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Husband possibly has PC....freaking out!

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Posted 12/9/2015 12:19 AM (GMT 0)
When I went to my appointment to get the biopsy report, I took a written list of questions with me. My wife came along (actually the clinic insisted that she be there) and we both took notes.

At one point during the conversation with my RO, he asked to see my list of questions and then proceeded to markup the pathology report and other documents highlighting where the answers were plus making a few side notes on a book to get and a good website to looking. He said that he understood the shock of getting told and wanted to make sure that we'd have a good reference of info when the shock wore off.

Andrew
Posted 12/9/2015 1:15 AM (GMT 0)
Thank you. He was 44 when his PSA was 2-ish, does that make a difference?

Also, the urologist told him his prostate was rather small....good sign?

And my husband really thinks he wants the robotic prostatectomy because he just wants the cancer out and not have to think about it anymore and also because he sees how well my dad with it.
Posted 12/9/2015 1:30 AM (GMT 0)
Unless the doctor felt something with he did the digital exam, I just don't know how he can say 100%. I'm very glad you're going to the Dec 22 appt with him...we'll send massive amount of good thoughts and karma toward...where are you anyway?

Re the appt, first off I obviously hope it's negative. (If so, please report back the look on the doctor's face.) If you do get bad news, please do 2 things: 1) get a second opinion on the biopsy slides from Dr Epstein at Johns Hopkins, 2) if you know you want surgery, look for a real surgical expert with many, many surgeries under his belt. This group can give you good guidance on that.

Good luck to you!
Posted 12/9/2015 1:39 AM (GMT 0)
Allison
Try to breathe. This can be a confusing and exhausting journey. The probabilities are on his side.
My PSA score also jumped to 7 in a 3 year period. I went to a urologist who put me on an antibiotic for 30 days and then a repeat PSA. It came back at 4. Urologist wanted me to come back in 6 months for another check of PSA. I did and it was back up again. Then we did the biopsy. You can see in my signature the road I traveled. I did take about 3 months to consider all the options. With a low Gleason you do have time to consider all the alternatives. Once you have a "plan" you will feel much better about it all.
Good Luck
RickyD
Posted 12/9/2015 9:24 AM (GMT 0)
Hi Allison,

I have been keeping up with your post. My husband (61) and I have been traveling the same journey. We have an appointment on Friday to discuss MRI findings. Although extremely shocked and scared at the initial news each step since has calmed our nerves. Having a plan and a team that you trust is extremely important. My husband changed Urologists after the initial diagnosis because the Dr. wanted to rush into surgery. Also his Dr had not mentioned a PSA of 3.8 a few years ago and now we find ourselves at 6.6.

I have also kept my internet searching to only this site.

Good Luck and just take it a step at a time.
Posted 12/9/2015 11:14 AM (GMT 0)
I had the same reaction when I was 42 and diagnosed. I just wanted it out of me....I think now I would have gone for brachytherapy. The side effects are supposedly much less then surgery...

Being diagnosed was the worst thing to ever happen to me....It is still too early for you to know exactly what is going on...I reacted the same way...I freaked out....

If the slides do come back positive the first thing I would do is send them to Johns Hopkins for a second read. Some doctors get pissed off about this, but you should not care about what he thinks...You need to have 2 people look at the slides so you know what you are dealing with.

After that you can decide what to do...My PSA was 2.4 when I was 38. When I was diagnosed it was 2.76 at 42.

My brother PSA 2 years ago was 4.2 and a 52 point biopsys came back negative....
Posted 12/9/2015 11:10 PM (GMT 0)
All very interesting comments as always, thank you. The doctor said he will call my husband in a week with the biopsy results and I explained to my husband about Gleason scores and what they mean as well as the number of positive cores and so forth, so he at least knows what to ask. I'll report back with the results as soon as I know.
Posted 12/15/2015 11:34 PM (GMT 0)
My husband's urologist called today with the biopsy results...unfortunately, he called our home phone during working hours so we still have no idea what's going on. I would have thought he would have called my husband at work since he gave the doctor his work number. Very frustrated right now as who knows if he'll be able to reach the doctor tomorrow.

No question this time, just had to vent.
Posted 12/16/2015 1:02 AM (GMT 0)
Well, Allison, here's a clue: did the office ask him to CALL or COME IN? In my experience the worse the news is, the more likely they ask you to come in and not do it over the phone. Remind him to ask for a copy of the written biopsy pathology report and we can help interpret it.
Posted 12/16/2015 1:56 AM (GMT 0)
Allison,

I am so sorry you have to wait one more day for results. Once you know what you're dealing with then all the pieces will fall into place. I've been where you are and now 2 months after we heard the initial diagnosis we feel very confident that our chosen treatment (LDR) will get the cancer with the least side effectives.

One step at a time.
Posted 12/16/2015 3:23 AM (GMT 0)
Hiya, Allison - I agree with all the other posters - panic is no bueno and will only make you feel bad without accomplishing anything. In addition to mindfulness practice, deep breathing, relaxation exercises and practices, try also this: see if your Dr will give you a prescription for either Ativan or Xanax. When things are out-of-control and you are immersed in fire-fighting anxiety, either of those (A or X) can be so very helpful - for you and/or your husband. I know - I've been right where your husband is (except 8 years older).
Posted 12/16/2015 8:11 PM (GMT 0)
I don't mean this to be funny but it does make me laugh just a bit (and I am every bit at fault) when it comes to the "If it's bad news, they'll call right away". When I had my biopsy (Thurs- Jun 25 2015), my urologist told me that he should have the results by Monday. So first I had to agonize for three friggin days .. I call Monday .. the urologist is at his other location .. I figure I'll wait a day because after all "if it's BAD, he'll notify me right away .. right?" yeah .. sure .. wait until Wed ... office calls back and says he has NOT read my pathology report yet. Hah???? I amy have cancer according to him and he has NOT read the friggin report yet??? so I figure .. I'll wait until Fri. Midday, Fry Jul 3rd (holiday), he calls "I was going through my reports .. unfortunately Mr ...., they found cancer in 5 out of the 16 cores.." he then went on with Gleason scores, percentages of cancer in each core .. i didn't hear ONE SINGLE WORD AFTER unfortunately .. In the end, don't play the bad news / good news scenarios BUT ( sorry to say this ) call the Dr 50 times a day if you have to. I was a wreck and will spare you the agony I had to endure when it came time to have the CT scan done .. the non-sense that I had to put up with the office staff and the insurance company that lasted almost 2 weeks. Allison .. we know what you and your husband must be dealing with and feeling. The anxiety can be overwhelming at times but as everyone has said, you have to take a deep breath and ask tons of questions but in the end, your husband is the best advocate for his health.

One last thing ..when my urologist finally call us ( wife and me ) in for a consult, she recorded the entire conversation so that I had the option to listen to every word being said. These Dr's (not all) talk, at times, so matter-of-factly that you want to grab them by their white coats and say "Hey .. this s MY life we're discussing here"

Post Edited (aldenyc2015) : 12/16/2015 1:17:59 PM (GMT-7)

Posted 12/16/2015 8:43 PM (GMT 0)
Hi Allison - this is my first post here but your post caught my eye. I also had a biopsy on Dec. 8. Got my results today -- all 12 core samples negative. I had told the doctor I wanted the results in person no matter what so I had control over the timing and I assumed I would have questions either way. I am almost 48. Last fall, my PSA was 1.2. In November of this year, it had jumped to 7.4. So, my DP referred me to a urologist. On the day I met my uro, he had me take another PSA test, but the result was that it only dropped to 5.2. He said I could wait 3 months before a biopsy, but both my father and paternal grandfather have had PC, so I decided not to wait. I go back in 3 more months to have a follow up PSA test. I understand completely why you have been freaking out. Even though my results came back clean today, I feel like a dark cloud hangs over me. I shouldn't feel this way. My dad's treatment (removal) led to being cancer free.

Michael R.

Post Edited (rayrobin) : 12/16/2015 3:15:13 PM (GMT-7)

Posted 12/16/2015 10:06 PM (GMT 0)
Hi everyone...ok, it's official, my husband has prostate cancer. Yikes.

Here are the facts:

His age: 49
PSA: 6.88
DRE: normal
Prostate size: "small"
Cores: 1 out of 12 positive, 14%
Gleason: 3+3

We have an appointment next week to discuss treatment. We are leaning towards RALP because my concern about radiation is that if the cancer comes back, his options are limited. I understand that after radiation, the only other treatment is hormone therapy should there be a relapse. Is this true?

Thank you for all your ongoing advice!!
Posted 12/16/2015 10:16 PM (GMT 0)
Please do two things....one, have the biopsies sent away for a second opinion...to John Hopkins or Epstein...

Second, with these findings, please also explore Active Surveillance. Maybe you aren't wired for that, but based on these results, you are a perfect candidate.

Again, might not be right for you, but you literally have every treatment option open to you right now.

Sorry it was positive, but you have a great prognosis for that.

Jordan
Posted 12/16/2015 10:19 PM (GMT 0)
Thanks, Jpenn....I'll ask the doctor next week about sending the biopsies out!
Posted 12/16/2015 10:29 PM (GMT 0)
Dang, dang, dang and dang some more. I know you've been worried about this, so I'm sorry that you did get the news. But...

...he has about as little cancer as one can have. Plus, it's Gleason 6, which is considered an indolent cancer. Most feel that G6 cancers never metastasize. (Of course, you want to confirm that it's a G6, so I agree with Jordan's comment above that you need to get a second opinion on the biopsy slides.)

I also agree that you should look at Active Surveillance for a diagnosis like this. Some don't have the psychological make-up to do this, but long-term studies so it's extremely safe and the longer you can put off treatment, the longer you can avoid SEs. (And ideally, you can put off treatment forever!)

If you do choose treatment, pretty much anything will work with this diagnosis. You sound inclined toward surgery, which is fine. But it can't hurt to check out radiation as well. If the initial treatment doesn't work, your options are the same whether you go with surgery or radiation. Both use radiation as a follow-up--just additional radiation if you use that as your primary treatment. But it's so unlikely to need follow-up in his case that I'm not sure that should be part of your decision making.

Last comment--with a diagnosis like this, you have the luxury of time. I think it would be wise to use it and learn all of your options.

Again, so sorry for your news. I wish you luck and we're here to help if you need us. Good luck to both of you!
Posted 12/16/2015 10:32 PM (GMT 0)

Allison101 said...
We are leaning towards RALP because my concern about radiation is that if the cancer comes back, his options are limited. I understand that after radiation, the only other treatment is hormone therapy should there be a relapse. Is this true?

Allison, sorry for the news. No that is not true. As you explore treatment options and if you speak with experienced radiation oncologists you will discover that there are many salvage options for a failed radiation treatment and they are just as effective as options after a failed surgery.

I will echo jpenn, I think it is vital that you get a second opinion on the biopsy slides from an experienced and expert pathologist who knows prostate cancer. Epstein and Bostwick are excellent and you can see how to contact them if you read the stick thread at the top of our page that is designed for newly diagnosed patients. Even if the original diagnosis holds up, hubby has virtually all of the treatment options open to him and I would recommend you TAKE YOUR TIME and make sure you get this right. Each option has potentially different consequences and you need to understand this and do your due diligence so you can make an educated decision.

Jim
Posted 12/16/2015 10:46 PM (GMT 0)
I honestly don't feel that either one of us are capable of NOT treating this. There would always be that dark cloud hanging, just like rayrobin mentioned. I'm glad to hear we have time, though. I don't want to rush and do the wrong thing, but....well, I just keep telling myself that it could be SO much worse and we are very, very lucky all things considering.

Thanks again everyone! I am writing everything down to present to the doctor next week.
Posted 12/17/2015 12:56 AM (GMT 0)

Allison101 said...
Hi everyone...ok, it's official, my husband has prostate cancer. Yikes.... We are leaning towards RALP...

Did you know that a segment of professionals believe that Gleason 6, should not be a positive determination of prostate cancer? A true Gleason 6 is believed by some to never metastasize.

The top professionals in this field present at seminars there is 30% overtreatment in the field.

Please take it upon yourself to get a second opinion from Epstein or Bostwick.

Only your husband and you can decide the best path that is appropriate for you. However, the potential for incontinence and ED appears to be a higher percentage of probability for "so much worse" than potential for prostate cancer to metastasize.

Active surveillance has 0 % probability of side effects. Surgery and radiation do not.

Post Edited (Ken) : 12/16/2015 6:01:36 PM (GMT-7)

Posted 12/17/2015 1:00 AM (GMT 0)
Alison,
As one of the resident poster boys for AS, please do research that option. Once you have gotten a second opinion on the slides of course, that is a must.

I know the feeling, been there, done that, get it the hell out of me! But the more research I did, and the more I read about the horror stories of men who had needless surgeries and life changing side effects, I ended up choosing AS and I am so, so glad I did. I have my PSA checked every 3 months and if it ever shows a rise I will get an MRI guided biopsy and then go from there. If the second opinion comes back that it is a G6 "cancer", you should take a deep breath, do a ton of research, and then make your decision.

What you want "the hell out" of your hubbie's body may not ever advance, and some people (myself included) question whether it should even be called cancer. And if it ever does advance, you have every treatment option available to you and your chances of a complete cure will be virtually the same as they are now, to an almost statistically meaningless degree.

But as others have said, everyone is here to support you in whatever decision you make.
Posted 12/17/2015 1:29 AM (GMT 0)
Allison, on the subject of time: my Urologist (a very experienced doc) told me that with 3 positive cores I had "six months to decide what to do". With your single core, that applies as well. You've got plenty of time to relax and learn all you can.

Did you mention where you were located? I'm sure someone here can aim you at the places to go in your area.

The big thing is, you DON"T HAVE TO DECIDE TODAY...or even next week or next month. Now it's time to put it to one side and celebrate the holidays in your preferred way...whether it's Christmas, Hannukah, Festivus, or whatever your choice. Seriously. Enjoy life.
Posted 12/18/2015 12:16 AM (GMT 0)
All interesting points....it will be interesting hearing from the doctor next week. GeetarMan, I noticed your low PSA's...even your PSA when you were diagnosed was very low. My husband's is 6.88, which while not as high as it could be, is high enough that I'm not sure AS is going to be an option.

My coworker's husband is a good friend of Dr. Samadi in NYC (we live in the suburbs) so I think I might be checking with him for further advice. Unfortunately, he doesn't take our insurance so we can't go to him for treatment, but another opinion is always helpful!
Posted 12/18/2015 12:25 AM (GMT 0)

Allison101 said...
My husband's is 6.88, which while not as high as it could be, is high enough that I'm not sure AS is going to be an option.

That is very true, and that's why you need a second opinion on slides and possibly even an MRI to make a decision. As noted many times on this forum... a higher PSA is not necessarily from PCa.

One thing for sure... I certainly would not decide on AS using only the information you have now!

...and hopefully you're not "freaking out" any longer! There is a very high likelihood, i.e. much more likley than not, that everything is going to be fine.
Posted 12/18/2015 12:35 AM (GMT 0)
Nope, not freaking out anymore, that's for sure. While I was disappointed that he has cancer in the first place, I am MUCH more positive about the whole thing. I will ask his doctor about getting the samples to Hopkins...I don't particularly want to pay for it, but you have to do what you have to do. The lab his urologist used was in network and while they charged $1700 for the pathology, we only have to pay about $100!!
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