Wife Of - Feel let down by the system

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Hello

I hope you don’t mind me posting on here as I am not the one with cancer. but I have read so many posts and it has helped me understand a little more of about anal cancer - which I knew nothing about.

my husband is the opposite he has read nothing.

I would really appreciate some advice.

5 years ago, my husband was filling a toilet bowl with blood, it took 2 years of visiting the doctors to check for polyps, nothing was found.

2 years ago after further bleeding he was sent for another check for polys and they were removed and biopsy taken, we never heard anything, so thought no news is good news.

Few weeks ago he got a call out of the blue apologising for not been told but he was found to have AIN3,

1 1/2 weeks ago a visit to specialist, he apologised for calling at work and given info over the phone ( mistake) he has advised there are no lumps but needs a general to do several biopsies to see the size and depth, to determine treatment - says he has put him on priority

we have not had a single letter from the hospital it’s all been verbal, no results sent to doctors either

My 62yr old husbands general health

1. has aches in anal area

2 still bleeds

3. Not the strong healthy man he was few years back - this could be age

4. Bowel habits - when he has to do it is pretty quick - doctor said this is normal

I am trying to stay strong, but the unknowing is the worst thing of all. I am pretty mad with the mess up, has this happened to anyone else?

Does no lumps mean it’s still AIN3? And not progressed , I have searched for timescales but it varies and nothing to help with this.

Summer69. 11 months ago

Morning

wow PALS works

I filled in the pals form last night and have just got off a call with the doctors secretary saying she has received PALs contact, that is so quick is it not!

I highlighted let downs and things that have gone wrong and said I want to know exactly what cancer lump was removed off the anal wall in 2021

I said there has been no written correspondence since June 2021, first verbal communication was May this yearand she said this is normal you don’t normally get any letters. I said do you not get a letter on removal of polyps and biopsy results she said no.

I have asked for confirmation of the type of cancer removed from the anal wall in 2021 via email not by telephone, the doctor said to my husband it was a fluke he took the growth off the anal wall and had it checked, as was not the purpose of the operation and he thinks he got it all at the time - we are very grateful for This action and we hope it is all gone and this worry is for nothing.

thank you for all your advice it has helped greatly

Sandra x

Irene75359 11 months ago in reply to Summer69.

Sandra

I am so pleased you have heard from PALS, however... the main issue as I see it, (forgive me if I have the facts wrong) is why did your husband slip through the net? If you had had even a telephone call, never mind a letter two years ago alerting you to his condition you would have chased it up. It seems there never was a letter, even to your GP, which is the norm when a person has a procedure or is seen by a consultant. Your husband can ask to have access to his medical records if he wants to, it takes a few weeks but the surgery normally keeps copies of everything.

Well done for chasing this up on his behalf.

Irene xx

Summer69. 11 months ago in reply to Irene75359

Thanks so much Irene

I have replied to the PALS email and asked just that question

yep, no letter to hubby or doctors in 2021

first contact was letter to doctors this year to say they would arrange a face to face appointment- which was put through as a phone call to my husband at work accidentally.
Then face to face.

so I have taken your advice and asked for results of 2021, why the delay and medical information

thank you again, this can not happen to anyone else, even if he has managed to cut it all out it’s the uncertainty, the wait and overthinking that this has caused.

I really appreciate your help, you have been a fountain of knowledge xx

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