Although I frequently read this forum, it's not really my thing to post here. But I remember when I was first diagnosed, I was grateful for all the stories and information everyone here provided. I thank you all for that. I also think that some others who are beginning their journey may find my story helpful.
At age 48, my PSA test came back at 114 and the subsequent biopsy and CT scan showed a large tumour in all areas of my prostate. Based on all the imaging and tests, it was initially classified as cT3 cN1, cM1 (Gleason score 4+5=9). It was metastatic and they saw a clear sclerotic lesion on my pubic bone -- likely the cancer has spread there (but possibly it was a benign bone "island"). He described it as aggressive and very high risk.
My urologist said normally you treat with hormones, radiation and chemo. But given my age and (otherwise) good health, it might make sense to do surgery -- a radical prostatectomy. Normally they only do that with cancer that hasn't spread because it usually cures those men. The benefit for me would be to remove the original source of the cancer cells (de-bulking the cancer), which might simplify later treatment. He said he wasn't the guy to do it, so he referred me to a surgeon who he described as "one of the best".
The first thing I remember my new doctor saying was my cancer was "likely incurable". He needed more tests and he wanted to review my case with the other cancer specialists at the hospital. The MRI came back with no evidence of seminal vesicle or neurovascular bundle invasion. The chest scan and bone scans were negative for metastatic disease. But, what about the lesion on the pubic bone? They decided a biopsy was not recommended because it'd likely break the bone.
(I should mention that in the first two months, I asked for frequent PSA tests -- like every week or two. What I saw was my PSA bouncing up and down +/- 25%. 114 -> 100 -> 142 -> 96 -> 82 -> 90. This makes me question relying on a single PSA test every 3 months as some people do. )
He suggested a plan: Six months of ADT to slow to spread of the cancer. If the bone lesion shrinks, then we will know that it's cancer. If the cancer was fairly locally contained, he'd be comfortable doing the surgery. Otherwise, it was a judgement call. He said, based on his own surgical experience and what he knew at the time, there was maybe a 10-15% chance the surgery would be curative. Either way, it might help down the road even if the cancer escaped the prostate.
So, I started my ADT (Firmagon) and had "an average response". In the first month, my PSA went from ~100 to 3.14. After 6 months it was at ~0.45. The scans showed the tumour had shrunk some, but the bone lesion was unchanged. Not bad news, but it was not convincing for him. So he referred me to UCLA for the 68-GA PSMA-PET scan. The scan didn't detect any PSMA in the lesion. At this point, my doctor felt there was a good chance that it was just a bone island (benign) and it seems the cancer had not taken root elsewhere in my body. But again he cautioned that this was still a very aggressive, very high risk cancer. So we were on for the radical prostatectomy.
In October I had the robotic-assisted laparoscopic radical prostatectomy. The doctor reported "pT3b (involved 27.5% of the tissue with extensive extraprostatic extension and leftsided seminal vesicle invasion) prostate adenocarcinoma; Gleason 4 + 5 (based on prostate biopsy; Gleason grade could not be assigned on prostatectomy due to androgen deprivation affect); pN0 (14 lymph nodes); negative surgical margins; pre-operative PSA 115"
At 6-weeks and 10-weeks post-op, my PSA is undetectable (< 0.02). Interestingly, after removing my prostate (and the accompanying tumour), my testosterone rebounded higher than it was when I first started ADT. Not sure what that means.
I guess I was expecting that when you remove the big tumour, the PSA would be pretty undetectable, so I was pleased but not surprised. But my doctor said "I don't think you realize how good this news is". He said he wouldn't have been surprised if my PSA had measured at 20 after the surgery.
So here I am a year into this. For the first time since I received this news, I feel that this death sentence isn't necessarily set in stone. It appears that the vast majority of my cancer is gone. If I'm honest with myself, I do expect it to return. But, thanks to my very skilled and knowledgeable doctors, I am in the best of all positions to fight it when it does.
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notjohn
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Great story Mike....thanks for sharing.....it is hard to wrap your thoughts around having this.... you seem to have done well.... best of luck to you....
I just focused on the medical stuff. I omitted the psychological struggle, the struggle with incontinence and ED and no libido. Struggling to raise young kids and support your partner and family. Struggling to find good information and to understand it. Struggling with hot flashes and chills. Struggling with ADT and the mental fog and memory lapses. Struggling with isolation. Struggling to stay fit and healthy.
Struggling to stay me.
I cannot overstate how grateful I am for all the help I received from the healthcare system, from friends, colleagues and community. From this forum. It pains me to think about those of us here who feel like they are going through this alone.
Very nicely written piece. I appreciate you sharing your story. My dad is almost one year in. He began having high PSA readings at your age as well but for years........doctors could not find the cancer, biopsy after biopsy. So here we are almost 20 years later with the diagnosis finally. Last July his PSA was 1200! Test results confirmed metastasized prostate cancer in 6 lymph nodes and possible bone at 3 sites. He began Lupron straight away and 6 rounds of Docetaxel. ITS BEEN ROUGH!!!!!! But we went in knowing we were going to fight. Yesterday was a day of good news. PSA down to 0.11, normal sized lymph nodes and the cancer that was thought to be in the bone is now ruled "herniated disc and degenerative arthritis". He has a few new sclerotic lesions on the pelvis and T6 but these were deemed benign and just healing/scarring from the chemotherapy. Like you, it's been a struggle with all of the emotional and physical side effects that come from such toxic treatment.......too many to list. But, we STILL have him! And the doctor thinks that with such a positive response thus far, he will get many years with the same treatment before looking into other means. Stay strong, Search out good physicians, rally around supportive people, do your homework, and maintain your positivity!!!! Keep us updated. Best wishes- DW's Daughter
Great story and well written. I noticed your preoperative PSA was 115 and curious if you were still on HT just before surgery. With G9 and outside prostate did your doctors recommend adjuvant ADT or radiation?
My last monthly injection of Firmagon was the first week of August. The doctor expected it to be clear of my system by the beginning of November. I had the surgery the third week of October, so the last of the Firmagon was probably leaving my system. I am not taking any treatment for now, just monitoring the PSA.
Even after my PSA dropped to undetectable, I discussed with my doctor whether I should immediately start another therapy. I asked if there was any benefit for starting another therapy as early as possible, rather than waiting for the cancer to take root and show up in my PSA tests. I used the STAMPEDE trial (ADT and chemo together, rather than in sequence) as an example.
He said, we just don't know yet if there's a benefit. And if there is, is it only in certain scenarios. And more importantly, if there is a benefit, why? My take was he's paying attention to the new research, but he's wary of the risk of straying from standard of care.
He gave me the option of seeing a radiology oncologist, but I chose to think about it for a few months. I needed to distance myself from treatment and embrace feeling healthy again for a while.
Happy for you, please remain positive. This G 9 is really tricky and I learned that we should avoid any emotional stressful situation after such agrassive treatment. After emotional and stressful events I had a BC recurrence 15 months after surgery, so my advice try your best to remain calm, may be meditation can help. Also try some suppliments that can delay recurrence, may be Nalakrats can help you in this. Best of good luck wishes for you!
Really great outcome so far. Keep us posted, but hope not to hear from you for a long time. Gleason 9/10 club is bad place to be, but we almost all share that here. Into my second year and in remission with fast growing, invasive, aggressive, metastasized stage 4 Pca.
(I should mention that in the first two months, I asked for frequent PSA tests -- like every week or two. What I saw was my PSA bouncing up and down +/- 25%. 114 -> 100 -> 142 -> 96 -> 82 -> 90. This makes me question relying on a single PSA test every 3 months as some people do. )
That matches my experience. I test frequently, and I've often seen changes of 25% or more in one week. A single test every 3 or 6 months could produce wildly different results depending on the particular day of the test. Before I make a decision, I want to know the trend, not just a single value.
My doctor didn’t object when I asked for frequent tests. Like you, I just wanted to understand my natural variability. So I could interpret the point of time results from an individual test
Agreed. When I first consulted this doctor, it must have been pretty obvious to him that I had a lot of skepticism. I didn’t want to get lost in the system. I questioned everything and asked for second and third opinions. The trust wasn’t there in the beginning.
He never got defensive or felt threatened or got impatient with me. I never felt railroaded into any course of action. By the time the ADT set in and my mind was tired and foggy, he could answer the questions he knew I had but couldn’t articulate. My partner and I grew to trust him.
It’s so valuable when your medical team is understanding when the trust isn’t there yet
Very level headed ... but don’t look at it as a “ death sentence “ rather a life sentence .....Brother ,I screamed poor me for being 53 upon dx. Most catch this 2 decades later . Not you and me . We just had to be first to the party . I can acknowledge that 48 is very young for this APC BS. . because you’re otherwise heathy you have more stamina to see you thru . Continued successes in moving forward .. welcome to fight club young man ...
Thank you for sharing Mike. I like reading about the experiences of others, especially good news ones like yours. We have some similarities. I was diagnosed last year aged 55, gleason 9, initial PSA 103. Unfortunately I have more mets than you had (pelvis, spine, ribs). I have one lesion on the liver that didn't change after ADT so it has been declared benign. So far ADT and chemo are working. My PSA was checked every two or three weeks but didn't move around wildly like yours. Just a long steady decline. The latest is 0.22 so the doctors are happy about that. Best of luck.
I too was 47, Jackie Gleason 4+5, when they told me I was inoperable. Got on a trial did HT w/chemo for 6 months to bring the prostate under control.
Then RP w both nerve bundles, both seminal vesicles, and a lymph which were all infected.
The study called for me to discontinue HY and after 9 months PSA rise. Another DR told me I should have stayed in HT much longer.
It’s incredible that you had a Gleason of 9 with no spread and the bone was benign.
To give you even more hope, I am now 53 with zero PSA and lesions under control with Xtandi/Lupron and living a life. Got to see my first grandchild, a granddaughter, last August.
Miracles are happening every day with detection and treatment of PC.
Keep the Faith, I believe you will be around for a long time.
Wow, great response from a G9 with high PSA. Great to hear.
I was diagnosed just over a year ago (age 43), G9, extensive mets, PSA 55. I've burned through Abiraterone and a Trial, now waiting for Docetaxel to start, lowest my PSA has got to in a year is 18, My oncologist says mines a bitch!
Fingers crossed this time around I'll get some traction.
I hope science can learn why some people respond to these drugs and some don't respond so well. It's like every patient is this terrible puzzle.
I hope you keep up the exercise and eating well. One of these therapies will work and we all want you to be as healthy and strong as possible. Hoping you start to see some remission with the Docetaxel.
.02 PSA after surgery when the cancer has escaped the prostate is very good news. My PSA after robotic RP was at 12. Its been a bit of a puzzle as to why it was so high because he removed the cancerous nodes and tissues near the prostate, and the margins were negative (supposedly). Scans since surgery can not see mets anywhere (I keep asking....so where is it?). It has taken me over 2 years of ADT (now on xtandi) to get PSA close to where you are at after surgery.
Very nice! Congrats to you and your team! But you’re right in being cautiously optimistic: pt3b and gl 9 ( like me) is a tough prognosis. Enjoy every day!
Thank you very much for this story - it has given me hope. My partner also had robotic radical prostatectomy 2 days ago and seems to be recovering well. He is up and about walking and eating properly with little medication. His doctor told him that they only found cancer in prostate and one lymph node but sending it all of to get more tests done. We are waiting to see what these say - you are right - psychologically it is a strain. Supportive doctors, family and friends are needed. He is 56, super fit and Gleeson 8. They were also talking radio and chemo as well as hormone therapy but it will all depend on the results from the bits the doctor removed. Keep strong and positive.
We all hope his recovery is smooth. This entire process is hard on everyone, especially the parters, family and care givers. Even though my surgery went very well, the love of my life was still endured weeks of moaning, complaining and self-absorption from me. I think we all know it’s important to have hope and not let the happy moments pass by. It sounds like your partner is doing his best to recover well and spare you that.
I wish you some good news, stability and mental rest.
P.S. I like the "have lots PSA tests done" to see a trend. In addition my partner got his general practitioner to run a variety of health checks (diabetes, cholesterol, testosterone level, bone density) in preparation for further treatment and he wanted a base line to measure from. He plans to have these every 6 months. Don't forget about your general health while fighting prostate cancer. Keeping healthy everywhere helps fight cancer.
Thank you. I cant imagine how hard the past year has been for you. I hope being here is helpful to you. Your supportive words are meaningful. Thank you
Thank you for sharing your story. My husband too was diagnosed November of 2018 age 45. Gleason 4+5 bone nets Right now he’s on hormone therapy and chemo (just finished his fourth round 6 rounds total) so far everything is going good. He recently had another CT scan and the cancer tumors have shrunk a great deal did another bone scan which showed activity but his oncologist at MD Anderson and in San Antonio where we live said that when it comes to bone scans it will show activity and don’t think it’s more Mets. His doctors have said that it’s not curable but controllable and since my husband is young. He has responded very well to his treatments so far. He was in the hospital for a few days this week because his calcium was low so he had to do some calcium treatments and now he is taking calcium daily when before he wasn’t which helps his bone strength. Best wishes and continuing luck
Fantastic journey Mike . Keep on healing yourself .
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