Anyone in the mid 40's with advanced prostata cancer??? I was just diagnosed but here in Denmark where I am from, nu case seems rare and cannot find anybody with a similar condition at this young age. I would like to share and discuss treatments.
Advanced prostate cancer at age 45 - ... - Advanced Prostate...
Advanced prostate cancer at age 45 - anyone out there with similar age and condition?
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45yrsDenmark
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Hi 45yrsDenmark, I was 58 when diagnosed 8 months ago. I was actually feeling like the “young” guy, but I know there are others like you out there. Sorry to hear you got this while so young. I’m not sure whether or not age would have anything to do with the treatment protocol unless there is an issue with fitness and the ability to take the medication. But I think there is an advantage in fighting the disease if you’re younger. Anyway, I’m on a “standard” therapy for someone with metastatic hormone sensitive PC. I’m taking Eligard, Darolutamide, and May begin XGEVA shortly. Good luck!
Thanks, what my google research and confirmed by my urologist, the to unger, the more aggressive...
Younger, sorry, Danish spell control-
I was diagnosed at age 56 (a nodule was detected 2 years earlier), & I always assumed that PCa at a younger age must be more aggressive. But this turns out not to be true.
New study [1]:
"Our results demonstrate that prostate cancer in younger men tends to be lower grade and stage disease compared to older men. This is in contrast to persistent views within the urological community and may have an impact on disease management in younger men."
You don't say what your Gleason score, etc. is. You do indicate that it is advanced. Do you mean metastatic?
-Patrick
[1] ncbi.nlm.nih.gov/pubmed/315...
Yes, see below where I have elaborated my cancer details.
Hi 45yrsDenmark
There are several active members here in the same boat as you. This is a well informed and helpful community— we will help in any way we can.
Please post any information you have learned about your prostate cancer to this point.
What scans have you done? And where did the scan show the cancer being active? (Bones/ Bone marrow/ Lymph nodes/ organs)
Any biopsies and if so, what was your Gleason score and how much cancer/ in how many cores?
Have you had any genetic testing? If so, were there any actionable mutations?
Prostate gland very big and hard in one side. PSA of 87. All 12 biopsies were positive (all 4+3) but in Denmark, they did not recall to have seen such aggressive cancer cells before. Got PET/CT scan which showed metastases to several lymph nodes and at least 3 places in the bone (pelvis). One small shadow on the rib. As the first in Denmark, I started a combination treatment: 6months eligard deposit along with bicutalimide the first month. Then Zytiga followed by 20x radiation on the prostate. Usually it is 39x radiation, but I get higher dose each time compared with the standard 39x (however, less in total). So that's it. After that, it sounds like the options are used and only chemo left (if that is possible at that time because then I am a very sick man, they said). I Got told that most like me, also due to the aggressiveness typically for a young man like me, most have died within 2 years and not many (if any) is alive after 3 years. The statistics I have found support all this..... Hope some more and less conservative approach is avalable in the US (a country I love and have visited many times).
45yrsDenmark:
Have you had any genetic testing? The reason I ask, is there are certain mutations (like BRCA1/2) that respond to certain medications and chemotherapy.
At your age, I think it is worth getting genetic testing. You can start by doing simple saliva testing for germline mutations. (Color Genomics is a USA based company doing this testing via mail).
Do you have a family history of prostate cancer that you know of?
Follow this link for gentuc testing kit. It is $249us dollars.
45yrsDenmark
There might be an argument in your case for chemotherapy too.
Evidence has been accumulating showing benefit of chemotherapy when used early on in diagnosis.
No family records of prostate cancer, I am the first. No genetic testing YET, but I have been recommended to do that also in a danish prostate cancer community. The chemo combined with other treatment early on was also considered in my være, but they had data that the other treatment in my case was better.
Please tell me on what grounds they are saying your cancer is "very aggressive.
What kind of cancer they saw under microscope....was it Adenocarcinoma....Small Cell Ductal carcinoma or Neuroendocrine carcinoma. Gleason Grade 4+3 is not considered very aggressive...(its intermediate grade). As for them, telling your future by giving your life span estimate..that's totally absurd as many many people are alive even after 5, 10 or even 15 years.
Please provide your biopsy details...You are on Eligard and Zytiga which is standard treatment for metastatic cancer.. We are here to exchange knowledge as we are all suffering from the same disease.
I will need to ask for the details of what they saw in the microscope. I am even new to my own condition since it is only 1.5 weeks ago I got this dead sentence.. So happy for everything we can gather together to improve survival for us all with this evil disease.
I also felt in first 2 weeks of my diagnosis as :death sentence" This sudden diagnosis makes everyone feel fearful and anxious.
You being young has its advantage as your body can tolerate stronger treatments better than a 75 years old body. But we need to get full knowledge of our disease and make smart treatment choices. This forum is very very useful especially for newly diagnosed people.
Yes indeed. I will follow up on gene testing and microscope details. Now it's over 1am here, so ned time. Let's keep in touch. Thanks a lot so far
Bed time even
Are there any oncologists in Denmark specializing in prostate cancer only?
If so. Worth the trip
We frown on this site when a medical practitioner gives a patient an estimated of life expectancy.
All so often it is wrong.
There is supposed to be a professor in prostate cancer. I have his name, but this is still so new to me, so I need to investigate more. I will let you know.
Wrt giving me a timeline, I also pushed for that myself. I needed to have some prognosis on a scale to have an idea of the degree of seriousness. I am a scientist myself (master og science in organic chemistry, principal scientist in devolping generic drugs, mainly for FDA and Europe.. and my wife is a vet), so I am a very analytical person. Have also 2 patents and 2 publications, so I know about statistics... the strength and weakness (have statistics for black belt six-sigma)... So it is kinda my own fault that I pushed for a prognosis, but I needed to evaluate how to prioritize the time to vine when having small kids etc...
Again it is so variable. We hav 20 - 25 year survivors who thought they were doomed on diagnosis. It may be worth a visit to a top flight pca oncologist here in the US. Good luck and godspeed
• in reply to45yrsDenmark
They told me I had 2 years if I was very lucky, that was 5 years ago. I feel great. don't read or listen to survival statistics.
That sucks to get such a bad diagnosis at such an early age!
It sounds like you are getting very good therapy for your condition. If they can biopsy one of your metastases, an IHC analysis can reveal if you have an unusual type of prostate cancer or just a very aggressive variant of normal prostate cancer. Assuming it is an aggressive variant, starting chemotherapy with docetaxel may be your best option. Some are even doing both abiraterone and docetaxel at the same time. In the US, a new drug called Erleada (apalutamide) was just approved for this situation.
If you have an unusual type, they may want to add carboplatin to the docetaxel. If you can get a genomic analysis too, there are some very unusual genomic traits that respond to tailored treatments. Let me know what the IHC analysis said and we can discuss further.
Here are your current options:
Hi mate,
I was diagnosed with stage 4 metastatic aggressive GS9 at 47.5. The PSA at diagnosis was 500 (see details in profile) so you can figure out I had stage III/IV cancer at 45 and most likely stage 1 at 40, just didn't know about. Now, I'm getting close to 50 and definitely still alive. So you can say I at least made 2 years (more likely 4) on stage IV and ~10 years overall. How do you like this math?
No history of family prostate cancer? What about ovarian, breast or pancreatic? I didn't have much history either, testing showed BRCA genetic mutation. If you find similar mutation it can be bad and good at the same time. Bad, because it's usually aggressive and fast. Good, because thanks to the advances in women's cancers (yes, BRCA is a breast cancer mutation) we have the benefit of applying the same developments to our case. PARP inhibitors were first approved in ovarian cancer and lately in breast cancer. They are coming soon to PCa standard of care, but already available within clinical trials or off-label.
So don't run out and order your coffin yet, get yourself a cup of coffee or drink of your choice, get comfortable and study the hell out of this and many other useful resources on the net to figure out your personal strategy to stay alive and sc(r)ew the statistics.
And if you get frustrated, confused or pissed off, we're always here to support. Welcome!
P.S. And yes I agree with another poster: what doctors are smoking over there? GS7 aggressive, two years to live? Please...
I know of one member here diagnosed in his early 40s and still going over a decade later: menshealth.com/health/a2530...
Hi 45yrsDenmark,
I was 49y.o. at initial diagnosis. Now I am 53y.o. PSA was 950, Gleason 4+4=8, multiple lymph and bone mets. I too have girls at the age of 7 & 10. Some more info you find in my bio. For my urologist I am still a very special case. Wish you all the best, Theo
I’m sorry for your tough diagnosis. This board is a great place to learn and find support and hope.
Read about Todd Seals. He’s on the board (as Todd1964 I think)
Here is a link to his blog:
There’s an article in Men’s Health featuring him here: bit.ly/2VZjtmL
My best wishes to you.
I was 42 at diagnosis with stage 4 and a Gleason score of 9. That was 27 years ago. I live in the US. Sorry to hear of your diagnosis at a young age. But there is a lot more in the way of treatments now than when I was diagnosed.
I was 55 years old when diagnosed Gleason 9 last year. I think it is normal to go through a range of emotions right after diagnosis and to spend time looking up death statistics. I certainly did. I suspect you will feel a lot better emotionally in about 3 months when you realize that you are unlikely to die in the next two years. This is a good place to be for information and support.
Hi. Sorry to hear you have PC. There are a few 40's around, but not many. I was diagnosed with advanced prostate cancer two years ago, age 43. I had a Gleason 9 with multiple bone metastases. PSA started at 58. I started on abiraterone and ADT ( Firmagon) , I have had radiotherapy to the prostate (10 high doses). Most recently I have had chemotherapy (10 cycles) and now having a break. PET scan this week shows no new disease, nothing in Lymph nodes or soft tissue, PSA has also fallen from 150 to 85.
Yep, I'm right here...I'm almost 43 now. I was diagnosed at 40 with stage 4 prostate cancer with gleason 7. I have no plans on going anywhere soon, I want to see my kids graduate from college and that is many years away....
They immediately hit me (and hit me hard) with chemo. Thereafter (in the last almost 3 years) I went through cycles of Casodex, Zytiga and Xtandi. There is also Zometa and Zoladex (every 3 months) included in treatment.
I'm now on Chemo again (Cabazitaxel), just finished 6 cycles and about to start another 6 cycles because it appears to working in terms of keeping the PSA in check etc.
The 2 year or 3 year prognosis you mentioned below is ridiculous. I think you need to fight this with everything you've got and you will live a long, long time.
Two other treatments you may wish to consider to increase your odds. Add Celebrex and zometa. The two combined were shown in clinical trials to reduce deaths by over 20%. mdedge.com/oncologypractice...
I’d Also look into sbrt radiation on the few mets you have. No clinical proof yet that it prolongs life but early studies are very positive in men with 5 or less mets. The theory is the abscopal affect. Diligent exercise , especially weight training will greatly limit the side affects of your treatments and studies indicate it will improve outcomes. Healthy plant based diet is also thought to help.
Schwah
Hi 45yrsDenmark, I live in the USA...my Gleason 9 diagnosis happened when I was 53, I had a Radical Prostatectomy, radiation, ADT, Elrleada and starting chemotherapy (Taxotere) this month. Advanced Prostate Cancer is a total pain in the ass, but it can be managed...but always try to stay a step or two ahead of it.
But my story doesn’t stop there. My first diagnosis was colon cancer when I was 36 years old; then melanoma, renal cancer, then the prostate cancer, and I was just diagnosed with Leukemia (CLL). So I have survived (and surviving) five (5) different cancers...I fully intend to beat all odds and die an old man.
We are all here for you, and you can beat the odds too.
The best advice I can offer is to get into good physical shape (if you’re not already) increase your vegetables, drop all sugar, and limit red meat and dairy. A great Urologist and Oncologist will take care of the rest...and get the genetic study as others have suggested. The more information you and your doctors have, the better the care.
Have you gotten 2nd and 3rd opinions of the biopsy ??? Pretty much a SOP to verify that you are 4+3.
It took me over 6 yrs to find this group of survivors and I only wish I had found them earlier. There's a lot of smart mimds here to help you so never think your alone in this. Never take any notice of survival statistics - they say >90% of statistics are made up anyway !!!!
Hi Denmark! My hubby was dx at 44, Stage 4 with extensive mets to bones and lymph nodes. His PSA at dx was 718. He started with lupron+casodex+docetaxel. PSA eventually got down to .14! He had a wonderful 22 month response. I highly recommend genomic testing. Mike carries the BRCA2 gene (somatic). Unfortunately his cancer morphed into neuroendocrine prostate cancer so he is currently receiving 2 chemos (carboplatin+etoposide) with immunotherapy. Still fighting 2 years later! Wishing you the best!
Hi 45yrsDenmark, i was diagnosed at 37 and told i would only last 2 years. 17 years later I'm still here. Please look at my profile to see where I've been wrt treatment. Any questions, please ask. Hang tough - there's lots out there for you. Good luck
Hello, I was 46 at Diagnosis, 54 now. Gleason 9 4+5.
Went on a study did chemo + hormone therapy followed by radical prostatectomy with cancer found in lymph’s. Spread to bone in many places and many lymph’s. Fast forward, doing Lupron, Xtandi, Xgeve with clean scans and zero PSA. They told me I would be dead by now. It’s a miracle.
Hi Denmark---Diagnosed at 44 with a PSA of 35.....no mets after RP for 11 years , although PSA never really went down so I've been on hormone treatment...finally a couple of spots on my hip...zytiga plus SBRT (targeted radiation) seems to have worked....hang in there!!!!!!Stay positive!!!!
When I was getting radiation treatment at md Anderson in Houston there were two guys both age 43. One had RP and was doing radiation because it was just outside the prostate. The second guys treatment was to do 20 rounds of radiation and then implant the seeds.
Very young but pc was in there family. Those guys should start testing at 40 according to their doctors.
Too young
So sorry
Stay on this site
Information and sharing is priceless
All the very best on this crap road trip🙏🏽
Hi Denmark,
Sorry to hear about your unfortunate diagnosis. I think you’ll feel better about your situation once you start responding to treatment. It takes some time, but you’ll be able to relax again and enjoy raising your three kids. I celebrated my older son’s 18th birthday last weekend. I used to worry that I wouldn’t see my younger son graduate from high school, but I don’t think like that anymore. I wish you the very best.
Very sorry to hear of your diagnosis. I was diagnosed last October (2018) with stage IV, PSA 43 at the time, gleason mostly 9 and some 8 on all 12 positive biopsies. Mets on 2 places on my ribs, spine and pelvis. At first I felt I was given a death sentence just like so many others. No doctor knows how long anyone has. Of course we don't want to be lied to or given false hope, but there are treatments and other options that can keep this at bay. I switched to Duke Cancer Center and I have had Eligard I think it is called at first (2 shots in my abdomen) followed by lupron shots every 4 then 6 months. I was on bicalutimide at first, then started Zytiga for about 6 months. After my liver enzymes kept elevating, I was switched to Xtanti. Also I had 5 1/2 weeks of radiation to my prostate and another spot on my pelvis, followed by a few zaps to my ribs and spine. Personally, I chose to completely change my diet to whole food, plant based and I exercise 3-5 times a week. I am a firm believer that the diet and exercise are helping. No, it will not cure my cancer, but I feel good and the side effects are minimal when your do all you can to feel good.....eat healthy, exercise, meditate, pray if you are a believer, practice mindfulness and stress free living. Easier said than done to someone just diagnosed with the big "C". My first Dr. told me it didn't matter what I ate and to stop running....thankfully I changed to another and went to Duke and he told me "no it's not curable" but keep doing what you are doing and that gave me my life back. I was 46 years old at diagnosis and I have 3 kids to raise and though I don't know what tomorrow brings, I'm planning on being here for a long time. I just did a 5k with my daughter last weekend and did my best time yet. Research and investigate things that have worked for others and make your path and keep living your life. Best of luck to you.
Greeting 45yrsDenmark, First of all sit down and have a cup of coffee with a nice danish. Next Pca is slow growing so the doctor who said 2 years is an idiot. With all the medical procedures and meds nowadays you'll see all of your grandkids....
See a good Oncologist who specializes in Pca...
One last thing listen to Tall_Allen because he know his lort (that's a good thing here)...
Oh yeah, one more thing, LAUGH...
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 12/10/2019 6:19 PM EST
Hi 45yrsDenmark!
I DO understand!! I was 45 when first diagnosed with Stage IV, Gleason 7 prostate cancer. It had spread to a lymph node and radiation killed it.
I am still here 14 years later!!
Cheers!!
Mark
Hi
I met a number of fellow PC guys of all ages at the 3D Urology Clinic in Xiangtan.
They include UK, Netherlands, Canada, USA, Australia, Thailand and India.
Dr Soong gets results.
Expensive but the best going.
No drugs and no side effects.
I am on eligard and Zytiga soon added.. and then radiation on the prostate shortly after.
HOWEVER - would it be a better choice to get the prostate removed by surgery? I fellow friend in here recommended that since that gives the opportunity to give radiation later on... and surgery later on would be more difficult if it has already been radiated.
My urologist say that it doesn't matter whether it is removed or radiated.... Once it as spread to lymph nodes and bones as in my case, then it is no use to remove it.. (I am just diagnosed, 45 years old, PSA 88, all 12 biopsies 4+3).
30 dec I am having inserted the 3 gold markers for the radiation - so I need to act fast !
Hej Denmark,
I was 58 at diagnosis, gleason 9 (4 +5), but otherwise similar PSA and mets and aggressive.
Mayo Clinic would not remove my prostate due to the bone mets. It is somewhat controversial as to whether it should be removed or not. The jury is still out, as they say over here (when you have bone mets).
My urologist ordered Chemo first (6 rounds of taxotere) before doing radiation.
My PSA dropped to 4 after chemo, and all the tumors had disappeared or been significantly reduced before going into radiation. The idea being that weakened, smaller tumors would be knocked out by radiation. My PSA went to undetectable.
I can still do further chemo down the road, and I have not even started on Zytiga as yet or anything else. I am 18 months on this journey. No need to panic.
You are young, and there is no reason why you will not live many, many more years.
That 2-year death sentence that your urologist gave you does not make sense to most of us here on the forum.
I lived in Denmark for 6 years, a wonderful country with the best food on the earth, but I am not sure it is the healthiest food. There are some who say that diet does not matter, but consider a more organic, anti-inflammatory diet - maybe more Mediterranean than dansk - rugbrød rather than franskbrød, rundstykker, o.s.v.
Held og lykke on your journey ahead.
I read that "debulking" (prostatectomy after metastasis) can extend life an extra 3 years on average. If the surgeon is prepared to remove the + nodes, nerves and even part of the bladder if the cancer has spread there. My friend did this (partial cystectomy and full prostatectomy at USC) and lived about 11 years even though his PSA did not stay down long. He was climbing ladders up until his last two weeks of life. Not sure what he died of, in his 70s.
The full dose radiation may work well on the 2 bone mets once the prostate is out.
diagnosed at 52 w/stage 4, Oct2017.
The question of radiation (with or without bratchytherapy) vs RP has been vigorously debated on this forum (and in the medical community). They seem to be more or less equivalent. I chose RP because I wanted the "mother ship" out, and did not want to have that cancerous mass sitting right next to all my other internal organs. There are new evidence/theories suggesting that the primary tumor site is in bio-chemical communication with the cancer colonies, and still actively involved in the spread of metastasis, and new mutation.
Other than that, stay as healthy as you can: diet and exercise, and a positive attitude. Science is moving faster than ever, and a lot of new drugs/treatments are on the horizon. You have a very long road ahead of you.
QUESTION: A second opinion from an American specialist for my situation !!!!
Could someone recommend me who to contact in order to get a second opinion to my case in the US? Heard some of you mention the Mayo clinic... ?
DIAGNOSE FROM DENMARK:
As you can read above, I am from Denmark (45 years) and was 2 weeks ago diagnosed with very aggressive prostate cancer with PSA 87.8 and 4+3 in all 12 biopsies (all type Adenocarcinoma) with metastases to lymph nodes and to bones at least 3 places in pelvic area and a small shadow on a rib based on a PSMA PET/CT scan.
TREATMENT INITIATED IN DENMARK:
6 months Eligard injection 2 weeks ago + first 30 days with Biculatimide. In 2-3 weeks (when finished with Biculatimide) I am adding Zytiga and mid of January also 20x powerful radiation (only at the prostate - 3 gold markers will be put in). After the 20x radiation - then we will see what the situation is, my urologist said..... Most likely they can only offer chemo from that point in time where new treatment is initiated (and maybe that would not even be an option for me, if I am too sick and as it might not give much more time to live than the time the chemo takes itself). So not very optimistic prognosis anyway!
SECOND OPINION:
How is the process for me to get a 2nd opinion from etc. the US? What medical center? What's the approximate cost? I am thinking to have a Skype conference call so I don't have to fly over there, since I am not allowed to travel right now with my current condition (I suppose I can send my data from scan and biopsies).
Please reply if you have any recommendations as I need to act fast... I am not sure I at this point where I have already started with the treatment strategy proposed by the Danish team here can change much due to the current ongoing treatment, but still.... also to get an idea of what should be next step since the Danish team does not have much hope that there is much more to do as next step at all..... Makes me scared....
When I need a heavy hitter, I go to Johns Hopkins in Baltimore, MD. I see Dr. Emmanuel Antonarakis
hopkinsmedicine.org/profile...
Since he’s out of my insurance network, the cost for a consultation is usually about $500.00 but you need all records sent to him in advance, and have genetics also if you want the time to be productive.
45yrsDenmark• in reply to
Thanks, I ran into the first problem Friday when I tried to get a 2nd opinion from the Mayo Clinic in Minnesota. They require you to show up in person (and maybe also do some examination). They will not take my case based only on the medical records. And since I am not allowed to travel (no insurance company will cover when I am in my current un-stable condition), that is not an option.
Do you know if that is the same at the John Hopkins too - need to show up in person? Also, I don't know how to deal with the US medical system as it is privatized (which it is not in Denmark)... So they are not only doctors, but also salesmen? So would it be a sufficient objective assessment?
I'm sorry, I don't know the answer to your question. In my case, my local doctors worked with the doctors at Johns Hopkins. I don't know how it would work across the Atlantic. There are people on this forum that have crossed borders...hopefully they can help you navigate the system. I wish you the best of luck.
Hi,
Sorry I’ve just caught up... I was 43 when diagnosed in Jan ‘17 with Gleason 9 (4+5) Grade 5 very aggressive PCa. I have fought hard and have been through more treatments than I care to remember (check my bio). I’m now onto Enzalutamide having processed to mCRPC. I would be happy to be in touch with you and assist in any way I can. I too have very young kids (three boys aged 3, 5 & 8 at diagnosis).
Cam
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