New t4n1m1 G8

That's a serious pathology report.  I applaud your husband for his positive attitude and I wish him well, and it's great to hear that he's doing all that's being asked of him.

It's impossible to guess what's going on in his mind, but I'll bet he's trying to find a way to minimize your worry.  He may not be succeeding, but I'll bet he's trying.

He may or may not be in denial. That's a possibility and understandable.  I can tell you that my experience was that a cancer diagnosis was like being hit by a truck.  I tried to adopt a casual air about it so that my wife wouldn't worry too much, though, like you, she did.

We have some guys on the forum who are Gleason 8's and 9's and who can offer better words that I can.  I just wanted to get a reponse up here so you know you're being heard. 

6040poly,

I send my love and best wishes to you and your husband. Let me welcome you to the forum that nobody wants to be on or have to deal with prostate cancer.

I am a Gleason 9 and in a few weeks coming up on four years since diagnosis. I applaud you for jumping in and educating yourself like your are doing. You are an amazing person and remind me of my wonderful neighbors sweetheart that dealt with his horrible prostate cancer. On the outside, she was cool and collected, she researched, educated and networked to find out all that she could. She enlisted her older children to do the same. For some reason, my wonderful buddy Doug did not want to read up and educate himself an let his sweetheart do all that. On the inside, she like you worried about the very real possibility of losing him.

I can honestly say that with a serious diagnosis like your husband and mine and so many here on HW with not encouraging results I walked in a dazed state for at least two months while immersing myself with anything and everything I could read. I have seen many like your husband not wanting to utilize time by reading and just follow the doctors orders relying on their education, training and expertise.

Your husband is probably very depressed and why shouldn't he be. He was recently told he has a pretty bad case of this insidious disease and is processing the reality of this. You are too and from my humble experience this is much harder for my wife than it is me and so I would encourage you to quickly build a network of support around yourself for emotional support. For the first couple of months after diagnosis and that the sand in the hourglass of life was running out, I couldn't talk with my wife about death. I wasn't ready to talk about mortality and hadn't made peace with death and knew that she was more scared than I was with the reality since she attended every appointment and heard the reality of what I was diagnosed with and how much worse the pathology from surgery from the biopsies.

So I would suggest that he probably isn't ready to have such a bleak discussion and he is processing it and internalizing it. He is a man. We don't communicate very well even in good times let alone after being diagnosed like he was. So I applaud you for taking the bull by the horns and reading up and educating your self. I have found that my appointments are more productive because I know the questions that I needed to ask, and I have found the oncologists really like it when someone has read up and knows enough to ask questions.

The best you can do right now is be with him for his appointments and treatments. I realized that I probably heard about 2/5ths to 3/5ths of what the oncologists were saying. I had seen so many movies where the patient goes numb when being told bad news and the brain can only process so much information. This is where you can make a real difference being his ears and being his support.

Again, I really encourage you to build your emotional support network up as quickly as you can. Hopefully you have family, loved ones and dear friends that are there to support you during this experience. I have found that some of the people that I thought would be there for me, couldn't handle even saying the C word let alone be with me. But, others would come out of the woodwork and were and still are angels that I thank God for every night.

It is a good sign that he is positive and upbeat on his situation. One needs a lot of positiveness to endure the treatments, surgeries, poking the prodding and the side effects that come with all of the above. So that is a positive start.

Maybe in a few weeks when you think he is settling in and maybe be more interested in talking, you can approach him with some of the questions and concerns that you are experiencing and also the feedback that you are receiving on this amazing forum with some many unselfishness and willing to share their experiences, their emotions, their treatments, their side effects, etc. There are people all around the world on HW and you will find this to be a great resource.

Just so you know, there are so many amazing spouses, children, grandchildren that are going through this experience so please feel free to reach out to them with posts to validate what you are experiencing.

I want to provide you hope. I was told four years ago that I had very little time left. In fact, everyone in my diagnosis group in January, 2010 diagnosed with Gleason 9 and all the other great things that I too was diagnosed with have all passed. I am here today, a Gleason 9 that is currently non-detectable and I feel very blessed and every day is a literal bonus day to me. Even when the ship hits the sand bar on a horrible day, I smile and grateful to be alive and have experiences, both good and bad. ''

There are so many amazing men and women that have dedicated their lives to research, education that you will come across that will make a wonderful difference for your husband and yourself. I have been blown away with how personal that take my case and do not want to loose and spend extra time in researching, and collaborating with the entire oncology team.

So please see the sunshine and not the dark cloudy skies because they can so much for your husband. You have already started off being an Angel by doing what you are doing and I applaud your efforts. As time progresses I guaranty that he will open up and you two can have the discussions that need to be had. it just isn't the time yet but you will know when it is.

Please post as many questions here as you can think off. There is so much collective knowledge and wisdom here to help you get through this.

If you would like to visit, let me know and I will post my email on my signature page so you can contact me if you desire.

God bless you, our husband and your beautiful children.

Welcome, so sorry you need to be here, but glad you did.

A very serious diagnosis, but never lose hope, we have men in similar straights that are holding
their own.

Many new advances out there, new trials, and more in route.

Please keep us posted of your husband's journey. We are here for you.

David

Hi there, such a shame that your husband has to go through this at such an early age. All I can offer you is the story of my own dad, who will "celebrate" in January 3 years since his diagnosis, with pretty much same stats as your husband. My father is in good shape, running around town on his bike. He also chooses to "ignore" his disease, he is a simple guy - he is aware but does not make a fuss about it. Me, on the other hand, worry too much. Let him keep that attitude, it is the best. If he doesn´t want to know, then he doesn´t. I know too much, and I´ve had 3 yrs of worrying and my father had 3 yrs of not worrying. You don´t want him be depressed because it is a disease that won´t kill him in years, so what is the point? Best to you and your hubby!!

I concur with all the advice above. Another site I have found useful and supportive is http://www.yananow.org/Links.shtml . I just survived my first year. Our first few months were very traumatic but that mostly passes and some hope returns, even with my advanced cancer throughout my bones (without tumors). I was close to death for a month in November 2012 before I was diagnosed, so my wife and I had that extra trauma to work through. But I had a quick turn-around in one week just as soon as I started the hormone treatments at the end of November. The side effects of the hormone treatments (hot flashes, weepiness, impotence) take time to adjust to, but that becomes more routine too. I used my skills as a poet to work through my trauma and keep me motivated. The 81 poems I wrote during the first six months are published as an e-book on Amazon, Distilled: A Poet's Life with Prostate Cancer. I work full time still as a lawyer, now from home, which helps distract me. (On the hormone treatments it was easier to keep up my strength and energy, and was able to work in the office full time and manage a strenuous two week business trip to China. Even now, I recently managed a long weekend with my wife in Paris.) It remains difficult for my wife and I to talk about the cancer; but she has found her own support from friends and family, and we have gained a new intimacy that more than makes up for the loss of sex. I think I must be harder for the wives. My hormone treatments stopped working in May; but for many men they can work for many years. My second treatment stopped working after two weeks, but again others have had much longer protection. I've been getting chemo for a few months now, and it is generally much easier and milder than the chemo treatments for breast cancer, so don't equate the two. Chemo for prostate cancer -- when it comes to that -- provides no cure, but again it can work sometimes for years, until something better comes long. So there are very good reasons for hope, even on the bleak days. The dark days are always followed by good days; you just have to take one day at a time and not try to live with all the dark days at once. No one can carry that heavy burden. Every day is a gift.

Neil

Welcome 6040poly,

So sorry you have to be here, but, you're in great and warm company. Seem we're quit the opposite. Since being DX, I've spent 100's of hours researching, reading and spending lots of time on HW. This site has helped me tremendously. I'm sure you'll find comfort and gain tons of information from everyone here.

Since only being DX since last Oct., I can't offer much information and I'm sure others will come along soon and offer advice. Each day is a new day and we're taking it one day at a time. I'll be praying for you and your husband.

Dave in Bartlett, TN

Wow!  I’m overwhelmed with all the wonderful responses.   I’m sad to hear from so many that are going through this, but at the same time so grateful that you are sharing stories, information and support.  Thank you!  Thank you to each one of you that responded from clocknut to grandpaof4.  Each response felt like a greatly needed hug.  

Devasted1 – thank you for the wonderful response.  I’ll be keeping it handy to read again and again, along with all of them.  I’d love to respond to each one personally. 

All along I’ve let my husband lead the mood and conversations.  I might try to start a conversation and if he doesn’t respond, then I let it go.  I figure when/if he wants to talk, I’ll be there.  I don’t want to influence his emotions.  I believe that’s been the consensus from the responses so far.  So, I guess that’s what led me here.  I have things I’m ready to talk about and emotions I need to express.  I’m sure I’ll get to talk with him about them someday.  But in the meantime I need to get them out.  Again thank you to all that participate on this forum.

I’m in the processes now of seeking an Oncologist that has experience with this stage of PC.  I’ve been putting out feelers and talking with people and professionals in our community.  My biggest concern is whether we should be looking outside our community.  I guess we can make that determination once we see the specialists here.  We are in Columbia, Missouri, in case anyone on the forum is in this area and can provide additional insight. 

I completely left the PSA out of the signature, sorry.  First PSA reading from the primary care physician was 17.87 with an abnormal DRE.  That got him an appointment with the urologist and a bx within a couple of days.  I never heard any more about PSA other than it will be checked at his 3 month follow-up after the RP.   As well as a bone scan.  Then it will be checked every 3 months.  I have a list of questions for the doctor; 1) were there any PSA readings between the first one and the surgery, 2) should we check the PSA before changing from firmagon to eligard.  Other than reducing the frequency of getting an injection I’m not sure why it was suggested.  I know he would prefer fewer injections (I want that for him too) but now I’m wondering if this will bring on more side effects or worsen the ones he has. 

Any thoughts on switching from firmagon to eligard would be appreciated. 

The initial recommendation from my husband’s urology team was to be as aggressive as possible.  Hormone therapy (because of bone mets), RP to debulk and relieve symptoms and RT to follow 6 months after surgery.  Like Jerry L said, “. . . throw anything and everything at this to keep it at bay”.  He was already having urinary symptoms and a few days before the bone bx he had to start self-catheterizing.  That’s when he started on the firmagon. 

NMcD – thanks for letting me know about yananow – I’ve been over there reading.  Haven’t participated yet, but will. Praying you have many more good days than dark ones. 

Thanks everyone for the info prayers and support.  I'll keep it shorter in the future. 

6040, So sorry you need the help on this board. These folks know some stuff about this beast. I know several of the people first hand. We are face to face friends. I am especially pleased that the wives have jumped in for you.

Feel free to ask anything when you need that warm connection we will be there for both of you.

6040poly,
WOW! With a supportive spouse like you your "best friend" will be around for many years. The majority of men on this forum are cool, calm, even-tempered, and highly intelligent and it is reasonable to assume that your husband has put PCa in his inbox.
You can definitely help by reading some threads like Sonny's where he was able to map out where his cancer was. This might be a question to ask his doctor(s) before he has radiation.
We have many members that will help if they can; for example, Tony is a DOD Researcher, Tall Allen always offers excellent advice although 1 member who met him in person has stated that he is only 4'11"..Who knows? John T always has excellent advise regarding tests to have before radiation.

The best advise that I can offer is to always be with him during a doctor's visit and have a list of questions that the answers to might be helpful..I am terribly sorry that you are in this situation but do take Mrs WW up on her offer to communicate; she is a well traveled lady and did a lot of research.
All my best to both of you!
Bill

Polly and Mr. Polly:

I applaud your surgeon for debulking a T4 distant metastasis PCa tumor. This is uncommon and hardly normal but can be considered the most aggressive treatment available. Perhaps his age and condition and fitness led to this option. I offer here this recent information:

http://www.europeanurology.com/article/S0302-2838%2813%2901209-8/fulltext

Do not be concerned about the time of survival, as these men were treated some years ago. The point is that what was once considered bizarre and against medical recommendation is now more likely. As your man can attest. He is at the forefront of this new movement.

6040, Now it is our turn to check in with you and see how you are doing and if you felt any hope from your first post with the responses received and the help from the women to exchange emails, phone numbers etc.
Like I said, you really need to develop a critical group of friends that you can visit with and really have the serious talks with.Friends to vent the very tough emotions that your husbands prostate cancer has brought into your lives and how you are going to work together to beat this pathetic cancer.

There are so many of us here that should no longer be here based on medical statistics, but we are alive and doing well so please have hope that with the great expertise, finding the right oncologists will make a tremendous difference. We are routing for you and your husband.