Penis (Penile) Cancer
Posted on: Tue, 08/04/2008 - 10:40
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Penis (Penile) Cancer
Hi ,
My husband (37yrs at diagnosis) had penile cancer last year. It is a rare form of cancer usually affecting men of 65yrs plus. It is thought to be caused by poor hygiene and is less common in people who have had a circumcision at birth. Another cause includes HPV (Human Papilloma Virus) which is related to cervical cancer. My husband had phimosis and BXO (Balanitis Xerotica Obliterans), other causes related to penile cancer. I have already written what happened to us elsewhere www.cancernursing.org/forums/topic.asp?TopicID=58
Basically he had a Glansectomy and reconstruction initially. Unfortunately within a few weeks he had a recurrence, therefore needed total penectomy and bilateral Groin dissection of the Lymph nodes. He has had a CT scan last week and we are waiting for the results from that.
For the past year we have struggled to find information and support for this type of cancer. I have visited Cancerbackup and its forum several times but it is only now that I feel brave enough to add our story here. I think I was ...and am still, very embarrassed about the type of cancer that my husband had. This is a big problem with this type of cancer. Other people affected by this can be found on http://www.mywavelength.com/viewforum_h.php?sub_cat=158&cat=3 . As I said, it is very difficult to find any support for this type of cancer. As it is such a rare cancer there is not a support group for it. That is why I have written here, so that others with this type of cancer know they are not alone. We are now preparing our selves for reconstructive surgery. I will continue this on the reconstructive forum.
JG
Keywords to put in search
“BXO” “ Phimosis” “Everymans Worst Nightmare Cancer” “Glansectomy”
Some helpful links, besides Cancerbackup
http://en.wikipedia.org/wiki/Carcinoma_of_the_penis
http://www.urologyhealth.org/search/index.cfm?topic=138&search=penile%20...
http://en.wikipedia.org/wiki/Balanitis_xerotica_obliterans
EAU 2005 - ABST[945] IS THE ASSOCIATION BETWEEN BALANITIS XEROTICA OBLITERANS AND PENILE CARCINOMA UNDERESTIMATED?
http://www.orchid-cancer.org.uk/index.aspx?expand=Home&file=H-Home
Hi all,
My Hubbie had a ctscan two weeks ago and we have been waiting anxiously (well I have been anxious...and his mum)to hear the news of the results.
Thankfully all is clear. I just wanted to share that with you. It's great news and I want to scream and shout it from the highest mountain.
This means that there should not be anything in the way of him having his reconstructive surgery in May.
JG
that is fantastic news, and can i just say that i am so glad you have felt able to share all this with us, and i think you will get so much support from everyone on this site, just as you support us, have you rang the helpline on here by the way? they are very good and may be able to give more advice. anyway, look forward to seeing you in the chatroom again x we need to get Ray to get knitting that willie warmer!!!
lots of love
Alisonxxx
i am not positive, i am realistic
JG and Hubby,
Sooooo pleased to read your good news, celebrations all round. it will be champers in the chat room tonight then.
Lots of love,
Debbie and April xxxxxxxxxxx
my glass is always half full
I am writing here to let Pink know where I have come from. And anyone else with this type of cancer.
All the best
JG
Thanks for typing that message like you i know how you feel. Theres not alot about penile cancer on this website but im glad i found youre file on this website and that i can talk to you. I hope you and youre hubby are well and big hugs. Pink .xx
pink xx