A complex profile – unfortunately

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same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 8/29/2007 7:35 PM (GMT -7)   
Thanks for asking about me Bluebird. I thought this deserved a separate thread, so I will just say hello here.

My profile – 10% of one core in 12 showing positive for pc, Gleason 4+4 (a second opinion from Johns Hopkins confirmed the score). I was just told last week it’s complex in that the only high reading is the Gleason score.

I originally scheduled Proton treatment – I ruled that out later because their ten year study showed unfavorable results with aggressive Gleason scores.

I decided on DaVinci Laparoscopic surgery – I chickened out (fortunately to be shown below) and opted for Radiation seeds.

Notice up to this point it is on my shoulders. As I said before, this site has actually been my only knowledgeable source without a vested interest.

Last week in talking with a Urologist, who I researched well, he said that he cannot recommend seeds purely because my Gleason is too high. He scheduled me with a radiologist in a different group than his to discuss external beam treatment, perhaps with seeds, perhaps with hormone shots. At last the first move I experienced by a uro that did not hint of self-interest.

Today the radiologist really hit me with the procedures that he recommends for me:
1. Hormone shot – This will last a year. It insets a time-release capsule under my skin (I think my arm). It shrinks the size of my prostate and also helps “Dry up” the cancer cells. The shot will be done by the Urologist who referred me to the radiologist.
2. Two months after the hormone shot, I will get external beam radiation. The reason he gave me for favoring this over surgery is that my Gleason score typically indicates there will be cancer beyond the prostate; the surgery will remove only the prostate and not address the external areas as does the radiation beam.
3. After the daily radiation for five weeks, both doctors will team up to implant the seeds.

This has not been easy to decide a treatment where I have confidence in both the physicians and the desired results. If any of you with a high Gleason are weighing what treatment is best, be sure to look at how it accounts for your Gleason score. If any of you have had high Gleason scores and found a better alternative than I describe, I would love to hear from you.
Walt


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 8/30/2007 2:36 PM (GMT -7)   
Walt,

You make a good point about treatment in regard to Gleason score.
My husband has systemic pc (his gleason was 4+3) and is now on HT - Lupron 3 month shots.

There are some here who will have gone through both HT & radiation and hopefully they will post.

This will get you back to the top for others to see.

All the best to you,
Susan
Husband Diagnosed 11/17/05 Age: 63 No Symptoms
PSA: 7.96, Positive DRE
Biopsy Right: 6 of 6 Cores Positive Biopsy Left: 1 of 6 Cores Positive
Gleason: 4+3 = 7 Stage: T2B N0 MX
3 mo. PSA Post Surgery: 11.8, 12.9, 13.9 Bone scan, CT scan, Endorectal MRI, Chest XR - neg.
9/06/06: 6 mo. PSA: 18.8 Distant lymph node involvement Start HT Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
Next PSA 9/05


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/30/2007 4:27 PM (GMT -7)   
Walt,
 
It sounds like you and your doctor are discussing all the right things.  You're right, this is a complex and a personal decision.  With your symptoms, I would favor the multi-faceted approach as well.  I've read about cases where external radiation and seeds are combined, along with HT with good success.  Our thoughts and prayers are with you.  I wish you the very best in your treatment decisions.
 
Kind regards,
 
Barry (Idaho)

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 8/30/2007 6:02 PM (GMT -7)   

Hi ~ Walt,

 

Yes ~ this information definitely didn’t need to be posted on the other thread…  It deserves its own place in your personal threads for sure….  We weren’t sure if you had gone forward with the surgery… but wanted to let you know we were thinking of you extra during this time period. I’m glad you got it!!!

 

You’ve really touched on a lot of options in your threads and I’m going to add them for others to see.  It’s important ~ for our Newbies to know that there are different choices available… and one to show one man’s decision path.

 

Right off the top I can only think of 1 member who had Gleason 7 and had 25 IMRT (radiation treatments) and a 90 seed pallidium seed implant and he is almost three months out of treatment.  I’m sure there are others and hopefully we will hear from them.

 

As you move forward ~ we hope you’ll continue to post.  One things for certain ~ our thoughts and prayers will be with you!

 

Walt ~ Please consider adding a signature … so we can see the specifics… it really helps us and future readers to know! Age,  PSA,  Gleason, and Other information that helps us to know where you are!!!

 

Again ~ Thanks for touching base and we hope you’ll continue to stay close.

In Friendship ~ Lee & Buddy

 

Helping to keep this journey together for future readers...and members.

Threads started by: Walt *Same_as_u

03-10-07  Three newbie questions about biopsy & reversing psa 

06-14-07  Any chance of Remission with Prostate cancer?

06-17-07  Does anybody have an opinion to share about Proton Radiation?

06-19-07  The power of this site – a thank you note.

06-23-07  Does anybody have an opinion to share about TomoTherapy?

07-20-07  From Loma Linda to Surgery

07-29-07  A complex profile – unfortunately (currently on this thread)


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 8/30/2007 8:03 PM (GMT -7)   
Susan,

It sounds like your husband has had a really rough experience. I wish you both the best, and hope things can start to take a more pleasant turn for you. Thanks very much for your post.

Barry,

Thanks for your thoughts. This has even gotten foggier for me. This afternoon I got a phone call from my cousin’s cousin – we hadn’t seen each other since we were youngsters. He is one of the top oncologists in Pittsburgh, although pc is not his specialty. After asking my scores he advised me to have surgical removal. When I really resisted accepting that he said I should do IMST. I now am making an appointment with the radiologist who he recommended. I consider myself fortunate that he phoned me when I mentioned the need to my cousin. Finally a knowledgeable voice with only my best interests at stake. Based on pure experience with Murphy’s Law, I am not cancelling any of the above until I can see an effective treatment scheduled.

Bluebird,

It is always great to read your posts, many thanks. I updated my signature as you suggested before writing this post. With a little luck it will even appear when I submit it. I wonder if the guy with the 25 IMRT and 90 seeds also had a hormone shot? That is the part that seems to have the worst side effects.
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/30/2007 9:47 PM (GMT -7)   
Hi Walt,
 
Unless I'm mistaken, the people at Cancer Treatment Centers of America:
http://www.cancercenter.com/  will give you a free consultation over the phone.  This may be a "cheap" way to get another opinion.  They seem to do a lot of radiation therapy.   I don't know if anyone in this forum has had experience with them.  If so, perhaps they'll give you some feedback.
 
Kind regards,
 
Barry (Idaho)

Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA
My awareness web site: http://pca-info.blogspot.com


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 8/31/2007 3:46 AM (GMT -7)   
Walt,

This decision process can be so overwhelming. 
As each specialist is more energetic about their specialty,
only you can have all the information needed to make a decision.

Computerguy's thread has some very good discussion weighing the options.

Keep us "posted" and know that you have friends here that are fighting the same fight.

CCedar
ICTHUS!
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 8/31/2007 4:55 PM (GMT -7)   
Walt

Keep looking at options until you feel comfortable with the one you think is right. Don't be afraid of surgery. You will get over it in short order. What ever you do will change your life forever. It will never be the same as it was before because you have PC. Pray about it and seek out as many opionions as you can and consult as many people on the forum as you can. We have all been where you are now.

Good luck to you and may God bless you.

Keep in touch

Mika-mvesr

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 8/31/2007 5:26 PM (GMT -7)   
Walt (and Myman)-

My situation was similar - PSA of 26.5 and Gleason 7 (4+3). After I got past the self-serving urologists, I had a consult with Alan Partin head of Urology at Johns Hopkins and creator of the Partin Tables (also a urologist - but he considered my well-being over his pocket). He suggested that, because of the good chance of capsular penetration, I go with radiation. I found a great radiologist here in Morristown, NJ and had 5 weeks of IMRT and then HDR brachy. Had been started on ADT from the very beginning, and my PSA dropped to undetectable very quickly and remains there today, after 2 years and 6 months. HOWEVER.......

And this is for all you guys who celebrate undetectable PSAs: obviously there was capsular penetration even before the radiation and I have metastases on my pelvis and all over both lungs. PSA is undetectable because the cells have mutated and don't look, or act, like PCa cells. As a result, I'm considered incurable.

Hopefully, your situation won't be as dire as mine. However, I do agree with your choice of HT, external beam and brachytherapy. Good luck.

-Gordy

same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 8/31/2007 6:00 PM (GMT -7)   
Thanks Barry,

I did go to http://www.cancercenter.com/ and phoned them as you suggested. The person I spoke with was well trained to field pc questions. Mainly I asked him about the side effects of the various pc treatments just for my own re-assurance.

I have read a lot of your posts, Barry. You are very knowledgeable and extremely helpful. This forum is very fortunate to have your participation. I am very sorry to see that you got hit with this at a younger age than most.
-------------------------------------------

CCedar, you are right on target with this getting so overwhelming, and especially accurate about how the specialists will only promote their specialty. I think I was lucky that the uro who I asked to do seeds backed off; that showed a lot of integrity. This afternoon, weary was the best word to describe my state of mind. Then I looked further into this IMRT and the radiologist that my cousin’s cousin recommended. Both the technique and the radiologist looked so good that the brief things I read about each really lifted my spirits to renewed hope.

I could not find any post by computerguy that you mentioned. I will keep on searching.
-------------------------------------------

Mika-mvesr I appreciate your post. I guess you are saying the after-affects of whatever treatment I select will change my life forever because my prostrate will no longer function as well as before. I hope that I have a broader scope than that.

-------------------------------------------

Thanks Gordy, the close profile that you describe is a big help for me. I am not having the Hormone shot – radiation – seeds treatment that I described first. Within two days I cancelled the hormone shot and am going with IMRT as was suggested to you. Similarly, the person who suggested this to me is extremely high up the oncology distinguished leadership chain. As you and I point out, we had to sift thorough a lot of self-serving uro’s to get a recommendation solely in our best interest – a sad commentary on the medical profession.
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 8/31/2007 8:26 PM (GMT -7)   

After my surgery and surprising pathology report, the one thing I remember well that my surgeon said, is, "At least it's good that it's sitting in a jar of formaldeheide somewhere!"  That statement made a lot of sense to me.  The one way to find out how much cancer you have is to take it out.  Besides surgery for a broken wrist, this was the first time I had really had my body "invaded".  Was I nervous?  You bet!  I did my Kegal exercises prior to surgery, and after the cathedar was removed.  I dreaded the cath more than anything, but since it was put in when I was out of it, all it turned out to be was a nuisance.  Has my life changed since the surgery?  Another you bet!  However, I feel I/they know the degree of my cancer and am following the best thing I can do to give me the best chance at a long and happy life. 

Don't eliminate the surgery option.  I'm one who am glad that I chose it.  Otherwise, if my PSA would have been doing weird things, and I'm sure it would have following EBRT or seeds with my cancer, I would have been freaking out.  Keep all options open!

Good luck.


PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01
5 month PSA, June 13, 2007:  0.08
Adjuvant therapy began June 26 with Zoladex injection
     Radiation to commence in late August
 


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/1/2007 6:15 AM (GMT -7)   
Thanks Hawk fan, I agree with you. The only thing I am wrestling with is time. When the uro surgeon did my biopsy, he said for me not to wait until November to take action. My initial appointment with the IMRT radiologist is Sept 14. If for any reason that does not become the treatment I get, I realize that I must do back to that original surgeon who I already cancelled with for a scheduled DaVinci removal. What I am weighing is do I schedule him again on Monday Sept 3 with the likelihood that I will cancel him again if I use IMRT, or do I do the "Proper" thing and schedule after Sept 14 if that fallback is needed. In August his lead time was three weeks.

I have not found anything yet about the side affects of IMRT, and after reading that it may answer the question.
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4

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