Radiation (IMRT) vs. Surgery - newly diagnosed

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bob57
Regular Member


Date Joined May 2007
Total Posts : 21
   Posted 5/28/2007 7:20 PM (GMT -7)   
Hello,
 
I am 50 and have been recently diagnosed with a rare form of prostate cancer - Pure neuroendocrine carcinoma of the prostate. The tumor was graded as T2b, my PSA is normal, 1.4, and I don't have a gleason score as I don't have adenocarcinoma. However, it is still prostate cancer and the same therapies apply. This type of carcinoma is highly differentiated (good) and all scans thus far, bone scan, CT, and transrectal MRI all show that it is confined to the prostate. It was caught very early thanks to a post chemo CT scan for Leukemia that showed a small tumor on the prostate ( The leukemia has been in remission for over a year now). Two of the twelve biopsies tested positive.
 
I was referred to a radiation onc. that recommended one of two different therapies, 8.5 wks of IMRT (Intensity modulated radiation therapy) or 5 wks of IMRT followed by Brachytherapy (seeds). He pretty much dismissed surgery when I asked. 
 
I was also referred to a neuroendocrine carcinoma specilaist who said that in 23 yrs. I was the first patient that he had ever seen with pure neuroendocrine carcinoma of the prostate without having adenocarcinoma. He said that surgery and radiation would probably have about the same effect with respect to the cancer, however, with surgery, if you know that it is isolated to the prostate, which all tests indicate, then you know that you are eliminating it.
 
I am having one more test, an octreoscan, that will let us know if there are any cancerous cells anywhere other than my prostate. (A radioactive isotope of Indium attaches to the cancerous cells and the entire body is scanned).
 
The GU surgeon, the radiation onc., and the tumor onc. then meet next week to develop what they think is the best plan for treatment. However, I was told that hormones are ineffective, chemo is not applicable to my situation, and the only real options are surgery and radiation. So, I would appreciate any advice that you have to offer.
 
I am treated at a major NCI so I have all of the confidence in the world in the expertise and skill of he Drs. there. I have been a patient there now for almost two years due to the leukemia and I am still in remission.
 
Thanks,
Bob

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/28/2007 8:02 PM (GMT -7)   

Hi  ~  Bob  *bob57  &  Loved Ones,

  

        A   “Special”  Warm Welcome  to  You!     yeah   

We know ~ we can “all” make “Your Journey” smoother just by being here for you! 

This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...  It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!  Keep posting.... OKAY!!

  

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

Our thoughts and prayers will be with you as you continue to move forward with your decision. 

In Friendship ~ Lee & Buddy

 

“God Bless You”

It's a little prayer  ~  "God Bless You" ...but it means so much each day,

It means may angels guard you and guide you on your way.

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)

mama bluebird - Lee & Buddy… from North Carolina

J  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 with "wide excision"

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

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/28/2007 8:15 PM (GMT -7)   

Hi ~ Bob,

 

You definitely have a few more stepping-stones in your path.  We are here to walk with you as you traverse these stones.  We will do our best to help shore up any that seem a little wobbly.  There are so many members here sharing their experience ~ you will truly not feel alone.

 

There are many threads here to help guide you with information to many different treatments.  Take time to read them (click on link above... Helpful Hints).  Take time to learn what’s best for you and your body.  Remember ~ you make the decisions in your treatment. 

 

By all accounts ~ you are a true fighter!!!  This is just another fight that you will win.  We are here with Helping Hands… just take our hands as you move forward.  Thank you for joining us!!!

 

Keeping you close in thoughts and prayers.

In New Friendship ~ Lee & Buddy 


El Tigre
Regular Member


Date Joined May 2007
Total Posts : 58
   Posted 5/28/2007 9:11 PM (GMT -7)   
Bob57,

Welcome, you have come to a great place! I am sure you are going to get a bunch of replies to this. We all faced the choice you are making, to a greater or lesser degree, depending on our individual cancers.

My wife and I found that specialists tend to have lots of faith in their specialty. Radiation people can talk for hours on how radiation is better than surgery. Surgeons can do the same about surgery. Urologists can be neutral or they sometimes have prefered treatments, depending on their specific experience. Don't let them make the choice for you. Many guys go a specific direction only because their Doc wanted them to. You don't really sound like that would be the case but I have to throw it in anyway.

When I got diagnosed I was younger than you are now. My wife and I discussed all the options you have mentioned with my Doc. We decided that considering my relative youth, (you fall into the category of being relatively young), Getting it cut out, and KNOWING it was gone, ended up being the choice we made. While nothing guarantees the cancer won't come back, none of the other options had the excellent long term cure stats of removal.

Keep us posted.
I sure do wish I had found this site pre-surgery!! RRP 10/25/05 I don't remember all the scores. Have had clean checks ever since. Never had to use the pads!!


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 5/29/2007 4:59 AM (GMT -7)   
Hi Bob

Thanks for sharing your story with us--it is certainly a form of PCa that I never heard of before. As you can see from my footnote, I just completed proton radiation therapy and you can get all of the details of my experience with this form of treatment in my thread entitled "Proton Radiation Therapy--My Journey With Prostate Cancer". Deciding between surgery and radiation can be tough choice. You have to look at your age, the different side effects from each treatment and the quality of life aspects that may result from each treatment in making your decision. Based on my earlier (not earliest) stage of PCa, I was told that I had an equal chance of a potential cure with either surgery or radiation. I decided that I did not want to risk the potential side effects and potentially long healing period with surgery at my age. There are at least two members here who have recently had IMRT or IMGT (x-ray) radiation for their treatment and you should be able to find their threads about their treatment experiences. Some consider proton therapy to be a little safer than photon or x-ray radiation which I discuss in my thread. The key in making your decision is to do adequate research of each treatment option and weigh the pros and cons in making your final decision. Whatever course of treatment you select, it has to feel right for you. You will find this Forum to have a wealth of information about the real experiences of men who have been treated with surgery (in particular) and some form of radiation. Best of luck to you in making your decision and keeping your Leukemia in remission.

Dave


68, 29-core biopsy 9/27/06, PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area],  Gleason 6 [less than 5% in two other areas], negative DRE, bone scan and Endorectal MRI. Completed 39 Proton radiation treatments 2/22/07-4/18/07.
First PSA test to be taken 7/07.

Post Edited (pcdave) : 5/29/2007 6:16:32 AM (GMT-6)


trey1121
Regular Member


Date Joined Feb 2007
Total Posts : 81
   Posted 5/29/2007 8:55 PM (GMT -7)   
Hi Bob,
Sorry to hear your news. I got my news back in Jan. I chose not to have surgery and opted for the IMRT. I finished 42 treatments on April 20 and will go for my first post checkup tomorrow. If you have any questions that someone near your age who has just finished the course of treatment, I'll be glad to try to answer. Good luck with your decision...It will be the right one!! Take care, Trey
Diagnosed 1/19/07
Age 53
PSA 7.2
Gleason (3+3) 6
Stage T1c
PI present in 3 of 6 cores
Completed 42 IMRT treatments on April 20, 2007
appointment 5/30/07 for PSA


bob57
Regular Member


Date Joined May 2007
Total Posts : 21
   Posted 5/29/2007 9:11 PM (GMT -7)   
Thank you all (Bluebird, El Tigre, and pcdave) for the replies.
 
My research has been focused on my diagnosis to date and not so much treatment, although, I have read about most of the common treatments and side effects. I now have a fairly good understanding of what I have and that will help in deciding a course of treatment.
 
Pcdave, it is not surprising that you have not heard of this type of PC as there are only a few hundred reported cases as I understand it. In fact, I found a PubMed article today regarding the first reported case in 1979. Neuroendocrine carcinomas can occur in many places throughout the body and usually when it is found in the prostate it is mixed with adenocarcinoma cells and this is called neuroendocrine differentiated adenocarcinoma and this is not so rare but has a poor prognosis and is more aggressive than normal PC. This is not what I have. Many people with adenocarcinoma will find that they have some neuroendocrine cells present if they are tested for. However, having a pure neuroendocrine carcinoid tumor of the prostate without evidence of adenocarcinoma is extrememly rare (Thhis is what I have). It is even hard to find publications citing such cases. The good news is that this type of cancer is very indolent. The not so good news is that there is no set protocol for treatment as there are so few cases. However, it is known that hormone therapy is ineffective.
 
I have found in my initial visits that what El Tigre says seems to be very true. The specialists tend to recommend their specialty. The tumor specialist seemed to give me the most unbiased opinion and said that he would be sure to attend the multidisciplinary meeting to discuss my case. I can't wait until next week to hear the concensus or lack thereof.
 
I do realize that I still have a lot to learn regarding treatment. It was much easier finding the best chemotherapy regimine for my CLL (Chronic Lymphocytic Leukemia) as three different opinions all recommended the same treatment. This makes chemotherapy seem like a walk in the park.
 
Thanks again for the advice and please keep it coming!
Bob
 
 

bob57
Regular Member


Date Joined May 2007
Total Posts : 21
   Posted 6/16/2007 2:43 PM (GMT -7)   

Hello All,

I wanted to update you with respect to my situation. All of the scans are now in and all show the cancer to be confined to the prostate. The tumor specialist at my cancer center is actually one of, if not THE authority on neuroendocrine tumors in the world. I am glad that his recommendation was the same as my first choice of treatments, which was surgery. He told me that because it is confined and well differentiated, surgery was the best option for eliminating it. 

I met with the surgeon that performed my biopsy the same day and he gave me what I think are pretty good percentages for laproscopic radical prostatectomy. He is division chief of the GU unit and teaches surgery at the medical school so I am very confident in his ability. I was told that there would only be a 5% chance of incontinence, and a 10 to 20% chance of ED unless he can't spare the nerves on one side, then it would be about 50%. As I am more concerned with elimination rather than the side effects, this sounded pretty good (GREAT) to me.

I am scheduled for surgery this Tuesday, 6/19. I'll let you know how everything goes.

Let me know if there is anything that I should ask about or consider before Tueday.

Thanks,

Bob57   


Age:50, Biopsied 4/9/07, 2 of 12 biopsies positive, pure neuroendocrine carcinoid tumor of the prostate, No gleason score, PSA normal 1.4, Grade:T2b, CT, Bone scan, and transrectal MRI all neg., confined to prostate, evaluating different treatment options. 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/16/2007 4:57 PM (GMT -7)   

Dear Bob 57.  I am glad you decided on a course of action for your PC.  Don't be afraid of the surgery.  I had open surgery on May 30, stayed one and a half days in the hospital, one night in a local hotel to get ready for the 4 hour ride back home.  I had an epidural to manage the pain which was a good decision for me.  I had no other pain medication in the hospital and was wide awake after surgery with no in and out from the narcotic pain meds you usually get during surgery.  My pain even in the recovery room was a 2 or 3 out of 10.  I walked a quarter mile around the ward the next day after surgery and a half mile the next day.  I had the cath for two weeks and got it and the stapels out tuesday.   Still dribbling but I came make a good stream.  This is getting better.  I am glad you believe in your surgeon.  This is very important that you are comfortable with him.  Good luck to you and will see you on the other side.

 

Mika


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/16/2007 6:18 PM (GMT -7)   

:-)   Dear Bob, 

 

Thank you so much for keeping us up to date as to which way your path veered.  Thank you for allowing us to travel with you.  This path is definitely easier when traveling with friends.  Your mind set has to be so peaceful with knowing you are having one of the best surgeons in this area of treatment and to know he knows exactly what’s going on ~ has to give you a mental calm.

 

Isn’t it wonderful that his decision was the same as “your decision”.   yeah Our thoughts and prayers are with you and will be with you extra come Tuesday……  when you feel the breeze hit your cheek… it is a gentle hug letting you know we are all there with you!

 

Our Hands are Reaching Out to You!!!

Special words borrowed from daveed

 

Thank you for taking them….. and holding on!

 

We hope you’ve had a chance to visit our personal thread…

                 Click Here:  “Our Journey” ~ Sharing is Caring 

If you pull just one thing from our travels ~ it will be a blessing for us.  Caring is Sharing and that’s what our continued journey will be…. Sharing shows we Care. 

In Friendship ~ Lee & Buddy

 

«  bluebird ~  Moderator for Prostate Cancer Forum


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 6/16/2007 8:17 PM (GMT -7)   
Hi Bob,

So glad you have the best doing your surgery on the 19th. I too, was first diagnosed with a Gleason 5 pattern neuroendrocrine tumor. Later it was determined that it was adenocarcinoma with
neuroenocrine cells present, which, as you mentioned is not that uncommon. I'm sure
you know that a rare neuroendocrine prostate tumor is sometimes referred to as "small cell" carcinoma which also does not respond well to hormone therapy....or chemo.

Glad your tumor is contained and well differentiated.
You'll do just fine. Our best thoughts are with you.


Veteran1

Age 54
Diagnosed. 12/3/05
Biopsy. Gleason 10, PSA 5.7
Hormone Therapy. 12/15/05
Intermittant HT. Present
Surgery. 2/14/06
EBRT 6/05/06 to 7/25/06
Diagnosis. T3b Seminal Vescile Invasion
Gleason 9 both lobes
Current PSA. .01

bob57
Regular Member


Date Joined May 2007
Total Posts : 21
   Posted 6/16/2007 10:31 PM (GMT -7)   
Hello Veteran 1,
 
Thank you for the reply. I found many papers that did list neuroendocrine tumors as small cell carcinoma, however, the neuroendocrine tumor specialist that I see quickly pointed out that this is not what I have as small cell carcinoma is poorly differentiated and much more difficult to treat (much poorer prognosis). A pure neuroendocrine tumor is at the other end of the spectrum as it is well differentiated and much more indolent. Fortunately, for me, it was found early before it had a chance to metastasize.
 
I hope that you are doing well and I'll let you know how things go in a couple of days.
 
Thanks,
Bob

Age:50, Biopsied 4/9/07, 2 of 12 biopsies positive, pure neuroendocrine carcinoid tumor of the prostate, No gleason score, PSA normal 1.4, Grade:T2b, CT, Bone scan, and transrectal MRI all neg., confined to prostate, evaluating different treatment options. 


broker59
Regular Member


Date Joined Apr 2007
Total Posts : 88
   Posted 6/19/2007 10:37 AM (GMT -7)   

Hi Bob

Right behind you (surgery 6/21).  Hope all is well, looking forward to a long future!


Broker 59


Date of Dx 3/20/07

PSA: 2.5

Gleeson: 3+4

Stage: T2

Bone Scan Clean

Date of Surgery: 6/21/07
 
Open Surgery.


bob57
Regular Member


Date Joined May 2007
Total Posts : 21
   Posted 6/24/2007 1:57 PM (GMT -7)   

Hello Broker 59 and All,

Broker 59: By now you have also had your surgery, also so I hope everything went well! I had Laproscopic radical prostatectomy (LRP?) on Tuesday the 19th and was home by Thursday. Everything has been OK so far sith a few minor problems that I think I will list on a new thread. The important thing is that the initial Pathology report was clear! I have a follow-up appointment next week.

Thanks to everyone for the support and advice,

Bob

 


Age:50, Biopsied 4/9/07, 2 of 12 biopsies positive, pure neuroendocrine carcinoid tumor of the prostate, No gleason score, PSA normal 1.4, Grade:T2b, CT, Bone scan, transrectal MRI, and octreoscan all neg., confined to prostate, laproscopic radical prostatectomy 6/19/07. 


broker59
Regular Member


Date Joined Apr 2007
Total Posts : 88
   Posted 6/25/2007 9:24 AM (GMT -7)   
yeah  Hi Bob
 
YES I am on the other side now, and it feels GREAT!!!
 
Doctor was very pleased with the surgery, and pathology will be in tomorrow, though he doubts there is any problem.  Have an appointment to get out the staples on Friday, no real discomfort, feeling REALLY GOOD!!
 
MANY THANKS FOR ALL THE FRIENDS I HAVE DEVELOPED ON THIS WEB SITE FOR ALL YOUR PRAYERS, SUPPORT, AND KINDNESS!!!
 
Broker 59


Date of Dx 3/20/07

PSA: 2.5

Gleeson: 3+4

Stage: T2

Bone Scan Clean

Date of Surgery: 6/21/07
 
Open Surgery.


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 6/25/2007 3:19 PM (GMT -7)   
broker 59. Welcome to the other side. Now you can start your healing process. Take it easy and don't over do it.

Mika-mvesr
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 2:53 AM (GMT -7)
There are a total of 2,903,886 posts in 318,695 threads.
View Active Threads


Who's Online
This forum has 158106 registered members. Please welcome our newest member, Pottybutt.
181 Guest(s), 4 Registered Member(s) are currently online.  Details
polkadotdress, OriolCarol, testuser1234, fiddlecanoe