Hi I’m in the middle of treatment/diagnosis

It looks like I’ve penile cancer following a recurrence of Paget’s Extra mammary condition and a penile Walt. So far, one circumcision, one wart removed and urethra remodelled, then glans resurfaced with a skin graft. Latest procedure stopped by surgeon,biopsy, CT and ultrasound tests. Hope to know more in next ten days.

  • Hi and welcome to the online community

    I'm sorry to read that you think you have penile cancer and are currently having tests and biopsies. I'm tagging into my reply to you as he has also recently joined this group and might be able to share his experiences with you.

    Do come back and let the group know when you've had your results and I'll be keeping my fingers crossed that it's not cancer Fingers crossed

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  • Yes diagnosis was confirmed and I’m currently in hospital having had a glansectimy and lymph nodes removed from my groin and pelvis..  

  • Sorry to hear that . I'm sure the other members of this group will be happy to share their experiences with you if you wanted to ask any questions about your treatment.

    x

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  • Well it took much longer than I expected. Two weeks in hospital with the drains. Then we llowed home with one drain hi he spectacularly blew out t home. Back to hospital to have new drain fitted under local anaesthetic which went very well and lots gunk came out. Just had it  removed after  week. Still some stuff but I can now touch my toes without restraint. About to be handed over to oncology and good bye to surgery. Surgery is a failure waiting a medicalise treatment in the meantime only treatment. 

  • Still very bloated in the lower abdomen and pubis. Hoping for some alleviation and exercises. Now waiting for pre plan scan. Been told to increase water consumption 1.5 litres a day and less caffeine. Beer doesn’t count.

  • Just finished 25 radiotherapy treatments,getting a pacemaker on the way and Covid. Quite a journey. Lymph oedema has occurred and the local lymphoedem specialist nurse has visited and suggested some exercises. Hope they bring some alleviation, aspect of removing lymph nodes which I didn’t properly understand 

  • Lymphoedema is mainproblem physically  but I’m in a treatment pathway, waiting for compression knickers and continuing with massage. Seeing the clinic soon. Apart from that bit screwed up about how difficult to achieve ejacuktion.

  • Story continues. Now scrotal warts and maybe recurrence of cancer with pendectimy is in prospect. Full blown biopsy in May when more might be known. In the meantime keep fingers crossed and get to holidays no booked attractions.

  • Now waiting discussion from medical team on next phase. Quite painful with scottal lesions which bleed Need to see some progress