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Very rare cancer - please can someone help?

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User
Posted 03 Apr 2017 at 19:38

Hi all - my fiancé has had a very difficult time and I will update my profile to reflect this when I get the chance. Cutting a long (very!) story short, he had a unusual biopsy result following surgery to tackle bone mets in November last year leaving his doctors confused. They didn't know if he had a second primary cancer (cancer of an unknown primary) or if his prostate cancer had mutated. They were leaning towards the former. Then in February, my Fiance had further surgery and another biopsy. It transpires that he has an exceptionally rare prostate cancer called squamous cell carcinoma of the prostate. His consultant said that it's only the second case he's seen in 18 years. I can't even see it on this site's list of rarer prostate cancers! Has anyone had any experience with this type of cancer. Would love any help/info at all at this point. I feel lost at the moment as up until now I've been able to use this site and it's forum for help and encouragement. Doesn't seem to be a pamphlet for this one!

User
Posted 03 Apr 2017 at 23:36

No, Jillyd,

I don't have an answer for you. I hope someone will soon have some advice for you. There are knowledged people on here.

Bumping you up.

Anyway it would be better if you write about his PSA, image scanning etc so they can help you.

My best wishes,

Lola.

User
Posted 03 Apr 2017 at 23:50

Hi Jilly, squamous cell is extremely difficult to treat as it doesn't respond to hormone treatment although RT and chemo can sometimes knock it back for a good while. It doesn't make the PSA rise which is why it is often diagnosed very late and is unusual as it affects the cells on the outside of the prostate gland rather than in the middle near the urethra.

We did have a member whose husband had squamous - I will try to remember her name or find her old posts.

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

User
Posted 04 Apr 2017 at 12:02

Hi

Found this.  USA http://www.future-science.com/doi/pdf/10.4155/fso.15.16  

I know nothing to help you specifically , I was just searching etc .  Also http://www.yananow.org/   (I'm not a member, however my brother lives in Australia and has PCa (so occasionally ref. that site)

 

Regards

Gordon

User
Posted 04 Apr 2017 at 23:16

Thanks. Will try to update profile as soon as I can Lola - hopefully it will help. Would really appreciate the member name if you can think of it Lyn and thanks for the links Gordon - am about to look at them now.
Cheers - Jill

 
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