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Small cell prostatic cancer

Ray M's picture
Ray M
Posts: 2
Joined: Nov 2013

After experiencing perineal pain in August 2012 and being treated eight months chiefly with antibiotics for prostatitis, I was finally biopsied March 2013 with both adeno (Gleason 9) and much rarer (<200 cases/year in the US) small cell prostatic cancers.  I have subsequently undergone traditional cisplatin/etoposide chemotherapy and IMRT (low-dose radiation therapy) and thus far, other than painful and probably permanent neuropathy from the cisplatin, I am asymptomatic from either disease.  However, I am assured there is no protocol or treatment for the highly metastatic small cell disease which kills 60% of victims the first year and 80% of survivors the second.  I go for a PT scan this week to see where it might have spread -- bones, brain, lungs, or lymph nodes seem to be the next stop. I would like to contact those stricken with this kind of cancer to find out their treatments have been and to understand what I can expect most likely this year as the disease seeks out a new organ to destroy and kill me.

VascodaGama's picture
VascodaGama
Posts: 1550
Joined: Nov 2010

Ray

I am sorry for your SCC diagnosis. I hope you find the peace of mind you are looking for.

In this forum I never read before a post from a patient with small cell prostate cancer. You may be interested in reading the experiences narated in this link;
http://community.macmillan.org.uk/cancer_types/prostate-cancer/f/142/t/59103.aspx?PageIndex=1 

Regarding treatments, you may be interested in this link where they comment about increased survival through a intense systemic chemotherapy plus hormone therapy plus radiotherapy;
http://www.hindawi.com/crim/urology/2013/387931/ 

Best wishes and luck in your journey.

VG

mrspjd
Posts: 693
Joined: Apr 2010
 
Hello Ray & Welcome,
 
I'm so sorry to read of your PSCC dx. Your post indicates that you have done a fair amount of research and obviously understand that this a rare & seriously different disease than the more common adenocarcinoma of the prostate. There are a few older posts on neuroendocrine/PSCC but, in the 3.5+ yrs that I've been on this forum, yours is the first post I've seen on this issue, which is usually dx'd on clinical prostate biopsy. 
 
Here's a link to a recent (May 2013) publication that may be of interest:
 
I fully understand your desire to be in touch with other men/families who share the same PSCC dx and/or who may currently be in tx. To facilitate that process, you might try checking/posting on other forums with headings in addition to PCa such as "small cell," "neuroendocrine" carcinoma, lung SCC, and "rare and other cancers," such as:
http://www.healingwell.com/community/default.aspx?f=35  HW is an active & informative site with the benefit of forum moderators & an excellent/efficient search feature.
http://csn.cancer.org/forum/130 (The Rare and Other Cancers CSN forum)
 
You may have heard of Dr Charles Myers, a well known highly regarded PCa MO & a PCa survivor himself. Following is a link to an older video presentation by Myers in which he explains why it's critical for both patients and MDs to understand the differences between various types of PCa (something like 25 varieties of PCa). He includes neuroendocrine/small cell PCa in this talk. You might consider a consult with Myers if you haven't already done so. 
 
Sites like PubMed.govclinicaltrials.gov, NCCN &  http://prostatecanceruk.org/information/rare-prostate-cancer#small-cell also might be helpful, although I'm guessing you've already thoroughly scoured those resources. 
 
On a long shot & total SWAG coming from left field, I wonder if you've considered getting in touch with Dr Kwon @ Mayo Clinic in MN to discuss if C-11 Choline imaging would be beneficial in your case. If so, I wonder if RT, HDRB, or SBRT might be add'l options for managing imaged mets. See:
 
I wish you the very best on this most challenging journey. 
 
Kindest regards,
mrs pjd
murraylaura2012
Posts: 1
Joined: Apr 2014

Hi, Ray,

I hope things are going well for you. I found your post while researching for my husband. He, too, was diagnosed with SCCP in early April, 2013 after having painful symptoms for months prior. He underwent chemo and radiation at Emory University and, as usual, the SC responded. But during all of that, my job performance suffered and I was fired from my job. I had to bring him to another state far away and re-start his treatment. We lost valuable time during that period. His latest PET scan (two days ago) showed masses in the pancreas and lymph nodes. He is pretty uncomfortable right now but is holding up. We have an appointment on Friday of this week with a gastroenterologist to discuss a possible biopsy on the pancreas mass because the PET shows that it may not be SC. But the PET also showed that it is a "functional" mass, meaning that it is one of the bad ones.

If you would like, we could share ideas and information. This is such a lonely journey. We lived abroad for many years and subsequently lost touch with friends here in the U.S., so it is just the two of us trying to support each other. 

Another one of life's ironies is that his PET scan this week was on his birthday, nearly one year to the day following his initial diagnosis. He is 77 and has been healthy and active his entire life, never a smoker.

Kindest regards,

Laura      murray.laura2012@gmail.com

 

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