure we are all still interested in your personal "stats" that you could post as time goes on,in your signature at the bottom,as Logoslidat said. Sorry if my last post was confusing. I'll blame it on Lupron!  By the way, everytime I get a hot flash,I just try to smile and realize the medicine is working!  wink
Posted 8/1/2013 4:12 PM (GMT 0)
Thank you all for your welcoming messages.

Those uplifting stories were *exactly* what I needed to hear. I am an Eeyore that dwells on the bad news, and can't enjoy a sunny day without thinking it soon will rain. I do not want to live this way, because whether my life is short or long, it is serves no purpose to waste time being miserable and in fear of the future.

I have a lot to live for: a 43 year old wife who enjoys sex, a 10 year old daughter and a 6 year old son.

The cancer has two silver linings: 1) it brought me closer to my wife and daughter (my son is too young to worry about the future) and 2) I don't take them for granted any more, and I pay more attention to the time I spend with them.
Posted 8/2/2013 12:55 AM (GMT 0)
Keith, my cancer has brought me closer to my wife as well. She's been a great source of support to me and it does help focus on what's really important.

There are so many folks that have done well here with your stats and worse. I'm also a 50-something guy who is also in the high-risk camp and I plan on joining the group that has done well. You should plan on it too.

Michael
Posted 8/2/2013 5:11 AM (GMT 0)
Welcome aboard my friend. As you have seen this is one large fraternity along with so amazing spouses, partners, children, etc that have such a wide vast of knowledge from the school of hard knocks, reading, researching, and asking questions here on HW.

The good news, as I found out, with one lymph node involvement, insurance companies (and hopefully you have insurance) will not hestitate to approve you for radiation and hormone deprivation therapy. Will not pleasant, they are so bad. I just finished up eight weeks of daily radiation and wrapping up hormone deprivation. I am sure you will get signed up very quickly for those treatments.

We live in an amazing time with so many great treatments that are available that not only extend our lives but also increase the quality of it as PCa tries to knock us all down.

Keep positive, Tell Eeyore he belongs in Winey the Pooh and not in your life. Use all your energy to read, learn and to channel that energy in your treatments and recovery.

I have made many wonderful friends that have been my medical providers that really are cheering for me and doing all that they can to keep me alive, which is no small feat.

Come here often, validate your emotions (we have all walked your walk), ask questions, ask people to share their experiences with any upcoming treatments that you will be recommended to do. Everyone in my group that was diagnosed when I was with my Dx have all passed on. Today, I was able to fly fish on the snake rive in Teton National Park for Nine hours and didn't think once about my cancer that entire time.

Sorround yourself with loved ones and friends. They will give you amazing energy and support for you to fight and be there for you when you are down, and you will have more of those days as you already had. But you will also have many amazing days ahead of you, that I can promise you if you have the right attitude. Celebrate everyday as a gift, for it truely is.

Welcome to the fraternity, and I am sending you all the great karma I can possibly channel your way.
Posted 8/2/2013 11:28 AM (GMT 0)

Devasted1 said...

...
Keep positive, Tell Eeyore he belongs in Winey the Pooh and not in your life. Use all your energy to read, learn and to channel that energy in your treatments and recovery.
...

Lol, sorry... "Winey the Pooh", the embarrassing alcoholic cousin of the more famous Winnie the Pooh. Christopher Robin wasn't allowed to spend time with Winey, and Piglet couldn't be reached for comment.

Sorry! Whew.....
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