I have just registered with Macmillan, I have started treatment

Hi Billy_G and a very warm welcome to the online community

I'm sorry to read that you have recently been diagnosed with cancer and it sounds like you've had a tough time. 

I had a sentinel lymph node biopsy (SLNB) for melanoma, so although a different type of cancer, I'm happy to tell you what was involved if you want more detail. Do you have a date yet for the SLNB?

Everyone copes differently with a cancer diagnosis and there's no right or wrong way to react. I think a lot of people can't believe it's happening/has happened to them but talking to others in this group might help.

I noticed that no one had responded to you yet so replying to you will 'bump' your post back to the top of the discussion list.

While you are waiting for replies it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best

Hi Billy. i was told my cancer was very superficial and required laser treatment only. this was after 2 biopsies, on checking after the laser, a wart appeared and now want to do a full glansectomy of the end of penis.   how are you getting on now?

Hello KWB,

I am sorry that you have had a rough start to this. It all came in a bit of a rush for me, with some hindsight that was probably lucky. Around Christmas I had a pain, that wouldn't go away. In my mind I sort of guessed there was a problem, but wanted to ignore it until after Christmas, even though our plans all got canned because of the Covid restrictions.

I think that I am lucky as I am retired and so don't have the pressure of having to get up to go to work, or figure out how to handle everything about what happens if I don't go to work. Although I did go through that about 5 years ago, when I got an arthritis condition that stopped me working, I didn't really get any help or advice from anyone at that time, even though it was impossible to drive, sit down or walk up stairs. In the end I just stopped going to work. Fortunately things just worked out and I never went back to work. I now take steroids to manage the pain and so on.

Two reasons for mentioning this is that firstly, it is hard to see beyond today, but somehow things do workout, I would never have believed that I could afford to not go to work, but in the end I had to and it was ok. The other thing is that a long time ago I spent a couple of years working in France, the French authorities contacted me and told me I could claim a pension, its tiny, however I had to fill in forms like crazy. When they agreed to give me the money, literally enough for fish and chips once a month!, they wanted me to complete a form that proved that I was alive! I had to go to my local council registrar. It was about an hour by car, I really was dying for a pee, in a bit of pain. By the time i got to a loo, I looked at my willy, there was a lot of white cells on the end and I was peeing sideways.

I knew that I had to put my denial to one side. I went to the doctor, once again I was lucky as although I didn't know the doctor, he didn't say too much but unknown to me made an urgent referral to a urology consultant in Swindon hospital. The consultant took one look at the white cells and the couple of lumps under my foreskin and said, its bad news you have cancer. It was a shock that he just blurted it out. He then said there is a team of people who can help. He referred me to the Thames valley consultant in Reading, who confirmed the diagnosis and started a process in motion of scans, examinations leading to surgery in UCLH in london. It has all been done by the NHS, I do not know if there is any benefit in trying to go private, it probably was an option but I don't have private medical insurance.  Although I think that the NHS  have been very rapid about moving me through the process and so probably there would have been no benefit, And I think that the team managed out of uclh seem to have the expertise required. 

I had never really thought about cancer and had no idea that there could be such a thing as penile cancer and that the first remedial activity is to cut off some or all of your willy. Once again I think I was lucky as the consultant was quite straightforward but also very considerate. It took only a short while to realise that the bad stuff had to be cut off. Although he only cut off the head, it does seem to have shrunk, this is probably the only negative thing for me. 

It was and still is sometimes difficult to accept it but I seem to have reverted to scholboy jokes about it. I think that I have been joking as I did fear that it would be really painful and I might be in bed for ages. This is the good news bit...

Despite me thinking that I might not walk for months I have to say that although he cut off the head of my willy I have not suffered any pain from it. For a short while I had pain from a skin graft site, but that passed in less than a coupe of weeks. I used a moisturizing cream Neutrogena and it settled quickly. I was fitted with a catheter that I had for a couple of weeks, this was difficult. It wasn't painful but for some reason I found it hard to either pee or poo. I had the op on 12 March, 2 months ago, it is probably only in the last 2 weeks that my bladder and bowels are working anything like they used to. It is not only hard to make it happen, the physical change in size is also difficult to manouvre into a position where it is possible to make it happen.

The thing that helped was prunes stewed with some cinnamon and sainsburys greek style yoghurt for breakfast. It wasn't the kind of thing that I had before but it worked and did taste good.

I am going in again on Friday to have some lymph nodes taken out, they call in Sentinel Lymph node biopsy. At the moment I feel positive that when they do a biopsy it will be clear. In which case I will go into a monitoring phase. Otherwise they will take out most of the lymph nodes in the the groin. And presumably think about radio therapy. I am not a naturally positive person, however I do feel positive about this and so I expect to be ok.

You ask how do i feel. In truth I feel ok. Its been 2 couple of the months since the op. I had some problem with my bowels and I did get a bladder infection. But my GP was straight on the infection and gave me some antibiotics as soon as I asked. I was tired for 2 or 3 weeks but that has passed. I now do quite a bit of physical work in the house, we moved into an old cottage just before lockdown there is a mountain to things that need doing, and garden is huge. I can work for about 3 hours, I don't do as much as I used to and I am glad to sit down and have a cup of tea. I go for walks of may be 4 or 5 miles I could go a lot further. So I feel good and I hope and think that you will too.

Thinking back I think that it was my GP's first instinct to not wait just refer me and then the consultant from Reading who performed the surgery in London who has been straightforward and considerate. These are the two most important things. If you have any doubts about the professionals that you are involved with then it might be worth investigating if it is possible to make a change.

For me there are a couple of negatives, you end up with a quite a small willy and secondly for me I have to travel a long way to see anyone, for example I have to be checked into the hospital at 7 am on Friday, after a 2 hour car drive into central london. Luckily I will be asleep for most of the day!

I hope that you also have a bit of good fortune in the way that I have and that your op goes well.

Oh one thing that I did that was good, I bought some ridiculously expensive PJs and cotton t shirts from Marks and Sparks. They PJs are shorts, quite baggy, very soft and comfortable, so all good. The really good thing was because they are shorts it i possible to work with the catheter bag and tubes and still be comfortable. 

Lymph nodes out, biopsy done.

I am fortunate that no cancer cells were found in any of the nodes that  were removed. 
the op was described as being straightforward, but it was performed as lockdown ended. The hospital was busy, the staff were tired, a few things were a bit off plan, not least that I had more nodes than expected, I think The markup after the scan went a bit wrong as I seem to have ended up with 2 gigantic scars that would look good on a cartoon pirate, not really key hole surgery. It’s been a couple of months, I still have a lot of fluid round the scars. The glansectomey was a shock but within 2 weeks I was gardening and walking  in the countryside. This time it seems my immune system has gone into shock. I can hardly walk to the end of the garden let alone dig it up.

I have a condition called poly myalgia rheumatica, it’s a muscle inflammation that gives pain in neck, shoulders and hips. It also gives exhaustion like finishing a triathlon when your not too fit.I have it controlled by taking steroids, they are literally magic. However since the op the symptoms are out of control, I am taking large dose of steroids but can’t find the magic dose to go back to normal. 
however the op was physically ok, so if you are about to experience it don’t worry. It did take about 7 weeks to get the results. I did get anxious, but apparently it is a normal amount of time. As I mentioned earlier I was fortunate to come through with nothing found, I hope that you also have some of the good fortune that I had.

it is a strange thing that I still have trouble discussing any of this with family or friends. I guess at some time I will just blurt it out when I am least expecting it. Until then I am  left telling schoolboy jokes that are close to the truth.

billy g.

(billy gibbons is in a group zztop) zizi is what french school children call a Willy. I’m not really billy gibbons and I don’t have a zizi top anymore, it’s not really funny, but when I first lost it I had to laugh about it.