Penis cancer

A group for anyone affected by penile cancer (cancer of the penis) to get together, ask questions, share experiences and support each other.

Does anyone have any experience of St George's Hospital, Tooting?

Normadw
Posted by

My husband has very recently been diagnosed with penile cancer and we are waiting to hear from St George's Hospital, Tooting. This has come as a huge shock as we've never heard of penile cancer before. I am aware it is rare and I see there aren't too many recent posts, so I'm not sure if I will get a response or not, but I am hoping......

Priscilla - admin
Posted by

Hi and welcome to the site. I'm really sorry to hear about your husband's diagnosis. It must be very isolating for you both to be faced with such a rare cancer.

You're right that the cancer being rare means that this group is a bit quiet. I hope that you get a response in here, but you might also find it helpful to join and post in our Carers group - this is a really good place to get support from others who are also supporting loved ones with cancers of all types.

Another really good way to get support is to give our team a call on the free Macmillan Support Line (0808 808 0000, Mon-Fri, 9am-8pm) - our nurses can help provide information if you have questions, or you can call if you just need someone to talk to.

There is also a charity called Orchid, which has nurses specialising in male cancers who can answer queries by phone or email. Find out more: www.orchid-cancer.org.uk/665/Speak-to-our-male-cancer-nurses 

Twirly
Posted by

Hi Normadw,

I'm so sorry for the reason you find yourself here, but welcome, you have come to the best place! You're right, this isn't a common cancer but that doesn't mean you won't find any information or support - quite the reverse!

St. George's Hospital Tooting is a renowned University Teaching Hospital and as I understand it, a centre of excellence for cancer treatment and care. One of our contributors who suffers from an unusual blood cancer and who blogs here:

http://www.chris-cancercommunity.blogspot.co.uk/

feels he owes his life to the treatment he's been receiving there and does a lot of fundraising for them. So I think your husband will be in safe and expert hands. Also, a friend of mine did her nurse training there, many years ago but still a good reference! 

If you need to talk about the actual disease you can call the lovely and experienced cancer nurses here at Macmillan. It's a freephone number, open Mon.- Fri., 9am - 8pm. and it's just below this post.

And any time you just want to let off steam, ask questions or just have a chat, you could join the group "Carers", where there are lots of super people who are looking after friends and relatives and will instantly understand your concerns.

Don't forget to look after yourself too - we often say that it can be worse for the carer than for the patient!

With love and hugs,

Twirly xxx

Normadw
Posted by

Thanks so much for replying. I have joined the carers group as you've suggested and I found Orchid on an Internet search and told my hubby about it. He has his first appointment at St George's on Tuesday so we haven't had to wait too long. I've also been contacted by a lady who's son is still undergoing treatment for penile cancer, which means I do have another person to talk to about things.

Your us
Posted by
Hello - I have only recently joined the forum and only found this site by chance. I'm sorry I don't know anything about St George's hospital - don't live in your region. However my brother was diagnosed with penile cancer in November 2008. You are right this is a very rare cancer and by the time he was diagnosed he was already at stage 3. Because of the rarity of the cancer he found it very difficult to find any support groups - particularly as so few chaps are diagnosed. We know how much he suffered during his illness and this really is a horrific experience for any man to have to go through. Although I' m sorry that I can't help much with the ordeal you both now have to go face I just wanted you let you know that my thoughts are with you. I really do know the full extent of the psychological effects that my brother and his wife had to go through every day. It had a major effect on the whole family - particularly my nephews and younger brother. They were all scared that they could inherit it but apparently (fortunately) it is NOT genetic and there s no likelihood of them suffering the same fate. We all pray that this is true but the fear is still there from time to time. On the plus side it has made every man we know realise how important it is to get regular checks to make sure that there aren't any nasties lurking. I really hope that your husband gets sorted soon and I will be thinking of you. Hope the diagnosis is not as bad as you think. take lots of care. Totox
patrick-p
Posted by

I was under Nick Watkin Ben Ayres and Mr Sharma at St George's and I'd say I owe my life to them after Kent and Canterbury hospital told me it was just a legion and sent me home. All the nurses on the vernon ward "thats the urology ward" I found excellent. Nobody likes hospital stays but I found it very pleasant. Spent 12 days 4 days and 15 days in there between September and november 2012 

pungle
Posted by

hi im going though the same thing with my hubbie he has his opp on wed with mr watking has anyony got any info on this

Dreamthief
Posted by

Morning pungle,

They are renowned as one of the best hospitals to have this type of treatment, so he will be in safe hands.

It is quite an uncommon cancer, so this group is fairly quiet, hopefully you will get a more informative reply about Tooting soon. Until then you could take a look at this Macmillan Information page about Penile Cancer (link) if you haven't been given much information so far.

There is also the Orchid Male Cancer website here that has more specific information regarding penile cancer and treatments.

Hope this is of some help for now.

Take care and best wishes for your husbands surgery, George & Jackie (breast group)

Bramble Bloke
Posted by

Hi Normadw. Only a quick post and I will come back later. Your right it is rare and that is why your husband has been referred to St G,s. It is the best of the best with the top team in the world! I've just had my op there 3 weeks ago and am still feeling pretty sore!,  There are lots of different types of penile cancer and it will depend on what the outcome of all the tests they will do. He will have a MRI which is just lying on a bed then they slide you in and out of a big tube dead easy you don t

feel a thing. If he is clustraphobic they will give him some happy pills or a shot. Then an  ultrasound to see if it has spread to your Lymph nodes, tickles a bit and they bung a lot of gel all over the place, just wipes off!  Then probably nuclear medicine to high light the nodes. This bit was for me the scary bit as they inject into the penis 4 times!!!!! BUT......they anesthatise it all and you don't feel a thing, dead easy. Thats what happened to me and they found a Squamous tumour which Nick Watkin and team cut out. I wont bore you any more of my stufff now, unless you ask, but the main thing is Nick and team are the best in the world and just getting penis cancer does not automatically mean they will cut it all off. If they have to do some surgery there are loads of options and sometimes they just give you some chemo cream.  There  will be loads of info coming after the tests and probabaly some worrying times but remember, although rare it is cureable. Please let me know if I can help in any way, if he has to go in for a op Ive just been there so know my way around. I back up to St Gs next week for a follow up and if your there and want meet just let me know. Happy to chat here.   I think they withold that but you can get it from them. Ill check back in later. Mart

Dave 46
Posted by

Hey Mart, How are you ? Do let me know how things went ? All the best David 

Kimbers34
Posted by

Hi

I don't know St Georges I'm afraid, as mine was done at Norfolk and Norwich. We have 2 Penile Cancer Specialists here, which is quite rare as there aren't that many who specialise in Penile Cancer in the UK.

I was lucky because my wife is a Nurse and she noticed it early saying it looked abnormal and to get it checked. I am glad she did as I was stage 1 by then. 

You haven't said a stage, if you know or age of your husband. And diagnosis can vary depending on these and other factors.

Even at stage one my 2 specialists were at odds. One wanted a partial penectomy as a "100% sure" safest way to deal with it. As I was only 43 when diagnosed I wanted a second opinion and Mr Sethia was the most senior specialist available to me. He agreed that the surest way was a penectomy but was of an opinion that he could save much of it (including part of the head) with just an extreme circumcision and removal of some of the muscle. Whilst the result isn't aesthetically pleasing it is functioning and I have full use.

If there is anything you want to ask please do. There is no question "too personal" when it comes to Cancer like penile Cancer and your husband must have thousands of questions and worries. Talking openly about this form of Cancer is the only way we will make more people aware and the only way to ensure early diagnosis and therefore a better prognosis.

Lastly I am sure I speak for everyone here when I say that I wish you both all the best and please keep us up to date with whats happening. Maybe we can help.

Tony xx