Hi Rob,

I was diagnosed with Squamous cell carcinoma of the penis last year and operated on in November. The surgeons removed the tumour layer by layer and then analysed the tissue during the operation itself, so they could be sure they only removed a minimum of healthy tissue. I was told in advance that the tumour did not look invasive but they would only be sure during the operation itself. I went into the operation hoping that I would not  have a lot of the penis removed. But I got lucky, the maximum depth was only 2.2mm. I had a split skin graft on the part of the glans affected, and everything feels fine. Prior to the operation I also had a CT scan on the abdomen which was clear.

I am not a medic but will pass on to you my understanding.

My tumour was T1 G2 N0 Mx. G2 is the grade, or aggressiveness of the cancer cells. G2 means that they are intermediate. The Mx means unknown metastases, and this is normal because it the lymph nodes are clear (the N0) the chances of metastases further afield are extremely low, so they do not scan the whole body.

My surgery also included a Dynamic Sentinal Node Biopsy (DSNB). A radioactive liquid was injected, a few hours prior to the operation, into the tumour and the first lymph nodes that the tumour drained to identified. These 4 lymph nodes were then removed and very carefully tested for malignancy. The theory behind this is that if these 'sentinal' nodes are clear, then the cancer is highly unlikely to have spread to other lymph nodes. The alternative, removing all the lymph nodes (lymphadenectomy), is not necessary.  Again, I was lucky as the nodes were clear. But this is procedure is not infallible, so careful follow up of the lymph nodes is still important.

If you did not have a lymphadenectomy or DSNB, then your tumour was maybe low grade G1, rather than my own intermediate G2 grade? This is because, as I'm sure you know,  management of the lymph nodes in the groin, and diagnosis of any lymph node involvement, is important with penile cancer. But as I said, I'm not a medic so there could be other reasons.

 I am also on 3 monthly appointments. All are thankfully clear so far. In each of my check ups, I have a physical examination of the penis and, unlike you, a routine ultrasound rather than a physical examination of the lymph nodes.

Although my most recent check up was clear, I did have a bit of a scare, and I suspect you are feeling like I did then. One of my lymph nodes had several blood vessels compared to the others, so they took a sample from this (using a fine needle aspiration procedure) to check. The specialist who carried out the ultrasound said at the time that she thought the risk was very small, but she was acting out of caution.  And indeed the results were fine.

Lymph nodes can appear swollen for many reasons. An infection, say. And they can stay swollen long after  the original infection has disappeared. So try not too worry too much at this stage. Easier said than done, though, I know. Especially as 'not worrying' is not something I'm very good at myself.

I wish you the very best of luck, Rob.

Harry.

Harry,

thnaks for your very detailed post.  Luckily the ultrasound came back as ok.  Would be good to talk in detail to you as i know nobody who has had the same as me, Do you have facebook?

Hi Midge, yes all seems ok,  its a really difficult thing to live with isnt it?

Hardysbobby, I do have FB, but prefer not to use this as I prefer o remain anonymous, if you don't mind. Happy to chat away on this site, though. It sounds as though your cancer was a little more advanced than mine, as you had a partial penectomy. My three monthly check ups (physical examination + ultrasound) remain clear. My chances of a recurrence are now becoming very low (they were already low because my sentinal node biopsy was clear) so I am in a good place at the moment.

Hello both, 

I hope you don't mind me interjecting.

I spotted that you were talking about chatting anonymously, rather than on Facebook, and thought I'd just highlight that it's possible to private message on Cancer Chat, should you so wish.

All you need to do is click on a person's username and it will take you to their profile page, where you can click "Message" to chat privately. 

There's more information on how you can get started with this here: Welcome to private messaging. 

I do hope it helps!

With best wishes,

Helen

Cancer Chat moderator

Hi Harry,

My partail penectomy was at the very scale end of a glandsectomy as my cancer was not advanced.  It had started to travel slightly down my penis.  I was lery lucky to catch it early.  I found a lesion on the end of my foreskin and got it checked out immedialtely.  I then had a circumcission which revealed all sorts of horrors.  I was under the care of Christies Manchester who were brilliant.  My checkups remain clear and I am pretty sure I will be ok from now on.  But i have to say, I was *** scared for a few months.  My recovery from my op was not a good one, i got an infection - never felt pain like it and I was off work for months.  But i can still pee stood up and have a healthy sex life.  I havent lost too much length which is good for a bloke!

  I dont feel like because of the type of op i had makes me any less of a man.  If anything I am just glad to be alive and well.  There is allways a niggling feeling of it coming back, but whats the point in worrying - It doesnt do anyone any good.  My wife and i got through it by laughing and taking the *** out of it.  We could have been morbid and upset about it but that wouldnt have helped.  Dont get me wrong I did have moments where it was dark, but i stayed very positive and found it was the only way.  I found some inner strength I never knew exsisted and wow that made me feel even better.  Hope all this makes sense :)