HealingWell
Search Close Search
☰

Welcome New Member Gonnabeatthis

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/9/2013 6:08 PM (GMT 0)
On another thread a new member wrote:

gonnabeatthis said...
My husband was diagnosed last Monday. Age 59, Gleason 6 and nothing found on the DRE. His PSA went from 1.87 in 5/12, to 3.46 in 5/13 and 4.44 in 9/13. He has a significant family history in that a brother and two first cousins from the same side of the family have had procedures.

Firstly, I want to thank ALL of you. Our meeting with the doctor is this afternoon and we were both of the "get this out of me" mindset. This thread has been very informative and has helped me have a clearer head about the conversation. He tends to be, as one of you described himself, a worry wart when it comes to medical things and I now realize how important this is to take into account. Also he is not in very good shape (not for my lack of trying to get him to join me at the gym! LOL!), but it is interesting to hear how physical condition plays a role in the recovery. I will start a new thread and try and get him on here ASAP (didn't mean to hijack GC's but wanted to express my appreciation to him and all of you).

But I now know my thinking is to take a little time, make a few lifestyle changes and then do something about it. Obviously the choice is his and I will fully support whatever he decides. My mission is to get him to not rush into anything without fully educating himself. I have done a lot in the last week, but his approach has been to push it to the back of his mind and he really didn't want to talk about it. I think he just needed some time to absorb. But this afternoon's meeting with his urologist will likely be overwhelming for him. So thankful for all of you sharing information, thoughts and recommendations. God Bless the existence of this forum.

Welcome to HW. Sorry you have to be here but hope we can help. It sounds like you already have your mind right in terms of taking some time and getting educated before pulling any triggers. If you can give us some more detail re hubby's case, e.g number of cores and % of cores, we will be able to give you some added thoughts. I'll start with an early one though, that is to get your slides re-read by an expert prostate pathologist like Epstein or Bostwick to make sure you know exactly with what you are dealing.

Good luck and stick with us!

Jim
Posted 12/9/2013 6:26 PM (GMT 0)
Thank you Jim and I will certainly find that out (just added to my list of questions I have compiled from the various sources this forum has provided) All I know is that it was a 12 core biopsy but do not know how many were positive or the %. We have some concerns with how little we were told over the phone--I knew enough to ask the Gleason, but Michael, my husband was at work and was not even informed of that number last week when he spoke to the doctor (doctor first called home and spoke to me and then called him at work so there were two separate conversations). I might be wrong, but I think that should have been provided as part of the conversation!

I am hopeful after today, my husband will sit with me and review this site and some of the referred sites to learn more. As I am sure some of you have gone through, his approach has been to try to not think about it until today.

Could you tell me how I find Dr Epstein or Bostwick? I was going to ask if the pathologist was a PC expert but did not know there were ones better than others...
Posted 12/9/2013 6:47 PM (GMT 0)
Hi and welcome.

The contact information for Epstein, Bostwick and Oppenheimer (plus a write-up on biopsy 2nd opinions) may be found in the thread (at the top of the page of all PC threads) titled, Newly diagnosed with PC? - read this thread first

That thread has a lot of information for you and your husband to start your education process.

best wishes...
Posted 12/9/2013 6:55 PM (GMT 0)
Let me tell you that you've come to the right place. I would never be where I am today without the knowledge and support I received here. Best of luck!
Posted 12/9/2013 7:17 PM (GMT 0)
gonnabeatthis -

Regarding something you touched upon in your original post: that your husband doesn't seem to want to be concerned with the details of all this, and appears content to let you take the lead in gathering information and even guiding him along on this.

We have had discussions about this very topic here in the forum, and a general feeling about it seems to be that it does work, and is perhaps the way to go for some people.

Some guys when diagnosed want to know every detail, while others, and your husband may be one of them, much prefer to let their spouses, significant others, etc., do all the "legwork" about getting information.

So if he feels this way, it is not necessarily a bad thing, just perhaps the way that he feels more comfortable with. Perhaps some of the wives, daughters, etc, here on the forum who are with men who have this attitude would like to weigh in and offer their own thoughts on this kind of situation. But again, it's not necessarily a bad thing that he's doing.

BTW, if as you mention your husband is a Gleason 6 (G6 for short) I assume you are already aware that means he is likely a lower-risk case of prostate cancer at this point. His G score could be upgraded (increased) later under various circumstances, but G6 is on the low end of the rating scale.
Posted 12/9/2013 7:25 PM (GMT 0)
Gonnabeatthis, You are on the right track. Learn as much as you can about PCa first. From what you've given us, it sounds like they've caught this early, so that's a good thing. You should have several options available to you. Your husband's urologist should be able to help you get a second opion on the slides at the labs of Bostwick or Epstein. Let us know how we can help.
Mike
Posted 12/9/2013 8:35 PM (GMT 0)
Gonna, Casey has already answered your question about how to contact Bostwick or Epstein and also referred you to the excellent "sticky" thread at the top of our forum which I heartily endorse. You also might consider a couple of books (at least) at this point. I recommend Dr. Walsh's "Guide to Surviving Prostate Cancer" and Dr. Scholz "Invasion of the Prostate Snatchers". Others undoubtedly have their favorites but I like these two for a broad perspective of our disease.

We'll look forward to further updates. If your husband wants to join/participate that's great but we also work well with women so you are always welcome!

Jim

P.S. Also, a number of us have links in our signature to our "journeys". You might want to check these out as well for some first-person perspectives on various treatment options.
Posted 12/9/2013 8:47 PM (GMT 0)
Welcome to HW. Sorry you need to be here but it's a great place to be.

Sounds like you're on track. You have every chance for a good outcome.

hang in there,
Andrew
Posted 12/9/2013 10:43 PM (GMT 0)
Thanks to all of you...Ironically I did read the thread about the newly diagnosed, but I guess it was information overload! I will go back and look specifically for how to find Bostwick and Epstein. So it is REALLY early. Only 1 core and only 7%!! Happy to hear that, however, doctor is recommending surgery due to his age (soon to be 59). He did a nice job of laying out our options. I definitely saw that my husband was overwhelmed and 81gyguy my hubby is DEFINITELY one of those you described. He has always left it up to me to do the research on important matters as I am a reader and he is not. Thank you all for making me feel welcome as there is a big possibility he won't be comfortable joining.

After everything I have read, I am still of the opinion my husband should drop about 20-30 pounds (he is 230 and 6 foot tall) and focus on getting himself into shape. He is on blood pressure and cholestoral medications, both of which I feel are lifestyle driven. It just seems to make sense to me with low scores that being in better shape (if he is so inclined) makes sense for an easier recovery. Any thoughts?

I was also not aware that it is a radiation vs surgery decision (meaning you cant do surgery if the radiation doesn't work and instead must go to chyrotherapy or hormone therapy as a secondary--is this right?). His stats are SOO low, and I just feel that getting in better shape and enjoying as long as he can on AS is the way to go. His doctor did not seem to agree; his reasoning was too many patients who leave with good intentions and come back five years later with the PC in a much more advanced status. I am neurotic about medical matters and still ensure all 4 of our children go to the dentist and doctor on a regular basis (they are 21, 19, 17 and 16). Do we really need to do surgery with all of its inherent risks? Any thoughts would be appreciated.

Susan
Posted 12/9/2013 10:47 PM (GMT 0)
One other thing you all should know which is definitely always in the back of my mind. My father had PC and had a RP. He died 7 years ago of a heart attack after enjoying 10 years after his RP. One interesting note that my sister just brought up was that my Dad was on hormone therapy after his RP (we both remember him getting shots in his stomach). How can that be??? Isn't an RP a complete removal and therefore 100% effective? Probably a question I should have asked the doctor, but didn't remember it at the time....Any insight would be greatly appreciated.
Posted 12/10/2013 12:08 AM (GMT 0)
You do have time to make your decision. I was diagnosed in late September and had my RP procedure last week. I did my research on all treatment options until i decided on surgery mainly due to my age. I am 41 years old. I spoke with six different doctors from my home state of RI, experts in Boston and New York as well. All told me surgery was my best option. But you need to do the research and make the right decision for you and your husband. Take the next few weeks and read read read all you can to help you arrive at a treatment option. I listened to the advice given to me by other members to read and research. I was looking for the "right" answer from someone, but no one hear will tell you what to do, because you need to know what is right for you! The more info you have the better prepared you will be to make that decision. Good luck to you and your husband
Posted 12/10/2013 2:42 AM (GMT 0)
Susan
Welcome aboard! The good news is your husband has very little cancer. He will have any and all options available. Take some time to learn all of them, you have time. PCa is a very slow growing cancer.

Yes, the general belief is if you have surgery, if recurrence happens, you can have radiation later. It is harder but not impossible to have surgery after radiation. But, with the stats you have given us so far, whatever you (he) decide, he should be able to beat this thing the first go round.

If you have surgery and remove the prostate, some of the cancer may have escaped the capsule and further treatment may be necessary. Again with his stats, this will probably not happen to your husband.

When my urologist gave me the bad news, he said your life will change from this moment on. It would be a good time for your husband to make some lifestyle changes to prepare for his fight. Eat better, back off the red meat, exercise, etc. Six months before my surgery I was 6' 1" and 224 lbs., 1 month before my surgery I was 200 lbs., 1 week after surgery, I was 193 lbs.

Take a deep breath and relax. You have time! We all know what you both feel like right now. You are not alone any more.

Bill from Florida cool
Posted 12/10/2013 6:46 AM (GMT 0)
He sounds like a perfect candidate for AS, if you have access to a good program.

Gonnabeatthis said...
One interesting note that my sister just brought up was that my Dad was on hormone therapy after his RP (we both remember him getting shots in his stomach). How can that be??? Isn't an RP a complete removal and therefore 100% effective?

The recurrence rate for RP is about 30%. Nothing is 100% effective - there's always a chance the cancer has already left the prostate capsule (for RP) or has left the prostate capsule plus a margin around it (for radiation). It may be that your father had a distant recurrence which could only be treated with hormone therapy. If the recurrence were local (in the prostate bed or local organs, or local lymph nodes) they are usually treated with salvage radiation. The SEs of salvage radiation are worse than if he had just been treated with radiation originally, so it's a bad idea to go into surgery thinking he can always have radiation later.

A recurrence after modern forms of radiation is usually not local, but if it is, salvage brachy or SBRT has better outcomes in terms of SEs than salvage surgery. Some also use salvage ablation (e.g., HIFU).

But this is all pie-in-the sky worrying when your husband's case can probably just be watched for a long time, or treated with 90%+ certainty that it won't recur.

- Allen
Posted 12/10/2013 11:41 AM (GMT 0)
From another Susan, a very big welcome to you. We seem to have more than our fair share of wives/partners here called Susan!

So sorry you needed to find us but very glad you did. We’ve all been where you are now and for most of us looking back, it really was the worst part. The initial diagnosis then the huge learning curve and decision making process. I remember fearing our lives would never be the same again but here we are 3 years later and life is exactly as before.

My advice, both take your time, absorb all the information you can and do not be rushed into making a decision or having treatment and continue to be there for each other.

Whilst you educate yourselves on the treatment options available just remember that a surgeon will recommend surgery as it is what he does and believes in, the same as a radiologist will likely recommend radiation for the same reason. With such a small percentage of G6 I urge you both to look fully at AS -there are many good threads and advice on here about AS, you have plenty of time.

Wishing you both all the very best and sending you a hug from over the pond.

Susan
x
Posted 12/16/2013 5:42 PM (GMT 0)
Susan

If you choose AS, you should consider a second more involved biopsy. I received my final pathology report last week and i had much more cancer than was found in my initial biopsy. I was a gleason 7 with 90% percent of slides involving my 2.0 cm tumor. I had considered AS as well, but was told by multiple experts that surgery was best for me. Thank God i listened. You do have time to make your decision, and if you choose AS, please stay on top of it.
Posted 12/16/2013 6:18 PM (GMT 0)

Susan, you said...
My father had PC and had a RP. He died 7 years ago of a heart attack after enjoying 10 years after his RP. One interesting note that my sister just brought up was that my Dad was on hormone therapy after his RP (we both remember him getting shots in his stomach). How can that be??? Isn't an RP a complete removal and therefore 100% effective?

Sadly, RP is not always 100% effective. Sometimes the cancer is farther progressed than the doctors think and some of it has escaped the prostate. It is possible that your dad had a recurrence after his surgery and the hormone shots were used to keep a lid on it. Hormones can suppress that missed cancer for quite a long time. Ten years is a pretty good run for hormones but not at all unusual. That is probably what went on with your dad.

It is also possible that his surgeon was using temporary hormones around the time of surgery to make the surgery more effective. I'm not sure how often that was done seventeen years ago but I know it is done by some doctors today.
Posted 12/16/2013 6:20 PM (GMT 0)
Gonna,
If you are going to get a 2nd opinion from Bostwick I would ask them about the Polaris test. It's a test that indicates aggressive PC vs low risk PC and this information would be helpful in any choice he will be making. Thus far his stats indicate low risk PC and if confirmed he is best served by a structured monitoring program from a doctor that is experienced in monitoring AS patients. His current doctor doesn't seem to fit this category.
The side effects from any treatment have to be a prime consideration in choosing any treatment or non treatment. My own philosophy is use the treatment that has the least side effects in dealing with low risk cancer, as it is easily cured and chances of dying from it are very rare, and to be much more aggressive in treatments when dealing with aggressive cancer as these have much more risk of spreading.
Posted 12/17/2013 1:52 PM (GMT 0)
Hello friends and thanks for all your advice. We met yesterday with a doctor who came highly recommended at the Smith Urological Institute on Long Island and we both really liked him. He basically said he was not in favor of radiation given Mike's age. He does not do the Robotic procedure but does recommend Mike has a RP "in his own timeframe" (My husband is not considering AS at this time...With his significant family history and the relatively young ages of our children, it is just not something he feels he can consider...). So at this point he likes June so he can recover on his boat and I am done working to wait on his every need!! LOL!

Anyway, I am a little confused about surgical options. I understand RP and Robotic (we are going to see a doctor who favors Robotic surgery as well just to hear both sides. ) My sister in law said there are three...RP, Laproscopic and RObotic. I thought Laproscopic went hand in hand with robotic...can someone clarify and please all thoughts on Robotic vs. RP (and laproscopic separate from robotic if there is indeed such an option) are as always very appreciated.
Posted 12/17/2013 2:24 PM (GMT 0)
New Info his PSA jumped to 5.6 from last one in Sept of 4.44..Doctor says not to react too strongly since the jump could be due to the biopsy. Doctor said to come back in 2 months so it is the same lab (I remember reading on here that PSA's can change due to the lab)....thoughts? Should I be concerned or is the doctor right? Should this alter our June thoughts??
Posted 12/17/2013 3:10 PM (GMT 0)
Dear Gonna:

Laproscopic (non-robotic) is not practiced as widely as the two main surgical options, i.e. Robotic-Laproscopic and open...those are your main surgical choices.

Having said that, did you take the time to get the slides re-read and did you follow JohnT's excellent advice to get a Polaris test as well? That would be a really good move.

Also, I understand that this doctor recommended against radiation but I strongly suggest that you owe it to yourselves to get other opinions from brachytherapists who may have a different point of view. This is a big deal and you get one chance to get it right. You may ultimately decide on surgery but please take the time to visit multiple disciplines so you don't chance having regrets at a later time.

Jim
Posted 12/17/2013 3:49 PM (GMT 0)
Gonna agree with Jim above: get opinions from several docs, specialists in each treatment.
Posted 12/17/2013 3:54 PM (GMT 0)
Hi Susan,

Thanks for the update, glad to hear you guys are not panicking (no need to with hubby's stats!) and are meeting with medical professionals. 

Having said that I would agree with both JohnT "The side effects from any treatment have to be a prime consideration in choosing any treatment or non treatment. My own philosophy is use the treatment that has the least side effects in dealing with low risk cancer, as it is easily cured and chances of dying from it are very rare"

and also Tudpock "you owe it to yourselves to get other opinions from brachytherapists who may have a different point of view. This is a big deal and you get one chance to get it right. You may ultimately decide on surgery but please take the time to visit multiple disciplines so you don't chance having regrets at a later time."

I am somewhat surprised that the doctor you just met with stated that he is not in favor of radiation due to Mike's age (59); but then again as others have mentioned surgeons will favor surgery, radiologists favor radiation!  But the reason I say that is because I underwent LDR Brachytherapy over a year ago, at age 56, with significantly greater cancer than Mike is presenting, and am doing great.

When we hear the "C" word it is common and normal to run the gamut of emotions; once you get past that it's time to do research - lots of research!  During that point of time for me I did so, to the point of what I would consider being addicted - but looking back it was all worth it because when I was done I knew that I was fully armed with knowledge not only about PCa but also the various treatment options - and results.

During all of this I collected, copied and purchased a number of studies and reports that I would be happy to share with you guys if you are interested; simply click on the envelope below "A Yooper" on the upper left corner of this post.

For me personally, with my young age and excellent / active health - first and foremost I wanted the cancer cured.  But to be absolutely honest, quality of life and side effects ran a really, really close second!

Continued best to you both! 


Posted 12/18/2013 4:20 PM (GMT 0)
Taking your advice and have made an appt with a radiologist for Dec 31. It makes sense to hear everyone out and my husband now agrees.

Yesterday was quite a milestone- we told our children (One was away at college and finally came home). Kept it upbeat and focused on the high cure rate and the fact that their Uncle Buddy, Poppy and Uncle Tommy have/were all over ten year survivors. Probably one of the more difficult aspects of this process.

One other question..my sister in law said Polaris test is not covered by insurance...is this true? has anyone had it covered?
Posted 12/18/2013 8:08 PM (GMT 0)
AYooper. I would like to get those studies. I do not have outlook. is there a way I can get your email address and send you one directly? Thank you!
Posted 12/18/2013 8:15 PM (GMT 0)
Hi Susan. Sounds like when you click on my envelope it defaults to MS Outlook? Not sure how to get around that as we're not allowed to put our e-mails here in the actual posts/threads. If you would go into your own "My Profile" you could then go to the "Edit Profile" tab and add your e-mail address. Then, I could contact you.

Mods, any other ideas?
✚ New Topic ✚ Reply
12