HealingWell
Search Close Search
☰

Husband just diagnosed

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/2/2009 10:28 PM (GMT 0)

My husband just learned last Friday that his biopsy was positive.  He's 60, in good health (just ran a 1/2 marathon), had no symptoms, and his PSA was 1.8.  Needless to say, we were both shocked at the news. 

At this point all we know from the doc's phone call is the Gleason score is 3+3, the ca is localized and non agressive, and is fully curable (can he even say that?).  We have a consult with him this Wednesday to learn more and to discuss options.  He indicated that with my husband's age and good health, he recommends the da vinci surgery.  Is it safe to wait 7 wks as the doc suggests?

I've been lurking on this forum for the last couple of weeks (anticipating the worse) gathering info.  I saw a link somewhere to a list of questions that we should ask the urologist in our first meeting.  Of course, now I can't find it. 

I'd sure appreciate it if someone could steer me in the right direction or post the link.

Also, we would like a second opinion, and was wondering if there are any recommendations for the Rochester NY area.

Any advice re this visit is welcomed.  I'm sure I'll be checking in here a lot in the days to come. 

Thanks so much.

Posted 11/2/2009 10:35 PM (GMT 0)
Bedelia thanks for the post. I am sorry to hear the news about your husband. We know all to well how a diagnosis of cancer can shatter our little glass houses. On the bright side based on the numbers you are reporting I to would agree that your husband does have a curative cancer. There are several options on the table to eradicate himself of the demon. I will not presume to be a doctor and offer that type of advice however we do have some very educated medical minds here on the forum. Remain positive and do not get in a hurry you guys have plenty of time to make an informed decision.
One more thing, I am a huge advocate of 2nd opinions but in your case the numbers are so favorable that unless the insurance company will pay it, I am not sure how useful it will be. Please hang around and keep us posted as to how we can help. If you would like to email me we can chat away from the forum.

peace to you
Dale
Posted 11/2/2009 11:07 PM (GMT 0)
It is always a shock to hear the words "you have cancer" with all the images that conjures up. But your husbands diagnosis with relatively low PSA, good general health and Gleason 6 may not even require him to have treatment but adopt a watchful waiting regime. much depends on the biopsy report which I take it you have not yet received. Learn all you can about the disease (knowledge is power) and arm yourself with those questions. Take a tape as well as often much of what is said in the doctors office does not register. Best of luck and welcome to the forum,
Bill
Posted 11/2/2009 11:32 PM (GMT 0)
Hi Bedelia, sorry you need to visit us here, but welcome.

I hate to disagree with Dale, but I would encourage you to very quickly get hold of his biopsy slides and get a second read on them --- and look for a pathologist who has lots of experience reading prostate tissue. I had a 3 + 3 read with an experienced pathologist and a second experienced guy said 3 +4. The possible presence of "4" cells changed my treatment decision and the final pathology confirmed 3 + 4 --- as much as any pathology can be "confirmed" as it is an art as well as a science, especially if the cells are on the edge.

On the surgery, it is not only safe to wait the seven weeks, it's also likely prudent. He wants all those puncture holes between rectum and prostate to heal up first.

My PSA was 1.5 and so I know the shock of being told of prostate cancer when you're least expecting it.

Sheldon AKA Sleepless
Posted 11/2/2009 11:39 PM (GMT 0)
Welcome to the forum, sorry you have to be here. Here's a list of the better threads with questions to ask the doc:

www.healingwell.com/community/default.aspx?f=35&m=1300628
www.healingwell.com/community/default.aspx?f=35&m=1332402


Hope they help.
Posted 11/2/2009 11:45 PM (GMT 0)
Welcome here, Bedelia, and to your husband too. Glad you decided to join us. I may be biased, but this is the best patient to patient Prostate Cancer web site there is. We watch out for one another, and support each others decision.

Please keep us posted of your husbands journey, and we will be glad to help you along the way.

David in SC
Posted 11/3/2009 12:14 AM (GMT 0)
Bill hit the nail on the head,as it is a shock to hear you have cancer. That passes pretty quickly and most of us likely moved into the info gathering stage, and this brings you to HW. The numbers are good and he is in good shape so you have good reason to hope for the best. Being a runner myself it was hard to give that up for awhile, but I am back into it, just moving more slowly. Keep us posted and there are some great people on here with great advice so please ask as many questions as you need to.

Michael

Posted 11/3/2009 12:20 AM (GMT 0)
Sorry you had to find us but know we are here to help you as much as we can.

1st - Take a deep breath then start getting as much info as you can about PC and about you husband's path report.

2nd. Read the post on this board and move from there.

3rd. There are a couple of books that are recommended I just can't pull the name out of the hat at this time. I will look on the board and try to get them for you.

Best of luck. Do keep us posted.

Jeff T
Posted 11/3/2009 12:22 AM (GMT 0)
Hmmmm, if I personally was 60 and had a psa of 1.8 I wouldn't have gotten a biopsy done. I would keep checking my psa every six months to see if it kept going up before making any rash decisions. Educate yourself on the internet and ask tons of questions. You might want to look at (AS) active surveillance as a possibility. Da Vinci is no picnic at the beach and if I could have avoided it I would have.

T
Posted 11/3/2009 12:25 AM (GMT 0)

Dear Bedelia:

As others have said, welcome to our forum but we are sorry you have to be here.  This place is full of caring, knowledgeable folks and you will receive a lot of willing help.

I would reemphasize a couple of things the others have said, plus some extras:

1.  Please find out where the pathology is being reviewed.  This is a complex disease and you want to make sure you have the best understanding possible.  A couple of the best pathologists are Epstein at Johns Hopkins and Bostwick in Richmond, VA.  Both of those come highly recommended by members of this forum (I used Bostwick).

2.  Assuming your hubby does have G6, there is probably no huge rush to treat.  Take your time and get educated.  There are tons of links at the top of this forum and you should go thru them.  Two books that you should probably read are "Guide to Surviving Prostate Cancer" by Dr. Patrick Walsh and "A Primer on Prostate Cancer" by Dr. Stephen Strum.

3.  Depending on the rest of his stats, you may want to consider Active Surveillance aka Watchful Waiting aka Expectant Management as BillyMac suggested.  There is a lot of data on overtreatment of PCa these days and it may be possible for your hubby to actively watch this rather than treat it now.  If you are interested in this approach, I can add more later as can JohnT and a couple of our members who are actually following this approach.

4.  You should absoutely get additional opinions.  You need to see a prostate oncologist and a radiation oncologist in addition to the surgery guys.  Your uro is likely a surgeon and surgery is likely to be his recommendation to you.  You have several other options and you want to look at them carefully.  Surgery is a BIG DEAL and, IMHO, should be chosen only after a careful review of all options and a complete understanding of the side effects...which you may or may not get from your urologist.

5.  Several men on this forum have had color doppler assessment of their cancers prior to treatment.  To my knowledge that is not offered in Rochester (I spent 30 years off and on there).  I did not even know about that possibility before joining this forum and would have absolutely gotten that if I had known.  Again, if you have interest in that, JohnT and others will undoubtedly give you some excellent advice including where you can go for that assessment.

I think I will stop here.  You and hubby are undoubtedly overwhelmed now but you most likely have time to study the options carefully and make an informed decision about what to do.  Good luck and I know you will find lots of help and support here.

Tudpock

Posted 11/3/2009 1:05 AM (GMT 0)
Wow - you're fast! Thank you all for your replies.

T40- my husband had his annual physical (first time seeing this doc), and thought the prostate felt asymentrical, and recommended a urologist. The UR said he wasn't concerned with the shape, but was concerned with the hardness of the prostate. He said a lot of times he knows it's cancer, but in this case, he just didn't know. Thus, the biopsy.

I'm not sure he would do the watchful waiting. His dad died at 60 of colon cancer, his mother of lung cancer, and his sister is a breat cancer survivor.

I doubt if my hubby will ever get on this site, as he finds the research makes him more anxious. Plus, he's not the most communicative person. I just worry about him, and it breaks my heart to see him go through this.

I'll post more info after our meeting on Wednesday.


Thanks again.
Posted 11/3/2009 1:43 AM (GMT 0)
Bedelia,

The prostate people say "cure" which most often means the cancer is contained within the prostate gland and has not spread. If it goes away and doesn't come back in ten years they consider that a cure.

Generally, if the cancer has spread, then they discuss "palliative" measure, which means delaying the worst aspects of the disease, including death.

Getting cancer is not lucky. Getting it diagnosed early is lucky. In that regard your husband is fortunate that he had doctors who pressed the issue. Mine did not.

I had relatively low PSA and chronic prostate infections. The infections masked an earlier diagnosis. I had my surgery soon after the biopsy, against conventional wisdom, but my gland was so rotted with chronic infection waiting would not have made a difference.

With a lifetime of chronic prostate, kidney and testicular infections, I was glad to get rid of mine.

OBB
Posted 11/3/2009 2:39 AM (GMT 0)

Just curious why some people over 60 have psa of 1.5 or 1.8 what is causing their Dr to do a biopsy ?? I didnt think that PSA was out of line, was there another factor that made a biopsy nessasary ?

My PSA is 1.08 and my DRE neg and noone ever said get a biopsy and im 50 !

Posted 11/3/2009 3:01 AM (GMT 0)
Belinda,
What were the number of cores and what was the % of core. Did the doctor just feel a hard prostate or a nodule? These questions are important. about 50% of all men over 50 have PC cells in their bodies. At 60 it's probably closer to 60%. If the number of cores was small and % of core under 30% it's probably indolant and will never hurt him. If there is a nodule, then by all means seek treatment. Please get a couple of 2nd opinions from doctors that specialize in PC. Look on the Prostate Cancer Research Institute website. Their recommendaton is not to treat low core, low psa gleason 6 PC as 75% of these will never progress and the 25% that do are treated with the same cure rate as if it were treated immediately.
JohnT
Posted 11/3/2009 3:41 AM (GMT 0)
Jeff, aka Worried Guy is from Rochester area. Maybe he will sign on or you can go to his signature and get his e-mail.

I think the rest of the guys are telling you good advice as to time. Obviously we don't know all of your stats, but it would appear that a G6 with a low PSA gives you time to watch this thing, sometimes for several years. Maybe a Color Doppler would be a good test to get as well.

There is such a thing as a low PSA PC that is also a possibility. I am curious as to why you had a biopsy in the first place. Did the URO say he had an abnormal DRE ? If that is the case, he may have something growing that is causing the prostate to bulge or have a hard area. Those are reasons to pursue treatment sooner.

No need to panic, just take your time, learn all you can, and if possile , get more than one opinion.

And, keep us informed. We will alll help you howeber we can.
Posted 11/3/2009 4:55 AM (GMT 0)
As others are telling you--get some more opinions. (I got six before making a decision.) Don't rush into anything. I'd also recommend getting a color doppler test. The cost of the airfare to a doctor that practices such a procedure will be minimal if it helps to relieve some of your and your husband's anxiety. You want to make sure surgery or radiation is absolutely necessary before traveling down those roads.
Posted 11/3/2009 5:13 AM (GMT 0)
As others have said, take a deep breath. Your husbands stats are low and suggest that you have lots of choices and lots of time to make them. By that I mean months and months.

A second opinion -- definitely. No one has mentioned it but seeds are a definite possibility. As has been said, surgery is no walk in the park.

As you can tell from all the responses there are a lot of guys around who have been diagnosed and treated for
prostate cancer and are still looking at the green side of the grass.

A family history of cancer is frightening, but each kind is different and one should not transfer fears from one kind to the other.

So, hang around, ask, learn -- and remember that we aare always here for you and your husband.
Posted 11/3/2009 5:24 AM (GMT 0)
Looks like there may be a color doppler test available at Department of Urology, University of Rochester Medical Center, New York:

http://www.ncbi.nlm.nih.gov/pubmed/1846434

May be worth it to investigate. :-)
Posted 11/3/2009 12:33 PM (GMT 0)
If you live in the Rochester NY area, I highly recommend Dr Jean Joseph at Strong Memorial.   He is one of the leading surgeons in the robotic surgery and has been doing them for 10 years with well over 1300 plus surgeries under his belt.   Dr joseph did my surgery two years ago and I have no Ed issues and can get rock solid erections without drugs, so he did a excellent job of saving my nerves.  Continence wise, I used 5-7 pads a day for about three months, and then was pad free. 
Posted 11/3/2009 12:49 PM (GMT 0)
You're all amazing with your support.  It's already helping me.

It seems like some of you are wondering why he had the biopsy.  I explained earlier that his DRE was suspicious, and was referred to a URO.  The URO said the prostate was hard (didn't feel any nodes).  To be on the safe side, he had the biopsy, which came back 3+3.

I'll definitely check out Dr. Joseph and the doppler at UofR.

I'll post more once we see the URO tomorrow. 

Posted 11/3/2009 1:07 PM (GMT 0)
Bedelia, as the wife of a PCa survivor, I can definitely empathize with you! Your husband's initial stats sound good. However, there's no real way of knowing exactly what the situation is at this point since a biopsy is a general sampling of tissues and is not definitive. Not sure what your husband's clinical stage is - that's the stage determined by how the disease was discovered.

As far as waiting time for surgery, 7 weeks is perfectly fine. My husband choose the da Vinci robotic surgery and had his about 7 weeks after diagnosis. According to the uro/surgeon, the prostate needs to recover from the biopsy - apparently it swells up after being "hit" with the needle several times and needs to recover. So, you do have time.

As others have said, there are several options at this stage of the game. If you can get a color Dopler, go for it - this will help determine more accurately what is going on and can show whether or not the cancer is truly confined to the gland or has escaped. This picture will determine what treatment(s) would work best.

Good luck with your research and decision.
Posted 11/3/2009 2:15 PM (GMT 0)
Hey Bedelia (Amelia),
When this episode in your life is done you'll be able to write a book.
I live in the Rochester area and have some recommendations - for and against - based upon conversations with others and OR nurses.
You can contact me through this site - use a fake address for privacy - like I do. For all I know you might be my neighbor and that would be embarrassing.
Check my stats below. I would have killed for numbers like your hubby.

Put Bedelia in your subject so I know it is not spam. I will reply with Worried Guy.

I just looked at earlier posts here and see that Goodlife told you to contact me. I agree with NY - Sooner. I had heard Dr. J J was the best and had him remove the walnut. At 3.5 months I am 3 pads per day incontinent with total ED but I was much further along the PCa trail than your husband.
I'm sucking air and as Martha Stewart says: "That's a good thing."
I have a do not use recommendation that I will give you in private.
Jeff
Posted 11/3/2009 7:24 PM (GMT 0)
Dear Belinda,

I am so sorry to hear about this, but you are not alone. We are all here for a reason. First of all yes get a second opion, but keep in mind that where ever you go they will recommend their specialty. And their numbers are not always accurate

they inflate the numbers to look good. In other words they only take the best canidates young, nonsmokers, perfect ht. and wt. ect. Also keep in mind that reguardless of the procedure you want a skilled experienced surgeon, and not neccessarily the most advanced technology. And  the surgeon makes about $40,000.00 more than with the laproscopic for the same amount of time. And the outcome is about the same. My husband had an open prostatectomy

in Aug.09. at the Cleveland Clinic he had many complications but if he had gone elsewhere he would not have gotten the same quality of care.

 Even with the complications GO VIAGRA!!! and it is still early on the only thing with that is it doesn't last but at least there is hope. I thing next month we'll try the 17 hour Cialis.

Incontinence is still an issue, but he had a catheter in for over a month so that will take time. Also watch out for depression his GP said about 95% end out with depression issues. Good Luck in making the

Posted 11/4/2009 12:53 AM (GMT 0)
Hi Belinda, the link below should be very helpfull for you.........Kind Regards .....Kev

http://www.yananow.net/questions.doc

Posted 11/4/2009 1:11 AM (GMT 0)
All the best with your search at this stressful time. I like to consider my hubby cured, but don't really say that openly much. We are cautiously optimistic however.. I think that miracles are possible at times, so all the very very best to you. We waited 4 months for surgery and it all ended up OK. Keep seeking opinions - we sought out 3 and chose 1 of these. Kind regards, Lana
✚ New Topic ✚ Reply
12