HealingWell
Search Close Search
☰

I just got the bad news....40 years old

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23 4 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/18/2017 5:09 PM (GMT 0)
Well, MrBaseball, I'm another 40something that sadly got a spot on this team of ours... 41 turned 42 about a month after diagnosis.

Totally understand your emotions. I was there too. I actually got confirmation of the diagnosis the day after my wife showed me the positive pregnancy test for our 3rd. My girls are 10 and 8 and the miracle boy is 5.

What changed my mind permanently away from feeling sorry for myself and being sad, was the idea that I couldn't "give it back." It had me and I had it and if I wanted to be done with it I had to devise a way to kill/remove it with the help of professionals.

You are a moderate risk. Take control. Get expert advice. Get treatment by the professional you think is best AND that you are most comfortable with. Your confidence in knowing you'll beat it with the help of the experts around you, will fortify both you and your wife.

Hopefully as the years pass, this experience will be nothing more than a fleeting memory. I'm 5 years out of surgery, G6 (3+3), and I've forgotten the anniversary of my surgery for the last 3 years. I wish the same for you. Good luck.
Posted 7/18/2017 5:37 PM (GMT 0)
How long's it gonna be before any information about PCa that comes from any source other than an RO will be banned on this site. Even general information about PCa will need to be cleared by an RO first. And an approved one at that.

It's refreshing when little 'ol ladies, who don't know any better than to speak the unspeakable...notice the bias....and comment on it.
Posted 7/18/2017 6:00 PM (GMT 0)
Mr B - MY PERSONAL OPINION - read Walsh's book. Yes it's 5 years old, and yes it's written by a surgeon. But it's the best primer I've seen, in the most easy to understand language. And a fast read. Just pick your spots. Don't bother reading any of his comments on radiation, for example.

Also, read the thread recommended by dogdays, it's a good thread with info you should know. Here's a clickable link... www.healingwell.com/community/default.aspx?f=35&m=2652250

Last, as far as emotions all over the place, you are doing great. When I was in your position, my emotions weren't all over the place. All I thought was "I'm done, finished, my life as I know it is over". Couldn't be farther from the truth.

Mr Basebll, I'm a Mets fan, poor me. So it pains me to say this. But think like a Yankee. There's only one thing. Winning. Seriously, sucks to be you, diagnosed at all, let alone so young. But you will win. You are in the process now. You're arming yourself with more information than 90% of guys who are diagnosed. You have the best support system and knowledge base right here.
And your not a G8, 9 or 10.

Read Todd1963's recent post. Diagnosed 11 years ago with a PSA of 3200, pretty much your age at the time. today he got an UNdetectable PSA result, and he's living large.

Hang in there. The emotions, he especially the fear, you are dealing with now, are totally normal and expected (whateverTF "normal" means). They will subside. Give yourself time.

Hang in there, good luck.
Posted 7/18/2017 6:00 PM (GMT 0)

island time said...
How long's it gonna be before any information about PCa that comes from any source other than an RO will be banned on this site. Even general information about PCa will need to be cleared by an RO first. And an approved one at that.

It's refreshing when little 'ol ladies, who don't know any better than to speak the unspeakable...notice the bias....and comment on it.

IT, He posted this on another PCa forum, that, IMHO, favors surgery, and guess what? Almost all of the replies just assumed that surgery was the future for him. Nothing wrong with either his multiple postings, or each forum having some bias. I have been reprimanded more than once on that other forum for mentioning the side effects of surgery. You and I just have to deal with the reality that is. Not every group or everyone is going to agree with our viewpoints, I will credit that other moderator for becoming more balanced in recent months.
Posted 7/18/2017 6:27 PM (GMT 0)
Mrbaseball,
I echo Paxton's thought about Dr. Walsh's book. It's a great resource to learn about prostate cancer, but it's a bit misleading and outdated when it comes to treatment options. With that in mind, you (and your spouse) should still read it, as it helps you understand what your urologist (and later on the radiation oncologist) is talking about.
Another book that helped me evaluate what doctors where telling me and ultimately helped me make a decission on my treatment is the following:
Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together
By Ubel, Peter A.
You can order it on Amazon for about $6.
Posted 7/18/2017 11:18 PM (GMT 0)
Thank you for all the support! I have started reading the book and sifting through all of the feedback given here.

For those who have sent your stuff to John's Hopkins, what exactly do I tell my urologist I'd like sent? Also, how long does it take to hear back?

I'm 188 pages deep in the book and i'm sure more questions to come. Thank you all for everything.
Posted 7/19/2017 12:52 AM (GMT 0)
Just tell them to send the biopsy slides to Epstein's lab at Johns Hopkins. It's a common practice. They overnight them. The whole process usually takes about a week until you get their second opinion. It may cost you $250 out of pocket.

FWIW- I agree with Paxton about the book. How useful is a book last updated in 2012? I assume you've read the sticky on this site for the newly diagnosed and want more? If you want to read something, read the NCCN guidelines for patients. It's easy to follow (arranged by risk so you don't get bogged down in issues that are of no concern) and acquaints you with all the basics:

/www.nccn.org/patients/guidelines/prostate/index.html#

Also good reading are the new AUA guidelines for urologists on localized prostate cancer. I take issue with a few things, but it's not unreasonable:

www.auanet.org/guidelines/clinically-localized-prostate-cancer-new-(aua/astro/suo-guideline-2017)

For the most current info that goes beyond the basics, read one of the two blogs I write for. Mike Scott does a terrific job at keeping it all current:
pcnrv.blogspot.com
prostatecancerinfolink.com
Posted 7/19/2017 1:50 AM (GMT 0)
So based on the information I've been able to gather up to this point, here's what is standing out to me. Tall Allen mentioned the fact that:

There seems to be more cancer on the lateral (outside edge) than on the medial (inner) part. This increases the odds (to 75%) that the cancer has escaped the capsule (although there's no evidence of that)

What evidence would there be to show it has left? How will they determine for sure if it has?

He also went on to say that: Surgery has a hard time cutting out all the cancer if it has escaped the capsule. Radiation treats an area outside of the prostate.

In this case would a course of both surgery and radiation be used together and if not, what do they do to make sure all of the cancer is removed.

I also read in the book that a bone scan is not typically done in patients with a PSA under 10 unless bone pain is there. I have lower back and tailbone pain, would that constitute bone pain?

Also what does likely left that capsule mean? Does it mean it's gone to lymph nodes or other areas where it has metastasized?

Thank you!
Posted 7/19/2017 2:37 AM (GMT 0)
To the best of my knowledge the only definitive way to know if the tumor has broke through the capsule is to have surgery. There are ultra sensitive scans that "may" show it I believe but TA will need to chime in to confirm that one! BUT even if it has broke out at 3+4, there is a very good possibility that it hasn't moved anywhere. My husband was not aware that he had EPE until after the surgery. It was/is a concern but as you questioned below there is the surgery/radiation option if needed. Our Uro gave us sage advise and told us to wait until the first post surgery PSA to see if radiation was needed. Thankfully he was undectable. What the future holds no one knows but to answer your question salvage radiation is available after surgery IF necessary. Our uro had the bone scan and Ct scan performed and my husband was 5.6 Gleason.

As for what it means for the cancer to have "left" the prostate, imagine that the prostate is a walnut and it has a protective layer around it, a bubble say, well if EPE if found it means that the tumor popped that bubble. From a surgery standpoint this can be rectified by a good surgeon by cutting beyond the bubble! when the surgeon sends the prostate to get final pathology to the lab they can tell if the surgeon got it all by confirming that there was no cancer in the area of where he cut! Where he cut is called the surgical margin, that trumps the EPE. I hope this makes sense and that I didn't just confuse you more ;)

Post Edited (Doire) : 7/18/2017 8:42:29 PM (GMT-6)

Posted 7/19/2017 5:17 AM (GMT 0)

Mr Baseball said...
What evidence would there be to show it has left? How will they determine for sure if it has?

If you elect to have surgery, they will look inside and see. If you elect to have radiation, they will use a CT/MRI to see the contour and add a margin of several mms around it.

Mr Baseball said...
In this case would a course of both surgery and radiation be used together and if not, what do they do to make sure all of the cancer is removed.


It is a very poor idea to go into surgery knowing it will be followed by radiation - you get the worst side effects of both. For surgery, they try to get as much as they can. Sometimes the surgeon will take frozen sections and gives it to a pathologist who is standing by to make sure he takes out enough tissue. But with extraprostatic extension, even if there is no positive margin, you cant be sure - prostate cancer can pop up multifocally several mm away from the nearest tumor. For radiation, they just treat the prostate plus a wide enough margin around it to hit all the places it is likely to have migrated to.

MrBaseball said...
I also read in the book that a bone scan is not typically done in patients with a PSA under 10 unless bone pain is there. I have lower back and tailbone pain, would that constitute bone pain


No - they are talking about bone pain from metastases, which would be very rare in anyone with a GS 3+4 and a PSA<10. Bone scans are something to avoid if you can. They are not a test for cancer and will show lots of things that are not cancer all of which must be hunted down. Really just another source of anxiety for an intermediate risk guy like you.

Mr Baseball said...
Also what does likely left that capsule mean? Does it mean it's gone to lymph nodes or other areas where it has metastasized?

That's what your Partin table probabilities say:
"Partin's Probabilities:
Organ Confined 25% -- So, there is a 75% chance that the cancer has escaped the capsule to one of the following:
Extra Prostatic extension 44%
Seminal Vesicles 17%
Lymph Nodes: 14%"
Posted 7/19/2017 12:10 PM (GMT 0)
MrB,

I get it, you're still in the 'drinking from a firehose' phase of dealing with this. Lots of information has been thrown at you, and you're still trying to figure it out.

Let's back to basic steps. Here are a few, in no particular order...

Get your slides sent out for second opinion. Epstein at Johns Hopkins is the best, your Urologist will know how to do it.

Get appointments in Boston, TA has given you some names. With a little finagling it should be possible to schedule them all for the same trip. Go, take your wife with you. Take notes. Write down questions before you get there.

Once you've done that, make a decision based on getting cured "once and done". It's OK to have a backup plan in mind IF you need it, but consider this: with your initial diagnosis, you do have a high probability of cure on the first round. Make sure you ask about side effects, both immediate and long term.
Posted 7/19/2017 12:46 PM (GMT 0)
Tall Allen & halbert, thank you. I appreciate your answering my questions and talking me off the ledge so to speak. I will absolutely get appointments lined up asap. Tall Allen, I am curious as to how you came up with those recommendations for Dr's? I'm not doubting, just curious as to how. Secondly, my local urologist already has a couple hospitals in mind and people he wants to refer me to, how do I handle that, as I have my appointment with him this morning at 11:50? Is there anything I should be asking/telling him at my appointment since he is going to refer me elsewhere anyways?

Thank you!
Posted 7/19/2017 1:03 PM (GMT 0)
Your urologist can refer you to other doctors, but that does not preclude you from also seeing additional doctors of your own choice. Your uro should readily understand this, as the choice of doctors is an intensely personal choice. You may or may not ultimately choose one of his recommendations, and he should be fine with that. If he takes issue with your additional referrals, that's a different problem. I really doubt that he will have a problem, though. I've dealt with several complicated medical issues, and none of my docs have ever resisted my seeing additional doctors of my own choosing.

As halbert mentioned, with G3+4=7, you should be focusing on monotherapy - finding the one single treatment that can give you great odds of a cure all by itself. The statistics show that most of the common monotherapies have about the same cure rates for low and favorable-intermediate-risk cases. In some cases, IIRC, the cure rates at 8 or 9 years are above 90%. How much of your treatment choice should be based on the availability of a backup plan that won't likely be needed? Choose your treatment on its own merits, and on its side effect profile. There are backup plans for all of the treatments these days, so you always have options.
Posted 7/19/2017 1:08 PM (GMT 0)

island time said...
How long's it gonna be before any information about PCa that comes from any source other than an RO will be banned on this site. Even general information about PCa will need to be cleared by an RO first. And an approved one at that.

It's refreshing when little 'ol ladies, who don't know any better than to speak the unspeakable...notice the bias....and comment on it.

island time - Are you talking to me here? If so, let's be clear -- I do admit to having a bias, but I try to let it show only in advising others, when I feel it is appropriate, that they have choices and they owe it to themselves to evaluate all of their options before choosing the treatment that they feel is best for them. I hope I am not coming across as trying to say "treatment XXX is always best." That is not my intention.
Posted 7/19/2017 1:21 PM (GMT 0)
Mr. B.
If possible, I would suggest you get a 3T MRI to more accurately stage your cancer and decide on treatment.
The Partin Tables are statistical probabilities. The MRI is real time information. While not 100 per cent accurate, the MRI is , for one indivual, more accurate than than the Partin Tables.
It appears you are going to be deciding between surgery and radiation, each of which is consequential. The more information you have, the better informed and better choices you will make.
Posted 7/19/2017 1:27 PM (GMT 0)

Mrbaseball220 said...
Tall Allen & halbert, thank you. I appreciate your answering my questions and talking me off the ledge so to speak. I will absolutely get appointments lined up asap. Tall Allen, I am curious as to how you came up with those recommendations for Dr's? I'm not doubting, just curious as to how. Secondly, my local urologist already has a couple hospitals in mind and people he wants to refer me to, how do I handle that, as I have my appointment with him this morning at 11:50? Is there anything I should be asking/telling him at my appointment since he is going to refer me elsewhere anyways?

Thank you!

MrB,

I suspect TA's recommendations are based on the individual's general reputation in the PC community, their training and background, research publications, etc. The universe of PC treatment all-stars is relatively small, and the major players all know each other.

Listen to your local guy, and go see who he suggests, but there is no reason to limit yourself to him or her. The reception desks at the major facilities are used to people calling in and trying to set up multiple consultations in narrow time windows. Some even do multidisciplinary meetings for complicated cases.
Posted 7/19/2017 4:00 PM (GMT 0)
All doctors that I have met with accept self-referrals. Just google their names at the hospitals and call the number they list to set up an appointment. There is no need to go through your local urologist, unless you are with an HMO and those are the rules.

I know their names because I come across them often when I read studies they publish. The other two great ROs in the Boston area are Anthony D'Amico at Dana Farber and Anthony Zietman at Mass General. You would do fine with either of them too. I mentioned the specialists in specific therapies, whereas D'Amico and Zietman are generalists.

The various institutions related to Harvard have a well-deserved reputation - they attract some of the best doctors in the world. They also attract an enormous volume of patients. Practice makes perfect - the more experiences a doctor has with patients, the better he gets in his craft.

I know that not every excellent doctor in the Boston area is associated with a Harvard institution. Richard Babayan, for example is head of Urology at Boston U and is the President of the AUA - certainly a great choice too. The best ones tend to be at the biggest teaching hospitals, and being teachers, they expand the boundaries of their field by doing studies and publishing. I'm sure there are exceptions, and there are many great doctors in private practice. But I can only comment on the ones who have made a name for themselves through the body of work they've produced.
Posted 7/19/2017 5:35 PM (GMT 0)
Ok just back from my meeting with my Urologist. My head is still spinning. I asked specifically about the names I was given and he had nothing bad to say about any of them, but did say that his recommendation is Dr. Ingolf Teurk at St. Elizabeths. He based his recommendation on the fact that i'd need someone very good with the lymph node piece and according to my urologist he is one of the best in the world. Anyone know of him?

I also asked about a 2nd opinion and sending my slides to JH. His response was that he thought it wasn't necessary because it's clear it's cancer and yes they may change the gleason, but given my age, the recommendations would still be the same.

I do have a bone scan that is being set up and fingers crossed on that. I've already had a Ct scan that came back fine.

After asking him about why surgery over Radiation, he said that if radiation for some reason doesn't work, there are very few Dr.'s in the world that would still then do the surgery.


Thoughts?
Posted 7/19/2017 5:40 PM (GMT 0)
He also recommended Dr. Douglas Dahl at Mass General
Posted 7/19/2017 5:45 PM (GMT 0)
MrB, you heard the standard line from surgeons: If you do radiation, you can't do salvage surgery. Which is a true statement. However, after primary radiation, there are salvage radiation options, so it's not really meaningful.

The key, for you, is to decide on the best primary treatment for you, based on a combination of your 'gut', your lifestyle (how much time off can you manage, how active are you now, etc) and the side effects you are potentially willing to live with.
Posted 7/19/2017 7:12 PM (GMT 0)
OK - you got his opinion. Now get opinions from the best in their fields. I never heard of those doctors he mentioned.
Posted 7/19/2017 8:07 PM (GMT 0)
Your Urologist seems to be another minor league player. No second option and not sending slides to Dr. Epstein, are both poor recommendations.

IMHO, you need to trade up to one of the suggested world class physicians.

I've talked to many specialists, and have found that, in general, radiologists are much more informed, open minded, and willing to help, with less ego driven suspect opinions than shade tree urologists and Urosurgeons. Strange.

Good luck!
Posted 7/19/2017 9:32 PM (GMT 0)
My first Gleason was 3+4 and second reading at a different facility was still 7 but this time was 4+3. I was very new at all these Gleason numbers and just figured 7 is still just a 7. With that little knowledge in mind and after a LOT of research I chose Brachytherapy and now seven years later, my PSA remains at 0.10 Of course each of us has to do our own research to determine what will hopefully be the best choice in treatment of our PC.
Posted 7/19/2017 10:12 PM (GMT 0)
Once again, we've got a thread with a dedicated newbie where some held in high esteem on THIS site are overwhelming patient with their "narrow" expertise. Anyone who comes to this site is looking for compassion and "some" guidance. Referring to DR's as "lightweights" or "nobodys" is appalling and the people using these characterizations should be ashamed. In addition, we're starting to get the typical posters lamenting specific treatment options. For shame!!!

Mr. Baseball, the guys who were in the room with you discussing your case are the EXPERTS. Not a bunch of dimwhits on an internet site that have read studies. Don't get THAT mixed up. Hopefully the moderators will sort out what is happening in your thread.

Trust the experts. The value of getting slides evaluated at Hopkins by Epstein is merely confirmation or explanation if there is a dispute. He's THE expert. Take what he says as gospel truth. If you are upgraded, there are considerations for you concerning treatment. The same is true if you are downgraded to 3 + 3... whole different ballgame there.

Don't be overwhelmed by information and opinion. Take your time, do your due diligence, and begin to determine your treatment from the experts you talk to who make the most sense to you... NOT what guys on an internet site think about this doctor or that OR this treatment or that. Trust the surgeons and RO's to give you the info that you need to make your decision.

Again, shame! on those people who are agenda driven on this forum. Shame.

Post Edited (dude1969) : 7/19/2017 4:16:17 PM (GMT-6)

Posted 7/20/2017 12:44 AM (GMT 0)
MrB,

Something I say from time to time in here, to newbies who are trying to figure out where to go for treatment, is to borrow an advertising slogan: go big or go home. What this means, in this context, is to get yourself to the best, highest rated facility you can reasonably get to, and get in to the best, most experienced team leader you can find. One of the things about PC, particularly if you're interested in surgery, is that some experts claim it is one of the most complex and demanding surgeries there is.

If your local guy is dismissing the need for second opinions on your biopsy (you have cancer, it doesn't matter--actually it does matter, a lot), or is trying to discourage you from seeking out the experts, then he isn't really doing his best by you.

Good luck, keep us posted. Get those appointments at Dana Farber or Mass General, and let us know what they say.
✚ New Topic ✚ Reply
12345