Prostate Cancer Network
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About to start treatment

49 divorced father of 3 children who live with me week yes week no. I am a financial controller for profession and live a happy gay relatioship now.

I was diagnosed with PC last month, February the 15th. Possibly a T3a N0 M0 Gleason 8 (4+4) psa 12,7.

Made ultrasounds, MRI, biopsy and PET exams. Body scan clear. MRI and PET showed no seminal vesicles and lymph nodes invasion but probable extracapsular disease.

I have seen 3 doctors and a radiotherapist as well as discussed the issue with a cousin who is a doctor for a decision of treatment.

Decided on robot surgery with likely RT adjuvant treatment dependent on pathological report after surgery.

Surgery scheduled for April the 5th and I am nervous and afraid of the consequences of the surgery and the follow up of PSA. However I know I couldn't wait to start treatment.

Happy to be in a group like this and waiting for any feedback. Promise to provide further my experience.

Paulo

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Paulo, we were all nervous and afraid at first. I was 45 when diagnosed with similar stats. Surgery, then external radiation when psa wouldn't go to "0". I have 2 daughters that I shared visitation with their mother my x.

I became lucky when we found that Lupron works extremely well on me. Intermittent injections keep psa down.

It has been 22 years and I'm doing ok. I lived to enjoy 2 grandchildren.

You're going to be ok. Keep your chin up and be optimistic. If radiation is an option I would look into Proton. It wasn't around in my area .

Steve

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Steve, thanks for your answer. Very glad to know from your case despite the initial treatment din't work as desired, right?

My doctor is proposing me to do RT just after surgery, so to increase the chance of eliminating PC. You didn't do that, did you? How long did it go till you had your psa up again after surgery?

I don't know what Proton is ... I only started getting to know about PC is since end of January and there has been bad news after bad news that only stopped when body scan said PC was not spread. I have read a lot and I only found confort in places like this by speaking with other people in the same situation.

I am being positive most of the times :-) knowing we may have a life of uncertainty ahead is not yet fully apprehended. Knowing about you is very good though.

I wish you good and I will be posting here my developments.

Paulo

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I didn't do radiation right away. PSA didn't get to "0". New Dr recommend radiation a few months later when PSA got to 3 which I did and PSA went to 0. Dr also recommended hormone therapy at that time but I didn't do it then.

My understanding of Proton therapy, and I'm no expert, is that it can be focused on an area and not do damage to the bladder and blood vessels etc which did happen to me. Proton wasn't available where I lived.

I started intermittent hormone therapy 18 months after radiation when PSA reached 3 again. I get a 3 month shot that takes PSA to 0. When PSA reaches "2" , in approximately a year, I get another 3 month dose. Been doing this for 15 years. Doctors say I'm lucky because hormone therapy doesn't work on everyone and not usually this well. And eventually it may quit working.

I periodically do a mind over matter and tell my body to fight this nasty disease along with the therapy.

I'll watch for your updates and wish you well.

Steve

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What is your psa when stopping and starting lupron on average over the years. Thanks. Rocco

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Rocco

As I mentioned to Paulo I chose PSA of 2 as my number for getting a 3 month dose of Lupron. My PSA is 0.5 or so when tested in 6 months. And around 2 when tested in 12 months.

Dr said some men let their PSA get as high as 8 before they get another dose. I actually prefer the Elegard method of injection over the lump of Lupron shot into the hip.

Steve

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Thanks steve. Since I still have a prostate, iam going to stop a bit higher at .8 and start at 5 and use whateve I CAN to extend the off cycle. Metformin , avodart, crestor, d3 etc. Rocco

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Good luck, it could be worse. A shark could have bitten off one of your legs.

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Paulo, just to let you know, like the others have stated, there is life after diagnosis and treatment IF one does the treatment. I was diagnosed at age 52 in 1992, (now 77) had radical open surgery as that was the standard back then. PSA at 11 at time of biopsy. A year later PSA began to rise, I had 35 treatments of external radiation. a year later PSA rose again. Because my insurance wouldn't cover full hormonal treatment with Lupron, I opted to have my testicles removed to eliminate the testosterone. Cancer was gone but I suffered from severe hot flashes for 18 years, averaging 1-2 per hour. My new urologist suggested that I get a testosterone injection once a month to alieve the hot flashes since it was over 18 years since any PSA showed up. It was quite controversial at the time but my PSA IS closely monitored and I no longer have hot flashes. I have more energy, eat better, sleep better due to the testosterone injections. My incontinence following surgery was minor until about 2 years ago, for unexplained reasons, (possibly new meds I was taking for other issues) I became completely incontinent. My urologist suggested I look into having an Artificial Urinary Sphincter (AUS) implanted - (basically a hose clamp with a on/off button around the tube (urethra) from your bladder to the penis. WORKS GREAT. I highly recommend it if needed. Just telling you all this to let you know there IS life after Prostate Cancer IF it is taken care off early enough. Good luck.

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Thank you so much ng27868168 for you message. I just hope I am caught with treatment early enough.

Tough decision of yours to remove the testicles, but one thing very clear is to have the priorities well defined.

I am learning a lot by following these sites. I made my decision for the surgery withouth being around here, but for a potential next situation I will count on the experience some of you have here.

Thank you, Paulo

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Hello Paulo,

I like your doctor's recommendation of getting radiation after the surgery without waiting to see if the PSA goes up. The reasons for that are 1) Gleason 8 is an aggressive form of the disease and 2) you had extra capsular disease, probably indicating that some cancer remains after the surgery and 3) radiating the area before any remaining cancer has a chance to grow gives you a better chance of killing it all than if you wait to see if the PSA climbs after surgery. I saw one clinical trial - I don't have a citation for you - that found that starting radiation without waiting to see if the PSA goes up after surgery improves the odds that it won't go up.

I suggest asking about taking hormone therapy too. It improves the effectiveness of radiation therapy. You won't like it. It will give you hot flashes, make you feel weaker (requiring lots of exercise to counter that) and will eliminate your libido. However, if you take it for a month or two before radiation and continue for several months after, it may improve your odds of success. You're a relatively young man and I think it make sense to hit the cancer hard in hopes of getting it out of your life for all the years in the future.

As for proton therapy (radiation using a beam of protons rather than x-rays), to the best of my knowledge it is not used for radiating the areas outside the prostate (your lymph nodes and extra capsular extension) and hasn't been verified effective for that.

I know you're going through a trying time but lots of us have been through it and we're still around, still living good lives.

Best of luck.

Alan

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I'll add another point.

I was treated successfully with radiation back in 2003/2004. At the time, the radiation oncologist ordered an endorectal MRI which produced pictures showing the tumors in the prostate and showing a large (seemed huge to me though it was probably just a few millimeters) extracapsular extension. When they did the radiation, using the MRI, they were able to target the extracapsular part specifically as well as doing general radiation for one centimeter all around the prostate.

So I suggest that you ask the urologist to pass on all of the data he has to the radiation oncologist, and ask him and the rad onc too what scanning can be done now (MRI, PET, whatever) that will enable them to find and target the specific problems and not just generally radiate the area. Radiating the area may be a good thing to do but it might be important to really target any known cancer.

Alan

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Hi Alan,

Thank you. I was also told that the chances are better if one does surgery + RT. I haven't seen any report about it though. I have seen though that some specialist say (new) that in terms of radio treatment there is no reason to wait because the body heals well enough to have radio treatment just after surgery.

I am a bit confused now, because the side effects of surgery + RT might be even worse if put the 2 treatments together. Any view here?

After surgery I will ask more about RT to doctos. The very good thing about these conversations in this forum is that I get details and questions to be raised. In on of my research and taks with doctors I saw a radiotherapist who explained me in detail and with videos what they do now compared to the previous years and seemed more conforting. He asked also he needed to see my MRI to check many details which I will surely provide him when the time comes.

Another question I will point out to my doctor is the hormone therapy as you suggested. Another question please to you, if I take hormone at first won't I reduce the effectiveness afterwards if initial treatment does not succed?

Paulo

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On the question of radiation immediately after surgery, I was under the impression that rad oncs used to wait three months for the surgery cuts to heal. But I heard that many years ago and I think the urologist and rad onc that you're talking to will know far more about it than I do. I'd ask them if they think radiation burning and scarring will be worse if they do it immediately, or whether it's not a big deal one way or the other.

I don't know if side effects are worse for radiation immediately after surgery as compared to radiation delayed. Maybe someone's done a study on that. Maybe your doctors have an opinion based on their experience - though I think doctors in general are inclined to minimize the side effects of their treatments and they think that patients have a tendency to maximize them. Not being a doctor, my inclinations are probably more like the patients'.

As far as the hormone therapy is concerned, I don't know if there's good evidence that it's helpful for "salvage" radiation but, if there is, I'd get it. My inexpert speculation is that, even if the salvage radiation fails and you have a recurrence, there's a decent chance that the ADT you get now, and especially the more effective ADT enhanced radiation you get now, will increase the time before the recurrence shows up. By this reasoning, if the ADT you take causes you to become "castration resistant" (i.e., no longer helped by ADT) six months earlier than you would otherwise be, there is also a decent chance that it will give you an extra six months before you have to start ADT in the future. It might be less but it might be more and, what's most important, it might contribute to making you recurrence free.

In addition, I think there is lots of evidence these days that earlier treatment does more good than later treatment. Hopefully, your cancer is on the ropes from the surgery and will be further damaged by the radiation. Hitting that already damaged population of tumor cells now may do a lot more good than waiting until later when they're more developed and no longer under threat from radiation. So you may get more than six months of benefit from six months of treatment today as compared to what you'd get from six months of treatment a year from now.

Finally, I also think that the new more powerful ADT drugs (abiraterone, enzalutamide, apalutamide, proxalutamide and maybe more on the way), plus the new immunotherapies and new systemic radiotherapies (e.g. PSMA targeted Lu-177) with more of all of them on the way, are going to make resistance to Lupron much less significant in the future.

Hopefully, your doctors know a lot more about this than I do, but I hope my arguments here are still useful.

Best of luck.

Alan

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I'm on a mailing list from a service called "Practice Update: Urology Top 10". Their latest newsletter just happens to address some of your questions. See:

practiceupdate.com/journals...

And one particular article:

practiceupdate.com/journals...

If I'm reading it right, it's showing a really significant advantage to getting radiation quickly after surgery.

Alan

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This is interesting (surgery + RT, and the timing of such combo). My Dr. said that starting RT too quickly after surgery may impact recovery from incontinence (i.e. wherever you are when you start RT, that's where you will likely end up - minimal future improvement).

Have others heard this or have thoughts/experience? He was suggesting to add the RT combo 6-12 months down the road once incontinence issues are as minimal as possible (he is a proponent of the combo for me, just not right away).

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Hi Alan,

Thank you so much for your feedback. The links your posted both are the same. Was it deliberately?

I have an article I could send you if I would know how to post the link here :-)

Let me try and write down:

radiationtherapynews.com/20...

I am taking notes of all people are telling me here. I hope some of them I may not need them :-)

You take care,

Paulo

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Well, that article answers my question from an earlier post. Will share with my Dr. and get thoughts (as he is at teaching facility, he is generally very up-to-date on current studies).

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Hi Paulo,

Oops. I didn't mean for the two links to be the same. One was supposed to be to the current issue of Practice Update, but I screwed up.

Here's the home page for the organization. They'll want you to sign up (it's free) to see their articles.

Alan

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Hi Alan,

I did the registration already :-)

Thanks,

Paulo

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Welcome to the group and know there is a lot of love to go around here. There is certainly a lot of information too. You are blessed to have the support of your partner, as we have all agreed in this group, support of love ones is a great piece of the pie. As is commonly said in this group," you are not alone." Praying for all the best in your treatments and for wisdom in the modailty of treatment you will have.

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Thank you KingRasP for your kind words :-)

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