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Posted 1/21/2016 2:20 AM (GMT 0)
My story:
In May 2014 I found out that I had prostate cancer and, as I am sure a lot of you know what I mean, I was literally in shock! I felt great, had no symptoms, worked out regularly (I could bench press 350lbs. on a pretty small frame), and was enjoying life. This really knocked me on my butt. I consulted my urologist who suggested surgery. I spoke with a radiation oncologist who suggested HT, Brachytherapy, and radiation. I then spoke with another urologist in Pittsburgh and decided he was the best to perform an open RP. I recovered nicely but it wasn't until I heard my PSA was undetectable that I felt like a winner. Ultimately, I physically recovered and never had incontinence but it took 6 months to really feel like I had a new normal. I ended up changing my workouts and diet drastically. I lost 55 lbs to a more tone 155lbs. I no longer ate red meat, only whole grains, no milk products, drinking only water and O'Doul's, and cutting out as much fat and sugar as possible all on my quest to defeat this beast. My wife has been wonderful in preparing my daily fruit intake.

Unfortunately, nearly a year to my surgery date, my PSA was no longer undetectable and rose to .1 on two separate tests. I was referred to a radiation oncologist (who I initially consulted with) and we immediately began SRT. I had hope again! After 3 months and in January 2016, I learned my PSA was now 1.29. WOW! That was quite a jump from .1 six months earlier.

My urologist is obviously suggesting HT and speaking with a medical oncologist.

My radiation oncologist is wanting to wait until the PSA hits 10 to start HT.

After reading about Tommy Archer and his success at the Mayo Clinic and the Choline C-11 scans, I asked my urologist if he felt that I had any hope from this. He said his personal opinion was that I would be doing unnecessary testing that would more than likely not benefit me.

I am just searching for hope. At 47, I don't want to have an outlook that I am going to be dying soon. I hate thinking about the side effects of HT or Chemo. I was generally a confident man and then this hit. Now, how can one be confident. Don't get me wrong, I know we all will die. I am just not ready for it. I have two teenage boys that I am not ready to depart from. THEY NEED ME! I need them. They are everything to me!

Basically, I know there are a lot of experts on here and there has been a lot of good advice. I've been reading as a quite, non-member for the past year and a half. Now I seek your feedback.

I am told there won't be a cure. It can be managed for an unknown period. 5 years? 10 years? 15-20 are unlikely! But, doesn't anyone know of new tests that can offer the hope I seek? I haven't slept well in days and wake up and can't get these confused thoughts out of my head. I am not depressed. I am sad about my situation and confused about any next recourse.

Any advice and help would be much appreciated!
Posted 1/21/2016 4:44 AM (GMT 0)
Hi There:
I read you story with a sense of real sorrow because you're obviously feeling pretty low. Most of the guys on this site knows what that feels like. However, from reading your story, its way too early for you to be throwing in the towel and deciding there's no prospect of a cure. Plenty of guys have had a psa bounce after radiation therapy and, hopefully, they will come on board and tell you their story. More than anything though, and working from my own experience, you really need to get a second opinion from one of the top cancer centers in the country. You need to get a referral to a Medical Oncologist at JH or MSK or somewhere of that caliber. I believe almost every guy on this site, especially with aggressive disease like we have, will wholeheartedly agree with that. If you need help on that score, you just need to ask and the guys on the east coast will chime in with the names of the top guys in the leading cancer centers. I believe this is something you really must do. I live in Hawaii and got a second opinion from MD Anderson in Houston that completely changed my course of treatment. So don't give up - just get going. I will keep you in my prayers.
Simon
Posted 1/21/2016 4:50 AM (GMT 0)
Hello !

I just want to welcome you here --- you're going to find a welcoming band of brothers ... and sisters ... among us here to encourage you and support you. Sounds like you've been reading here for a while, and I'm THANKFUL that you've just shared your first post --- that's an important first step. Let me guess ... it felt good to post your story, didn't it ? That's the first big step in seeking some great support here ...

Thanks for sharing your story --- you've been active in your treatments, setting some goals for your future, keeping your family in mind, done a LOT of things to promote your health with diet and exercise --- and you're still facing forward with determination !

It sounds like you've got a medical team in place. That's great --- do everything you can to stay closely connected with them, ask those pointed questions, get a battle plan put together, and it can be wise to seek a second opinion.

There's a band of us here in your same age group. We're here to support you. Your story resonated with me immediately.

I was also diagnosed in my 40s, but with advanced prostate cancer in my case, already spread to both lungs in 2013, with a PSA over 100 at the time of my diagnosis. I was told that surgery was not an option in my case, as it was for you. I've been on continuous hormone therapy shots ever since diagnosis, with a series of Taxotere chemotherapy treatments given in 2014, and now I'm on one of the newer breakthrough drugs called ZYTIGA --- all of these treatments given to suppress my PSA to the fullest extent possible.

You mentioned adding a medical oncologist to your medical team. I think that's a very important step --- when I was first diagnosed, I started off my hormone shot treatments with my urologist. Soon enough, I added an oncologist to my medical team --- that was an important turning point in my care plan. In my case, my urologist and my oncologist work TOGETHER as a team, both receiving my lab results, both communicating with each other at the same hospital, and BOTH having input into my case. My oncologist had some new ideas on adjusting my hormone therapy shots, and then he oversaw my chemo treatments.

I appreciate having the expertise of both of them on my case and consider myself fortunate to see teamwork like that in action. They both are concerned about me, care deeply about me, and both would move heaven and earth to help me. Together, they have both worked some small miracles in my case. I have a lot of gratitude for that and give thanks every day for the doctors in my life. Having a good medical team can become an important lifeline. Seek out the BEST you can find ...

As time went by, I decided to seek a second opinion with the full encouragement of my local doctors, because I realized my case has some complexities. With that in mind, in the fall of 2015, I underwent some additional tests and scans at Mayo Clinic in Rochester, Minnesota, including the CHOLINE-PET scan that you mentioned in your post. I then consulted with Dr. Eugene KWON at Mayo Clinic, and he has agreed to join my medical "team" with full support from my local urologist and medical oncologist.

I just wanted you to know you are not ever alone in this battle. I'm working on three years into this battle, pursuing my full-time career, staying active, exercising, volunteering, and staying connected with my friends, family, and faith. It sounds like you are doing the same, and I think staying ACTIVE, both physically and mentally, is a big part of keeping your head in the game. Sure, there are rough spots along the way --- we all acknowledge the challenges that you mentioned in your post --- but it sounds like you've DEFINITELY got a fighting spirit and that plays a HUGE part in dealing with this on a daily basis.

This website is a GREAT place to connect --- but also do everything you can to find some trusted confidantes who you can talk to when you need to --- some special people in your life who you can truly trust to REALLY talk to when you need to about this --- a neighbor, a brother, a work colleague, an old classmate ... and there are tremendous support groups in action, if that suits you ... it's important to stay connected with someone else who understands your situation --- so reach out in every way that you can to have that network of support in your life --- and posting here today is a GREAT way of reaching out !

I want to encourage you to stay connected here --- keep in touch --- keep asking questions --- keep posting. You've already got a story and you have told it well and included us in your journey. As well, you've already got some insightful experiences that can be of help to others here --- so I encourage you to continue sharing your experiences and advice and expertise with others in the future.

Let us hear from you again soon --- and I just wanted to welcome you as a new "brother" here today !

Sent with my very best,

"Cyclone" From Iowa State

Post Edited (ISU-CycloneFan) : 1/20/2016 10:07:15 PM (GMT-7)

Posted 1/21/2016 7:00 AM (GMT 0)
I really can't add anything to what Cyclone and Simon have already said in terms of advice for tx, but as the wife of a fellow G9 with widespread bone mets at dx (and now liver mets too), I can tell you that new treatments have come available since Gary was dx' d 5 yrs ago with a terrible prognosis, and there are promising clinical trials going on too.
You have every reason to remain optimistic that you will be there for your guys and that you will add Grandpa to that list one day as well.
Welcome and best wishes.
Beth n Gary
Posted 1/21/2016 1:38 PM (GMT 0)
We all understand your emotions as we have walked in your shoes.

Hormone therapy isn't that awful - it's more annoying than anything else and the hot flashes can be controlled. I asked my radiation oncologist what happens if my PSA rises after ART/ADT and she said I would have to go back on Lupron.
Posted 1/21/2016 2:31 PM (GMT 0)
Yup. Another sleepless night. At least I had your responses to read at 3A. And, thanks to those who responded so quickly.

@celebrate life, you hit a real cord with me. Grandpa is something I want to achieve. This was something I was looking forward to down the road. But, I am likely 10 years out from this. Another reason this is so emotional for me.

@John_TX, I appreciate hearing about HT. This is also something that has been weighing heavily on my mind.

@ISU-CycloneFan, thanks for your inspiring words. I'd like to know your opinion about Mayo Clinic and if it would be worth my while? My urologist doesn't think so. I have yet to ask my oncologist.

@Hawaii3654, MSK is about 9 hours away, so likely a flight. JH is about 5. Mayo and MDA are flight. I know someone who went to Cleveland Clinic, nearly 3 hours away, but I don't hear much about their prostate cancer treatments on here. So, they all except MSK and CC are flights. I'd like your opinion on the best for me.

Ultimately, I would like to reach out to the one who gives me the best chances and who will work with my urologist and oncologist. There is so much confusing information out there and nothing that really says Mayo is the best for your circumstance or MDA is or MSK is or CC. My urologist trained under Dr. Walsh at JH but he personally doesn't feel Mayo would help and I'd suspect that he feels the same for the others based on my large PSA increase in 6 months.

Any guidance is appreciated. I need to find some resolve to help ease my fears.
Posted 1/21/2016 2:47 PM (GMT 0)
Welcome from another G9. My psa is rising again, but I have yet to start secondary treatment. I just starting down that path. Anyways, you asked about different test. Here is one you might be interested in. It's called the Decipher test and it will give you some pretty accurate probabilities by testing the gene samples from your removed prostate.

/genomedx.com/decipher-test/decipher-prostate-cancer-test/
Posted 1/21/2016 5:39 PM (GMT 0)
DadFather,
Not good that you're losing so much sleep. You will probably feel better about it all once you get a plan of action in place, but until then you might want to talk to your doc about the sleeplessness. It's hard to get through the day in a fog, huh?
Hang in there! You are being proactive in your tx, and that's all you can really do for now. But everyone here will keep chearing you on. Try not to despair. There is hope!
Beth
Posted 1/21/2016 8:28 PM (GMT 0)
Because of your young age and good physical health, it probably makes good sense that you pursue this aggressively. You have done it so far. There is some chance you can "hunt down" the escaped PC cells. Sometimes they are hiding out in 1 or 2 lymph nodes. You had the right idea to go down the scan route. There are several novel scanning techniques and technologies, that hopefully someone here can talk about. Not sure where you live, but Dattoli center in Florida is famous for its work. You also need one of the top 10 prostate cancer oncologists, please get yourself a top expert, it does make a difference. There are also some PC trials for exactly this situation, rising PSA without mets, perhaps you can combine scan+radiation+clinical trial of some sorts....Get a great PC oncologist on your side. We are with you.
Posted 1/21/2016 8:50 PM (GMT 0)
DadFather -

You've exhausted all the standard curative options, but prostate cancer can be a long-term manageable disease for a long time.

I agree that imaging tests probably won't change your treatment alternatives right now. There are some better PET scans than the one at Mayo (C-11 Choline) that are available in clinical trials. But if they find mets - what then? If only in the pelvic lymph nodes, they may be able to remove them all (Mayo has a good program for that), or they may be able to zap them with 3-5 SBRT treatments, depending on where the SRT was and your anatomy. That may slow the cancer down, even if it doesn't stop it entirely. But there are treatment risks associated with that.

With your rapidly doubling PSA, which probably indicates that the cancer is micro-metastatic and systemic, hormone therapy will be able to slow it down. No one can say with any confidence if beginning it sooner is better than later.

There are clinical trials you may qualify for - ask your medical oncologist. Some test for exotic biomarkers, like PARP1, that you would get if you qualify. I don't know of any other tests that might change your treatment. I think you do qualify for the new clinical trial at NIH of ProstvacVF, an immunotherapy. I recently posted about it. They pick up travel, accommodation, and all other costs.

Prostvac trial for non-metastatic, hormone sensitive, recurrent PC

Another possibility is medical tourism. They are doing some very interesting things with targeted nuclear medicine at the University of Heidelberg that may work with systemic micro-metastatic PC.

- Allen
Posted 1/22/2016 3:15 AM (GMT 0)
Really sorry to see such a young guy get the Gleason 9 beast!! Really sucks! All I can say is you need to treat it aggressively. I highly recommend you contact Dattoli Cancer Ctr in Sarasota which treats only prostate cancer and sees guys like you and me from around the world. Dr D confers with Dr Snuffy Myers who treats advanced cases like ours. As you can see below I just had RT to all pelvic lymph nodes after two were found suspicious by MRI at Sand Lake Imaging.
Bob
Posted 1/22/2016 4:30 AM (GMT 0)
Hi There:
Sorry for the delay in getting back to you. I totally agree with Cyclone that Eugene Kwon at Mayo would be a great person for you to get a second opinion (and potentially treatment) from. He is renowned for his aggressive and relentless approach to aggressive pca. Also has the CHOLINE-PET Scan which, right now, may be useful for you. At MD Anderson in Houston I can personally speak for Paul Corn (my MO) and Christopher Logothetis. At MSK everyone speaks highly of Howard Scher and Michael Morris. At JH, Michael Carducci and Mario Eisenberger. At your age, I really believe you have to pursue a cure and not only go after a second opinion but an MO and team that will treat you with curative intent.
Should you wish, you can reach me by e-mail.
Posted 1/22/2016 4:40 AM (GMT 0)
It usually boils down to what your insurance company is willing to pay for..First, I would try to get one of the high resolution scans approved..See if the location of the cancer shows up...If the mets are small and localized, zap them with cyberknife radiation treatment. Find the cancer and kill it is always sound advise..Will it cure you? Probably not. But it will certainly slow it down...Look into getting Zytiga approved, a very effective (usually) form of HT. Because it's so expensive, insurance companies will refuse to pay for it as long as possible..Usually, a strict set of conditions must be met before you are eligible for it...But keep it in mind...Same goes for Xtandi which is even more expensive..Best of luck to you....
Posted 1/22/2016 5:54 AM (GMT 0)
In all due respect to Fairwind, who is stating the facts, I believe that your life is more important than the debt from saving your life. Nothing means anything if you try to save money and lose your life!

I'm sorry, and I don't mean to pick on Fairwind, but I have known very close friends who were super conservative with their money and their choice of low cost cancer doctors.

In every case, after they died, their irresponsible and spendthrift relatives ended up with the money that they thought that they were saving.
Posted 1/22/2016 6:41 AM (GMT 0)
ASAdvocate, none of those medicines "save your life." They may add a few months IF they are used at the appropriate time - it is not at all clear yet what point is too early to be of any use, and what point is optimum. These meds can run into hundreds of thousands of dollars, and some of us can't access that kind of cash, so insurance paying for it certainly is a big deal.

I don't agree with Fairwind that any kind of radiation will "certainly" slow it down - that is a hope, which I share, in spite of lack of evidence. In studies so far, only 15% remained free of distant mets for 5 years, even after multiple zaps. And the trend is toward even less than that with longer follow up. The median time to detection of mets (using a bone scan) after RP failure is 8 years, and possibly even longer following SRT. So it is not all clear that anything has been gained by earlier detection of mets with sophisticated imaging and zapping them. It becomes a judgment call of potential risks against potential rewards.

- Allen
Posted 2/7/2016 7:46 PM (GMT 0)
Dear DadFatherPCa,

Just wanted to respond to your post and check in with you. You've had some responses already, and you can see the care and support of this "Band Of Brothers ... And Sisters" --- in action.

It's SUPER BOWL Sunday --- hope you and your sons are gathered around the football game today.

Meanwhile --- have you gotten a medical team assembled now to your satisfaction? I have been thinking about you, and wondering how you have been doing lately.

From your posts, I can definitely see that you had interest in seeking a second opinion, realizing that your case has some complexities. Fortunately, we have rave reviews from our members here, telling us about the outstanding medical facilities and insightful doctors, from every region and corner of this great country of ours.
So --- if you are leaning towards the idea of a second opinion, just to add an additional layer of expertise to your case, it might then put your mind at ease to know that you are doing EVERYTHING you can to maintain your health.

My local doctors have a very wise saying. I'll share it with you, as they have shared it with me: "Every GREAT doctor will ALWAYS encourage you to get a second opinion." When I decided to seek additional expertise, my local doctors whole-heartedly encouraged me to do that. It seemed like a big step at the time, but I finally felt like I needed to do EVERYTHING I could think of to maintain my health --- the sentiment in my mind being "Go BIG, Or Go Home" ---

I will say that after I made the decision to get the second opinion, I slept better at night, because it was when I returned home after those couple of days, I honestly felt then that I was doing EVERYTHING in my power to maintain my health. For my particular case, I also realized that I wanted to consult with an additional doctor who SPECIALIZED in prostate cancer. My local care is outstanding and I wouldn't trade my local doctors for all the tea in China and I have a close bond with them. They have continued to work small miracles in my case, time and time again, for which I am grateful every single day. However, I am treated at a smaller hospital and my local doctors know that my case has some complexities, that they don't typically see.

A fellow prostate cancer BATTLE BROTHER and great friend of mine wisely asked me, "Are you being LIMITED by your LOYALTIES to your local doctors?" I AM very loyal to my doctors --- they have moved heaven and earth to help me --- yet my friend's words really resonated with me --- was I being LIMITED by my LOYALTIES? I couldn't get those words out of my head ... and I suddenly realized there was everything to be gained from seeking a second opinion, and nothing to lose ...

Across this great country of ours, there are many talented urologists --- there are many talented oncologists --- but I wanted to consult with a "urology oncologist" who specifically dealt with prostate cancer. I also sought out a urology oncologist who is conducting active research, participating actively in clinical trials, and who is willing to "think outside the box" in terms of advanced treatments that I might need to pursue in the future.

These were just some thoughts that went into my decision-making. I didn't want anyone making this decision for me --- it is very much an INDIVIDUAL decision --- it's what YOU want to do that matters the most --- but from your posts, I sense that you are considering a second opinion. I thought that sharing what formed my interest in pursuing a consultation with an additional expert in the field of prostate cancer might be helpful to share with you, since we have some common threads in our story.

In the end, seeking a second opinion took only a couple of days --- I drove up one day, had tests the next day, stayed a couple of nights in a hotel, had my final consultation on the last day, and then drove home. You have mentioned some sleepless nights in your post --- I can honestly say, it put my mind at ease when I drove home --- finally KNOWING that I had done EVERYTHING that I could think of to maintain my health, looking down the road. All the case notes from my scans and consultations were ALSO sent to my local doctors, which they were pleased to receive. I can honestly say that I went home with some new ideas, some new treatment possibilities, and some new perspectives.

I also realized I owed it to my family members, friends, colleagues, and the students that I teach each day in my school classroom to do EVERYTHING I could think of to pursue the greatest level of health that I could. I've got a lot of great people in my life and I suddenly realized I owed it to THEM to seek additional expertise in my medical case. They're all in this battle, right alongside me ... supporting me every step of the way. When I thought about it in that way, I knew I just needed to add one more step to what I had been doing --- and that was seeking the second opinion.

Since then, some BATTLE BROTHERS who are personal friends of mine living in this area have since followed this same course of action, seeking a second opinion from an additional prostate cancer specialist. At Mayo Clinic, they have recently asked my permission to add my case notes to their "medical data pool" in the interest of helping other patients down the road who might have a case similar to mine. I gladly signed that permission form, hoping that collectively with other prostate cancer patients, that data will help others in the future.

Anyway --- hoping this finds you doing well. I was thinking about you today and wanted to let you know you have the support of others here on this forum !

Sent with my best,
"Cyclone" From The Land Of Iowa State
Posted 2/7/2016 8:17 PM (GMT 0)
Dadfatherpc, i somehow missed this thread when you first posted. Not much i can add to whats been said, you've gotten great info. I've heard amazing things about Mayo in general, and Dr Kwon in particular has a solid rep.
To the extent that its within your means, i think you spare no expense in finding the best treatment and treatment team possible.
You probably have already seen the many amazing success stories from other G9ers here.
Good luck, hope we hear from you again soon and find that you have regained your footing.
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