HealingWell
Search Close Search
☰

Newly diagnosed and confused

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/12/2011 6:23 PM (GMT 0)
Hi all,

about 2 weeks ago I was given the news that at age 54 I had joined the ranks. A 14 core biopsy revealed 1 core with less than 5% of cancer and was rated at 3 + 3 = 6. This was the result of PSA readings in the last 6 months that were 3.3, 3.7, 3.5 and 3.1. My free PSA has been 25%, 26% and 27% with the last three PSA readings and my PCa3 is 15. DRE's all normal.

I am now trying to decide what to do. Talk about overwhelming. I know that active surveillance is an option, but not so sure a good one at my age. I like the noninvasiveness of radiation, but many seem to question using radiation at my relatively young age. Proton beam radiation looks very interesting as a method that minimizes radiation to healthy tissue.

Anyone 's thoughts and experiences would be appreciated.

Thanks.
Posted 6/12/2011 6:38 PM (GMT 0)
Dear Frack:

Welcome to HW...sorry you have to be here but I think you will find this is a place where you can get tons of information that will help you make an informed decision.

With your stats, it is highly likely that any of the primary treatment modalities will be successful in curing your cancer and that is, of course, your primary concern.  Having said that, you might then want to consider the quality of life after treatment as part of your decision making process.

I am personally biased toward radiation and brachytherapy in particular, so you have to take that into account when you get responses from me.  Of course it is generally true that those of us who have made decisions for a particular treament are biased in that direction.

You might want to read an active (and somewhat snarky) thread on the first page of this forum called, "Long Term Outcome for Treatment Choices".  That references an article that summarizes options and also the commentary from some forum members about that article.  On the subject of QOL, I would urge you to Google, "New England Journal of Medicine Quality of Life Study", where you will see a relatively current peer-reviewed study of how patients view their quality of life after treatment.

Re proton therapy, I seriously considered that but was bothered by the fact that most evidence was anectodal rather than contained in long term studies.  But, the anecdotal evidence certainly is positive.

Finally, I would suggest reading Dr. Walsh's book, "Guide to Surviving Prostate Cancer", Strum's book and the Blum/Scholz book, "Invasion of the Prostate Snatchers". 

Best of luck and please keep us up to date on your progress,

Tudpock (Jim)

Posted 6/12/2011 6:42 PM (GMT 0)
sorry to hear that Frack.  Welcome. frankly i'd go for seeds if you meet the criteria but there are no wrong choices.  good luck to you in whatever you decide.

ed

 

Posted 6/12/2011 6:53 PM (GMT 0)
Thanks Jim and Ed. It is good to have a place to be able to shares views and information with others going through the same thing. My gland is about 60 to 70 cc, so I think that rules out seeds. I intend to meet with a radiation oncologist to explore that.

The fact that there are so many treatment options makes this so daunting. While I like the idea of "getting it out" with surgery, it seems from reading the stories on this forum that many, if not most, times the surgery needs to be followed with radiation. If that's the case, why not just get the radiation in the first place and avoid the trauma of surgery?

I've read the argument here that having surgery leaves you with the ability to have radiation later, but the necessity of radiation later must mean that surgery didn't get everything out. Sounds like radiation, which treats the area around the capsule might be better in the first place.
Posted 6/12/2011 7:11 PM (GMT 0)
Frack, I'm sure others will chime in on the radiation vs. surgery issue...there are no shortage of opinions on that one!  Re ruling out seeds because of the current size of your prostate - that is not necessarily the case.  50 cc is the usual cut off but a round of HT to shrink the prostate may get you there.  Obviously, this is a good discussion for you to have with a radiation oncologist.

Tudpock (Jim)

Posted 6/12/2011 7:20 PM (GMT 0)
My husband had early cancer and had a robotic prostatectomy. He just had his first PSA and it was good. His doctor said he was cured. I'm glad he had the surgery because it is out and we don't have to worry aymore about it. He did have some incontinence but he is down to 1 pad per day. Erections are a different story.
Posted 6/12/2011 8:20 PM (GMT 0)
Frackme, sorry you are here. I was diagnosed at age 48 and my mind raced a million miles per hour after being diagnosed. I was totally freaked out and stressed to no end. You have lots of options. You need to get educated and make the decision that is right for you.

Can you let us know where you are from?
Posted 6/12/2011 8:28 PM (GMT 0)
frack, welcome aboard. sorry you have a need for our community here, but glad you found us. with your numbers, you have at least the full spectrum of choices before you, some people's cancer is much more serious out of the gate, and their treatment choices and outcomes are more limited.

please keep aboard and keep us posted, and ask away. no such thing as a dumb question among us. we are all learning, all the time.

david in sc
Posted 6/12/2011 8:34 PM (GMT 0)
Frack,
Every one of your numbers is very low, so you have plenty of time to do some serious research. My prostate was 60cc and went to 32cc after three monhts on Casodex before seeding.Lets look at your stats:
Your psa is low and stable and a prostate of 60cc will generate a benign psa of about 3.6, so there is virtually no psa being generated by your cancer. Your pca3 is also way below normal as is your free psa. Only 1 core at 5% out of 14 is normal for 50% of men your age. It may not even be a pc tumor but looks a lot more like indolant cancer clusters.
So the real question is why do anything now. Give it some time to see what's happening and do a lot of research on AS. Why subject yoursel to any side affects when you can avoid them. I see nothing urgent in your seeking treatment. Now is the time to learn. I would suggest reading "Invasion of the Prostate Snatchers by Dr Mark Scholz" as it has very good descriptions of indolant PC, which by all measurements appear that you have.
Johnt
JohnT
Posted 6/12/2011 9:22 PM (GMT 0)
Thanks to all for your replies.

John T, I had a prior limited (3 core) biopsy. That biopsy turned up HGPIN. That, and a father that had PC, successfully treated with seeds and external beam radiation, lead to the subsequent 14 core biopsy. So the question now, is there anything else in there? From what I've read, that is always a question.

The Sloan Kettering nomograms show a 58% chance of indolent cancer when I plug in my numbers, at least the numbers I know. Believe me, I'd love to avoid the problems from treatment (just don't see how they can be called "side effects!"). One doctor I saw recommended AS for now, but not sure I have the temperament or the gambling tolerance. The same Sloan Kettering nomograms shows a 99% chance of cancer specific survival after 15 years for radical prostatectomy.

I've also read the 50% of 50-year old men show cancer cells, which is interesting as only 1 in 6 men are diagnosed over their lifetimes. What happens to the other 2 out of 6?

I've read the Scholz book, the Walsh book, the Scardino book and some others. It seems like you had great success with radiation. Can I ask why you chose that over surgery?

Thanks again to all.
Posted 6/12/2011 9:35 PM (GMT 0)
Your on the right track.

Research till your eyes bleed.

Not long ago (see below) I was faced with

seeds, proton & surgery.  Only rely on data from

reliable sources.  We have different health, ages,

,biopsy results, and acceptable risks.

http://urology.jhu.edu/

http://www.mskcc.org/mskcc/html/44.cfm

http://www.mayoclinic.com/

http://www.mdanderson.org/

Posted 6/12/2011 11:52 PM (GMT 0)
Frackme- love the namesake chosen....good humor is useful
Posted 6/13/2011 12:26 AM (GMT 0)
Frackme --- the bad news is you've got a touch of cancer. The good news is if you look sharp about it I'd not be surprised if you find doctors willing to pay to be able to treat you. No matter what their specialty, you're going to make their stats look good.

Cancer is serious business, despite my weak attempt at humor above, but these stats are such that you've lots of time to golf all summer, read up on PCa at your leisure and then, come fall make some decisions.

And, as many have said above, knowledge is your best weapon. In that quest I strongly suggest you get a second pathology opinion on your slides by someone who has lots of experience reading prostate tissue. If nothing else, it starts you out on the double check mind set of knowledge power that will make you one of the people who can resaonably say, "I'm cured." Cure is the "C" word us cancer people like best.

Thanks for posting, saying hello, and welcome. I hope you'll keep posting and reporting in.

Sheldon AKA Sleepless
Posted 6/13/2011 12:36 AM (GMT 0)
You will see that I am a surgery guy (with worse stats than yours) but my younger brother, at about your age, did seeds. He is now over six years out and reports almost no PSA, and side effects well covered by Viagra.

In summary, you have lots of choices and lots of time. Take a deep breath and learn as much as you can.
Posted 6/13/2011 1:20 AM (GMT 0)
Welcome Frack. I'll throw in my 2 cents. There are a lot of treatment options available. Research seems to indicate there is not one magic bullet. What works well for one may not be effective for someone else. Okay, here's the 2 cents part.... Consult with a large urology group that has doctors that specialize in all of the common treatments available. Allow me to use an analogy to make my point. If you go to a chevy dealer and ask the sales guy, "what is the best truck on the road", he will tell you Chevy of course. Go to a Ford dealer and ask the same thing. What do you think he will tell you? Right, Ford is best. The reality is that both brands are good trucks but one might have features or options that are better for YOU. The Ford and Chevy dealers may not be as interested in what is best for you as they are in selling you on their brand. My thought is that if you seek out the urology group that offers multiple specialties, you are more likely to receive a treatment plan that is best for you. Your mileage may vary... Good luck in your journey.
Posted 6/13/2011 1:49 AM (GMT 0)
Coxjab,
Are you aware that all urologists are surgeons and have a bias by training. One should see a surgeon, radiologist and a medical oncologist to get an unbiased view.
It is a major conflict of interest for a urology practice to have a radiology lab.
The very best way to get unbiased opinions is never get a 2nd opinion from a doctor that is referred by the doctor that gave the initial recommendation because of conflicts of interests. Choose a 2nd opinion from a doctor that has no relationship to other doctors giving opinions.
JT
Posted 6/13/2011 3:41 AM (GMT 0)
Thanks everyone, for your replies and encouragement. I am going to get a second opinion on my slides and will likely take the summer to decide what to do.

Post Edited (FrackMe) : 6/12/2011 10:26:49 PM (GMT-6)

Posted 6/13/2011 4:45 AM (GMT 0)
Frack,
I initially chose surgery and my wife's doctor recommended I get a 2nd opinion before I did anything. The oncologist I saw said that I had a much more serious cancer than my surgeon found. This was based on PSA and tumor size and he did futher tests that identified a larger tumor that matched my psa. Based on scans, surgery would have had a very high probability of positive margins. My surgeon also said I was not a candidate for seeds, so I never investigated futher until after I got a 2nd opinion. Seeds proved the ideal solution for my situation. Since I had received so much incorrect information from my doctors over a 10 year period I went on a 3 month period of intensive research and read every book and study on PC that I could find. This was one reason I chose combination seeds/IMRT, becasue it was best for my individual stats.

In your case all the information matches and fits quite well together. Of course there is a small chance that you have something more agressive, but there is also a small chance you could also have lung cancer. Possible, but improbable. The only way you can tell if it is really indolant is to watch it over time in a closely monitored AS program. The odds are definately on your side.
My philosphy, after considerable research, is for low risk PC, choose the treatment that has the least side affects, because low risk PC is seldom fatal, even after a failed primary treatment. On agressive cancers choose the most agressive combination treatments as this will give the best chance of long term survival, and side effects should be a secondary consideration.
I fully subscribe to Dr Strum"s mantra: For the most successful outcome:
Know the biology of your individual cancer.
Choose the treatment that best fits the biology of your cancer.
Choose the best artist to perform the treatment.
Good luck in your choice, you have a good head start on your research.
JohnT
Posted 6/13/2011 5:43 AM (GMT 0)
Frack, I would also like to welcome you to the forum.

You have been given some real good info from a lot of the members already. I also concur that with your numbers you have plenty of time to make a decision that is right for you and your family.

Every single member here would have to agree that there is no one approach that fits all. If there were it would make this whole process of dealing with PCa a lot easier. There would be one approach, one cure and would be taught to all as the one way to deal with it.

You did say something though that I would like to address and offer some thought to.

You said; "The fact that there are so many treatment options makes this so daunting. While I like the idea of "getting it out" with surgery, it seems from reading the stories on this forum that many, if not most, times the surgery needs to be followed with radiation. If that's the case, why not just get the radiation in the first place and avoid the trauma of surgery?"

I would offer to you that the number of surgery folks here (me included) represent a really small number in the universe of those that selected surgery. Many of us stay on here to offer support and help to guys like you. That is how we all came to be here in the first place too.

I would offer that the reason you seem to see surgery followed by radiation is because we are in the minority of the surgery guys.

The rest, and I would think it to be a much greater number, are off living their lives and placing PCa in the back of their minds where it needs to be. They do their follow up tests and then go back to living. From time to time they stop back by to tell us they are still doing fine. We love to hear those stories, but they are few. They just don't stop by that often.

There are those here that are not having to actively deal with PCa at the present, they stay here to help and pass the knowledge they have gained along.

Remember how you found us. And remember that those of us here are but a small drop in the bucket of guys dealing with PCa. There are 10s of thousands of guys who have dealt with it and quite frankly just don't feel the need to be here.

Stop by anytime, we love to chat. We also like to hear from each other how things are going. And don't forget, now that you have found us, your story and your ideas and your decisions will become a part of the learning process for those that follow.

So welcome and thanks for being a part of the team. We are just real sorry that you have to be here,

Sonny
Posted 6/13/2011 3:23 PM (GMT 0)
Thanks for that reply Sonny3. I think that I need to keep in mind that many have surgery and then go on with life. I also know people that have done the same with radiation. I guess there is no one best answer.
Posted 6/13/2011 5:46 PM (GMT 0)
FrackMe,

Welcome.  I was in a very similar situation to yours, but began my Prostate Cancer journey at age 56.  Members here are very informative and supporting.  I'm glad to see that you got so many responses. 

Remember that none of us here, no matter how much we have read about and studied prostate cancer, is a physician who is expert in prostate cancer.  There are many opinions on the forum about  prostate cancer treatment.  And yes, opinions do vary greatly among physicians, which is why it is important to get second and maybe more opinions.

With your biopsy statistics, you have plenty of time to research your options and decide on a course of action.  All the best to you!

Posted 6/13/2011 6:45 PM (GMT 0)
Thanks Tim G. I'm glad to see that your case worked out so well. I understand that we are not doctors, but I now know that patients must become as educated as possible in order to make their own decisions. I plan on getting many opinions before deciding how to proceed. It's great to be able to come to a place like this to get other perspectives and learn what questions to ask. I wish you a lifetime of continued undetectable PSA readings.
Posted 6/13/2011 9:43 PM (GMT 0)
John T, Thanks for expounding on my post. Your comments added valid and very important information.   yeah
Posted 6/13/2011 11:43 PM (GMT 0)
Frack,
Welcome to the "community". Visit here often and read past posts. Take your time and make the choice on your own.
Breath deeply.
Good luck.
steve
Posted 6/14/2011 2:38 PM (GMT 0)
Welcome Frack, looks like you have a great start on this.
✚ New Topic ✚ Reply
12