Log in
Advanced Prostate Cancer
6,006 members5,761 posts

Stage 4 prostate cancer advice

Stage 4 prostate cancer advice

Hi my name is shauna and my fiancée who is 45 was diagnosed yesterday with stage 4 prostate cancer that has metastasized to his bones. They put him on hormone therapy. Any advice you can give on life expectancy, side effects... his doctors told him this is terminal but the goal is to put him into remission with the hormone therapy

113 Replies
oldestnewest

They usually start him with a combination of something like Lupron and Zytiga. If there are a lot of metastases, they may use docetaxel. If there are very few, radiation of the prostate may still provide some benefit. Here are some options:

pcnrv.blogspot.com/2017/06/...

Reply

He’s started his hormone therapy today 50mg of bicalutamide

1 like
Reply

Bicalutamide is usually just used temporarily to prevent a flare-up of symptoms that sometimes occurs when starting Lupron (Eligard or Zoladex). Zytiga adds greatly to survival.

1 like
Reply

His doctor wants him to do 2 weeks of the bicalutamide then they want to do hormone injections. We see an oncologist next week. We’re also considering going to Cancer Centers of America

2 likes
Reply

Instead of “terminal,” they should have said “not curable.” Your fiancé should have a long way to go. I was diagnosed at age 43, nearly 12 years ago. I’ve been stage 4 for over 8 years. There are lots of treatment options. Your fiancé should find a medical oncologist with specific experience in prostate cancer—at a major cancer center if possible. Good luck to both of you. You still have time together.

13 likes
Reply

Thank you so much we are seeing one next that was referred by his urologist. Don’t get me wrong his doctors have been great. I just want some advice.

1 like
Reply

There’s so much to think about right now, and so much anxiety. For starters, use of “terminal” is unnecessary and hurtful. Nobody’s dying next year. Even with stage 4 metastatic cancer people are talking about durable remissions, and in some cases - cure. But figuring that out is not possible or necessary right now.

So here’s my practical non-medical guide on how to get through the next month:

1. Start reading and studying. Knowledge is power - and comforting.

2. Ignore survival statistics you see on the internet. They are generally out of date, not based on current treatments, and most importantly your guy is a sample size of 1.

3. Go with him to all consultations and initial treatments. Bring a small notebook, write down questions in advance and make notes of what doctor says. Ask lots of questions.

4. Follow your doctor’s recommendation for that initial appointment with a medical oncologist, but already be thinking about that essential second opinion. Mayo Clinic and MD Anderson are at the top of most lists, but there are other centers of excellence that are great, typically teaching hospitals associated with universities.

5. Insist on a medical oncologist who specializes in prostate cancer. One size does not fit all.

6. Learn about the concept of “standard of care.” Treatments are evolving so rapidly that the standard of care typically lags behind the “state of the art,” so find out if your doctors are leaders or followers.

7. This is a highly personal decision, but think about opting for the most aggressive approaches out there. There are risks, but the benefits are huge, especially at a young age. There are different names for this approach, but my Urologist used “kitchen sink,” meaning throw everything at the disease hard and early. As more data becomes available, this approach is gaining scientific acceptance.

8 Dont be embarrassed and secretive. Feeling the warmth of support and love from people who care about you is incredibly therapeutic, but those people have to know. The ones who matter will all be there for you, just like we are virtually all here on this site for each other.

9. Last and most important, smile, love each other and live every day to the fullest.

32 likes
Reply

Thank so much we just found out yesterday after months of my fiancé having extreme lower back pain and several doctors appointments, several test being run on him. He was admitted Into the hospital this past week due to the pain and possible pneumonia

1 like
Reply

Yesterday! Wow ... you are a great advocate for your love by finding this web-cite the next day, you’re going to arm yourself with the real truth.. That’s empowering.. Great Job. He will do well with you loving him.

3 likes
Reply

Hello Canoehead! I cannot begin to tell you how wise, comforting, and valuable your response to Lagovista2018 sounded when I read it moments ago.

You are an informed, thoughtful, and articulate person to have as a resource after a PCa diagnosis.

Thank you for being here!

Mike J.

6 likes
Reply

Ditto!

Reply

What a great answer and advice for these folks

1 like
Reply

You Sir , with this great advice , have earned your name and must sit at the head of the canoe.. I thank you !

Reply

Start by using the term Incurable instead of Terminal. Terminal he definitely is not as Yost has explained. Incurable is treatable...as I am. And have been for the past 8 years. I am now 72 and rarely feel ill. My MedOnc and others also tell me I don't look ill.

A lot of what we Stage 4's go through is psychological. I don't have to keep worrying about when will I be cured?. I know it's highly unlikely so have no fears. I have taken the option of trading away certain parts of my life and lifestyle to remain cheerfully alive with a QOL that keeps me with my family and friends. God bless and remain positive for each other. David

3 likes
Reply

Great words. It IS , about trade offs isn’t it.. ? as long as we have reasons to live, we endure and share love and hope. Our stark reality is that we know who we are fighting. If we can somehow get past fighting our self. Then concentrate doing our best to keep pc at bay Fully knowing that there can be many twists and turns in the road ahead. keep on keeping on! ✌️

Reply

Yost knows.. most of us here after years of treatment were exactly at were he is at now. The initial blow is discombobulating at best. Overwhelming at first... horrifying . With time and acceptance we find the flesh is weak but our human spirit and will to endure in order to give and recieve not just physical love but all of the more important aspects of love . lots of love

Reply

Which therapies did you follow? What was your initial status, Gleason score, mets?

Reply

His urologists did a bone scan this past week and the results was that his prostate cancer metastasized to all his bones. My fiancé is 45 and healthy. His urologist said that the goal is to slow down the progression of the cancer they put him on hormone pills then will do injections in two weeks. We have an appointment with an oncologist next week, but I want to find one who specializes in prostate cancer

3 likes
Reply

You see now. That you and he are far from alone in this journey. We all are with you in hope ...

4 likes
Reply

I’ve done a lot, but the standards have changed, so I won’t rehash here. I was Gleason 7(4+3) with an initial PSA of 42. My PSA has been as low as undetectable, as high as 740 and is currently 47. I’m currently on Xtandi.

Reply

but no radiation at the prostate?

Reply

We see an oncologist this week that was referred by his urologist and we see his urologist in 2weeks. Right now his urologist has him on hormone therapy bicalutamide for 2weeks then he will start injection. His urologist didn’t mention anything about radiation or prostatectomy.. I’m guessing since it metastasized to his bones. But I want to know what a oncologist says especially one that specializes in prostate cancer

Reply

I had adjuvant radiation of the prostate bed in 2008. I’ve had three rounds of radiation to spine/rib cage for pain.

Reply

I agree. I was diagnosed with stage 4 (in most all my bones and lymph system). At 47 (I am now 50) I am on hormone therapy, bicalutamide, 6 rounds of chemo and 3 rounds of provenge. My first PSA was 1,882. I got down to .06 however it is starting to go back up last results were .18. I see my oncologist in early Dec hopefully we will try something new. My doc has never said terminal. He says incurable - but that he will keep me here for a long time. He likes to say something else will probably get me. I say keep your mans spirits up, make sure he eats good and gets rest. Keep him active try to do the fun things you guys did before diagnosed (just make sure to give home down time to rest). If he has it in his bones make sure he is on xgeva and take calcium supplements. Make sure you keep his spirits up and remove negative people from your life. He can live a good life - just needs more time to rest. Also consider using ensure to help his body recover. During chemo I did 2 ensure a day (Max - high protein low sugar). Now I do just 1 per day. Good luck.

4 likes
Reply

Keeping spirits up is Key ... well said..

Reply

They told me 4 years ago I had 1 year to live. Currently I remain in remission. Many, many members of this group were in the same situation as your fiancée 10 years ago and longer. Currently a cure for metastatic prostate cancer doesn't exist but the brainiacs are working hard to give men a chance to live a long life. It's the beginning of a new life for both of you, adjust.

8 likes
Reply

Hell yah!

1 like
Reply

Hello, diagnosed in Fall 2011. Gleason 9 and PSA of 50. Docetaxel and firmagon for 6 months then prostatectomy 2012. PSA rises soon lymph node involvement and bone metastasis, Lupron, and more chemo. 6-8 months and PSA rapidly rises again with more bone mets and lymph involvement. C-11 choline PET at Mayo Clinic pinpoints all tumors. Cryoablasion on spine and more chemo, Lupron, and Zytiga. PSA rises, now Lupron and Xtandi for 19 months. Zero PSA and under control. Xtandi is amazing except for side effects. Early retirement and enjoying every day or trying to. Point is, a lot of advanced case guys will chase this thing for years and if lucky (or blessed) have success with the drugs and buy some time.

1 like
Reply

Hey, so sorry he got hit with this, but this is a great resource for our tips/experiences and of course - cheering others on. I would suggest getting/staying fit with cardio/weights to offset the possible fat gain and muscle wasting from hormone therapy. Many on here have changed diet to low fat, lean protein(less red meat), plant based with esp cruciferous veggies - prostate.net/articles/can-b...

Have him prepare for hot flashes, mood swings and maybe some cognitive issues.

Love, support and encourage him with his upcoming treatments - he's in for a long road, but together - you two can make the best of this dreadful disease.

My story: theloopnewspaper.com/story/...

My best to you both and keep us updated.

Much Aloha - Randy

2 likes
Reply

Thank you so much. I just joined this forum today and have gotten so many wonderful responses,advice. This has definitely lifted my spirits

5 likes
Reply

We are with ya...

Reply

Thank you

Reply

Is one of the symptoms of stage 4 prostate cancer that has gone to the bone extreme lower back pain. My fiancé says it feels like sciatic nerve pain. His mom who is a nurse says it because he has diffuse bone cancer

Reply

It could be. Both drugs and radiation are possible for improving pain. You may also want to talk with a radiation oncologist.

1 like
Reply

Yes, ... my first presentation was also increasing extreme lower back pain, as you describe, which sent me to an Emergency Room 5 years ago at age 65. Tests revealed I was Very metastatic to many bones and lymph nodes, and I went on very similar initial treatments. My pain fell away within the first month, and my disease responded very well to those initial treatments for nearly 2 years, and then to some added treatments for another 3 years. I was prescribed a drug called Zometa (zoledronic acid) in regards to my bone mets; others may be prescribed another drug called Xgeva (denosumab). You might ask the doctor about such bone agents, in addition to his beginning Androgen Deprivation Therapy (ADT).

I, too, think of my Stage IV prostate cancer as technically "incurable", with currently available treatments, but quite often very "manageable" in the shorter term, particularly in the beginning. For me, it is better to go about Living today, rather than fretting so much about how I may be "dying" due to PCa or anything else. I may not ever be completely "Cured" of my disease, but I can certainly be "Healed" in many ways for as long as I live. Partners, caregivers, and friends can be just as important to that process as any medical team or treatment.

I've also found some face-to-face Prostate Cancer Support Groups to be helpful, particularly during the first year after my initial diagnosis.

Just some thoughts,

Charles

1 like
Reply

An alternative thought on lower back/sciatica like pain is mets on the hip. In particular the sacroiliac joint which puts pressure on the sciatic nerve.

Radiotherapy to the hip is an option. Or maybe mets on L1/L2 vertebrae and again radiotherapy.

I think this could be targeted.

2 likes
Reply

He just started having hip/leg pain last night for the first time. But I think he overdid it yesterday with activities that he did

Reply

I have the same problem/pain.

Lower back and feels sciatic related and yes over exertion and even standing makes it worse. It hasn’t improved for over 6 months and I have a consultation this week to discuss a treatment plan as well as Radium223.

2 likes
Reply

My father has stage 4 and mets all over specifically the back. He was experiencing extreme low back pain and they discovered a tumor that caused a compression fracture on lower spine. They did emergency radiation. He is currently in a wheelchair other tumors have formed on his spine. He has been through all the treatments even 14 rounds of docetaxel. He has been battling this disease for 10 years. You and your husband have a hard road but with todays medicine anything is possible. Stay positive and tell him to keep on fighting.

1 like
Reply

Cognitive issues? Like what

Reply

Shauna my husband was diagnosed with stage 4 Mets to bones and lymph nodes at 47 years old. What the doctors don’t share are the adverse side effects. My husband was a Chicago Firefighter for 18 years and never experienced anxiety. After hormone therapy a few months in I noticed him experiencing anxiety, depression, forgetfulness. It gets hard for him because he is someone who loves to read and to not remember things creates more anxiety. Thankfully here we have access to Medical Marijuana which has helped curb those side effects a bit. It also helps with his sleeping. Another side effect of this treatment is ED. Thankfully we’ve been blessed to have some “moments” but they are not nearly the same as it was before treatment. You will notice some shrinkage and growth of breasts.

I’m also on FB Women Affected by Stage 4 pc page and it’s also helpful.

Stay encouraged! Day by day and feel free to reach out with any questions. We also do a lot of supplements and complementary things such as High Dose Vitamin C. It’s what we choose to do and have found that it helps with his side effects as well.

3 likes
Reply

I forgot to mention, he started off with PSA or 489 and high Alk Phosphate ( I cant remember how high).

Initial treatment was Firmagon then chemo with Lupron. I would also encourage genetic and genomic testing since he is so young.

Reply

Thank you. My fiancé is retired military so some of the symptoms you described like the anxiety, short term memory he already has. He also taking multivitamin and eating things that contain Iron. Exercise is the one thing the doctor said is important

Reply

Shauna

Forgetfulness, difficulty with concentration, fatigue

Reply

Sometimes depression and memory issues, but exercise may offset that.

cancernetwork.com/asco-pros...

Reply

Hi Shauna! You win. Been doing this for over a year and a half and been waiting to hear the word terminal. First time! Was given a year and half, two and a half if I did chemo. Then they changed it to many years. Lots of good advice here and Canoehead summed it up really well.

Reply

As a wife of a man dx in his 40s and a mom of two young boys, I suggest you think about banking his sperm if you want to have children. I’m not sure why they didn’t discuss this with such a young couple.

Reply

Tall Allen might not mention this but as the wife of someone with Mets please prepare for the sexual side effects. You’ll both have to work on this and support each other. Sex may take on a whole new meaning. Don’t think of it in conventional terms. Focus on your love for each other & on pleasuring in other ways but whatever you do - USE IT OR YOU WILL LOSE IT!!

2 likes
Reply

He was diagnosed on Friday. We see an oncologist next week. I’ve gotten a lot of advice like see an oncologist who specializes in prostate cancer. We’re still going through the emotions but seeing what people who are going through the same thing on this forum makes me feel very hopeful

Reply

I see that Tall Allen has responded! He’s the expert on this site & I’m sure will give you all the information you need. You can fight this thing! Don’t ever give up or feel hopeless!

1 like
Reply

There are many well versed folks on this site. Tall Allen is certainly one of them but there are others, too.....everyone here is held in high esteem. Prostate cancer is a tough realm and everyone who is part of our community here is royalty

3 likes
Reply

look when his psa went above the normal male which is 4.0 he's stage 1, treatment of some kind stage 2, its spread somewhat stage 3 and from then one he's 4. now i have been fighting cancer for 10 years so its not going to kill him tomorrow. u need to find a aggressive oncologist. there is years of all kinds of meds and treatment before one hangs it up so don't worry. i went to a company called cancer nw there through out this country find a good oncologist and go from there. remember if your not happy with his treatments or their suggestions then find another doc there are plenty out there

charlie

1 like
Reply

That what we are going to suggest going to an oncologist who specializes in prostate cancer and then I was also looking into MD Anderson in Houston since we live in San Antonio we could drive there

Reply

I go to MD Anderson, Dr. Paul Corn is amazing!!! If you can drive there I would do it for sure!!! All he see does is prostate cancer, the place is amazing!!

2 likes
Reply

Ok that is great. Definitely going to be calling next week to make an appointment

Reply

Paul Corn? I am going to my initial consult with him in 10 days. I had no referral to him so my getting him was dumb luck. Reading your post is reassuring.

2 likes
Reply

He is amazing, nice, reassuring and works with a wonderful team!

1 like
Reply

Yeah I was referred to him by someone on this forum...I apologize I forgot his name. I’m hoping that we’re not waiting months to be seen by him

Reply

Have an appointment with Dr. Corn December 27th

2 likes
Reply

That is great! We saw him as well. I wish we had seen him earlier in my husband’s course of treatment as we would have done some things differently in regards to the order of treatments. My husband was diagnosed at 50, we thought great health...it had metastasized basically everywhere other than his organs, but including his bone marrow. We were given 3-6 months if he left the hospital. We’re at month 15. In addition to ADT he’s done chemo and now Xtandi.

Reply

My question is if it metastasized to his bones. What are the chances of it getting into the marrow. My fiancé is 45 and was diagnosed last Friday it has gone to his bones but not the marrow

Reply

It went to my husband’s marrow first and I would honestly say the chances are pretty small- it’s not a common place to metastasize. They actually thought he had leukemia first.

Reply

We also had a consult with Dr. Corn. He was great and we continue to reach out to him when in need of advice or treatment direction.

Reply

I plan on calling them this morning. I hoping we can get an appointment ASAP. We live in San Antonio and Houston is not far

Reply

Msg me I will give you my number

Reply

I am so sorry to hear this. Your fiance is so young. He must see an Oncologist asap. The hormone treatment only lasts a while. Get as much information as possible. The survival rates are much longer these days. It is not sn easy joyrney and you need to be strong and give him love and support. Go to all appointments so you know what is going on. My husband was diagnosed in April eith stage 4 with mets. We pray for more years and take it day by day. Please update on his progress.

2 likes
Reply

Given ADT only lasts a while is there a thought this could/should be stopped after a point in time?

Maybe radiotherapy of the prostate and deal with the bone mets separately.

Tad Allen may have some thoughts?

Reply

I am sorry to hear of your fiancés diagnosis but it’s difficult for people to advice on life expectancy as everyone responds to treatment differently. Treatment has come a long way and many men respond well to treatment and live many many years and unfortunately others don’t.

Live each day as fully as you can, support him and try to get some support for yourself as this will be tough on you too. just take each day as it comes. I wish you all the best.

2 likes
Reply

I’ve been living with a PCa diagnosis since November 2008, so there’s a lot of options for longevity. I’m seeing an oncologist at Cancer Treatment Centers of America in Newnan Ga and that place is full of hope. I highly recommend them (I fired my last oncologist at another prestigious cancer center afterhe told me I had about a year to live which was in Sept 2017. Only God knows how many days we have.) I strongly recommend getting and read, together the book ‘Radical Remission’ by Dr Kelly Turner PHd (she’s not a medical doctor), it’s packed full of great information and every cancer patient needs to read it. God bless you and your fiancé as you travel this uncertain but blessed road together. It’ll be a journey like none other.

3 likes
Reply

Shauna,

Since you are only three hours from MD Anderson, I would highly recommend (as previously mentioned) this hospital to help your fiancé through these difficult times.

Wishing both of you the very best...from all of us!

1 like
Reply

So sorry to hear the monster has attacked him at such a young age. 😡. I was diagnosed 27 months ago with stage 4 and Mets in my ribs,spine and lymph nodes. My doctor immediately started me on chemo, and lupron,Xgeva for the bones. Been at .005 PSA since then. Don’t give up I was given the speech that most men have a 50/50 chance on 5 years when I pressured my doctor for a answer. Read this post. A lot of good people on here that are way past the 5 years. Don’t stop living and loving as it’s the time to double down on life. Fight the good Fight

3 likes
Reply

MD Anderson is an excellent idea. Do not accept 'standard of care', it really is a disservice to otherwise healthy individuals. I'm not sure exactly what was involved in the diagnosis (MRI of prostate? Bone scan?) A standard bone scan can (most likely will) give false positives as to how many metastases there are (any bone change from injury shows up too). An Axumin PET scan is more accurate.

We are fighting this now and having some success. There are treatments evolving constantly as this is a very common cancer. And yes, people fight it for decades.

Reply

Really??? that is good to know he’s had mri of the prostate two PT scans/contrast on the pelvic area and a bone scan. His Gleason grade 5 +4. The bone scan showed that it metastasized to his bones

Reply

He could possibly have a bone biopsy, also. Standard bone scans register any abnormality in bone and it's up to the reviewing physician to determine what is prior injury, what is arthritis, etc. An Axumin (or PSMA) PET scan is better at identifying which are PC lesions. Discuss with your oncologist, and best wishes!

Reply

Okay thanks. That makes sense. He was in 2 IED accidents that did damage to his right knee and ankle

Reply

Yes, they SHOULD rule those out. Hip and back are the more common areas. Read, read, read. This cancer is different from many others in that it initially feeds off testosterone and the first defense is to eliminate that fuel, not necessarily go to surgery. Since your fiancee's cancer is very aggressive (age and metastasis) dont let them take surgery/radiation off the table...that's the 'standard of care'and doesn't necessarily serve a 45 year old well (in our case, it doesn't serve an otherwise healthy 58 year old cat diagnosis well).

Reply

That’s good to know which is why he is on the hormones..makes sense.thanks again

Reply

Hi Shauna,

You’ve already found one tool to help in the battle, this forum. Everyone on here is amazing and provides knowledge and support which are both so important. My Dad was recently diagnosed and I am so thankful for what I have gained from this forum.

As many people have noted - and before trying to figure out all the other stuff - put all of your energy into finding the best doctor in your area. We were fortunate enough to find an amazing Medical Ongologist who is a leader in advance prostate cancer here in Michigan. Trusting our Oncologist (and her team) and knowing she is aware and up to date on everything there is to fight this gives us comfort and strength.

Wish you the best! Hang in there!

1 like
Reply

Jane8889, May i ask who Your MO is? I'm also in Michigan, thank you.

1 like
Reply

Of course, happy to share. Dr. Elisabeth Heath at Karmanos in Detroit. She is wonderful!

karmanos.org/physicians/Eli...

2 likes
Reply

She is one of my doctors. She is very well informed. Dr. Caram at U of M is also very informed. Thank you.

Reply
Reply

Shauna.....you have come to the right place....I'm a relative newbie to this journey but I have learned so much here and given many recommendations for further reading and research.....the people here care because we're all on the same journey and know the up's and down's of this insidious disease.... I was diagnosed a year and 9 months ago and was frightened, depressed and had no idea what was going on....I was diagnosed with stage IV with metastases to the pelvic region.....I was initially put on hormone therapy with biculatimide and Zometa....we are about to begin Zytiga. My PSA has been undetectable (<.01) since the beginning of treatment. I actually feel great except, for me, the mild hot flashes occasionally and some memory loss and fatigue. Life goes on with "the new normal". Nutrition and exercise is the key to fighting the fatigue. I would suggest reading up on the role of nutrition in prostate cancer. I find it very important for my well-being to eat right and exercise. The people on here are the salt of the earth. They will answer any questions you have and if they don't know the answer will give suggestions of where to look. This forum has been a god-send for me in education about the disease and a lot of hope. I might also suggest you ask around or google for prostate cancer specialists in the San Antonio area since MD Anderson does have a branch in San Antonio. You might call the Houston MD Center and they may have suggestions as well for the San Antonio area. I live in Austin not far away from you and have a phone consult next week with MD Center regarding third opinion regarding my treatment. I figure the more heads the better. Please check in with this forum regularly. And may God bless you and your husband on your new journey. You have many, many days ahead. Laugh, love and live life to the fullest. Together, we can do this!!!! God bless.....

2 likes
Reply

I hope he was just being sarcastic.

Reply

That was not cool! I did report them

Reply

Again I’m getting helpful information so my fiancé and can come up with a plan. My question to you ma’am or sir is why are you on here. Do you even have or know anyone who has or had stage 4 prostate cancer or any cancer. How am I running my mouth & why do you care? If you don’t like what I have to say or ask.. then don’t read it.. it’s that simple. You don’t know my situation or what we are going through. You take a pic that I posted of myself same profile pic I have on Facebook look it up shauna nicole Shumpert... you kind of seem to be simple minded. From the stuff you posted so far it’s not really helpful or positive so again my question is why are you on this page?

Reply

This person is just simple minded so far seen nothing positive this person has had to say. I want to thank everyone who has given me helpful information.

Reply

As you see, there are many treatments available. So sorry for you both at such a young age. Thoughts and prayers for strength to get through this situation and keep a positive attitude and enjoy your relationship.

1 like
Reply

Wonderful smile.. Thank you for sharing that.. I am sorry that he has APC. 45 is brutally young. I was 53, now 57.This might just give him the strenght to prevail treatments. It not easy however, for either the host or the partner. My wife wed me with this the same dx#4 . Her love is the reason that I’m here today.. Anything is possible. Miracles happen. This is a internal battle with self for us guys. What once made “ The Man “ now will kill us ................Testasterone.. must be stopped if we are to survive... He’s going to survive treatments and live many years, .. how many ? We don’t know.. there is no cure for stage#4 APC. I’ve been clear for over three years now.. but a lot that he can do.. I went holistic on diet and nutrients.. Our best bet with APC is in the first round of treatment.. I welcome you here. Ask any question, it has an answers. Get informed so you know what is happening . The initial pain and fear was devasting to us. We cried for two weeks and I asked her to marry me with 3 tubesunder my Armani suit. Then imdiately started adt and RT..Took me down hard. I went from 232 lb confident and strong to 165 with ego shattered. I didn’t want to give up man cherished manhood. But it was that or my life. Stay in love . The wife at times have it worse than the male mule.. I pray that he gets the correct help and lives for decades.. We are all chemically altered for life.. Hope that in the near future of some cure. Keep him here to see that.... Peace to you both...Scott

Reply

His PSA is 31 when dx

Reply

Your Fiance is lucky to have you. My husband was diagnosed at age 54 with stage 4 prostate cancer with a Gleason score of 4+5 9. I am a physical therapist and have found interesting things happen to different people in many different situations. I am reading a book right now and one of the things they point out is the placebo effect. It is the finding that 30% of the people who are taking a medication that they think will help them actually turns out to be a sugar pill. However, they reacted positively to the sugar pill. The moral of that story is that we should not underestimate the power of the brain. If you believe in your treatments it can only help. Work hard to find the doctors that know their stuff. We try to have a cancer-free day each week. Live a normal life and love one another a ton. Good luck with planning your wedding and make sure to spend time planning the honeymoon!

Reply

Thank you very much

Reply

My fiancé has the same Gleason score

Reply

Stage 4 prostate cancer cannot be cured, but symptoms can be managed. If possible he should get advanced imaging such as C11 choline PET/CT scan to determine the extent of mets and how best to treat him.

Reply

That’s good to know his PSA was 31 when dx

Reply

There are many factors in play to answer your questions. What is his Gleason score? Is he having the radical prostatectomy? It sounds like maybe he should have a course of doxytaxyl chemo. My only real advise is be with a major cancer center and make sure his oncologist is a specialist in prostate or genito urinary cancer. Btw, I’m Gleason ten. DX three and a half years ago. Treated two years at National institute of health. Oh, is there a way to private message me? I’ll give you the contact info for the prostate cancer team at NIH. The feds medical research facility. Let me know.

Reply

Where you dx with stage 4 and did it metastasized to the bone if you don’t mind me asking. My fiancé is 45 with prostate cancer that has metastasized to his bones his psa was 31 he is on 2 weeks of hormone bicalutamide which is pills then injection hormone we see an oncologist next week. I’m hoping he specializes in prostate cancer.

Reply

I was fully metastatic on DX but the dr missed it and did the surgery anyway. It sounds like your fiancé is about to start lupron, the hormone blocker. That controls most metastatic prostate cancer but didn’t work on me. What area of the country do you live in? The National Institutes of Health website has the NCI National Cancer Institute within it. In the NCI site is a search engine. Put in age disease and zip code and it gives you all clinical trials at NIH and any NIH approved facility within 100 miles of you

Reply

His Gleason score is 5+4

Reply

My cancer is not that advanced so I am not much help. Sorry

Reply

In 2007 I was diagnosed with PCa and received 42 radiations. In 2011a bone scan showed metastases so I had 30 more radiations and started Lupron (every 3 months) with Casodex for 3 weeks. I stayed on Lupron (Eligard - generic) for 6 1/2 years. Now I am cancer free. I am on active surveillance with my PSA checked every 3 months and it is 0.00. I have had several side effects from Lupron and my life (sex life) is not the same, but I am alive. That is my experience and I wish him well with his decision.

Reply

Welcome to our forum Shauna. I am so sorry that your fiancee and yourself have to experience this. However, as many have suggested there is a lot to hope for and potentially many good years ahead.

There are several good books on prostate cancer. I particularly appreciated Patrick Welch's book:

Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

amazon.com/dp/1538727471/re...

Chapters 12 & 13 are particular helpful for advanced PCa and treatment options but the rest of the book is also useful.

We don't need to explain to you that getting support from others is important. It only took you one day to reach out to this group! As some have mentioned there are probably also support groups close to you. I would also encourage you to reach out to the cancer center you are working with to get a "professional ear". The better cancer centers all understand that this is a huge emotional trauma and offer cancer social workers/therapists to help you (usually for free BTW). They are really great. Just let your doctor know that you are upset and would like to talk to somebody.

You have already demonstrated that you will be a good advocate. This is SO important in fighting cancer. Learn what you can and don't be afraid to ask for what you need. Get second opinions. Do NOT worry about hurting your doctor's feelings. They understand your need to make sure you are getting the best care.

As many folks have mentioned early in this thread, getting the right people to treat your fiancee is really important. Fighting advanced cancer warrants going to the "experts" for care. Centers like Mayo, MD Anderson, Sloan Kettering, etc. make a big difference. There are others but it sounds like you are close to MD Anderson which is awesome. Don't feel like you need to compromise.

We are all here with you. Hang in there.

2 likes
Reply

to Lagovista2018: Greetings! You said that "his doctors told him this is terminal". Tell that doctor that everyone's life it terminal. Your fiance will do just fine. As you said "get a good oncologist that specializes in Pca". My hobby is laughter so I suggest that both of you laugh as hard and as much as possible. Take him to river walk and treat him to a nice dinner. Don't forget to LAUGH LAUGH LAUGH.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 11/18/2018 10:33 PM EST

1 like
Reply

I have nothing to add to the excellent suggestions you have been getting after you posted. Please get to a urologic oncologist ASAP. There are lost of tools in the toolkit, including abiraterone as mentioned by Tall_Allen and others. There's emerging evidence that radiation is effective for men with <5 mets. So much more.

Welcome to this site and God bless you.

1 like
Reply

Hi Shauna. My husband was diagnosed with Stage IV in early 2017, so I probably know a little about how you're feeling. This site will provide you with a wealth of information as well as support, friendship and yes, even some humor.

Please don't think about life expectancy. For one thing, like my husband, your guy is much younger than the average and likely much stronger and able to withstand aggressive treatment if needed.

My one piece of advice (besides doing tons of research) is to create a binder that will contain all your research, notes, etc. I have bookmarks on my computer, but love the binder because it is tangible evidence that I am contributing in some way. May sound corny, but it's true. :) Try to go to every doc visit with your guy, and take notes there, too.

You're fortunate that your that close to MD Anderson. I'd certainly head there for a second opinion even if you two really like your local docs.

You might want to check in on the Prostate Cancer Caregivers community too, at some point.

Wishing you the best. Please keep us posted! I'm also here if you want to ask any questions privately.

1 like
Reply

Thank you so much. I know we have a long road ahead. I’ve been doing research since his diagnosis. Even though his urologist has been great he’s not an oncologist some of the questions that I have I’m going to ask the oncologist. We have an appointment with MD Anderson in late December he goes back to the urologist next week for postop and then they are going to start in on hormone injections. Right now he’s on hormone pills

Reply

I don't want to hijack your post, Lagovista2018, but it appears that we boarded the same boat for the same ugly voyage at the same time, so all this information is extremely helpful to me and my husband as well. Thank you to all who have posted advice and encouraging words. My healthy 58 year old husband was diagnosed with stage 4 mets on Oct. 29. He just had a bone scan yesterday so we don't have the results yet--very frustrating--but the CT scan showed "suspicious spots" on two of his vertebrae. He has had horrible pain in his back, hip and leg since Sept, albeit transient. His Gleason was 9. The disease runs all through 3 generations in his family. He has taken the Casadex and just had his first Lupron shot last Thursday. Other than that, no one seems to be in a hurry to do anything. Our local oncologist hasn't even scheduled a f.u. appt to go over the bone scan or to put husband on Zytyga--weird! Now he's out of town (of course). Getting a response from MD Anderson has been like pulling teeth--the lack of interest and empathy from the admissions rep has been appalling---but finally got an appt. with Dr Corn on Dec 27 which seems like a long time to wait when you have Stage 4 mets. Houston isn't easy for us; we live in Cincinnati area. We do have an appt. at Cleveland Clinic on Tuesday. (They have been very accomodating and they are an easy trip/flight.) Sloan/Kettering only takes two insurances--strange--so we aren't sure that is a possibility, although the work they are doing there sounds promising. Haven't really checked out Mayo; it would be the hardest to travel to probably. Thing is, we are looking for the BEST dr., not necessarily the best reputed hospital.

SECOND, my husband has a big complication in that he was diagnosed with acute prostatitis at the same time as the cancer. They at first thought he was septic but that got ruled out quickly. Still, he's been on IV "scorched earth" antibiotics for a month which have caused diarrhea and dietary challenges. That, along with the cancer, has caused husband to lose 30 lbs. in about 6 weeks. He looks like a scarecrow and is probably anemic. He can barely take a shower; he pants all the time which is scary. His primary care dr is an idiot. He's the one who missed the cancer for God knows how long and told my husband he didn't need to see a urologist for regular checks despite his family history. Has anyone ever had this additional complication or heard of it and have any tips as to what to do to boost my husband's constitution to battle this disease?

Reply

Don’t lose faith Mohopes. We have an appointment on December 27th as well hopefully we can all meet in person unfortunately it’s under these circumstances. If your husband is anemic his numbers should be at a 12 if it’s under 7 they will give him blood. They did that to my fiancé. He’s also on anti nausea medication daily. The only complication my fiancé had besides the lower back pain which is now controlled with hydrocodone with ibuprofen. We’re still waiting to hear from the prostate cancer oncologist here in San Antonio

Reply

Lagovista2018, yes, maybe we'll meet in the waiting room! Right now, though, I don't know if my husband will last that long. No food stays in him--diarrhea drops it right through. He had his first Lupron shot a week ago and since then he's been having fevers of increasing intensity every night and pain. Last night he was in agony and didn't sleep all night. He said it was the worst night of his entire life; he could not imagine such pain. He said it felt like there wasn't room for all his organs in his body, that everything inside was being compressed. I don't know if the pain was a side effect of the Lupron, the cancer in the bones, the cancer reacting to the withdrawl of testosterone or what! He has nothing for pain except Tramadol which he is afraid to take too often because he is afraid of addiction but last night he took two. I actually have some oxycodone put away from when I had bone surgery last year. I've been tempted to give him one but I'm afraid he'll want it all the time and then we'll have another problem. We see Cleveland Clinic on Tuesday--at least we'll see SOME dr.--his local MO went on vacation till Monday without even giving him the bone scan results(!)---but I'm afraid I won't be able to get him there. Travelling out of town for treatment could be a real problem for us if this is how it will be. Furthermore, we're finding that insurance "in network" hospitals are a problem which is really galling because my husband's firm (which he owns) just switched to this insurance in May. All the insurance companies we've had in the past consider all the major cancer research hospitals "in network". I don't believe this nightmare!

Reply

They put my fiancé on tramadol and it didn’t work in fact, it made him sick. Like your husband he couldn’t sleep at night because of the pain. The doctors tried a series of pain medications and the only thing that works for him is hydrocodone w/ ibuprofen. I would definitely go back to your doctor and tell them that the tramadol isn’t working for your husband. As for the insurance because we’ve run into some of the same issues. I would call the insurance company that you have and ask to speak with a case manager..so they know what’s going on plus any issues that you have you would just talk to this one person.

Reply

From a SA Native..... you have received some excellent advice. I thought that I throw in the following. MD Anderson is an excellent facility. However, don’t overlook the entire Texas Medical Center. I started at Methodist and Baylor College of Medicine in 2004. Moved over to Memorial Hermann and the UT medical school in 2009 only because my Medical Oncologist moved. I will follow him wherever he goes. BTW, he was once at MD Anderson. All of the major treatment for Metastatic Prostate Cancer pros know each other at the TMC and coordinate research and methodology. So wherever he ends up is great.

I see a lot of advertisement o CC of A, I do not know anything about them other than they are a for profit facility. I went the academic route since it was readily available and these guys/gals teach the private practitioners. I have friends and relatives undergoing cancer treatment at several different facilities within the TMC complex. All are happy.

Last comment from my biased self, although having a person who I like treatment to me academia is where I went for aggressive treatment. At 71, I have not regretted my path one iota. As two Radiation Oncologists told me back in 2004, it is tgevoath with which they would do if they were in my shoes. Good luck and may he have years on undectable PSA readings whikecknicking out the metastatic lesions. Early aggressive treatment, in my opinion, it the way to proceed.

Gourd Dancer

Reply

Hi Shauna,

Huge bummer. Everyone else has told you lots of good stuff and tons of statistics and treatment options. I am here to tell you something else. 12+ years ago I was diagnosed with advanced disease. My PSA was over 3200. The cancer had spread to my bones lungs lymph nodes and brain. I am still here and doing well. There is hope

1 like
Reply

Thank you mike had his 1st hormone injection (Trelstar) and he starts chemo therapy on Monday. The oncologist is going to put him on carbobplatin. Has anyone had this chemo and how well was the response and did anyone have any major side effects to it

Reply

You may also like...