I am 53 years old, I got diagnosed with metastatic hormone sensitive prostate cancer. I did a blood test in April 2019 and the results stated that my psa was 80, and then a month later my psa went up to 148. My doctor sent me to a urologist, they did a nuclear bone scan and discovered that the cancer spread into my bones and that I also had a blood clot in my neck. They also performed a biopsy and found out that the cancer also spread to my lymph nodes, so the doctor said that they can’t operate because the cancer had spread too much. In June 2019 the doctor advised I do hormone therapy and prescribed Zoladex LA 10.8mg. Then I visited an oncologist and he suggested chemotherapy and I started taking DOCEtaxel 130mg July 26 2019 and I have to take the medication every three weeks for six sessions.
My Story: I am 53 years old, I got... - Advanced Prostate...
My Story
I am so sorry to hear this at such a young age. I am 81 my dx was a month before yours. Dx stage 4, Gleason 9. I suggest you follow your docs plan. If he is not a medical oncologist, find one. There is a lot of new stuff going on out there that can extend your life for years. Make sure you are in good hands at a top notch cacer center. Tell us where you live and someone will
suggest a place or doc to see if you need it.
I have had excellent results with Lupron/Zytiga/Prednisone for nearly two years. Only important side effects have been decreased energy and hot flushes (easily remedied with a fan and a little patience). Started with PSA 4000 and now at 0.02. My mets were described as 'innumerable'. You might benefit from a talk with an medical oncologist. Maybe my meds will be OK for you, but maybe not (I was 76 when I got my DX).
How has the response been so far?
Hello,
I initially had PSA of 950 and multiple bone and lymph node mets (more details in my biography). After 1 year of ADT plus 6 cycles of DOCETAXEL I had a surgery to remove the prostate. The goal was to shrink the tumor size (prostate) to make it easier to operate.
This brings no cure, but can bring benefits in the later course: it can avoid local complications (like urethral constriction) in later stage. According to my urologist, there is the theory that new mets only arise from the mother tumor. And last but not least it is a good feeling when the source of the evil is out of the body. I wish you all the best for the following treatments.
Regards Theo
Would love any info you have on the mothership theory of tumor expansion.
That was the testimony of my urologist and a medical oncologist in the hospital where I was operated. It was not referred to studies but to some cases from the experience of the docs. I did not deepen the subject then. In 10 days I have the next appointment with the urologist. I'll talk to him again. I can give you an update then. Regards
Found this one:
ncbi.nlm.nih.gov/pmc/articl...
Interestingly, in 23.3% of the cases, the regional metastasis was not clonally linked to the index primary lesion. These findings suggest that focal ablation of only the index lesion is potentially an undertreatment of a significant proportion of prostate cancer patients.
Very interesting and informative. Thanks for sharing !
I had similar dx and had my prostate and several nodes debulked using IMRT rather than surgery by an excellent radiologist. He told me it should extend the amount of time I get out of ADT. To me it made a lot of sense to reduce the tumor burden.
Later when I started seeing Dr. Myers he said that killing off the “mother ship” was one of the best things that I did early on.
Ed
Yup, if you have the option, kill the host. DX @50 PSA 8.1, Gleason 4+4=8 Pc1c. Post RP rising PSA. Start ADT, with SRT. Got 6 years. Clean Bone and MRI however Pet showed Lymph nod involved at L5. SBRT got it but 2 others popped up in other Nods. On Xtandi with Lupron now PSA back to Nil. Will ride this pony as long as we can. 59 now...
Correction.... It's not the Mother Tumor.... it's the MotherXXXXing Tumor. Good riddance... and Regards to you too Theo....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 07/29/2019 5:53 PM DST
What was your PSA at time of removal surgery? Did that matter in the decision?
In November 2016 after chemo and 11 months ADT my PSA was at 18 (initial at 950) and has risen again. I then started with ZYTIGA. In January 2017 was the operation. There was my PSA at about 2.5. After the operation the PSA is further down to 0.32. But that was rather the positive effect of ZYTIGA. When I look at the course of my PSA, the surgery didn't have such a big effect.
But I would do it the same way again. At the first diagnosis I was 49 years old and at that age you want to do a little more. The main reason for the surgery was the avoidance / reduction of late complications and the reduction of tumor mass. This mothership theory was casually mentioned by 2 or 3 doctors.
On the other hand: With ZYTIGA was the lowest PSA level in May 2017 (=0.32). Since then the PSA has increased continuously (up to about 40 in April 2019). Currently I had several CT, BS, PSMA-PET/CT and SPECT-CT. At the moment I have only known metastases in the bone that grow. No new metastases have been added since the surgery. Maybe it is true after all...the mother ship theory ? Time will tell... Regards Theo
Geanton, I wish you the best in your treatment. We are the same age though my cancer is not as far in progression. This site is a great source of information and camaraderie. Some very knowledgeable people to answer your questions as you go through this. My prayers are with you.
Keep up the good fight. I was diagnosed 27 years ago and still here. There's a lot more out there now than there was 27 years ago.
It sounds like you are getting very good advice. Let us know how well the Taxotere works for you.
TA, what is your take on removal of the "mothership"?
You mean the prostate? The term "mother ship" implies a misunderstanding of how metastases spread. It has shown to be futile in most cases, but may have some utility when there are still very few metastases. Here's what we've learned about it:
pcnrv.blogspot.com/2018/09/...
PC also spreads from metastases to metastases and from micrometastases in systemic circulation. Taxotere can reduce all sources. You have to treat what you can't see.
Thanks for the reply, I read the link and found it helpful plus I respect your knowledge and experience.🤠
I think you meant motherxxxxingship.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 07/29/2019 5:56 PM DST
I did but I didn't know how to spell it, just like you.🤠
LOL
Yep I remember now, we went to separate schools together and had same English teacher.... Mrs. Bridge... she too couldn't spell for xxxx.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 07/29/2019 7:46 PM DST
Welcome to the club of fighters, we have been poisoned, hormone shot which slows it down to a halt. We manage the stress of a psa tests, hot flashes that is the women's curse or nature is just messing around with us. We fight on, alter the diet, excercise and keep going, you are young, 15 years younger than me so that is a good thing.good luck and keep the positive atitude, it really helps.
Geanton, I was dx nearly 29 months ago at age 51 with a PSA of 415. i immediately did chemo and lupron. After 4 rounds i hit a nadir PSA of 0.1 and it stayed there for over a year. I tolerated chemo very well with fatigue. I combatted it with exercise. My PSA is now 1.1 and my Onc is not overly concerned. He will not change my treatment of lupron and xgeva for the bones. I'll have scans in Oct. Because you are relatively young, you should do well with the chemo. Keep us posted on your progress.
Nick
God bless!
Thank you for sharing and for joining the forum. I hope you will let us follow along your path with you. Walking together helps.
Sorry to hear about your disease.
Have you done your genetic profiling yet? If not I highly recommend you do it. Given your age, I you may have harbor a mutation that can be targeted by advanced therapies.
Second, I recommend you search this site (or google) multimodal therapies - whereby even in the advanced disease, the primary tumor is treated (radiation or surgery) you are young enough to tolerate the side effects.
Good luck! Chemo at your age with the Mets spread is a good call. I was diagnosed at stage 4 with uncountable spine Mets at age 55. PSA was just 11. I found out due to severe back pain that landed me in the ER. But I did immediate chemo for 10 rounds and ended up on the other side with PSA undetectable and no visible Mets. It’s been exactly 2 years last week since diagnosed and I feel as healthy as ever. Of course doc warns me that it will come back BUT I want to give you hope that the hard chemo days ahead are worth it and these two years have been good to me so far!
That's is my story, diagnosed in April and started chemo May 22. I am 62 and just finished 4th chemo, it's not that bad considering my options. First chemo hit me the hardest on day 9 & 10. 2nd chemo wiped me out by day three, but wasn't as bad as 1st chemo. I just finished 4th chemo last week and I felt tied 4 days later but am doing very well now. I went for a swim this past weekend and am going to work out today. I've had two Lurpon shots and may PSA is 0.177
Keep a positive attitude. hang in there and we will both fight this damn cancer!!
I was diagnosed last October with lots of mets, have done 6 cycles of docetaxel, and now on Zytiga. Details are in my profile. Like BigM62 says, you have hard days ahead but if the treatment works it will be well worth it. I've been a runner since age 40, continued running through chemo (though it was mostly a zombie walk for the last two cycles) and now am running as well as I have in years.
Welcome Geanton. Stay strong! My hubby was dx at 44 (April of 2017) with a PSA of 718. Numerous bone mets with extensive lymph node involvement (he was originally dx with biopsy of lymph node in his neck). He started with a similar tx plan. Taxotere, Casodex and Lupron. MO also advised against removing the prostate as cancer was too aggressive. He had a wonderful 22 month response with PSA falling as low as .14! There is tremendous support here. Ask lots of questions, research when you can and line up a great support team. We will keep you in our thoughts and prayers.
Nikki
Sorry you are here but you'll find lots of support and great info. My husband was diagnosed Aug 2017 at age 49. Gleason 9 PSA >677 mets to hip, spine, lymphs. He did Lupron and taxotere almost immediately (6 rounds as well) and now lupron, zytiga+prednisone. His PSA has never gone below 7 but trend has always been down (a couple of small upticks that docs say were not statistically relevant). He feels good, some fatigue and hot flashes, but works and carries on pretty much as before. He's always been rather fit and active. Last 2 scans showed tumor shrinkage.
Will look forward to hearing that your treatment plan works well. Write EVERYTHING down from your docs to your thoughts on treatments to weight etc. It I'd good to look back for trends etc.
Polly
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