diagnosed today - now what?

Hello everyone,

I was given my diagnosis at 4:25pm today that I have PCa. My head is swimming and all I can think of is my 6 year old little girl and her future.

I'm not sure what to write, other than what I remember I was told.

12 samples, 2 positive, 10% each. Left side lower corner, and mid section just above it.

Gleason score of 6, which he said the majority of people have when diagnosed.

He does not expect that it has spread outside the gland. I think he said it was rated as moderately aggressive, but I an not sure as I was still trying to grasp the news.

The Doc said he was surprised to see the results as he thought I just had a normally elevated PSA. I'm glad I insisted on the biopsy even though PSA was steady.

My concern is he was surprised by the result, I hope there is no other surprise he is considering not likely.

I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more.

some questions if anyone can help.

- How to select a surgeon?

- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?

- Has anyone had a Gleason score under 5 or 6?

- Is the 70-80% for 15 years a known statistic or specific to my case?

Everyone here was very supportive with my questions before today. I appreciate it very much.

Thanks,

 

d-

Sorry to hear of your news. I was just checking HW as it was about 1 year ago I had the same news. Sounds similar to me, my age was 50 with psa of 3.6 and gleason of 4+3. One thing I found out was there were a LOT of people ready to give advice, I heard all about how I should get seeds or protons but in the end to me it just made the most sense to have it surgically removed so I can know just what was in there. I am happy to say that I have now had three zero psa tests and have virtually no urine problems. I agree with the above advice that says find an experienced doctor (I think the guidline I read is 250 surgeries).  The guy I had did 1200 but we have a local guy who has only done 120 but I have spoke to 3-4 people who were very pleased with his work. In the end I guess it needs to be a balance between his experience and your comfort level with his education, personality and the facility.

Here is a few things I found very useful:

1) Get a book called "Prostate Cancer for Dummies" very informative yet not scarry. All the information I found to be accurate after the fact.

2) If you can find a local Man to Man prostate support group try to go even just for 1 meeting. I found it to be a good resource for information,  including the scoop on local doctors.

3) There are simply so many decisions to make, even after selecting a treatment you need to choose a facility and doctor. Pray for Gods wisdom in these matters.

Best wishes to you and I'm glad you found this site - It too was a great help both pre and post treatment. 

Reachout,

Thank you for you feedback and the time taken to provide it, and your sense of humor. Your reply has helped settle some nerves and initiated positive thoughts. 

You mention radiation. The Doc said that if radiation was used now, it would make it much more difficult to treat any reoccurence because of scarring.  Does this make sense?

Is there anyone here that was treated with Proton Therapy? If so, what are the pros/cons?

Thanks again to everyone.

 

Definately, as the others above have already stated, don't go off the deep end over this. I know, I did when I was diagnosed with essentially the same stats as you have. But there are many people here who can give you great advice about what to consider next. I have to admit that having both of my parents die from colon and breast cancers I was of the school of get the cancer out as soon as possible. Even my surgeon told me I could go home for 6 months and think about all the options. You have a relatively low aggressive cancer. Gleason 6s don't appear to spread very often outside the prostate capsule. Of course the biopsy could have missed a higher grade cancer since the needle biopsy is like taking 12 shots in the dark, as somebody already pointed out. And yes if you have surgery and then the cancer ever comes back you still can have radiation whereas the reverse situation is not as easy. But there are other options like AS, active surveillance, where you have repeat psas and biopsies every 6 months or once a year to see if the gleason 6 cancer is really going to progress, since many studies show it may go absolutely nowhere. Many studies now show that doing no intervention is as good as doing either surgery or radiation as far out as 12 years without having any side effects. And there are a couple of seeds/radiation guys on here who can give you great advise about those options since many studies show much lower rates of incontinence and especially ED with seeds/radiation. The good news is its a gleason 6 and you have a lot of options. The bad news is its a gleason 6 and you have to decide whether to treat it at all and to live with the possible sideeffects of incontinence and ED if you do treat it............

D-in-sc, the others have given you good replies to your radiation vs surgery question so I have nothing to add. Read through the recommended book, talk to a good radiation guy and another urologist or two, then decide what you want to do. And as others have said your daughter will have her dad around for a very long time as long as you look both ways before crossing the street. For the next 15 years that's more likely to kill you than PC.

d-in-sc said...
Reachout,


Thank you for you feedback and the time taken to provide it, and your sense of humor. Your reply has helped settle some nerves and initiated positive thoughts.



You mention radiation. The Doc said that if radiation was used now, it would make it much more difficult to treat any reoccurence because of scarring. Does this make sense?



Is there anyone here that was treated with Proton Therapy? If so, what are the pros/cons?



Thanks again to everyone.

D,

I am in a similar situation as you, only 11 years or so older. The first thing I would say is to not panic, take your time and investigate all of the treatment options available to you, and then make the treatment decision that you are comfortable with.

I am in the process of starting proton therapy treatment now at Indiana University in Bloomington. I chose proton therapy in part after talking personally with several men from my community who have been treated there. All were very satisfied with the treatment and all had virtually no side effects from the treatment. Every doctor that I talked with told me that with my diagnosis all of my treatment options had the same effective success rate.

This board is weighted toward those who have chosen surgery, and that may be your ultimate choice as well. But frankly I did not want to risk the higher chances of incontinence and ED that according to all of the statistical reports I could find were greater with surgery. I have also talked with several men in my community who had surgery, mostly at Vanderbilt, and the majority still have incontinence and ED issues. If I were convinced that surgery offered a significantly higher cure rate, then I might take another look. But I have not found anything that says this, and neither have the doctors I have talked with.

There are other radiation options besides proton therapy, and you should look at them as well. One of those might be the best for you. I am fortunate that I live reasonable close to the proton therapy center at Bloomington, and that I am able to take the time to go there for the 9 weeks of treatment.

You have a very good chance of living a long life, and dying of something other than PCa. Good luck and bet wishes.

Not sure where you got this info:

" I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more"

According to MSK nomograms, you'll be just fine at 99% cancer free at 15 years, (that's with a 1997 t2a tumor stage.)

Thanks everyone, I am very appreciative of all the feedback, and references. Part of the anxiety comes from not having a plan and the data here is helping to forumlate one.

God bless

d

d-in-sc said...
Hello everyone,


I was given my diagnosis at 4:25pm today that I have PCa. My head is swimming and all I can think of is my 6 year old little girl and her future.



I'm not sure what to write, other than what I remember I was told.



12 samples, 2 positive, 10% each. Left side lower corner, and mid section just above it.



Gleason score of 6, which he said the majority of people have when diagnosed.



He does not expect that it has spread outside the gland. I think he said it was rated as moderately aggressive, but I an not sure as I was still trying to grasp the news.



The Doc said he was surprised to see the results as he thought I just had a normally elevated PSA. I'm glad I insisted on the biopsy even though PSA was steady.


My concern is he was surprised by the result, I hope there is no other surprise he is considering not likely.



I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more.



some questions if anyone can help.

- How to select a surgeon?

- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?

- Has anyone had a Gleason score under 5 or 6?

- Is the 70-80% for 15 years a known statistic or specific to my case?



Everyone here was very supportive with my questions before today. I appreciate it very much.



Thanks,

Hi D in SC...

I know exactly what you're going through. My stats were very similar to yours and I had the same exact thoughts as you. My kids were 13 and 10 at time of diagnosis. Please feel free to email me if you have any specific questions or concerns about this process.

Regarding the 15 year limit, please note that these studies don't really go beyond 15 years . Advances in all types of treatments are such that most of those studies could be considered outdated anyway. Even the way of grading gleason scores has changed in the last ten years. Although I have the same exact concerns as you creeping in the back of mind all the time, it's pretty widely agreed upon that our disease, in most cases, is one that can be beaten quite easily. I do know many many people who had open surgeries in the mid 90s who are still doing fine. And things have progressed so much since then.

I see that you seem to be inclined towards robotic surgery. Based on my experience witht he same procedure I can tell you it's a wise choice. You're too young to be messing around with this. Radiation, from what I was told by numerous specialists can have the same success rate, but as your Uro told you, you cannot have surgery as a back up if needed. Also, depending on your character you have to decide if you a) just want the compromised prostate out of you for good with hopes of confinement, and b) if you prefer a one day procedure with relatively minor recovery or a drawn out process over a few months. That's totally dependent on your personality. I just wanted to get the thing out, hope the pathology would be great and then worry about recovery. In my case I was very fortunate and blessed by the skills of a great surgeon and had no issues at all with urinary control and within weeks was having sex. It's not the same exact thing as before, but considering how I felt before surgery I feel blessed by the outcome. I write this to you 5 months out of surgery.

Regarding surgery, if that is indeed what you select, I would say the following... you must seek out the best possible surgeon out there for you. The skill of your surgeon, along with your health and sexual health going into this surgery will determine how quickly you recover and to what extent you recover. This is a choice you will have to make. I turned down my guy who had performed 400 of these for a guy who has performed over 3000 and who is also an oncologist with experience in open and laprosco surgery.

The surgery honestly is a very doable process, one in which we learn al lot about ourselves. A week after surgery you will be driving around and if your work consists of desk work you will have the option of working. I can work from home so was on my computer working days after surgery. In all honesty the first 3-5 days I spent in bed, sitting and trying to walk as much as possible But after that, and certainly after the catheter was removed, I was almost back to normal or to my new normal at least.

It sucks to get this at our age. As great as things went for me I'm still mildly depressed abut it, very anxious and frankly, pissed off. There are great days and terrible days. In my case the ups and downs, probably caused by post traumatic stress are either very high or very low. When i'm "high" i see how lucky I am to have gotten through it and all is good, but every now and then thoughts like that 15 year max creep into my mind. Technically they're irrational thoughts, but you know how our minds can work. I have received some wonderful advice regarding this new aspect of our life from many here and I am sure you will as well. They tell me we adapt to the worry and 3-6 month PSA cycles and learn to love life even more than before without taking it for granted. Although this will surely take time, I can agree with many who claim it's a better way to look at life anyway in the long term.

Be very selective in the surgeon you choose if you indeed stick with the surgical option. You get one shot at this and you want the best there is out there even if you have to travel 100-200 miles.

I am available to discuss by email or phone if you want. You'll be okay, this is a very treatable disease.

Let's be precise about surgery as a backup to radiation. It is not true that once you have radiation, you "cannot" have RP surgery.

It should be attempted only by highly skilled, experienced surgeons, and it is said to be most difficult, with a much higher incidence of complications and side effects (paraphasing Dr. Peter Scardino's comments from his book). It is almost a "rule" here to say it can't be done, and my uro made the same cursory comment, but followed with the point that given unlimited resources, you will find someone who specializes in almost anything. I don't have unlimited resources. Finding that comment was only possible because I recorded the sessions, and went back to listen again several times. The first "Cannot" dulled my memory for the following comments.

It might be better to say that while it physically can be done, it is not practical.

I tried to consider the possibilities of success balanced with side effects when I chose my first line treatment. In my case, IGRT presented a lower success rate. In the end, the PCa was worse than believed from the biopsy, so IGRT came along anyway.

I know I'm splitting hairs here, but ....

Dear D-in-SC:

Sorry about your dx and I'm not surprised that your head is swimming a bit.  But, you WILL sort it out and likely have a very good outcome.  Some comments on your situation and this thread:

1.  IMHO, you have received some very good input from JohnT.  AS is an option you should consider.  If you can handle the psychological aspect of still having an early stage cancer then AS may benefit you in a variety of ways, i.e. (a) you may never need an more invasisve treatment, (b) if you follow the "active" part of AS seriously, even if treatment is needed at a later date it is likely that the effectiveness of the treatment will not change from the present situation, (c) while you wait you will have the advantages of QOL w/o treatment for some time, and (d) with the speed of medical progress, if and when you do need treatment it may be less invasive than if you get it today.

2.  With your dx you have time to make a decision...don't be rushed. 

3.  You should see a radiation oncologist in addition to uro-surgeons to understand and get educated on your options.  You would seem to be a poster boy for almost any treament including brachytherapy.  That option should cure you at the same rate as surgery but with fewer side effects.

4.  Read and get educated.  Several of the books mentioned are excellent, including Walsh on Surviving Prostate Cancer and Scholz, "Invasion of the Prostate Snatchers". 

5.  As others have indicated, your chances of long term survival are likely to be much higher than you were quoted.

6.  Consider getting a second opinion on your biopsy slides from an expert such as Epstein at Hopkins or Bostwick at Bostwick Labs; you want to be assured you know what you're dealing with.

7.  Be cautious when considering claims from any poster about the ease of his treatment and recovery.  You need to understand the liklihood of what happens rather than just the tails of the curve.

Good luck and please keep us up to date.

Tudpock (Jim)

D - You can email me from here and once you do I will give you my number. I will gladly share my experience and what I learned from it with you. The most important thing to share is that you are currently at the lowest and most confusing stage but that things get better , a lot better, really quickly.

My surgeon is in NYC, a bit far for you but he's certainly one of the best around. His name is in my signature.

David

You asked if anyone here had Proton radiation and wondered about the pros & cons. I did. Cons: It is expensive and increasingly insurance companies are balking at paying for protons. Unless you live within a few miles of one of the handful of centers it requires you to relocate for a couple months for treatment. Pros: fewer side effects (that is the short version...some here will likely challenge that statement, but I believe it to be true - I also believe the long term results to be as good as any other treatment for G6 PCa) This is not much of a forum for people who choose Protons. Take your time, do your research, get various opinions and read everything that John T. posts at least twice.