Radiation (IMRT) vs. Surgery - newly diagnosed

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

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 

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

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

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

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

Hi Bob

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

 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!!!