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42, newly diagnosed and feeling bullied and confused

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Posted 11/26/2013 3:36 AM (GMT 0)
Hi all

I was recently diagnosed about 2 months ago with PCa following a biopsy. 5 / 12 samples tested positive. This comes after being totally healthy just 9 months ago - PSA well within normal etc (I had to have tests done for immigration).

On the day I was told the diagnosis, the urologist was was already pushing surgery as the only real option, glossing over the other options. He said that I had about 6 months to wait before the surgery. I decided to get a second opinion.

I went to see a second urologist and he was very against surgery, and talked pretty much about brachy therapy as being the best and only option. He referred me to an oncologist to discuss this further.

The oncologist trashed both the surgery and brachy and said that the only way forward was IMRT (TrueBeam) which seems to be his specialty. He wants to do this within the next few months.

So here I am sitting with three doctors telling me three different things. One tells me I have time to make the decision and the other telling me I don't have much time to decide.

I am so confused and angry. Research hasn't helped much because I don't fall clearly into any one category (mostly due to the low PSA).

I realise that any decision is going to change my life from this point onwards. I just wish at least two of these doctors would agree on the same thing.

I am waiting for one of them to explain the MRI results. All I have been told is that the cancer appears to still be contained within the prostate and that bone hasn't been compromised. Nothing yet about the tumours...

Is there anyone else out there who has been through such a confusing time? How did you choose the right treatment?
Posted 11/26/2013 3:50 AM (GMT 0)
Basically they are all used car salesman so whatever they are selling is the best bet and the rest suck.

I will tell you what made my decision at 40 for me.

Basically as far as I was able to understand was this. They are basically three treatments.
Surgery,Radiation and Hormone Therapy.

If you think about it in the order I just put them. If you start at surgery, you have at your disposal, two other forms of treatment.

If you start at Radiation, if for some reason that fails you don't go and do radiation again and apparently there are not many surgeons that can/will do surgery after failed radiation due to the scarring from the radiation. So if you have a failed radiation your next option lets assume is hormone therapy.

I am not exactly sure where Brachytherapy fits in here. I was told I wasn't a good candidate for this due to having Extra Prostatic Extention.

So that being said. I decided on Surgery for myself. I was told the side effects are swift and immediate, but typically get better. On the other hand I just don't like the idea of radiation because, doesnt that cause cancer? What is being caused 10-15 years down the road because of my decision to do radiation at 40? This is all my thinking that was going on in my head back then. Much of it could be wrong but it was right for me.

In the end it is your decision to make. If you realize they are "Used Car Salesman" trying to sell you on their fix, then it is easier to ignore them and decide for yourself.

Again, up to you bro
Posted 11/26/2013 3:53 AM (GMT 0)
Hi James...

I'm 43, I was 40 at the time of my diagnosis.

A G7 typically requires treatment, specially at your age. There are some variations on that theme with some oncologists who claim you would also qualify for AS if you're a 3+4.

Here's the truth, you will do very well with any of those treatments. It's your job to discover them and decide which suits you best.I also think you should find a urologist and/or oncologist you trust blindly, someone to guide you.

Best of luck.
Posted 11/26/2013 3:58 AM (GMT 0)
I think we've all been in the same boat because, thank God, all the available options for someone with your test results have an extremely high success rates, in terms of dealing with the cancer. Your choices may affect your long term quality of life, but you will almost certainly die of something else. From my own experience and from what I've seen from others, a key to moving forward is finding a doctor you trust, and you still seem to have some doubts.
I was similarly confused until I connected with a medical oncologist who specialized in treating recurring PCa. She had the right expertise to help me sort through the options, but no "dog in the hunt" since she would not be treating me. I really trusted her and with her guidance felt like a made an informed choice. Find a doctor you trust.
Mikey
Posted 11/26/2013 4:15 AM (GMT 0)
Hi JamesSm

I was 41 when diagnosed and it was overwhelming but I remember one thing above all from the discussions about what to do.....It was serious from the start so surgery was always the top recommendation....but I was also told that surgery provided me the best chance to rid myself completely of Prostate Cancer....

That is not advice at all...just my experience...

You are being incredibly proactive between the different doctors and even being here....I wonder what each doc would say if you told them what the other two recommended?

Stay close...you will get support here and you will help others as well...
Posted 11/26/2013 4:30 AM (GMT 0)
James sorry about the diagnosis and runaround you are getting but welcome to the forum. There are plenty of knowledgeable guys here to help you sort through it all. Sounds like you are intermediate risk and need treatment but you probably do have multiple good options. But more important than the treatment modaility is the practitioner's experience and skill -- especially for surgery and brachytherapy.

I did surgery and talked to 6 surgeons in three cites before picking one who had done over 3000 surgeries and had world-class stats.

For brachy, you need a radiation oncologist who specializes in that (sounds like the guy you saw was an IMRT guy) and has a lot of experience. There are guys here who are very knowledgeable on that as well.

In the meantime it would be helpful to know more about your stats. For each of the 5 cores, what percent of tissue was positive and what was the Gleason score of each (3+3, 3+4 or 4+3)? Was there any perineural invasion (PNI) noted?
Posted 11/26/2013 4:48 AM (GMT 0)
Thanks for all the responses!

@Percy - funnily enough they do know what the others have said. They all cross paths in the various hospitals.

@njs - Other than whatis below, I have no other info on scores for each, or even what percentage. I will know more about PNI when I get the full MRI back. The one doctor said that as far as he could see, based on biopsy and finger tests that PNI was not noted but needed to be confirmed with imaging.

@NavyChief - I have received conflicting advice about that too. The surgery one said exactly that - "we cut it out and it's gone", while the other said "If radiation doesn't work in the long term, there is always surgery to fall back on".
Posted 11/26/2013 4:57 AM (GMT 0)
Welcome to HW, sorry you need to be in our corner of the world.

We G7s face this all the time and like you say, it's confusing and frustrating. The problem is that you're in a curable zone and any of the big three - surgery, IMRT or seeds - will likely work just fine. The side effects vary a bit and there are questions about the long term effects of radiation on a younger man but the choice is very frustrating. The problem is you aren't going to find any good, positive, logical reasons to do one treatment over the other.

Have you read Dr. Walsh's book, "Guide to Surviving Prostate Cancer"? It good and describes the choices well.

The real key is finding a good doctor you can trust. You might want to check out some of the doctors that specialize in PC (if you can tells us what part of the world you're in, you'll get plenty of recommendations).

The only other guide would be - what are you leaning towards?

In my case I ended up with IMRT because I am not a good candidate for surgery (heart, lung issues) and under my insurance I would have had to travel to another city to get brachy but the IMRT center was a 15 minute drive from home and they checked out to be a good place.

although, at your age, surgery might be a very good choice. But I have no real medical knowledge to back that up.

Keep us updated on your progress,
Andrew
Posted 11/26/2013 4:59 AM (GMT 0)
Surgery after failed radiation is rarely done, and its very difficult an problematic at best, so I wouldn't take that advice at face value.

Any of the 3 methods you have been advised would be satisfactory. The two radiation options would be best if you don't want to game with issues of incontinence and/or ED. Surgery would have the most risk of side effects, either long term or short term..

Sounds like you might need the opinion of a good medical oncologist that primarily deals with prostate cancer, to see if they could give you a good neutral opinion

In any event, don't feel rushed or pressured to make an immediate decision. You only get to choose once, and you need to choose wisely, there are no re-do buttons with prostate cancer.

Continue to take your time, educate yourself, and then choose what you think is best for your body.

Good luck, it's never easy

David in SC
Posted 11/26/2013 5:34 AM (GMT 0)
Hi
We felt the same and infact one doctors said it was G7 and 2TC and the next said it was G8 and 2Ta. We also did a lot of reserach. It tooks us about 3 weeks just to come off the ceiling from the shock and fear. So give your self some time to adjust.
We also had different opinions but from what we found out we were not been given one options that had fantastic results back east. So we requested HDR Bracytherapy and after a 2 month battle they got me into a clinicl trail. In my opinion it was far superior as it is one time blast of prostrate from inside out and they leave NO SEEDS inside. The recovery was good. Followed by some radiation ( oh and 6 months so far of HT). 3 months after HDR recovering well with only slight ED from HT.

Anyway, depending on where you live they may have HDR or not but worth looking into. I believe it is the new way forward.

Give yourself some time too
educate yourself and Follow your gut
Posted 11/26/2013 5:44 AM (GMT 0)
More important than which treatment you choose is the experience and skill level of the doctor doing the procedure. So in addition to what everyone else has suggested, ask very specfic questions of the people involved as to how many procedures they've done. Ask around of others in your local area who they have heard are the "go to" people for the type of procedure you're considering.
Posted 11/26/2013 9:40 AM (GMT 0)
JamesSm,

It is a very confusing time, and I'm sorry you're going through it, but like the rest of us, things will become more clear as you learn more. It sounds to me like you've talked to a few doctors who gave you some very good advice. They are telling you that they can probably cure you with the treatment that they believe in and specialize in. So one way to look at it is that you're in the enviable position of having a lot of treatments available to you that offer an excellent (90%+) chance at a cure.

If you were looking for the doctors to agree and tell you that there is only one right way to go -- that's not going to happen. The decision falls in your court, not theirs. So it's your responsibility now to figure out what is best for you. A good starting point is the sticky "Newly diagnosed with PC - read this thread first."

You do clearly fall into a risk category -- your brand of PC is called "intermediate risk." If you put the words "intermediate risk" in the search bar, I'm sure you can read about how others in your category made their decision. That category means that you will need treatment, but since PC is typically slow growing, you probably have time to investigate and make a decision that works for you.

(One more specialist you can visit, who will also insist his therapy would be the best for you, is a specialist in SBRT.)
Posted 11/26/2013 11:29 AM (GMT 0)
James,  It's been said already, but I can't stress enough, you are in good shape with any of the treatments you've been offered.  Continue to research.  As a G7, you'll want to do something, but it doesn't have to be today.  Look through the "newly" diagnosed at the top of this page.  there's a lot of great information.  It's YOUR decision and you need to take control, as, in the end, it's going to be your choice.  You'll hear from lots of guys on the board who've had very good sucess with many of the different type of treatments.  Surgery, bracy, IMRT, or SBRT should work fine for you.  None of us are doctors, but please ask questions as we've got the perspective of the patient.  Don't panic.  Choosing your method of treatment is one of the hardest parts of this journey.  Feel free to email me, if you's like (just click on my name), and Id be willing to share information I've collected.  Hang in there, once the shock of the diagnosis is over, the real work begins.

Best of Luck,

Mike

Posted 11/26/2013 12:43 PM (GMT 0)
My pre-surgery consultation oncologist said, surgery after radiation was like cutting through concrete.

I went with surgery, so I had at least radiation and other cancer treatments that would follow if surgery failed.

My first doctor, the "cancer discovery" doctor, said I had 10 to 15 years if I did nothing at all.
Posted 11/26/2013 12:48 PM (GMT 0)
Welcome aboard James. Sorry you had to find our forum.

I agree with all the guys that have posted already. You have all options open to you. I might suggest a second read of your slides and a detailed copy of your biopsy. That will tell you much more than you know already. I asked for a copy of the biopsy the day I was told I had a PCa and the doctor made a copy for me.
Start keeping records of EVERYTHING.

All treatments have side effects. You need to decide what is best for you!

I agree with Purg, surgery after radiation is done rarely. I don't know why your doctor suggested that.

Good luck with your decision. It is a great anxiety release when you finally choose a treatment plan.

Bill from Florida cool
Posted 11/26/2013 3:02 PM (GMT 0)
James-

I was 41 when diagnosed earlier this year. G7. PSA 9.

I found a good urologist to be my adviser, and then proceeded to have consultations with the best surgery and radiologist PCa specialists that I could find. (See the links in my signature below for the questions I asked each of them.)

Due to my young age and excellent health, every doc (including the radiology guys) told me to go with surgery - because my long-term recovery should be excellent and because there is not enough data on very long-term (30+ years) impact of radiation treatment.

I strongly suggest you visit the links in my signature below for people newly diagnosed with PCa.

-Gedman
Posted 11/26/2013 4:49 PM (GMT 0)
Hello James, and I'll also extend my warm welcome to our little club. You have come to a good place with immeasurable help and knowledge from those that have "been there, done that" with respect to being told we have PCa, learning about the beast, deciding on a treatment path and moving on. Please keep in mind that with your statistics while I also believe you need treatment, you do have time - time to learn about PCa and the various treatment options - so don't panic! Have you had a 2nd read on your biopsy slides yet?  If not, that should be one of your next steps. Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your decision making tree. Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding your choice of treatment. There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey. I also agree that at your age and PCa stats that you have options - both the good and bad news!  As you move on down this path I would suggest that you talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. When you do, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining") - same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me. At my young age and excellent health, and with no symptoms or issues - while curing the cancer was / is my top priority, at the same time preserving my quality of life ran a very close 2nd. Be aware of this by doing your research and getting these statistics from the practitioners/treatment modalities you may be considering going with. You only get one shot at this - one of the most important decisions we're likely to make in our lives. As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results on the various treatment options that I would also be happy to share with you, so again if you are interested shoot an e-mail my way and I'll reply right away. We are all out here to help - my very best wishes to you in this journey.  
Posted 11/26/2013 5:25 PM (GMT 0)
James,
You have months to make a decision with out any effect. Your low psa is consistent with a small contained G7 tumor, a 2nd reading of your slides from an expert is an important step.
If the tumor is contained all three options will result in the exact same cure. If the tumor is close to the margin, nerves or the apex, the two radiation options will result in about a 10% better cure rate. The short term and long term side effects from radiation are generally less than those from surgery, although at 40 years old the long term effects would most likely be the same as the young heal more rapidly. The flip side is that if you do have issues you will live much longer with them and they will effect you to a greater extent.
The idea of having radiation as a back up is a red herring. If radiation will work as a secondary treatment it would also have worked the first time as a primary treatment. The only reason radiation is used as a back up is that there was a positive margin, some prostate tissue remained behind after surgery, the nerves were spared and they contained cancer or the surgeon was just plain poor. This is the reason that the overall cure rates for radiation are slightly better than those from surgery. Surgery will work only on contained tumors and radiation will work on tumors in difficult places in the prostate as well as tumors up to 15mm into the prostate bed. Surgery is not at all common for failed radiation, but you can be reseeded, have cryosurgery or cyberknife if the tumor is still local. The doses of modern radiation, especially brachytherapy, make local failures very unlikely.
If you want an unbiased opinion Dr Barkin, at pcref.org, is a prostate cancer coach and will guide you through your options. He does not treat, but only coaches patients based on their individual situation and will do phone consults for a small donation to his organization.
Good luck,
JohnT
Posted 11/26/2013 5:53 PM (GMT 0)
James
I mostly agree with what's been said, especially the advice to get a second opinion of the slides.
I looked at internal and external radiation, prostacision (combo), and surgery and got five opinions. Internal was ruled out due to urinary tract symptoms from BPH; external was ruled out due to the need for ADT and the extended amount of time required. open RRP at Johns Hopkins was selected at surgeon's suggestion who does robot and open, but prefers open with high risk cancer particularly when nerve sparing is desired by patient. I also chose RRP because I wanted a cure and wanted to know precisely what was the degree of cancer, which ONLY RP can tell you.

If your second opinion holds up, you do have all the options open to you.
Good luck with whatever you decide to do.
Bob
___________________________________________________
DOB January 1944
1981: prostatitis
2000-2013 BPH, low T treated with avodart, tamsulosin, androgel
PSA History:
Pre 2000 0.4
01-08 0.6
3/09: 0.6
11/2011 2.2
8/2012 2.7
2/2103 5.5
4/2013 6.1
5/2013 6.6
11/1 2013 0.1

6/2013 Bx:PCa Gleason 4+4=8 (Bostwick), 4+5= 9(Johns Hopkins), 2/6 cores, 10%, 40%, DRE neg. (Stage T1c)
7/2013: bone scan and pelvic MRI negative for mets.
9/7/13 open nerves sparing RRP, Johns Hopkins, Ted Schaeffer MD PhD.
9/9/2013 Pathology: SVI, EPE and pos. margin at base (Gl7),N0M0,
(Stage T3b)
9/20 2013 Foley and staples removed;

currently: one pad per day for security, ED (pre-op and post op)
Watchful waiting until next PSA in 3 months
Posted 11/26/2013 7:41 PM (GMT 0)
Hi James... all good advice you already received. The only thing I will add/emphasize is to talk to the top doctors you can find. If you can travel, then talk to the ones outside your location. The results and side effects definitely vary by doctor whether it is radiation or surgery. When talking to them, you should feel free to ask questions like "What is your definition of recovery from ED?" and "What percent of patients recover to that level and when". Somewhere on here there is an excellent list of questions that I have been using when talking to (interviewing) doctors. Even if you don't expect to travel, some doctors will still be glad to talk with you on the phone. (e.g., my wife and I spent an 30 min on the phone with Dr. Burnett of John Hopkins last night).

The big areas I focused on were:
- Recurrence rates and options
- Post treatment ED
- Post treatment incontinence
- If surgery, post surgical margins
- If radiation, post radiation side effect besides ED an incontinence (e.g., bowel problems[Radiation proctitis] or bladder problems [radiation cystitis])

Also, I posted a list of some of the top surgeons in a thread not to far down from this one. It has been a bit more difficult to put a similar list together for Radiation Oncologist.

Take some time, do some research. Just being on this forum will get you a great deal of info... any questions, ask away!

Good luck with whatever you decide

Post Edited (Mikla) : 11/26/2013 12:44:03 PM (GMT-7)

Posted 11/26/2013 8:15 PM (GMT 0)
Hello, James and a belated welcome. Yeah, this is confusing and the good news is that you have choices but that is also the bad news! You will need to get yourself full educated and make sure you make the right decision for YOU. You have received much good advice already but I will just emphasize a couple of items:

1. It's a good idea to get a re-reading of your slides from an expert in prostate pathology like Dr. Epstein (JHU) or Dr. Bostwick (Bostwick Labs) so that you know EXACTLY what you're dealing with.

2. It is very likely that all of the major options will cure your cancer so you have every reason to be optimistic.

3. I will suggest you re-read the post from JohnT. He is one of our most knowledgeable posters. He correctly debunks the argument about "choosing surgery because radiation is a back up plan". That is a true statement but leaves much unsaid. As JT indicated, there are salvage treatments after brachytherapy that are every bit as effective as salvage treatments after surgery. A good brachy expert will confirm this. So, picking a primary treatment based on back-up plans is not a good idea, IMHO, since both radiation and surgery have backup options...a fact often left unsaid by surgeons.

Good luck and please let us know how we can help.

Jim
Posted 11/27/2013 1:00 AM (GMT 0)
James . I was. 42@dx. It's a lousy deal. You are in a good place. With surgery you stand a very good chance of being cured. I can never be cured. I cannot comment on surgery side effects. I was never blessed with that option. At 42 I was told my cancer was terminal. No cure for me. I can't speak for radiation. It has never been an option for me either. I can tell you that every day I wish I was cured and could look back at cancer through the rear view mirror. I know it's a tough call but from where I stand you are holding nothing but aces. I have Gleason 7 as well. Before my dx it had spread everywhere. That was 90 months ago. I am still here but I am still terminal. Good luck in you decision. I hope my viewpoint has helped you in some small way. God bless..... Todd
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