Any pointers on this crazy deal please let me know. Right now I am at the beginning stages of hormonal therapy. I had one lupron shot and next week I start Zitiga. Any info on this stuff would be helpful. I’m scared, I feel like I have no time to deal with my affairs and it’s very hard not to loose myself right n this. I won’t quit and I will fight.
Advance Prostate Cancer at 47 - Advanced Prostate...
Advance Prostate Cancer at 47
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Doug47
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Give the dirty details and that will help in helping you. PSA when diagnosed? Scans? Gleason? Did you have any symptoms like urination issues? What prompted the initial doctor visit? Where are you being treated?
Ron
PSA 49.35, G9, spread into my lymph’s
G9, PSA 49.35, it’s in my lymph’s. I did the bone scan, PT PELVIC. I had one shot of Lupron and I’m waiting for my insurance to clear the Zitiga .
Below post you stated oncologist gave you 5 years. Not sure where your being treated but I can tell you that onc is in the dark ages. If locally advanced you still have a shot at cure. There is much on here even recently on node involvement. Settle down and get comfortable and read. I also had a mets to nodes diagnosis. To many to count. Feel free to check my profile and anything I've replied to is mostly node discussions. I was 46 when diagnosed, 49 now and life is good.
Jesus thank you! I have a lot to learn! This is only 4 weeks in from finding out
Doug understand that although your outlook is far better than Oncologist is leading you to think this is still pretty serious. The steps you take now are critical. I'm guessing only because I've been down the exact same road, that your currently seeing a local average town USA cancer treatment center. At facilities of that type all your going to get is proven treatments and doctors are all general onc and urologists. Treatment facilities of excellence such as Mayo, MD, Farber and Sloan Kettering are where you need to be to put the odds in your favor. Tell your local doctor you want a referral and another opinion from a specialist. They should have no problem doing this, in fact should encourage it. If you need to travel then that's what needs to happen. I'm telling you right now the best weapon you have is knowledge. Read, read, sleep and read some more. It's really in your hands. Not some jackass dictating how long you will be alive. Take control and move on it.
Copy that. Step one is learning this from you all. I know this is serious, I have a long road to travel, we all do.
What about Anderson Cancer center in Texas?
I personally can't speak about doctors there because I ended up going to Mayo Clinic in MN. I live in upstate NY and fly there once a year for follow up scans and consultation with my doc. I can tell you when I was at a point with my disease looking for options I found a doctor from MD Anderson that authored a pubmed paper on the benefit of local therapy with node involvement. I sent her an email and to my surprise she set up a phone call and her advice was huge in getting me where I'm at now. She is a Professor of Radiation Oncology at MD Anderson and her name is Dr. Deborah Kuban. I didn't end up going to see her because she actually recommended surgery because of my age. For her to reach out to a complete stranger and set up a call to help me says volumes on her character. I'm sure there are others that are good. When the time comes ask here for recommendations.
Good looking out I will! Thank you!
in reply to Doug47
Dr. Corn and dr. Shaw at MD Anderson are my drs. Positive and upbeat. I’m just on my 2nd lupron shot and was feeling the same as you. Their attitude changed mine. I travel 800 miles and it’s not a big deal. Not really time consuming until the radiation starts.
I was first diagnosed with Prostate cancer when I was 55, so I feel your pain. Now I'm 70 and still fighting this disease. The best advice I can give is to have a positive attitude, keep fighting and get a good doctor. My perspective has changed a lot since I was first diagnosed. You can still live a pretty good life even though you're pretty much in treatment for the rest of your life.
Good Luck
Dennis
God damn hank you Dennis, that helps. My doctor is telling me that maybe I can live up to 7 years if treatments work. Crushing thing to hear.
I assume that you had metastases, or you would not be getting Zytiga. How many and where? Did they biopsy any of them - histology? genomics?
They did a biopsy of my two lymph’s by my prostate. Yes it’s metastasized.
If the only place it has metastasized to is those two pelvic lymph nodes, you can get potentially curative whole pelvic radiation. You should be talking to a radiation oncologist.
I did have that conversation a couple of weeks ago with the radiation oncologist. That was the plan. After my biopsy, the MD oncologist said he wanted me to start the Zitiga and wait two months to get a pt scan then before we go to radiation?
They always wait two months from the start of ADT before starting radiation. Zytiga might radio-sensitize the cancer even better than Lupron alone. It is doubtful that a PET scan would detect anything after you've had Zytiga.
Ok so I’ll relax. Should I have the PET scan before Zytiga or if nothing shows up after taking this it’s a good thing?
But you've already started on Lupron, so it's highly doubtful a PET would show anything.
is there an optimal time for radiation after starting Lupron / zytiga?you wrote two months but it my case it will be about five months.Hope I didnt miss the train
Not to worry - anytime AFTER 2 months is fine. What they are looking for is the PSA nadir - that's when radiosensitization is reached. Some guys wait for much longer to give urinary tissues time to heal before salvage radiation after prostatectomy.
Thank you Allen,
what you do here for us is remarkable.
Wish you all the best
in reply to Tall_Allen
Hello. if metastasis are not found in pelvic area after taking Zatiga - does it mean they are gone or they just shrank? When will they come back and how soon?
Tall_Allen in reply to
Some cancer cells are killed by androgen deprivation, some are not. If he has distant metastases, the cancer is systemic and must be managed as a disease he can live with.
Anything remarkable on the immunohistology report?
I don’t know what that is
What did they find when they looked at the lymph nodes?
All I saw on the report was, positive metastasis for cancer. Is there a number to that I should look for?
Ask your oncologist for an immunohistological report.
What am I looking for or, how does that help?
It tells you what kind of cancer you have. Certain kinds of prostate cancer respond better to certain therapies.
I feel so stupid, read, read, get some rest and read! Thank you Allen.
There's a lot to know. It's hard to know what questions to ask.
First off, relax! It isn't like you have two months to live. How someone could pin point that you have 7 years to live is pure BS. Fact of the matter is, no one knows. Those weird looking geeks dressed in white jackets are stirring chemicals right now in order to keep guys like us moving along.
Doug47 in reply to
Lol, copy that thank you Bill!!!
in reply to Doug47
Thank me in 10 years, you aint going nowhere. Your life will be different, adjust.
Doug47 in reply to
Bill, I’m new to this site as of hours ago. I already feel better talking to you and a couple of other guys. I didn’t think having a support group thing would be for me. Boy am I wrong! I want to fight thing damn thing and trust me I feel the change of perspectives already. Hearing you all talk about this makes me want to fight this even more! Corny I know but I truly mean it!
Welcome to the group that no one wants to be in. It sounds like you are going through the normal stages that we all went through at diagnosis. First there is the shock of finding out that you are stage 4, then trying to figure out what that means in terms of life expectancy, etc. The next thing is you learn about treatment options then start fighting.
A big plus for you is that your prognosis is good with only 2 lymph nodes and a relatively low PSA. I don't like to use the word "cure", but a permanant remission is possible for you.
My PSA at diagnosis was about 10X yours with extensive bone mets. I'm still a newbie, but coming up on 2 years since diagnosis. Hope you can keep your head up while you take on this disease, that's important.
Many of us here have learned to appreciate life more than ever now. Hoping you will experience that as you start this journey. We are all here for each other, no one really knows what it's like until they've been there.
Doug47 in reply to
Gregg, very well put thank you. I had no idea how to wrap my head around all of this. After joining this group that nobody wants to really be in, it’s opened up some hope for me. I’m not shaded on the fact that things could change on a dime but knowing that we are not alone really helps. It’s easy to single yourself out for sure. I have a lot to learn with this. I hope things turn out better for all of us. Rough gig to say the least.
in reply to Doug47
Doug you are looking too far down the road. You will quickly learn to enjoy your life with renewed perspective. Be positive be strong but also let out your emotions. The ADT will have a number of side effects so hold on tight. Determine your support group of friends and family and use this site to gain understanding.
Doug47 in reply to
Thank you
in reply to Doug47
I remember the day I was I told and how I had such a profound sense of being alone. I don't think I've ever felt that alone in my life. It felt like there was a barrier between me and those around me. They were standing on the outside trying to help and understand, but no one can come inside with you. I felt alone until I met others in the same situation. I would strongly recommend finding a face-to-face support group in your local area. If you let us know where you are located we may be able to help.
I am biased and different from most in this group. Discuss micro-metastates with your Oncologist. It is what sold me in 2004 to undergo a six month chemotherapy trial. I hit my Metastatic Prostate Cancer hard six weeks after discovering mets at T3 & L2 of my spine. My research Medical Oncologist believed that chemotherapy works best when the body is strong and the tumor burden minimal.
I was able to stop Lupron in February 2010 and my PSA is undetectable. You can find my treatment, results, and thoughts on the subject in this group or search Gourd Dancer Advanced Prostate Cancer on the Net. It is worth discussing with your Oncologist. Which ever treatment you take, it will be right for you. Good luck.
Gourd Dancer
Doug47 in reply to
Thank you
Hi,
you've already been given lots of good advice below, but just to let you know, i was diagnosed 16 years ago at the age of 37, and told i would be dead within 2 years.
If you'd like to know more about the treatment i've had, please take a look at the post i put up yesterday. Happy to answer any questions you have.
Fight hard!
David.
Doug I have almost the same diognoses and I'm now into my eighth month on Zytiga and PSA is undetectable after the first month.
Don't get your affairs in order just yet you will be here for along time.
The most important medicine is to keep a positive attitude cancer hates that. You can lead a fairly normal life just do the research and seek the best help. In my opinion you are already on the right path joining us here. There is a wealth of Knowledge and information at your fingertips. Never give up never surrender. Leo
I am was diagnosed at 45. I am now 48. A lot of good advice on here. What state are you in? Feel free to text me anytime at 260-210-4457. My name is Shane. Good luck and keep your head up.
Sorry to hear you have joined our group of fighters the hard way. Stage 4 here at 65. That was a little over 2 years ago. I for one know the terror you feel. My wife and I went thru this , the terror about finishing all those unfinished chores, i chose to stay very busy, around the house, saw the lawyer updated the will, gathered the kids closer, set up a annuity for the wife. Then as the issue settled in I came to a uneasy understanding that this stuff is a awful monster and will get me in the end but not today. Get your bucket list together and do as much as you can . There are a lot of great people on this site with a wealth of knowledge. Don’t be afraid to ask questions. Good luck. Fight the good Fight
That’s a tough one to swallow but I will do just that. My God, this is happening so fast! Thank you Larry.
Doug, your story is very similar to mine. I too was diagnosed at 47. PSA 21 and metastasised to the lymph nodes. I'm 52 now And feel pretty good even though I spent 2 years on Lupron and now on Zytiga as I am now in a trial study hoping to get rid of this monster..... besides some small inconvenience with the side effects I haven't missed a beat. Still work every day. I have never asked my doctor how much time he thinks I have. Don't really want to know. I just stopped pushing off the things I've always wanted to do which we all should do anyway. I've found this sight has some really good info on it but just remember everybody is different so don't read into everything. I've found out talking to people with similar situations really helps... good luck and enjoy life, there's plenty more coming!!
Hey Doug, I was dx Stage 4 on March 2017. I immediately hit it hard with chemotherapy which wasn't bad at all. My PSA has been holding steady at 0.1-0.2. When I asked my Onc last month if there were new drugs coming down the pipe, he said by the time my PSA starts creeping up, there will be a new drug to act as an inhibitor to fight the beast. He didnt say Zytiga but a newer drug. My best advice to you is go about your business every day. I don't even thing that I have PCA. My quality of life is good. I am not restricted to do anything. I just watch what I eat for overall good health. I get treated in MD Anderson in NJ.
Nick
I was DX a a pretty young age too, I was 55, I'm G9 and had mets to lymph nodes and throughout my skeleton. I hit it hard and early, I didn't want to play around with G9 PCa. You can click on my profile to see what I've done. Four and a half years later PSA remains undetectable and no active disease on scans. I'll never be cured, but I'm in a good spot considering where I started. Get a good oncologist who specializes in PCa, learn all you can, be your own advocate and pray hard.
Ed
I was diagnosed at age 50 and became metastatic at 55 years. I am now 67 years old and have been diagnosed and treated for 4 other cancers! I am healthy and happy despite cancer. I share this with you so you can know that cancer, including metastatic, advanced prostate cancer does not mean that you are going to die today, tomorrow or even in 5 or 10 years. None of us have an expiration date on our heads. Nobody can tell any of us when we are going to die.
You should keep this always in your mind.
I have been on zoladex injections for 6 years and started zytiga with the zolodex 2 years ago. It is kept my PSA down to a .50 but right at the present its .75. I started working out at the YMCA about 7 months ago and I feel really good but I keep pretty active. It can make you kind of tired, but if you fight it and keep active you will feel fine. But I suppose that's up to the individual.;;
Don’t get fixated on the 5 years your doctor gave you. I was 50 yrs when I got my bad news. My PSA was low and no mets. The only symptom was that my prostate was as hard as a rock. (sure sign for cancer). My first OC gave me 10 years Max (57 now Still doing well). As time went on and we got to know my cancer he admitted he didn’t know. Every Doctor after that said the same story. They have seen guys with low PSA, NO mets die 6 months later and there are guys that have cancer everywhere and live 20 yrs. Your cancer is unique to you. As for the Lupron shots, I went crazy. I had a lot of the side effects. However I have met guys who didn’t feel any side effects. I had Hot flashes, mood swings, rash over my body, extreme fatigue, and a deep depression. I wish I had found this blog site when I first started, there is a lot a good advice here. This site will give you information to ask your doctor. I look at cancer as the world’s greatest job with the world’s worst co-worker, it will take a while to learn how to live with it. This is going to drive you crazy and you will need help. Remember this happening to you and not who you are. Don’t look too far into the future, I have been wrong every time, I tried to predict the future. Shorten your vision, I’m down to “today is good”. Remember that everything is going to change and everything will remind the same, you are looking at life with your cancer googles. It will take time to get your bearings, Good luck, live well and have fun.
I was diagnosed at age 48. Got surgery which did not cure it, then lupron but it stopped working in 8 months. One incompetent dr told me I could live 3 years if I do chemo. Another idiot who was a Kaiser oncologist told me not to worry because Kaiser offers hospice. That was 15 years ago. Obviously, I am still alive because I am writing this post today. I am not in Kaiser anymore. Have better care elsewhere at the university hospitals UC Davis and Stanford.
Good information is the best weapon in this battle.
I don’t know why you should wait to get radiation to all pelvic lymph nodes. If you have two visible mets you’re likely to have micro mets throughout all the pelvic lymph nodes .
I had two suspicious nodes and had 75 grays in 50 fractions to all pelvic lymph nodes by a RO who treats only prostate cancer. I also had ADT3 for 13 months. No recurrence in nodes.
Thank you
You have time! I was diagnosed at 43. I’m now 55. Hang in there!
I hope so
Absolute first, go on a plant based diet, no added oil. Know this sounds extreme however, surgery, lupron or similar, radiation, are also extreme and more toxic. Go to nutritionfacts.org, advanced cancer. Meat and dairy particularly have been shown to be carcinogenic....get off the cause! And onto healing foods...fruits, veggies, grains, starches.
Greeting Doug... Take a Deep Deep Breath... If anyone tells you that you have X amount of years left, then ask them for the next day's lotto numbers. If they give you the correct ones let me know which ones they pick for tomorrow. You've come to the right place for help and camaraderie and sometimes a few laughs. Make sure you have a good Oncologist who specializes in Pca. Enjoy every day cause you'll be around for a long long time. You must remember to LAUGH because the more you cry the less you pee. BTW you never said where you're located. That's important so that members may refer you doctors or hospitals in your area.
Good Luck and Good Health.
j-o-h-n Sunday 09/23/2018 7:35 PM EDT
I am living in Skagit Valley Washington
in reply to Doug47
Living in Skagit Valley Washington? A very good oncologist who does nothing but prostate cancer treatment and research is Dr. Cooney at university of Utah. She was my MO at U. of Michigan until she moved on. Google her, you will be impressed.
healthcare.utah.edu/fad/mdd...
Doug47 in reply to
Thank you
Celeste Higano, at Seattle Cancer care is a prostate specific Oncologist , and a top rated researcher, as well as a very compassionate Oncologist, probally your closest one.
Dan (dx 2006, gs 10 , bpsa 148,widesread metastatic disease, age at dx 49, currently 62
in reply to j-o-h-n
“The more we cry” “ The Less we pee” very funny..
Aloha Doug
I remember this time well -- with my husband. it was shocking and brutal. He found out by having a hairline fracture in his hip that caused great pain, and the orthopedist told him it was cancer (after MRI, etc.) The beginning is crazy and awful. My best advice -- one day at a time takes on a whole new meaning! Treat yourself well. We went out to dinner, or got sandwiches and sat at the beach after appointments, scans, whatever. Take some time - take it easy in every way you can apply that. It does get better, or well, it becomes the new normal - not a great normal, but at least normalizes.
We did also get affairs in order but you shouldnʻt feel pressured. We all should have our affairs in order, so we just looked at it that way. Itʻs not a bad idea, and itʻs actually something that gives you a sense of control as your life seems to be spinning out of control.
My best recommendations:
- yes, find a consulting research oncologist who only does prostate cancer, and MD Anderson in Texas is a great option (we use UCSF because itʻs easier for us to get to from Hawaiʻi and we have friends to stay with). Your regular onc. should be happy with this added advice - if not, change oncologists.
- keep a book, and write down everything -- scans, people you talk to at the office, phone numbers. Weʻve got one going for 4+ years now, and it can be really helpful for keeping track and going back to "when was that treatment" etc. We also look it over before each visit and write out questions, and then use that as a checklist for the visit. Also track PSA, weight, vitals.
- do what is good for you, do research, ask questions, and take time out and away from cancer-ness
- try Malecare or UsToo in your area. Groupʻs are not for everyone, but itʻs worth a try. Partners can attend as well.
As others have said - prognosis for Prostate Cancer is not accurate these days. There are too many new treatments, stuff that has come out very recently, and so, in fact, there are no survival stats on the new treatments, except from the initial studies, and not really extending out much more than 5 years, and the combined treatments do not have survival calculated.
This is a tough time for you. When I look back I honestly donʻt know how we got through it but we did, like everyone else here on this site. itʻs great that you found this so quickly.
Best wishes to you as you get through these weeks.
We go to Dr Heather Cheng SCCA and are very glad for it. We have gotten into the conservative but cutting edge trials.
In any case I wolud do a whole pelvic radiation and opt for cure or long term Remission. Either IMRT or BT + IMRT. You should start radiation 6 months after starting Hormon therapy and continue it for 12 months after radiation. You could have not detectable PSA after that for Long time.
This will in any case help to debulk the tumor and prolong survival.
Your description sounds exactly like mine when I was first diagnosed. I was 47 and the surgeon at Johns Hopkins told me I had 5 to 10 years. That was 26 Years ago. Don't let anyone tell you how much time you have. Plus there is a lot more out there now than I had 26 years ago.
So, surgery is out, you headed for radiation, good. Take it one step a time. The guys here can guide you through treatments are needed. My only advice is and this tough for you been I assume from Texas, is start a vegetarian diet. Go organic less processed food more fresh live foods. more later.
Doug - just thought I’d throw my 2 cents in here. I was 44 when diagnosed with Gleason 9, mets to bone...been on Intermittant hormone therapy for 9 years. Had surgery/radiation as well early on...have had normal testosterone while off hormone therapy...hang in there...once you get a plan you’ll feel like you’re kicking it back and eventually you’ll find that things will calm down a bit...
Reply
Just know that your taking two great drugs. Lupron and Zytiga will turn off the fuel source that feeds PC. Tumors will shrink and break down, weak cancer cells will die. So you’ve started your treatment, it’s working and you can breathe now. These drugs will do their work over the next several months and give you time to learn, talk to doctors and make a plan. When cancer is weak keep it down: eat well; exercise hard; try to manage stress and keep.a positive outlook.
Hey Doug no worries, I just went through the similar: Dx at 47, PSA > 500 (no typo), a couple of mets to bones, huge inoperable tumor size. First few weeks after DX are most nerve wrecking for sure. Two kids in school, a lot of dependents and responsibilities in the tow, not a time to go dang. My MO (medical oncologist) had enough tact not to tell my sweet wife something similar to what you'd been told when she asked if this is curable and how long I have got (we're newly weds, soon 3 years together yay!). He just mumbled something like "weeell, we will see...". Sure we will I said. So we went aggressive on treatment and I met my 48th BDay chilling out in Dominica with Docetaxel circulated in my blood instead of rum. Now, 7 months later on Lupron, after chemo and countless articles on PubMed and occasionally hanging out here I'm in much better shape physically and mentally. It gets better you will regain control of the situation and make a plan of action. Welcome to the club, by the way. The first rule of the PCa club...hmm... you act like you don't have PCa )))
Hey Doug, First you need to relax....You need to give us more information such as Gleason score from your biopsy. A little history.....do you still have your prostrate? What kind of lifestyle you had prior to diagnosis.. Be honest with us because there are a lot of guys out here who have experienced what you have...The Lupron Zytiga mix cane given to some who are diagnosed with early onset to try and knock it down to .00. Give us some PSA numbers . I have Grade 4 non-metastatic castrate resistant disease . 12 cores all Gleason 9 diagnosed in 2015. Just went on Lupron and Xtandi and doing well..I lift , run, and am a commercially rated pilot....Read these other guys and how they approach it..First a sense of humor is your first ally, second a good physical fitness routine, third you may need to add some supplements and clean up your diet some...do not go overboard and start cramming anything that is supposed to aid in prostate down your gut. Any supplement you take report to your caregiver...you can make yourself toxic mixing to much shit....Processed foods, sugars and colas are not your friend....ease into it and do not stress yourself out....We know it is a shock but you have lots of time...New stuff is coming down the pipe every month...A year ago my drug Xtandi was not approved for my condition now it is....It is currently kicking ass....3.9 to 1.51 in 17 days... Again lets make some lemonade out of lemons..my friends joke because I am in great shape and feel good. They say I should have gotten this shit sooner...we are here brother....
I was diagnosed April 2018. Once I got my head around it a bit and read advice on this forum I transferred my care to Seattle Cancer Care Alliance (SCCA). I have to drive 4 hours for my appointments there but feel it is completely worth it. Hang in there.....it will become more manageable mentally.
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