I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Living with Small Cell Prostate Cancer

Email this conversation Print this conversation
User
Posted 25 Apr 2018 at 13:12

Hi

I have Small Cell Prostate Cancer , which is a very very rare (less than 2%) form of prostate cancer and is very hard to treat. To date I have been treated with chemotherapy of two types, with not much success and now with imunotherapy (1 treatment to date) . I would really like to swop experiences with someone who has the same disease.....is there anyone else out there with the same problem ?

 

User
Posted 06 Jul 2018 at 21:09
Have a look at Cookie Girl - her dad did amazingly well despite being diagnosed with small cell.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jul 2018 at 05:12

Hi, I'm very interested in learning more from those experiencing small cell prostate cancer. It's nearly impossible to find anything on this particular type of cancer. My husband was diagnosed with stage 4 in March of this year. He's tried chemo which was unsuccessful.  He did get a little relief from radiation, and will begin immunotherapy tomorrow.  He's in so much pain, particularly in his lungs and bones. I'd love to connect with someone else going through the same thing. 

User
Posted 07 Jul 2018 at 23:36

Hi, 

Cookie Girl  is on page 40 of the list of members.  The link is below.

All the best.

 

https://community.prostatecanceruk.org/default.aspx?g=profile&u=17380

 

 

Show Most Thanked Posts
User
Posted 25 Apr 2018 at 14:20

Hi Leo, it is one of the hardest to treat but we have a small number of members who have done amazingly well, in particular read Cookie Girl’s thread.

See here for relevant threads https://community.prostatecanceruk.org/search?query=Small+cell&advanced=false#refine-results-panel 

Edited by member 15 Apr 2019 at 21:52  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jun 2018 at 17:11

Hi Leo, just joined the forum so apologies if not using correctly. Thought I would reply as my husband was diagnosed with small cell prostate cancer in March after an initial diagnosis of prostate cancer in Nov 2017. It’s such a tough disease and hadn’t heard of anyone else with it till I read this forum. My husband is 60 and is being treated with carboplatin and radiotherapy for bone pain. Would be interested to hear how you are getting on.

User
Posted 03 Jul 2018 at 05:12

Hi, I'm very interested in learning more from those experiencing small cell prostate cancer. It's nearly impossible to find anything on this particular type of cancer. My husband was diagnosed with stage 4 in March of this year. He's tried chemo which was unsuccessful.  He did get a little relief from radiation, and will begin immunotherapy tomorrow.  He's in so much pain, particularly in his lungs and bones. I'd love to connect with someone else going through the same thing. 

User
Posted 03 Jul 2018 at 17:46

Hi Gingerella, don’t know if you saw more previous post but my husband also has small cell prostate cancer. As you say it is so rare and just not much out there. Royal Marsden couldn’t offer any help, he is currently on chemo and radiotherapy for bone pain. Hope you get back, would be interested in how the immunotherapy goes and just to hear from someone else going through this.

User
Posted 03 Jul 2018 at 18:51

Hi Soogee,

I will certainly keep in touch. We're sitting here at the infusion center now getting the immunotherapy treatment. He's on Opdivo and Yervoy. It has been successful in small cell lung cancer, so we're giving it a try and hoping it will be just as great for prostate cancer.  I hope the chemo is working for your husband. My husband, Dave, had no success with chemo. Radiation was able to shrink a large mass in his abdomen though. Still, he's in a great deal of pain. His cancer is in the prostate, abdominal wall, lymph nodes, lungs, esophagus, spine, and ribs.  Just curious, how was your husband diagnosed? What were his symptoms?  Dave's FSA was never elevated. He was having severe urinary problems for the last couple of years. Urologist even did TUNA and green laser surgery and never mentioned cancer. 6 months later we find out it's stage 4. 

I'll check back in a little later. I'm so sorry you guys are going through this, but it's nice to know we're not alone. 

Ginger

User
Posted 04 Jul 2018 at 08:38

Hi Ginger, sorry to hear you having such a rough time, really hope the immunotherapy makes a difference. Peter was diagnosed with prostate cancer in oct 17 after getting increased frequency and fatigue, really beginning to struggle at work. His PSA was high, 73. Hormone injections were all that where needed initially. He was rushed to A&E in Jan with bladder retention and subsequently catheterised from then till March. in the meantime he had conflicting scans, an MRI showed no spread from the prostate but a PET scan showed spread to lymph nodes, liver & bones. His catheter was removed when he had a TURP in March and it was the biopsy from this that revealed it was small cell. He has had 4 cycles of chemo, carboplatin & doxetaxel, 2 cycles to go. It has had an effect on the lymph nodes and liver not worse but spread in the bones. He’s had radiotherapy on his spine which helped and is having more next week on hip and ribs.  the immunotherapy a one off and how long before you know if it’s having an effect? 

Suzi

User
Posted 06 Jul 2018 at 21:09
Have a look at Cookie Girl - her dad did amazingly well despite being diagnosed with small cell.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Jul 2018 at 20:19

Hi LynEyre, I’ve searched but can’t find cookie girl. Would love to read something a bit positive. Can you guide me where to find it please, sorry I’m fairly new to this forum and probably not navigating right,

thanks, Suzi

User
Posted 07 Jul 2018 at 23:36

Hi, 

Cookie Girl  is on page 40 of the list of members.  The link is below.

All the best.

 

https://community.prostatecanceruk.org/default.aspx?g=profile&u=17380

 

 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK