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Thank you for giving me hope

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Prostate Cancer
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Posted 6/6/2018 4:55 PM (GMT 0)
My husband was diagnosed on 4/14. Gleason 7. PSA 43.

He's had bones scans, cat scans and MRI. When I read the bone scan and it said no findings, I thought we were in the clear. Then they ordered an MRI and his Surgeon said it has spread. We are devastated. My husband is 52 and we thought was in perfect health. He finally went for a check up as he has never had one and I was insisting. His PSA was high, so then he went for a biopsy and 6/6 were positive. We are from Long Island and have been to Sloan and met Dr. Laudone. He recommended a multiple treatment plan and we will meet with the oncologist on 6/19. My emotions are so strong and I feel like I am drowning. We've been married 24 hours with 3 kids. He's my rock and trying to hold it together for me and I am just so sad and worried. Today I found this site and reading so many positive stories is giving me hope, so I thank you.
Posted 6/6/2018 5:27 PM (GMT 0)
Wecome todokomo...keep this in mind...those positive stories...are about to be increased by your husbands...you are in great hands at MSK...you feel like you are drowning...that will pass...as you see the results of your medical teams treatment...at 52...he should manage any side effects well...Im not blowing smoke here todo...Im blowing it away...be happy...it really is not as bad as you envision...when you get anxious and hyper...do deep breathing...relax your flesh and melt into your spirit...it really works...logo
Posted 6/6/2018 5:55 PM (GMT 0)
Welcome to HW. Sorry you need to be here.

It's a shock to learn you got to deal with this. The best way to deal with this is to learn all you can - knowledge helps with the fear. You're in good hands at a Sloan.

There are so many things they can do these days. You have every hope that they can keep this at bay for many, many years.

The advanced folks will be along soon with more information.

Andrew
Posted 6/6/2018 7:08 PM (GMT 0)
I'm so very sorry you are both going through this. This is a GREAT forum. Lots of information and helpful people. Use the Search bar if you have questions regarding treatments or drugs or side effects. If you are on Facebook let me know because we've got a private group for wives whose husband cancer has spread. Also if you have any questions, you can send me a message, I'll be happy to help.

Read over my signature, but my husband was diagnosed Christmas Eve 2016, Gleason 3+4 and 4+3, PSA 74, three bone mets and lymph node involvement. He started Lupron early January 2017, 6 doses of taxotere and now Zytiga/predisone (the new protocol was approved in August 2017 and he started it in December 2017). His last scan the mets were diminished enough so that they had to pull up his old scans to see where they were. Current PSA <.06.

Read EVERYTHING! Research EVERYTHING. Question EVERYTHING! Be your husbands advocate.
Cuddle, hold hands, touch and make love as much as you can. My husband lost the physical ability about 5 months into his treatments (chemical castration). He still has some desire, but things just don't work like they used to.

If your husband or you don't agree with a treatment suggested by the doctor or oncologist, ask why another treatment wouldn't work. We had to do that a couple of times. Husband also decided not to do some treatments and alter other treatments because we couldn't understand that need to rush into adding other drugs until they are necessary to avoid even more side effects. Read CHARTED Trial and STAMPEDE regarding early chemo. If your husband doesn't have any bone mets, chemo probably won't be a good choice at this time. Make sure you have doctors that will listen to both of your concerns and explore options, try to avoid those that think that their path is the only path.

It's a shock, it changes everyone involved, and it becomes a new way of living.

FYI we're going to Hawaii in December for our 35th anniversary - life goes on and we make the most of it!
Posted 6/6/2018 7:17 PM (GMT 0)
Welcome Todokomo!

I'm sorry you've been through this shock - I was there myself a little more than a year ago (see my signature).

Read the long sticky at the top for the newly diagnosed - there is some great information there. Don't rush into anything - even with locally advanced or metastatic PCa you have weeks or months to make treatment decisions. MSKCC is a great place for you, and a world class cancer center.

Read, read and read some more, then come here and ask questions - these guys know a LOT about PCa, and listen to InTheShop, Pratoman, TallAllen and others - they know what they are talking about, even though none are MD's. Don't worry about asking dumb questions - there aren't any - ask away and there will be someone who has gone through what your husband is going through.

I know you feel like you are drowning right now, but it will be more manageable the more you learn, and the more you work with your team of doctors..

Best

Rob
Posted 6/6/2018 7:28 PM (GMT 0)
Welcome Todokomo,
I’m originally from Long Island. Seaford to be exact. You and your husband are where we all have been. Trying to drink from a fire hose. There is so much to take in and it seems like you are drowning. This site gave me the push to get educated. There is a vast amount of information here and also some very educated people on here. Some have vast knowledge and others are the type to give emotional support.
You are in good hands with MSK. Did you travel into the city or the satellite site on the Island?
I’m sure your husband will still be your rock for many years to come. This disease, like all cancers, becomes a family disease. Stay close, discuss treatments and tests. Go with him to as many doctor visits as you can. Take notes on everything. Breathe. Relax. And when you have all your info, again discuss it and make your treatment choice. Once a plan is in place, everything will ease on all of you. Believe me, it will. It seems like a lot and it is, but patience will pay dividends. Don’t make any quick decisions. Treatment regret is something you don’t want to deal with.
Your husband will be around for a quite while with you and the kids right next to him. When you have time, put a signature to go with your posts. The more info you give the folks here, the better the info they can provide.

Best of luck to you and your husband.
Dogdays
Posted 6/6/2018 10:39 PM (GMT 0)
Thank you all. I'm happy to have stumbled across this group. Your positive reinforcement goes a long way. I have a lot of reading to do.

We are going into the city for treatment. My daughter ironically started working at Sloan in NYC. Who would have thought my husband would be a patient a few months later. We live in Oceanside so not far from Seaford. My parents just bought a condo in Seaford (where the old Boces was).

You have all calmed me down for now.

Terri

Post Edited (todokomo) : 6/6/2018 4:42:48 PM (GMT-6)

Posted 6/7/2018 11:22 AM (GMT 0)
Terri,
Now that you're calm, try to stay that way. It can be like running around with your hair on fire. We know. You guys will get through this. You need to be your own advocate in dealing with this disease and you will need to be by his side every step. Ask question here online and of the doctors. Read the stickys at the top of the main thread page. The biggest thing is to stay calm. Don't let panic set in. It causes poor judgement and poor decisions. Weigh out the options. Talk to different doctors. Don't let anyone talk you into something you guys are not comfortable with. Bring their recommendations back here and the people on this forum will be glad to help you understand things. Above all......stay calm.
BTW.....Dr. Laudone was on my short list of surgeons if I needed ine. Right behind Scardino and Eastham.
My brother still lives on the Island in Malverne. He has his boat docked at All Island marina in Oceanside. He keeps asking me to come out and go fishing. Once I can get by some things I have going on, I need to go. My daughter and her boyfriend are going out with him tomorrow. My daughter works in Manhattan just above MSK on York at an orthopedist's office. She is looking to get into MSK and is currently taking radiation classes. Small world...lol
I hope some normal conversation helps to ease your mind. It does mine.
Dennis
Posted 6/7/2018 12:58 PM (GMT 0)
Hi Terri, nothing to add to the great advice above. I know how difficult this has been on my wife of 45 years, we are both partners in the fight.
Posted 6/7/2018 3:48 PM (GMT 0)
todo, make it a team effort. My wife was diagnosed with breast cancer two years ago. What followed was a double mastectomy, months of chemo, almost lost her due to neutropenic fever after 5th of 6th chemos, and then immunotherapy for a year. We dropped everything else in life and made this our joint effort. She is doing well, heck, she ran a half marathon last weekend.

When I was diagnosed last February, we said "here we go again" and did the team effort. What the patient needs most is a caregiver to be steady and unemotional so that they can take in all that is going on and digest it without the anxiety the patient will experience.

Aside from that, the biggest help was her arranging all the logistics since I went for Cleveland Clinic (I live in Montana) and that involved two separate trips, getting the lodging figured out, and taking care of me while I spent a week post-op in a hotel.

Good luck to your both.
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