Cancer pathway

  • 9 replies
  • 32 subscribers
  • 368 views

Hello

I have recently joined after being diagnosed with BCC.  Reading through many of the discussions about when people are actually receiving treatment for cancer, I don't understand why very few actually happen within the 18 week cancer pathway from referral to treatment commencing  ?

The NHS guidelines on the pathway appear to be clear, and yet so few actually have their treatment in those time limits.

The guidelines say that if treatment is unable to be commenced within that time frame then they should refer you to someone who can do it within that time frame, or have I misunderstood this ?

Surely 2 years to start treatment is not acceptable. 

From my own mental state having been diagnosed (which they weren't going to tell me for 11 weeks)  to then have to wait two years is appalling. 

Have others complained about this ? And what happened ?

Thank you for reading this.

  • Hi  

    I haven't had the wait for BCCs to be removed that you are experiencing but I can understand the frustration in wanting it removed as soon as possible.

    Have you spoken to your consultant to ask why there is such a long wait in your area? If so, and you don't feel you've had a satisfactory response, then you could speak to the Patient Advice and Liaison Service (PALS) at the hospital you're attending. Part of their remit is to help resolve problems and concerns when you're using the NHS.

    When you have a minute, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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.

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • I agree. I am new. I had a bcc wrongly diagnosed so there were delays and in the end more serious surgery was needed plus skin graft from which am only just emerging.

  • The same happened with me misdiagnosed and bigger skingraft, my bcc was on my Scalp so it's not going to grow hair back, where was your bcc?

  • Forehead

    Possibly scc tobe confirmed next week

    Graft from neck.

    2 months ago

    Dreadful experience

  • Awe I hope you have a better experience next week, I'm 2 month post surgery, unfortunately my histology showed remaining cancer cells so more surgery will be needed, my skin was taken from my arm the graft has healed really well but because its on my scalp it's difficult I can't hide it it's about 1 and a half inches 

  • Good luck too.

    My graft v prominent and difficult to protect 3cm circle

    Donor sign on neck 6 cm scar. Couldnt move my neck for 4 weeks.

    Ugh

  • I hope all goes well X

  • Hello. Thank you for your reply... I was beginning to think that I was the only one concerned about this.

    • I am so sorry about what has happened to you. 

    Please may I ask what you were diagnosed with in the first place ?.

    After insisting on being given my results and being treated in an appalling way by the surgeon who was supposed to do it,  I decided to go private to do the removal.  

    I had this last week and am now awaiting histology results.  

    The excision area is still a bit sore but is ok without any pain killers.  I asked the surgeon to show me what he had removed and it was surprisingly large considering the size of the BCC. It's on my back so I can't see it ...

    He was a very kind man and explained everything to me, beforehand and during the surgery.

    I believe that there should be challenges where issues arise and second opinions should be sought. 

    The latest information of Martha's law being brought in where you can get a second opinion has to bring better treatment. 

    The agency that the NHS here have delegated skin cancer to do not like people who ask questions,  they prefer you to accept what they are willing to give you, whether it is in 11 weeks time, or more, for results when they know you have cancer.

    Speaking personally it has been a terrifying time. To keep being told BCC is not cancer and it won't kill you so it doesn't matter when we get round to you is disgraceful. Mentally it's cruel. 

    I want my life to be as long as possible and to be treated in a proper manner.

    Good luck to both of you as you work through this. I send you my kindest wishes and a hug too.

  • Thanks for brave and honest response and comments.

    Yes passive and appreciative is the expected behaviour in our locality. Some individuals shone out as being kind and skilful but the process was generally brutal psychologically.

    2 gps diagnosed bcc on forehead when i knew it was not. I was not put on 2 week cancer referral route,told it was minor. Months later consultant said it was scc and as it had grown so large needed flap or graft.

    No proper information. Only just before surgery was told i would need help at home. Discharged with no support. Worst week of my life. In pain. Traumatised etc.

    Am horrified if this is happening to so many people.

    Lasting effects on mind snd body.

    Friends and macmillan helpline saved me.