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My father has just been diagnosed.....

Mehelanani
Posts: 1
Joined: Aug 2009

Hi,
I am new here. On July 6th, 2009, my father (step-father, but still my dad), was diagnosed with stage 4, terminal Prostate Cancer. His gleason score was 9, 12 of 12 biopsies were cancerous, PSA 420 and recent bone scans are clear, MRI showed little enlargement in 2 lymph nodes in this pelvic area. The kicker? He's only 46.
We were SHOCKED. He had a completely normal DRE one year ago, and this last January, began having urinary issues....followed by another DRE, which was performed by my husband (who is a PA in Urgent Care). It was abnormal and he was sent back to his primary care physician...did his PSA in March and was 340. Everyone assumed it was cancer that had already metastisized. They did all the bone scans, CT's, etc. and ALL came back clear. His Urologist then assumed it was just an infection and placed him on antibiotics and told him to come back in 3-6 months. His urinary issues worsened and they did a repeat PSA which came back to the 420. He went in for biopsy at the end of June, which at that time the urologist said, it was most likely cancer, but thought to be confined and operable. One week later we went back to hear the diagnosis of Stage 4, TERMINAL. Completely inoperable, nothing they can do besides Lupron shots. Apparently it's SO rare that only 1 other man in the U.S. has been known to have this type of cancer, extremely aggressive and in someone so young. They gave him 18-24 months to live and up to 4 years if he does hormone therapy treatments.

Our family is slowly working through this...it's been an extremely hard and tiring month. I, being the oldest child, have taken on the main burdens along with my husband. Watching my father deal with side effects of the hormones...he's not like this...he's always witty, happy, energetic, talk-a-tive...now he's tired, quiet and moody. My mom is having a hard time, of course...she can't seem to shake it and begin the "fight". I don't know where to go from here...we're in the Seattle area, working with Seattle Cancer Alliance and Dr. Tia Higano (one of the top in the world) and the Fred Hutchison group....nothing more they can do but watch it. He doesn't even qualify for any clinical trials because this cancer is so rare. We've checked into Mayo Clinic, Duke University, MD Anderson...all of them said, "no". We've spoken with Prostate Cancer Support groups but it's frustrating because they are all "older men" with PSA's at max of 100's all with a "slow growing" Cancer.

Is there anyone out there than can offer any advice, or support or anything? My husband and I feel at a loss....like there's nothing left but watching him die over the next several years. Our hearts are heavy.

Nadine

Taghreed
Posts: 10
Joined: Jul 2009

Nadine Hi,

I was shocked when reading your post, i felt that i was reading mine that I posted moments ago...and even thought that a memebr of my family joined also and was posting....

same story as mine, my step father ( who's my unlce) and is 49, stage iv cancer, and that had already metastisized to bones and liver, diagnosed in june 2009.....and i'm the eldest daughter also who's coming and going, asking and researching.... i wont deny that there are some days and nights that I broke down, and felt completely lost, my Mum is strong, but she couldn't handle all details....so it's me who's facing all the shocks, and interpreting them in easier, and smoother terms.

what can i say, all I know is that we are not alone in this journey, i had hopes and better spirits when I read all the posts... we both know that our dads are so young to suffer through this beast.... but here it is....what can we do...

i also know exactly what are you going through, the tons of resposibilities, tons of decisions and opinions, sleepless nights and tears, ....

i will keep you in my prayers as all patiens, hope we stay updated.....

Taghreed

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

I don't know much about advanced stage PC, but My Father was diagnosed years ago with a PSA of over 700. He has been taking Casodex injections since then and he is now 96 1/2 yrs young. I don't know what kind of cancer he has, but thought I would offer you both this "glimmer" of hope. I am a 8 1/2 yr survivor myself.

Prayers are going up for you both as we speak.

Roger

lewvino's picture
lewvino
Posts: 1010
Joined: May 2009

So Sorry to hear about your 'father'. Listen to him, be there for him, be positive. And rather then watch him 'die' why don't you think positive and watch him live each day to his fullest. Take it one day at a time and do something special for him to cheer his days up.

I will keep your family in my prayers.

Larry

saoco
Posts: 43
Joined: Aug 2009

I will pray for you.it hurt when some one so so young get hit so hard. I mayself was 46 when it hit me I had surgury almost five years ago and thank God doing fine.my father also had pc,but he died three months ago of liver cancer.it hurt but God always if you believe will
give you an iner peace enjoy as much you can with himm now. may the lord grant you his peace.

lion1
Posts: 241
Joined: May 2007

Cancer also at 46--------------------3yrs ago----------------God Bless.

Lion1

Amy41
Posts: 14
Joined: Jul 2009

Yep
Most of the support groups are for men that have been caught earlier and can have surgery or radiation not for the likes of our family Your Dad is in good hands at SCCA - my husband also has advanced prostate cancer diagnosed a year ago at age 50 with a PSA of 750. If your Dad is lucky and not special like my husband the hormone shots might work for several years then you join the other boat - HRPC. My husband is now on a clinical trial and on chemo - but its taking its toll but he is a trooper and is doing what can be done He is also at SCCA with Dr. Yu but you have the head honcho Dr. Higano.

Mallie
Posts: 10
Joined: Sep 2009

Hi Nadine,

I am very new to this site. However, I can cetainly sympathize with exactly what you are going through. My dad was diagnosed with advanced prostate cancer about 1 1/2 years ago which has already metastatized to multiple bones in his body. However, my dad is quite older than yours. He is around 70ish. Nonetheless, the pain doesn't lessen at all due to the age factor. Me, my mom and my husband's heart are extremely heavy due to this diagnosis. We have watched a very vibrant, humorous, outgoing and wonderful man go through something that I wouldn't wish on my worse enemy. The love that I have for my father is beyond what any words could ever express and it has been hard watching him go through the pain. However, about 2 months ago, they started him on Casodex and Lupron shots. He is scheduled to get the next injection in October. I truly praise God that he has felt much better than before since the combination hormone therapy. He has not had to take a pain pill for about 2 months now. The side effects have been hot flashes on and off, occasional tiredness, some lower back pain, a little bit of weight gain which he desperatly needed and he said that hair is just growing everywhere (under arms, etc.) Overall, he has been in much better spirits lately and again I give God all the glory.

I do have a question for anyone that might be (or knows anyone) on the same meds that my dad is taking (Casodex & Lupron shots? I know that this might sound very weird coming from a daughter (but I am a married grown daughter...LOL), I've spoken to my mom because I keep reading about the men taking these meds having their sex drive significantly decrease. Has anyone tried any types of meds to try to help them out in that area such as Viagra or anything and what were the results? Also, does anyone know of anyone to have broken any of their bones, in particular their femur bone? That is the bone that the doctors seems to very concerned with. Please help if you can.

I pray for everyone on this website and I thank all of you for your stories. We all need as much information and emotional support as we can get.

Warmest regards,
Mallie

NM
Posts: 214
Joined: Jul 2009

I cant help you and I will pray for your dad. My dad died of prostate cancer in 1993. I believe there are more choices out there so dont give up, research, ask doctors questions and most of all love him and let him know.If you have brothers tell them to get tested after 40. I am 52 and will add you to my prayer list...Nick

Mallie
Posts: 10
Joined: Sep 2009

Hi Nick,

Thank you for keeping me and my dad in prayer. I can't ask for anything more than that. I certainly won't give up. I also thank you so much for the advice. I am very sorry to hear about your dad passing away from prostate cancer. I know that you can certainly relate to what we all are going through.

Again, thanks for the prayers and advice. Very much appreciated. :)

NM
Posts: 214
Joined: Jul 2009

I also have prostate cancer and choose Davinci surgery.(5 days ago) God bless your family I know what your going through.....Nick

Mallie
Posts: 10
Joined: Sep 2009

Thank you again. I will keep YOU in prayer also. I didn't know that you were dealing with prostate cancer also. I am not sure what the Davinci surgery is. I will research that too just to broaden my knowledge.

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