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Posted 4/15/2017 11:43 PM (GMT 0)
Hello All!

This is my first post and I am hoping for some support and guidance. My husband has just been diagnosed with metastatic prostate cancer.
It started back in January with lower back/right hip pain that radiated down to the front of his right leg. X-rays of lower back revealed calcification, Dr. recommended PT and stated beginning stages of arthritis. Pain subsided after about 3 days.
In March, pain in right hip resurfaced, it was hard for him to even move. Trip back to Dr. with pain meds and tramadol shot. Pain subsided after 5 days. Also, during this time, we noticed a swollen lymph node above the left clavicle. He went to his GP who treated it with an antibiotic and advised to check back after two weeks. I'm guessing you have figured out what happened after 2 weeks...referral to ENT. Needle biopsy performed which revealed a poorly differentiated squamous cell carcinoma. Nasal endoscopy revealed nothing unusual in nasal cavity, oral cavity was clear and throat clear. CT Scan ordered for neck and chest. Results revealed that lymph node in neck extended below the left clavicle into the chest area. Everything else above the diaphragm clear. They found cancerous lymph nodes in the retroperitoneal area around the right kidney (a rare presentation for prostate cancer) but were still uncertain of the primary cancer site.
Surgical biopsy ordered and completed on 4/6 results on 4/13 reveal cancer is prostate in origin. Diagnosis of metastatic prostate cancer. Poorly differentiated adenocarcinoma prostate in origin.
We are at the very begining stages of this process, even though the cancer is in the later stage. We have an appt with Dr. Grevas (Cleveland Clinic Taussig Center) on Friday. He was this first Dr. we could see asap, as many are out on vacation next week. They will order many tests (PSA, PET, Bone Scan etc...). There is much concern that the cancer may be in his bones as well (prostate cancer usually mets there, right?) based on previous symptoms. Other than what I have described, there were no other symptoms present that would indicate such advanced disease.

Now the important information and what matters most. My husband is 44 years old. We have two beautiful boys (ages 5 and 8). I am trying to wrap my head around all of this and we are still in shock. I am assuming the treatment will be aggressive (hormone suppressants, chemo, Lupron) based on his age but I'm not sure. No one has stated anything about prognosis yet but we are preparing ourselves for battle. I'm not sure the reality of the situation has hit him yet? I know it hasn't hit me yet. We are just going day by day. We have so much to fight for there is no other option! Thank you all in advance for any information, research, suggestions and most importantly support that you are able to provide. With much love and prayers to you in return.

Nikki
Posted 4/16/2017 12:16 AM (GMT 0)
Hi Nikki, very sorry you have to be here, but you are in a great place to get information and to share. It sounds like you have a good short term plan at a very well known hospital. Hard to map much out until you get those other tests, but I'm sure others more proficient than I may provide additional information for you.
Stay strong -Ken
Posted 4/16/2017 12:32 AM (GMT 0)
Nikki .....hard reading your post ....so sorry you found us , but WELCOME !..........you sound like your dealing with this extremely well so far ......try and stay calm and do all the research you can before talking to the specialists.........please stay with us and know that there are many here on this forum that can be of help , once you get more information posted ......stay focused and good luck .....David
Posted 4/16/2017 12:45 AM (GMT 0)

Dear Bird8,

I'm here to lend you my care, concern, and support right now.

You have found a VERY caring "corner of the world" on this website.

The members here hail from across the entire United States, with loyal members joining us from across the globe, as well.

Each story is unique ... but in your words, I found common threads in my own story.

I, too, was in my 40s, when I was unexpectedly diagnosed with advanced prostate cancer. Every member here knows the worries, fears, and anxieties that you and your husband are facing together right now.

I am an elementary school teacher ... I had just attended my 30th high school class reunion ... I had been blessed with a lifetime of perfect health.

A new school year had just begun ... I've taught for over 25 years. I began having some health symptoms and this led to a series of tests ... PSA tests ... biopsy ... bone scans ... this is right where you are at in your journey.

There's worry, panic, fear, restlessness, anxiety, and sleepless nights ...

My diagnosis ... advanced prostate cancer, with a PSA of over 100 at the time of diagnosis ... and by the time I was diagnosed, the prostate cancer had infiltrated both of my lungs.

I can see the "fighting spirit" that is evident in your post. That's what's going to get you started in your battle ...

Make sure that you have a top-notch oncologist, who specializes in prostate cancer. In my case, I have my original urologist, my main oncologist, and now a urology oncologist expert from Mayo Clinic in Rochester, Minnesota. They all work together on my case --- sharing test results --- consulting with each other.

The biggest thing I want to convey to you is a sense of HOPE.

I knew, from the onset, that my case would have its challenges. My doctors got my started immediately on ADT hormone shots and this brought my PSA down from 138, down to very low levels. Many of us here are on this form of treatment.

In consultation with my oncologist, we decided to then add a series of chemotherapy treatments, as a second form of "attack" against my cancer. Many of us here have pursued chemotherapy treatments as a weapon of attack against our cancer.

In more recent times, my oncologist added one of the newer breakthrough medications that has been recently F.D.A. approved in the fight against advanced prostate cancer. These newer breakthrough treatments and medications include XTANDI, PROVENGE, ZYTIGA, and XOFIGO.

Throughout all these treatments, I have continued my teaching career. My appointments are very late in the day, allowing me to not miss time with my school students.

Throughout it all, I have stayed active and I exercise each day. I continue to stay active socially ... I still pursue all my usual activities and hobbies ... and I work on volunteer and charity projects.

Over time, my treatments have helped me. New treatments and medications HAVE emerged in the past decade that can be very effective and helpful. These medications and treatments continue to help me, every single day ... you'll see my medical history, printed below my signature at the bottom of this post.

Your doctors will begin advising your husband ... treatments will begin ... you'll learn a great deal, in a short amount of time ... and we're here to support you. This is a place for you to check in, whenever you need to ... your husband, as well ... we've got supportive members checking in here, 'round the clock, 365 days a year, weekend and holidays.

Members here listen ... they care ... they lend support ... they share advice, when asked ... they will answer specific questions you might have ... we offer solace, on rough days, when you need it the most ... and we share first-hand treatment experiences, in the interest in helping others.

Each of us experience challenges, to be sure, but you also need to know that there is HOPE out there ... and treatments that can lead to some meaningful treatment success for your case, as well.

I have one piece of advice that can help you, beginning RIGHT NOW. At the top, right-hand corner of your screen, you will find a SEARCH BOX. Type in this thread titles, as follows: LETTERS TO THE NEWLY DIAGNOSED. Once you type that in, click on that thread and the entire thread will be revealed to you. Read through the letters ... print off a paper copy ... and share the letters with your husband, Bird8.

He needs those letters, right now ... trust me ... and I think they will be helpful to you, as well, Bird8, as your husband begins the medical treatments that his doctors will suggest to him ...

I started this medical journey of mine almost four years ago ... I'm still here, I'm still facing forward ...

I needed some hope when I received my diagnosis and that's what I'm sharing with you today --- my hope. We're all in this together

My best advice today ... no matter what it takes ... stay active, both physically and emotionally ... keep facing forward ... keep living your daily life to the fullest extent possible ... and I have found that staying connected to family, friends, and faith, in whatever form that takes for you, to be the most important thing of all.

A message of support and hope, from across the miles,
"Cyclone Team Fan" ~ Iowa State University
Posted 4/16/2017 12:59 AM (GMT 0)
Bird8, sorry you need to be here, but glad you found this group. You'll know more as the diagnosis process continues.

Being new to the forum, you are probably not yet familiar with one of our long-term members here, Todd1963. He had a very advanced metastatic case when diagnosed over 10 years ago at age 42, and yet today he is living well with an undetectable PSA. There is hope! Here is a link to Todd's blog: Todd's blog. Todd visits this site occasionally.

Please stay with us as you learn more. There are some knowledgeable people here, and many of us are here to help. We're not medical people, just more people fighting the many faces of this beast.
Posted 4/16/2017 1:14 AM (GMT 0)
Hello Nikki
So sorry for your need of being here. However, this is the place to be. You will find individuals who will walk with you, who know the feelings you are having, and have information that you will need at all hours of the day or night. I have learned that I could not buy the support that is freely given to help you down the journey. I have been here nearly ten years. Aware that there are men at all stages who come and go. Waiting is Hard. Soon you will have more information from the tests and then begin to set a path forward.
Posted 4/16/2017 1:39 AM (GMT 0)
Hello Bird8- I am sorry that you have to deal with this at this time but you have found the most wonderful group of people young and old who have gone through or are going through a similar situation as yours. We are all here to lend our support and offer a shoulder to lean on. There is so much information here to help you organize your thoughts and path onward. Ask any question you want, nothing is off limits. I want to say with an open heart, welcome and my best to you and your husband as you travel this journey.
~Cynthia
Posted 4/16/2017 1:42 AM (GMT 0)
Hello Nikki

I am so very sorry to hear of what must have come as a huge shock to you both.

You mentioned you were looking for "support and guidance", and I am very pleased to tell you that you will find both here - by the bucketload.

The good people at this forum have a vast range of experience and knowledge, which they are (thankfully for us!) willing to share. They are kind, encouraging and non-judgemental. I hope that this will be a huge support to you and your husband going forward.

We are sending healing thoughts and well-wishes your way, and hoping for the very best for you and your family.

All the very best,
Jaybee&GG
Posted 4/16/2017 2:58 AM (GMT 0)
Nikki,

Very sorry to hear of your husband's diagnosis of advanced prostate cancer. Many of us here know first hand what it's like to go through all of the various stages of this difficult situation.

I'm glad you found this group to help support and we give each other comfort and hope. It's also good to find a support group of local people where you live. The medical staff are there for treatment and they do a good job at that, but the patient needs care as well as treatment. What I like about my support group is the people there have actually gone through it themselves so they can offer more in my opinion.

There is also a lot of knowledge and experience here to help you make the best choices for your treatment.

I am also one of the those diagnosed with advanced metastatic prostate right from the beginning. Lots of lower back and leg pain. Just to give you some hope, I am making what I feel is a miraculous recovery with the excellent treatments available today.

Certainly its a shock for anyone to find out they have advanced cancer of any kind, but prostate cancer is one of the most treatable cancers there is so we have hope.

My hope for you is that you find the best treatment possible and begin the recovery process soon. I wish the best for you and your husband and hope this forum is able to help you get through this difficult time.
Posted 4/16/2017 5:11 AM (GMT 0)
sorry you need to be here.

You've got a difficult situation there. Still, there are plenty of treatments out there and every chance something will work.

Do keep us updated and ask any questions you have,
Andrew
Posted 4/16/2017 6:19 AM (GMT 0)
Hello Bird8,
I would also like to offer a warm welcome to you.
You have been given a lot of information to digest from some very good and knowledgeable people, so I will just invite you to share as often as you are able and ask questions as they come up.
I will honestly answer your question about bone mets. Yes, that is common in PCa. However, adenocarcinoma in bones secondary to PCa is often immediately and effectively responsive to treatment.
But as others have said, it's no sense getting ahead of ourselves. You will be getting the scan results soon.
Have you said anything at all to your children yet?
They are still so young. I'm sorry they are going to have to see their dad go through this. But remember that kids are resilient, and they will provide your DH with even more determination to beat this beast.
Best wishes to you both.
Beth n Gary
Posted 4/16/2017 6:27 AM (GMT 0)
Hi bird8, sorry you have to be here but glad you found us. You will learn a lot from this community of patients and caregivers. Some of the responses so far should give you hope with the treatments available today. Continue reading and absorbing knowledge, that will be your best friend on this journey. Join a local support group and find the best oncologist you can to quarterback your treatment path. I wish you and your husband well on this journey. Take care and keep us posted. -JR
Posted 4/16/2017 7:42 AM (GMT 0)
Hello Nikki Bird8,
A warm welcome to you and your hubbie. You have already received a lot of great responses. Those of us on this site with advanced disease are like the general population with PC, in a minority. But regardless we are all in this fight together, with much shared knowledge here. There are others who will come to post that are going to help you along with your questions every step of the way. You already have shown that you are a devoted wife and now caregiver for your man. You are his blessing.

I would have you both stop and take a breath. Please, please, take the advice of our best and most elequent encourager here , ISU Cyclone,and go to that search box at the top of this Forum page, just under "Forum and Chat", type in the box the words "Letters to the newly Diagnosed", you will find in that post thread some comfort there. Also, just as Redwings posted, just take a look at Brother Todd Seals blog and post, diagnosed in his fortys also,he continues to be a prime inspiration for us.

As far as prognosis after his diagnosis, I worried about that too initially,as if that was the most important question. Actually, for me now, four and a half years later, I have learned that a Doctors prognosis for the future is only a guess, and for me it has already proved meaningless. You see, we are all individuals and each case is unique to each of us.

I also consider myself as my Brother Starfinder stated that we are living breathing miracles because we are currently on top of this "beast". You got to have HOPE , you got to believe that the dire forecasts will not prevail, you got to keep the Faith. That's what I do and I am doing OK right now, planning for a durable, long lasting remission. New drug therapies are "in the pipeline" and combinations of existing strong treatments are coming along and being approved. The Cleveland Center is top notch, good on you that you found it. Be vigilant, learn as much as you can to make informed decisions.
Keep us informed of what transpires. Find your peace in the center of this storm.
Wings of Eagles in So Cal (Birds of a feather ,flock together)
Posted 4/16/2017 12:48 PM (GMT 0)
Hi Nikki and welcome to our not so exclusive club. We're all here for you as they were for me when the hammer dropped.
Posted 4/16/2017 1:34 PM (GMT 0)
Dear Nikki,
I am sorry that you find yourself here but glad that you found this group. Many of us here have very difficult cases and many of us are doing very well. You will find that there are lots of treatments available to your husband and he will find the relief he needs. Wishing you both the best as you embark on this new journey.
Posted 4/16/2017 5:23 PM (GMT 0)
Dear Bird8,

I read your post and it reminded me so much of my experience when I first found out I had PCa and even more so in Feb. 2017 that it had become metastatic prostate cancer. I am so sorry that you had to find this place, because nobody wants to be here, but all those that are here offer wonderful support and the knowledge they share, thru their personal experience, is outstanding.

When I was 1st diagnosed, I came here and just read everything that I could. I never joined till February this year, when my PSA went crazy and I found out I had bone mets. I was so scared and felt I had nowhere to turn. I was Wrong!! I also thought there was no hope. I was WRONG. WRONG. WRONG. Just read some of the journey's these brothers have experienced and you will see their is plenty of hope.

The brothers on this site gave me the hope that I needed. We all will do the same for you.

You are also fortunate to have Cleveland clinic who has excellent Doctors. In the Memphis area you have the option of using your Urologist, which I do, or an Oncologist which none specialize in PCa.

In closing I will say we all wish you and your husband the best on your journey and you will be in my prayers along with my other brothers.

Lee in Tennessee
Posted 4/17/2017 3:22 AM (GMT 0)
I just want to thank you all for the outpouring of love and support you have extended our way. I will update with more detailed information as we continue forward on this journey. It is so nice to know we are not alone.

With HOPE,
Nikki
Posted 4/17/2017 3:14 PM (GMT 0)
Nikki,
You are in a good place at the Cleveland Clinic and will receive Best of Class Care. And this forum is a very good place to help you and your husband as you begin this journey.
All the best to you and yours.
Posted 4/17/2017 3:43 PM (GMT 0)
Nikki,

What a story! 44 years old, and all this comes crashing down on him, and you. You're doing the best thing possible by going to a center for excellence and getting an accurate diagnosis and plan for treatment.

There are people on this forum living with high risk prostate cancer. It doesn't sound easy, but their stories, and advice, should inspire you and give you hope.

Please know that all of us here are pulling for you.
Posted 4/17/2017 6:03 PM (GMT 0)
Welcome Nikki,
I'm so sorry that you are facing all of this, especially with young children. I have 2 kids in high school. I'm the one who does the research on behalf of my husband, partly because I have more time but I don't think he wants to dwell on it at all. This is a wonderful group and you'll obtain great answers from very, very knowledgeable people here to any of your questions.
(((big hugs)))
Posted 4/17/2017 9:04 PM (GMT 0)
Nikki

I'm a new member myself posting for my husband also. I cant offer any expert advise as we're learning as we go along also but your husband is in my thoughts and you are in the right place for sound advice and varied opinions

Wishing you the best of luck with the upcoming tests smile

Sheila x
Posted 4/18/2017 1:19 AM (GMT 0)
Nikki,
Welcome as many other have already said. The knowledge here is incredible. I think these folks give more info than some docs. My docs have all said I should have been gone two plus years ago, that is why they call it practice. I have stage four with a bunch of bone mets was diagnosed 10/2013 and I have taken the advance cancer drugs but Iam one that has chosen not to take infusion chemo. I do a bunch of natural stuff. My two cents stay calm as possible do you research, when you find something that throws you a curveball ask the guys here especially "Tall Allen" really knowledgeable guy. Stay away completely from white refined sugar, sugar is a big feeder for cancer cells. I use stevia for sweetener, almond milk with organic coffee. Stay away from anything GMO, no soda, nothing with high fructose corn syrup. My bottom line is your body has an immune system in it right? His body is trying to fight the mutated cells aka cancer cells already. so keep the blood clean and let the immune system do the work it was designed to do. Yes I did provenge last summer an advance therapy and I am still on lupron since 2/2014 and Iam on zytiga every darn day. I do believe in some of these meds. If you have a faith lean on it. It will help through tough times. I guess most of us on this site have been through the five steps of grief; denial, anger, bargaining, depression and acceptance regarding their cancer. Those are five great reasons these guys on this site are so important. We are all brothers fighting a beast. Stay strong and please dont over analyze everything, that will give you a headache.
Posted 4/18/2017 11:28 PM (GMT 0)
Generally speaking the info you find on this forum is pretty good although sometimes slanted towards a particular viewpoint. Occasionally though I see statements for which there is no solid medical or scientific evidence.
For instance, although we should limit sugar (white, brown or high-fructose corn syrup) intake, the idea that we can inhibit cancer that way is unproven. The science is way more complicated than 'sugar feeds cancer cells' (the old Warburg hypothesis)
2. The idea that Genetically Modified foods have anything to do with cancer (or disease in general) is also scientifically unproven.

Post Edited (Sr Sailor) : 4/18/2017 5:39:32 PM (GMT-6)

Posted 4/20/2017 11:44 PM (GMT 0)
Our first appointment with the oncologist is tomorrow. He called to have us come in early for the PSA test prior to our appointment. We are feeling really anxious but ready to face this monster. The waiting is pure torture. Having the ability to "check-in" with you all has helped tremendously! Thank you for that.

With HOPE,
Nikki
Posted 4/21/2017 5:14 AM (GMT 0)
Good luck tomorrow Nikki. We will await the results of the PSA and the recommendations from the MO. Getting a treatment plan in.place always helps with reducing the anxiety.
Beth
PS...@ ThomasJohn.
I can't help myself..I have to mention the chuckle I got from your typo that you are all in battle with a mammory gland. Thank you for the inadvertent giggle for today. smilewinkgrin

Post Edited (celebrate life) : 4/20/2017 11:21:56 PM (GMT-6)

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