Just been Diagnosed with penile cancer !!

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Hi to everyone on here ,I'm new to all this being diagnosed with penile cancer as rocked my life ,its just an emotional roller coaster not being able to control the crying and the ups and mainly theowns . It all start with an infection in my penis ,water infection given Antibiotics, the infection got worse and never went away ,after fighting my way every time to see my GP just to be told its Banitis take some more Antibiotics but once again it never cleared this has been going on since June 22 . My Docor left the practice so I ended up with a trainee locum telling me the exact same thing've been told over and over again, then the swollen penis back to the GP again to be told its Balanitis it causes swelling more Antibiotics, finally I asked to be sent to the urology department for circumcision. Arrived at hospital to see the consultant with in 10 seconds of him looking he told me I had a Tumour you've all been there you know the feeling being told this . Any way I was in with a week for a circumcision and biopsy which came back positive for cancer . That's were I'm at now ,waiting to go into Leeds on the 21st for my first consultation, I will tell everyone I'm absolutelshitting myself.  I can't work after the circumcision as I had Dosal slit very painful slow healing strugling to wear bottoms as its rubbing . So this is my jorney so far ,dont know how long the recery is but this is going to hit me financially but hay ho my health is more important and trying to be positive.  Thanks for reading my road trip so far any feed back would be greatly appreciated . 

Cheers DeeGee

  • Hi, sorry to jump in the post. But I to have just had surgery on 28th lymph nodes and plastic surgery on the tip of my penis. I was just wondering if you’re having trouble with the tip and what are you using to help it after the treatment. As I’m beginning to get plastic threads and was wondering if it’s the norm? Or have I took the graft off with it sticking to my clothes 

  • Hi Percy79, Don’t understand what you mean by “plastic threads” the only thing I can think of is the dressing coming  apart or the stitches or is it coming from your clothes. My dressing came off early and I used some male pads as my wound was leaking a lot and I had an infection. These male pads are good.

    Also if the graft dried up the hospital gave me some yellow parafin cream it’s was a bit like vasaline to keep the wound from drying out. I don’t think it will be the graft but it might be worth talking to your nurse.

  • Morning, I got my dressing off after a week and catheter after 2 weeks. I too have had issues with leaks and my wounds opening they just stating to heal now. But the tip I don’t know I was using the parafin they provided but then was told to use flaminal by the district nurse. But yesterday two plastic bits like fishing wire  appeared tried pulling them but were routed inside my tip and was unsure if that was due to the plastic surgery.  

  • I think I would let your hospital nurse have look.

    Regarding you lymph nodes, could I ask how many did you have removed and do you have any side effects. I am getting a node biopsie next month, they did not do the nodes when I got my glansectomy.

    • Yeah phoning specialist tomorrow and asking. I’ve had two surgeries on my lymph nodes. One prior to getting penis cancer removed then the other when I had penis done. The first was ok it’s just the position it’s at my wound popped open on the right side left side was fine. Just had to get it packed every day. Then as it was healing I had my second surgery and again left side fine but holes appeared on the right side. Hurts a bit moving around at first but I’m getting there now. It’s just the mobility that gets to me being a postman and always on the move is hard. Hope everything goes well for you 
  • Hi Robert ,Perry hope your both well, Perry can I ask how you went with the noods as they think mine could have spread to the right but the left seamed ok ,but the consultant says if positive on the right he will take both sides away which hopefully will stop the cancer spreading further.  What's your recovery time after this operation and did you go home with a drain bag on ? 

    Best wishes Dave 

  • I had my nodes both sides as the same with you to stop it spreading. I was in hospital for five days two days bed rest which was hard. But 3rd day was allowed to get out the bed and move around which was difficult at first putting the weight on my legs. I had the drains in for the full 5 days and when they both stopped draining I was able to go home 2 days early. I’ve since had a letter saying they got all the cancer from my nodes. I have to have a PET scan to see if they got the abnormalities in my penis within 3 weeks. Just as a precaution. Just take your time and let people look after you as it’s a long slog. I’m almost a month now and there’s a massive difference they said 3/4 month’s recovery. Hope it all goes well 

  • Dear  Percy79, thanks for the information this is very useful, had my glansectomy about 6 weeks ago but they now want to check nodes so a biopsy is scheduled for mid  April. I had read that getting all nodes out was a big operation and you have just confirmed that hopefully biopsy confirms I am clear.

    Dave, do you have a date for the node operation.

    Robert

  • Hi Robert hope your OK, just waiting for a date now ,after speaking to the consultant on Tuesday if my scan and biopsy come back positive on the right side he would take the lot out while he was doing the pendectomy. He was very concerned about it spreading.  Best regards Dave

  • Hi Dave Just checking to see how you are doing, do you have a date yet. 
    I have my node biopsy next Wednesday.