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I'm New Hubby just been diagnosed /looking for best treatment

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Yeah here we are...

We so need a Real People Board that we can find real life information
and experiences from .... thats why I'm here...Hubby is not so internet
excited ...but he is a master at playing Free Cell!!

Hubby has had a high psa forever...2 negative biopsy's
then started having urinary problems...and necessitated
a turp... turp pathology reports showed 1 chip out of 40
positive ...then a biopsy that showed 6 out of 12 positive on
left side of prostate..with a gleason score of 6-7...

Now dr has offered us basically prostectomy or beam radiation

We are interested in the rad seeds, but I am hearing from different
sources that the seeds are not recommeded for someone who has recently
had a turp.....

I have found a big name Dr. Gregory Merrick is a miracle worker and can
do the seeds successfully on anyone

what say YOU????

P.s. oh did I mention that my DH is a fabulous 73? oh yeah~~

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

*

Trew
Posts: 891
Joined: Jan 2010

I would suggest you read my posts under the Proton Sites and get Bob Mackinin's book on proton therapy. You will also be considering surgery, but remember, proton therapy can give the same results without surgery.

By the time I got to where you DH is my case was already messed up, but if your husband still has a gleason of 7- take a hard look at proton therapy.

Also note the thread on ED Therapy. This is a very real issue for post treatment. Incontinency is another issue. Surgery Vs proton or seeding. These are not easy choices.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Trew

thank you for your comments

I will check out those other posts

and I will get back and let you know my reaction

and yes the suggestion of surgery has not totally gone away yet...sigh...

keep the chin up though as we say~~ I will check out the ED thread too
all is of much interest to us humans :-)

Trew
Posts: 891
Joined: Jan 2010

Those weeks after biopsy are some of the worse weeks in this process. You are in decision time. problem is what you decide to do will have lasting effects on your husband's life and yours. So spend time, read, look at your options. And you get to do all this with a sick feeling in the pit of your stomach with an added pinch of fear. That is how it is. You have to make a very intellectual decision that is mostly driven by raw emotion. Hardly fair, but you now get to kiss fair good-by and you have to deal with a new reality of cancer. I wish you well.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Hi again Trew

Thing of it is we have been down this road before in 2003-2004...we went thru Breast C...(see I cant even write that word) so I am 7 yrs out now...
But you are so right about the sick feeling ... cant stand the thoughts of DH being in pain ..etc.... thanks...I have already read those threads you recommended....Just more info under my belt on the way to informed decisions....

I love hearing from real people....:-)

Trew
Posts: 891
Joined: Jan 2010

I can understand the difficulty in saying the word, too. I found a video on You tube connected with Movember that featured sme men beating up prostate cancer with a board and a crowbar. I watched it dozens of times- it just made me feel good somehow. I wanted to hit the old PC myself, which I am doing with rad and drugs and surgery. But sometimes it seems like I am hitting a brick wall with my fist and I don't know who is getting hit the hardest, me or the cancer.

"It" is a nasty condition- no doubt about that.

See if you can copy paste this:

http://www.youtube.com/watch?v=He_Ie5Mi6xA

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

EvaGirl,

Just noticed that you were treated for breast cancer. My mother was treated for breast cancer two years ago and my dad for prostate cancer in 1997. You sure you are not related to Me?
Laughing out Loud..... If you have any male children encourage them to get tested. They are finding links between the two cancers and putting male children into higher risk factors for getting Prostate Cancer. I was getting tested yearly after finding out about my dad's.
Then wam at age 54 they found it.

Larry (Age 55) 7 Months post davinci surgery

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

well the one thing good I can say about this is that we
are not Rookies at the experience...(not sure thats a good
thing though) LOL~~~
My mom ended up with a double mascetomy, She did just fine
with it ....one of my sister also had a mascetomy...and now my
Hubby...My thought is that more men have it than really know about
it...

Good thing for you that you were testing...the early found the
better choices of treatment...is what I think, just curious, how was your dad
treated?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Welcome to our forum. You have found real life people here all that have been down the road ahead of you and your DH. You said that DH is 73....Some doc's wont consider the Prostate surgery at that age so keep that in mind also.

Read as much as you can and ask us questions! We are not doctors here just patients or spouses, significant others etc of patients.

I had the Davinci surgery with 5 out of 12 cores positive Gleason 7. I'm doing well at 7 months post surgery.

Best wishes on your research and final treamtent.

Larry (age 55)

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Hi Larry

Thanks for the welcome

I hear what you are saying about the age and surgery...DH...is a tower, but a little more delicate than 20 yrs ago :-)

Please what is the Davinci surgery ???? Is it a smaller surgery???

I appreciate all of the oponions I am hearing here and experiences...It is invaluable to me and I realize they are not medical oponions....I am sure that I will get all of the medical oponions in the near future :-)

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

The Davinci Surgery removes the prostate but rather then large open incision it is done by control of the Doctor using robotics. They make five small incisions and insert tools, cameras etc in the incision for the surgery. If you choose Davinci look for a surgeon with 1000's of these procedures. It has a very High learning curve. Since it is using robotics, cameras etc.

Typical Hospital stay is 1 night with Davinci. DH will go home with a catheter and some men have trouble regaining urine control and sexual ability. Age and other factors play into it all so you have to decide on what is best.

You can google Davinci.

Just remember you have lots of choices to make so study up on them all then make the decision on what you think is best.

Larry

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Larry

Sounds like you did very well w/the Davinci surgery...amazing technology..
I hear you about finding a surgeon with 1000s of the surgerys under their belt~
I am sure that is what you did...
we have been asking God for guidance and we found this site :-) so Yippee I say~

as you say , I have begun to study and what I have read thus far excites me and dissapoints me at times.. so it is definately no easy decision making...
we are working on getting an appointment with a radiologist and then a specialist also...
I am going to begin to ask the hard questions about what is the best recommendation for my DH's particular case and why? and why not a particular procedure.

All in all DH has a very positive additude.... and the wknd is hear which always seems to cheer me up...Dinner out and a wknd of relaxation. (I hope).

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Larry

I have been viewing the video's at Loma Linda about Proton therapy and I was
wondering if you had considered Proton t. before you made your decison for
surgery?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Evagirl,
Yes I considered Proton. Actually it was my first Choice. My dad was treated with Proton for his prostate Cancer in 1997 at Loma Linda and is doingwell today 12 years later.
Mine was a borderline case with Gleason 7 where they would mix Proton and radiation. My insurance denied treatment with Proton so i would have had to pay out of Pocket. I could not justify in my mind paying out of pocket plus after much prayer, etc I strongly felt that I was being led to Robotic Surgery with Dr. Smith at Vanderbilt in Nashville Tn.

If you consider Proton there are about 6 centers in the USA now that offer Proton. As stated my first choice was Loma Linda since they have the most experience with Proton plus 7 or so weeks of treatment in Southern California is a nice area! LOL. Also my wifes brother works at Loma Linda so I had even arranged to stay with him duing treatments.

If you or you husband ever want to talk via phone or private email just let me know.

Larry

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

thank you Larry...that is so nice of you ...we know where to find you :-)

about the Proton...I did read where , some were experiencing incidents of
bladder c. after the proton treatment~~ whats up w/that??
But your dad is doing well after 12 years... impressive~

so you had a gleason of 7 ...sounds comparable to my DH...I talked to a
thera-seeds nurse and she told me w/ my DH case that they may alternate a short
round of beam radiation with the seed treatment and we are going to see a dr at
University hospital in missouri ( we live in central missouri) his name is Steve Westgate He is a theraseed specialist.. from what I understand...

I will tell my hubby what you said about contact....stay tuned~~~
Like you we are praying every day for Gods guideance...So important.

chorton581's picture
chorton581
Posts: 15
Joined: Dec 2009

here is a good article from mayo
http://www.mayoclinic.org/robotic-prostatectomy/about.html

I had my surgery done there a few weeks ago and feel great. I can recommend my DR if your interested in exploring the davinci.

I did tons of research on the subject and found it to be the best route for me.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

So Chorton ...You feel "Great"??? That is wonderful...
we will definately keep that in mind...

Are you allowed to mention Dr's names on here?

personally I dont see why not, how else do people get
references?

Hope our pic shows up...I just uploaded it~

hopeful and opt...
Posts: 1282
Joined: Apr 2009

Remember that prostate cancer is a very slow growing disease so you are not in a rush to take action, but you need to keep busy doing research.

It would be a good idea for you to let us know where you live....those of us who might be in your area can give specific recommendations about doctors, support groups , etc.

In your biopsy, you mentioned 6 of 12 were positive; what was the involvement in each and the gleason of each-----please give full numbers 3+4=7 or 4+3=7----there is a difference between these two 4+3 more aggressive than 3+4.

It is also a good idea to get a second opinion of the parrifin blocks in the biopsy by an expert in the field.....dr epstein, johns hopkins is a good choice,,,,,simply have your doc office send the slides......it generally covered by insurance such as medicare.

Ira
southern california
Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

I'll second that advice. It's hard to do, because you feel that it needs to be treated NOW, but given DH's age and history, his PCa is probably slow-growing. And you say that his PSA has been high "forever". What are the numbers and dates of the last two or three?

The absolute number of the PSA is not as important an indicator of prognosis as the PSA doubling time, which is to say the direction and rate of change. If the PSA doubling time is long, then the cancer is not aggressive. I have an aggressive case, and I have had a PSADT of less than 90 days at times. A PSADT of 12 months or more is considered slow, as I recall.

The less aggressive the cancer is, the less aggressive the treatment should be. I don't mean to add to your confusion, but this is something you should know about:

http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

erisian,

I am hearing what you are saying about the not rushing...
When I was diagnosed with BC in 2003..I felt like I had to get into the surgery the next day...ha ha....but I eventually did 2 rounds of chemo first to shrink the tumor...then surger and two more rounds...
about my DH's PSA it has been high over the last 10 years... and I am talking a average of 15 ....yeah, I know that is high...but there have been no sudden jumps..just a very very slow increase...and 2 negative biosy's

I do understand what you are saying..about the less aggressive treatment...
we are backpedalling on the radical surgery...even though we know our urologist would
like him to choose that...we are going to our primary care dr tuesday to get his imput
then to the radiologist and also a specialist...

I am learning a lot already from these boards

thank you all so much~

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

erisian

I read the article....

yeah if we had a crystal ball to find out which of the less aggressive
C would be confined to the prostate and not cause death, then wouldnt
that be great...just makes me think that to take our time and not rush
is of much importance~

thanks~~~

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Hopeful

I am not sure about the scores..yet...all I got from our urologist was that
the 12 plugs from the biopsy showed 6 negatives on the right side and 6 positives
on the left side...on the gleason score ...they were 2@6 and 4@7 he said they graded on a 5 to 10 scale, so he put him in the medium range (whatever that means)
they did do a bone scan and it was clear...fine....

sounds like your scores are low and very early stage...
so have you decided to do anything or just watch ???

hopeful and opt...
Posts: 1282
Joined: Apr 2009

I was diagnosed one year ago.........and am doing active surveillance or (watchful waiting)whcih is considered a treatment option. I am closely being monitored.......I listed the diagnosis tests that I took..it may be helpful to others.

It is a very good idea to get a copy of your biopsy results , and any other tests such as psa , etc, so you have it available.........and can bring the information to other doctors, research your disease, and communicate effectively on this site, support groups or any place else that you wish........as for the the most part , we are educated non medical professionals........so it is hard enough for us to make comments with complete information.........and extremely difficult to give good advice with limited information.

Ira

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