Well I had another bone scan (prior scan negative) due to some lower back pain and it came back positive for metastasis in the left proximal femur. I have not started any treatment yet since my prostatectomy Dec.6. I meet with the Radiation oncologist March 1st and then with my Urologist for the treatment plan.
I am just having issues holding it together after finding out this morning. I know alot of you out there have had similar news yourself. What do I do now?
You need a medical oncologist on the team, and right away...
Stop seeing the urologist for your cancer. Start seeing a oncologist. He or she will be much more qualified to get a treatment plan for your long term health. I know this information is devastating but it's not the end of the world. With proper treatment you'll have many more years to go!
Thank you Gary - My urologist is from Vanderbilt University and specializes in Prostate cancer. vicc.org/dd/display.php?per...
I feel good about his expertise and he may refer me to a med onc. I am not sure what he has planned just yet.
I think when I say "What do I do now?" I am really asking how have others handled similar news? How do you stay strong? I am heartbroken. I found out this morning and started to cry right before my wife went to work. I don't want her or the kids upset. I need to be stronger but the reality of all this is really messing with my head.
Your urologists credentials look pretty impressive. Take a serious look at going for the aggressive plan rather than the “let’s try this and see what happens”. Focus on what your team can do to beat this. Try to live each day with a purpose. For me I turned to God, got baptized and asked Him for the strength to deal with this and He gave it to me. It worked for me. The shock of the initial diagnosis will fade. You can do this.
Thank you
Dr. Penson is fantastic and immensely qualified! My husband sees him. Kristin Ancell was hubby's MO during Taxotere treatment,and she's great. We researched all options before choosing Vandy and Penson, and even otherdoctors told us that we couldn't find better care anywhere in the country. Let the quality of care you will receive give you some peace of mind. I know it's a very scary time, but there's so many treatment options. You are not anywhere near finished with this life!
Thank you so much! That is good to know. I am glad you shared that with me. I really like him. He has a great personality and has been very reassuring that I can manage this for sometime. The free valet parking is also a huge benefit. 
You're welcome. 😁 Free valet parking is the bomb!
Go ahead and cry, I did my share after doing everything right in my lifestyle 😢. As they have said above get aggressive, my oncologist went straight to chemo 6 rounds. No fun but got better as we figured out the pain meds. Then have been on Xtandi a anticancer drug plus lupro and Xgeva monthly. PSA at .005 Don’t stop making plans I know that’s hard to do but as my doctor said no one wants cancer But there’s never been a better time to have it 😀
Hang in there, we know exactly what you are going through. I went through the initial shock almost exactly one year ago. Had a bone scan that showed "mets" from head to toe. Went right to stage 4, skipped over 1,2 and 3. PSA of 463 at diagnosis. I had to take opiate-based meds for the pain, it was terrible.
I was equally shocked by my onologist's response of "this is something we can manage" She didn't even talk in terms of treatment, it was management. Here I am 1 year later, PSA under .5 and no pain. My life is normal except for the side effects of ADT which are very tolerable.
I did early chemotherapy which is a more agressive approach based on the results of two big trials (CHAARTED and STAMPEDE) Those trials showed a 13 month survival benefit and a 17 month benefit for large tumor burdens like mine.
I know it's hard, but don't despair. Prostate cancer is one of the most treatable cancers there is. Keep us posted on your progress and know that we are with you.
Thank you
Tcp, no need to panic. What Gregg outlined is very beneficial and a good resource. I went through the same treatment as Gregg. My PSA is currently at 0.2 a far cry from my original dx at 415 on March 2017. Please see an Oncologist asap. Myself and others can fill you in on how we've responded and dealt with the treatments. I am feeling great right now. Keep us posted.
Nick
Thank you Nick. I am glad to hear that. I will let everyone know how the next few weeks pan out.
TCP, First do not panic, You already had the advantage of having the Prostate out. As a message of hope I will tell you that almost 12 years ago I was diagnosed with Gleason 10 , Bpsa 148, with widespead metastatic disease, currently returning from vacation in Florida. Those that said you are now in the realm of a medical Oncologist are correct, once the surgery is done , You should be managed by a medical Oncologist , preferably one specializing in prostate Cancer, Though your urologist credentials looked impressive, I did not see anything in there on the treatment of metastatic cancer, and he does handle other cancers as well .They will likely put you on Hormone deprivation therapy, This may very well decrease any mets you have and you may have many years. I do remember the feeling of being diagnosed, I was very tearful and scared , so this is normal, as time goes on, and treatments show improvements it gets better. There3 has been so much new in Metastatic prostate cancer in just he past 7 years, and so much new to come in the next 7. Try to be positive, Learn all you can!! What was your gleason score and psa at diagnosis? What is your current psa?We are all here for you and please keep us posted on how things are going.
Dan
Thank you Dan. Gleason7 and PSA of 15 pre surgery. Gleason 9 and psa of .14 6 weeks post op.
Sorry to hear about the cancer become metastatic. We all went for a big panic when we learnt that the cancer was spreading. Now you have to fight, there many treatments available which can control the disease process.
Possible treatments are:
- Androgen deprivation with lupron or similar associated with abiraterone , if you are not already in ADT.
-Chemo
-Enzalutamide which is another anti androgen.
-Provenge vaccine
- If the cancer is PSMA positive it can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.
There are at least 3 clinical trials going on for castration resistant metastatic prostate cancer.
clinicaltrials.gov/ct2/resu...
The first things is to determine if the mestastasis are PSMA positive.
A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:
clinicaltrials.gov/ct2/show...
Contact: Johannes Czernin 310-206-3226
My treatment was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.
The treatment can kill cancer cells castration resistant and hormone sensitive in the bones and soft tissues. Very well scientifically documented treatment.
Anything please let me know.
Raul
Thank you Raul - Great information.
Rual always has great information, I would like to add there is also zytiga, and various other drugs. It is very likely your cancer will be controlled for many years with the newer protocols, that were not available to me when I was diagnosed.
The following recipe works for me (requires 10 minutes elapsed time):
go outside, breathe. Stand as straight and tall as possible. Look directly upward into the sky. Breathe. Search through the clouds attempting to see the vast end of the expanse. Breathe. Center body weight on heels vs toes. Continue looking deeply and appreciatively into the outer reaches of the Universe. Attempt to raise toes off of ground, as though lifting self into the sky. Reach with arms as far as possible into the sky. Breathe, deeply. say out loud, ‘Dude, you can do this.’ Go back inside and deal with the situation calmly and pragmatically.
The Force be with you.
Thanks Jim. That is good advice.
Try to hang in there. Its a major shock and yes, it feels so crushing but as time goes by, you'll feel better. Remember you have people who love you and that there will be happy days ahead. Listen to the guys on this board. Most of them have been where you are now. It's no shame to cry, even in front of your wife or kids. I'd have loved to have seen my own father cry just so I could have understood his humanity better. If you are embarrassed, give yourself some time alone to process the situation. Nature is a great place to spend a few hours. Look at the life, everywhere around you. It will help.
Best of luck,
Eric
Thank you Eric. I appreciate that.
My husband is Stage 4, Gleason 8 or 9 depending on which pathologist you believe and we have found out, (in the past couple of weeks, via Axumin scan), that he has 11 bone metastases. We are also getting treatment at Vanderbilt. Dr. David Chism is our medical oncologist and Dr. Austin Kirschner is our radiation oncologist. This discussion board has been my most trusted source of information. Visit it often ! I don't think I could cope without the help and support I receive from here. The most important thing I have learned is that there are so very many options available to help manage prostate cancer. And new treatments seem to be continually being tested. There is hope ! I wish you the best outcomes moving forward.
Thank you- Yes this board is truly my goto when I feel overwhelmed. Thank you for responding. It does help to hear from others that have gone through this as well. All the best to you and your husband.
I’m so sorry about the results of your scan. I know it is terrifying to hear that the cancer has metastasized. I hope you give yourself some time to absorb the news. When the panic subsides a bit, I hope you’ll talk to your oncologist about treatment options. There are a lot of good ones out there. In addition to targeted radiation, XGeva can strengthen the affected bones which helps impede the cancer’s growth. There is also a newer therapy called Xofigo (Radium 223) which is absorbed in the bones and delivers effective radiation directly to the cancer. I was first diagnosed with extensive bone mets in my spine and pelvis three years ago and as of last month a combination of therapies seem to have greatly reduced my bone mets. So one can live a full and happy life with your condition. I’d urge you to follow up your talk with your MO about treatment options by starting right away on an aggressive treatment plan.
Thank you RepTale- yes we are scheduling an appointment very soon.
That sucks! But not that uncommon. And can be treated. Most of us co ncede that we can never rest with APC. As far as last check I don’t have bone mets. Thank God ! But it’s always in the back,of the mind that the joint pains that I do have could be PC .. Part of pc fear. I have not had this exact news myself. I’m sorry, Don’t be devestated for long. Take action. In a few months you should be in a better place.. another test. Keep going.. don’t give in .. you have life to live ahead. I’m praying for you..
Thank you LuLu700
You’re human , it’s unfortunately the norm that you’re feeling after receiving the news that nobody wants to hear. Now you just gotta do whatever’ it takes to survive and live with this bitch. Panic a little its natural but then do whatever you have to. You don’t have time to waste on negativity. Please stay in touch and don’t give into doom and gloom. Easy to say. You’ll pass this test too. Believe that you can overcome this again and you will..
For me Chemo therapy using Docetaxel and Carboplatin along with ADT was what my MO at MSK put me on. I am also on prednisone and XGEVA. Your case is probably different but early intervention using Chemo and ADT is probably warranted. Best wishes
Thank you - We will see what he has in store for me. I'll let you all know.
Don’t panic! I had a 9 mm met in right femur found by axumin ctpet so I restarted ADT3, started xgeva and had sbrt in three fractions to the met. Everything is cool.
Bob
Awesome - That is great to hear. Continued good luck to you and yours
See if you can find a local support group as well, in addition to this wonderful site. Sitting face to face with other warriors is often a great help. Forget the “being strong” stuff. You have it and have to fight it. Your family has to watch. Let them help you and that includes seeing you respond to your disease. However; don’t waste too much time in pity party world. It only gets you right back where you started. I too am a follower of Christ and that helps me. Find something that works for you. Cancer sucks but there is so much happening now from Research that the future is much brighter than dimmer. God bless you and your family!
Thank you Scarlino. God bless you and your family as well.
Very nice!
Very good advice.Thanks.
Sorry to hear about the bone mets, tcp. I know it’s easy to say “don’t panic,” but we all do at first. Like Gregg and a few others here I went straight to Stage 4 at diagnosis with one tumor on my pelvic bone. Never had any perceptible bone pain, but it lit up like a Roman candle on the PET scan. At that point, I left my local urologist and went straight to the Mayo Clinic and a medical oncologist who specializes in prostate cancer. Nearly 3 years later on ADT and through 4 of 6 infusions chemo (docetaxel) my PSA has remained undetectable, my lone bone tumor seems to have disappeared, and other than the expected side effects of the ADT and chemo I usually feel pretty good with my “new reality.” I went golfing yesterday. Like Gary, I found a new relationship with God which helps deal with the down days and makes us even more thankful for the good days...and most of them are good. My wife has been extremely supportive, as have my family and friends. There are many new treatments available that didn’t exist or weren’t FDA approved even 5 years ago, and the research is continuing and evolving all the time. My prayer for you is that you (and all of us in this group) have a very long time to share our experiences with, and support for, each other. You have likely already seen guys who are still going strong 10+ years after a Stage 4 diagnosis. Life is good and every day is truly a gift.
Thank you - I am glad to hear that your treatment is working and that you are able to still do things you enjoy. They are doing amazing things with the treatment. Hopefully I can put this stuff behind me (not totally of course) and get back to normal soon. I am a fairly regimented guy. I like schedules and consistency and this APC stuff is throwing my schedule out of wack. 
Litlerny, Very helpful words. You give me hope. God bless and family.
We met with Dr. Shinohara (radiation oncologist). He is also well qualified, and was extremely kind and honest about the limitations of radiation vs. surgery.
That's who I was to see as well. That has changed now I think. We are taking radiation of the table for now and applying a systemic treatment plan rather than the localized initially. I am not sure about the specifics just yet.
I think you are one the right track! Hubby has bone mets, but a combo of Lupron and six cycles of Taxotere stabilized things. Taxotere is very manageable, in our experience. He never missed a day of work and had minimal side effects. And we used the cooling caps, so he kept all of his hair.
That's good to hear! I am afraid it's too late for my hair though. That's been gone for some time.
TCP, you are the first Vandy patient than I have seen on this website. Please let me know if you and/or your wife would be interested in a support group.
Actually I would. Thank you. I would like to utilize every resource I can to best deal with this.
Agreed!
My advice is to get a pro. Dump the surgeon and ask the Radiation Oncologist this question, "If you were in my shoes, what would you do?" His answer, if he is pretty sharp, will be to find the best Medical Oncologist available; not one who does breast, liver, etc. - one specializing in prostate cancer or genitourinary cancers. Preferably one in research and teaches cutting edge techniques. You will find these guys in academia.
My Radiation Oncologist gave me this advice 14 years when I had mets to my spine. Then he found me such a guy within the Texas Medical Center complex which draws from five or so medical schools. I had tremendous results. Six month chemotherapy and hormone therapy trial. Able to stop Lupron in six years. The only medication which I take is a low dose testosterone replacement which keeps my T at roughly 500 while PSA remains undetectable.
Pretty aggressive treatment very early on while the tumor burden was minimal and my body strong. I am turning 71 this month. I wish you the best of success. If at all possible, get a pro!
Gourd Dancer
That is very encouraging. Thank you.
Good news,tcp5071967, I thought you’d get a lot of help and good info here. Keep your head high.
Keep dancing.
My hope, next to cure, is for Leswell to be in your condition. Good for you and the Texas Medical Center. T at 500 and undetectable PSA with former mets to your spine is remarkable.
Have a wonderful decade in your seventies, gourd-dancer, and thanks to you and j-o-h-n for making me stretch my little finger up to the furthest reaches of this unlit keyboard at midnight, a pinky version of a half pipe. Mrs. S
I don’t think some doctors have any sympathy to us that have to wait. My first follow up bone scan was last June, it was perfect, all blood tests and PSA have been great but now I have to wait till June for my next one. I know the bone pain is supposed to be caused by the meds but I’m scared all time as well. So all said. Hang in there the truth might let you see a whole picture and how to defeat this monster 😀😀😀
We also wonder how long to wait between scans. Do you have bone pain all the time? What makes you think that the bone pain could be caused by the meds? Mrs. S
Les, my first scan came 10 months after the chemo started, the doctor didn’t want to put anymore radiation in my body, now they have scheduled another for June that will be one year . Now I do have a monthly checkup wil elagard and Xgeva Shot with blood panel s.
Hope this helps. 😜
Yes, thanks for the clarification. Leswell (who is still sleeping) had scans before and after chemo. In the first he was lit up like the proverbial Christmas tree, and I had to watch that nightmare come into view. The second showed fewer than half as many bone lesions and none in lymph nodes, but he was still not oligometastatic, unfortunately. Now, as you may know, he has the once per year Vantas form of ADT which he much prefers to the monthly injections. The cost is only slightly higher for the implant. I thought you were perhaps uncomfortable about waiting a year for a scan. Maybe not. Very envious of your results but concerned about your pain and his. Go well. Mrs. S
In fairness I was in a six month chemo trial and there is a lot of follow-up. But too much Radiation? That is a new one for me. From February 2003 thru August 2010, I had twenty Nuclear Bone and CT Scans. Then I had another set in November 2016.
BTW, as far as weekly alternating Chemo infusions (Taxotere and Adrimyacin), I did not lose a lot of hair, just thinned out some; but the curl is forever gone. Kinda think hair loss may also be a genetic disposition.
Good luck, keep kicking the bastard.
GD
Gourd. Don’t know just what my doctor said. I would have been a lot happier with a scan more often but so far so good.
No more curl. ? The prices we pay.
Hello tcp5071967,
First of all you'll be around for a very very long time so don't delete the porno that's stored on your p.c. 😀
Second change your ID to tcp5072067 cause you gonna make it to your 100th birthday, May 7, 2067.
Third laugh as much as you can (every day).
Good Luck and Good Health.
j-o-h-n Tuesday 02/13/2018 7:41 PM EST
TCP, lost my hair about 4 months after starting the chemo. Had the wife shave the rest off. Can’t remember when it came back but came back thicker and curly After a couple of months the curls went away 😜😜😜 But have lost the underarm and facial hair. Shave once a month Miss my old mustache 😜😜😜😜
Hello tcp5071967,
You are among some of of the kindest, bravest and well informed “fighters” of this horrible disease.
I believe tears are not a sign of weakness, but a natural response to a deep emotional experience. Allow your self time to grieve.
It’s ok to panic but don’t remain there for too long, because you will need to focus and make the best decisions regarding your care.
Finding a good Oncologist and looking at the options are your major considerations at this point.... some one who is knowledgeable and has compassion, one with emotional intelligence.
Taking care of your mental-emotional—spiritual-social health is just as important. This disease affects every facet of your being.
Something as simple as getting a note book for office visits with you questions and MD’s plans will help to organize things.
This group is great and well informed!!! I feel like I am in Med School when I read all the expertise advise.
There is also a lot of information on the internet, so begin researching.
Take a look at alternative management, which we have found to be very helpful in enhancing quality of life. ( I would be willing to share what we have been doing).
Most of all know it’s not the end of the rope. In the words of my husband: “ Cancer’s death will not catch me in this bed, it would have to run really hard and fast to get me.”
Praying for you and your family and hoping for the best.
One day at a time...💚🙏🏽💚
Public is right--This is a job for Oncology. Watch out for idiots. It took me at least 10 interviews to find a good oncologist. One of idiots I tossed out 10 years ago said, "Dont worry, Kaiser covers Hospice". Another oncologist I met with who was well qualified but horrible in communication said "I cant believe you are still here".
Some oncologists were "textbook" and did not offer me anything new or innovative, so I tossed them out. I met a kind and knowledgeable oncologist in Covina, CA, and I kept him to get an early Provenge treatment when it first came out. At the time they also had a social worker named Shelly who helped me get free limo transportation to and from the treatments. Unfortunately, City of Hope bought out that oncology center in Covina and fired Shelly to cut costs, and I was very unhappy about that.
Dont go to City of Hope. Three bad experience with City of Hope. First experience was trying to get a 2nd opinion on my initial diagnosis. City of Hope demanded a $5000 retainer fee to see one of the doctors because I was with Kaiser and not covered for opinions at City of Hope. 2nd bad experience a few years later, a university sent City of Hope my slides for a possible clinical trial evaluation, and City of Hope lost ALL my slides. (Loss of my slides made me ineligible for ANY future clinical trials until years later when I got a bone met a new biopsy to create new slides). 3rd bad experience was the firing of Shelly.
14 years later, I moved to Northern California and had to go through that interview process again. Tossed out more oncologists and found 2 good ones--one treating oncologist at UC Davis, one at Stanford for 2nd opinions. I think I am in good hands again.
Specialty to start with?
Recurrent PC
Hi we are new to this site
