Wife Of - Feel let down by the system

Hi Summer, of course you're welcome here as you help your husband through his journey! I'm so sorry about the (SHOCKINGLY LATE) diagnosis but I think you'll find this forum very helpful and supportive.

I'm still reeling from your post. TWO YEARS after the biopsies?

I tihnk that is not okay. I think that is borderline criminal.

I've never heard of someone's diagnosis being delayed for this long. This awful cancer is very, very treatable, but it's all about speed. They hustled me into it so quickly it made my head spin, and that was during COVID!

You are absolutely within your rights to march into whatever offices you need to march into and demand not only action, but accountability for this unforgiveable lapse in handling time-sensitive information.

I'm not a doctor and your husband's should be providing ALL of this information. I'm pretty sure that it's unlikely that the cancer HASN'T progressed during this lapse. I hope that's wrong. 

Heads should roll.

Suz

Hi Summer69 I wholeheartedly agree with everything Suz has said. Your husband needs answers and answers right now! I have never heard of this kind of neglect and just hope it’s a failure of the system and they all buck their ideas up and sort it out. Your husband needs to meet with the doctors involved and find out what happened and what are they planning in writing. With regards to pain I only recall itching before being diagnosed and the only reason I went to the doctors I thought I had some slight bleeding occasionally and decided to just check it out. My doctor examined me and straight away she wasn’t happy and said it’s not haemorrhoids due to how the area felt and sent me to my local hospital. 

Hello,

Sorry to hear you're going through all this.  I went to the Dr with bleeding, back in about summer 2021 (could even have been the previous year as I didn't keep a record at the time), did a bowel Fit test thing which was negative, so no further tests.  My bleeding kept happening every few months so I eventually went back to the GP who thought she could feel something with her finger so was referred for a colonoscopy.  This wasn't until Aug 22.

The colonoscopist found an unusual, depressed polyp, which was biopsied and came back as AIN3.

I then had a biopsy under anaesthetic (EUA) in October 22 which again showed AIN3 but the colorectal surgeon felt unable to remove the lesion as it was depressed so referred me to a more specialist centre.

I had another EUA in May 23 which this time showed AIN3 and squamous cell carcinoma (stage 1, no nodes), and it was only at this stage that I saw an anal cancer specialist rather than a colorectal surgeon.

When I told the first surgeon that I had been bleeding for a couple of years he didn't really believe it was related as he said it would've grown a lot in that time if it were the case.

I have talked to people on this forum who have been dealing with AIN3 for 5-10 years, which hasn't progressed into anal cancer, (but they've been having regular check ups).

I have read every research paper there is on depressed (colorectal) lesions and AIN3 (and now anal canal cancer), but I find a big part of the problem is that it is such a rare disease and there is so little known / written about it.  Even anal cancer treatment depends on whether it is inside or outside, further subdividing the research that is out there.

Whilst you have obviously been badly let down by not being told earlier about the AIN3 (and subsequent follow ups) I don't think you should assume that it will have progressed - it could still be AIN3.

Good luck with all the tests - I'm assuming they'll send your husband for CT and MRI scans now too.

Kate

Hello Summer69

I am not in the least surprised you feel let down by the system, you have been and shockingly so.  As a matter of urgency in your husband's shoes I would contact PALS (they normally have an office within the hospital) and tell them everything you have told us.  It is absolutely inexcusable that he was told two years after a biopsies that he was AIN3.

I have attached a link which gives information about PALS

 https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

I am sorry, I have absolutely no experience or knowledge of AIN3 but moving forward I very much hope that your husband's experience of care improves drastically.  Please do follow it up with PALS.

Irene xx

Morning 

thank you so much for taking the time to reply and actually feel a little better with listening to your experiences and gained knowledge 

I have everything crossed, I think my biggest worry is his general health, but that could be old age (our ongoing joke he is 62) 

I am hoping to come back on here with a happy update 

and I agree with anal cancer being unknown to those we have discussed it with. 

thank you again, Sx

28 September 23 is the appointment to go under general to determine the grade, size and depth 

we know it was AIN3 June 21 

is Anal cancer always visible? As nothing was visible in June 2021 when biopsy was taken 

I have read people’s journeys on here and it has been so informative, yet had me in tears on hour brave people are, my husband has read nothing and does not want to know anything, his way of dealing with things 

Hi Summer69 I wish your husband well with his intervention and that he will soon be on the road towards treatment. I am 68 and my oncologist said to me you are still young and should recover well after treatment so 62 is even better. My cancer was no way visible externally and my doctor managed to feel something not quite right just inside. The anus is relatively short in length going towards the rectum. My cancer was from what they call a sessile polyp which is more difficult to spot as it embeds alongside the skin rather than protrudes upright like a small mushroom shape. I had to have surgery before treatment to establish the size and depth and I think they were hoping to take a biopsy plus margins out free of cancer cells. How my surgeon explained it was think of an egg and the yolk is the suspected tumour and the white is the margin. They found the cancer cells were in the margins so that meant they had not been able to remove it all. Luckily my cancer had not spread to my lymph nodes or liver etc but they still prefer to treat you with the chemo radiotherapy just as a precautionary in case the odd cancer cells had not shown up. We women do experience side effects differently to men due to our genital differences and the vagina takes a knocking. We have had a couple of gentlemen on here recently starting treatment and hopefully they will come back on here and be able to give you some tips that we can’t. I can understand your husband doesn’t want to know anything as some people find it’s the only way to cope and they put all their trust in their team. On here you get information on what helped various people and we are all very different. Some people managed treatment fantastically well and recovered quickly but some of us had a bit more of a journey and when you get side effects you have never had you want to know if this is a normal part of recovery. Passing urine and stools become a bit challenging for a lot of us and I will bring up the famous sitz bath. Just get one as when the time comes your husband will be grateful for it. I am glad you are arming yourself with knowledge to help towards your husband’s treatment. Keep us posted.

Julie

When I was diagnosed I had had a CT scan instead of a colonoscopy as a previous colonoscopy had been extremely painful.  The CT scan clearly showed the tumour but because it was submucosal the biopsies were clear - twice.  It wasn't until I had deep biopsies taken under GA and also a CT guided biopsy through my lower back that it was finally diagnosed as anal cancer.

I am sorry this has been such a worrying time for you, and after such a shocking let-down in the early days I am hoping that the consultants now press ahead with all the tests (and treatment, if needed), that your husband needs.

People react in many different ways when faced with cancer, or the possibility of it.  My friend has cancer of the bladder and is remarkably unquestioning about any aspect of her condition and remains jolly and upbeat.  I am so pleased that you are there to advocate for your husband as he may be burying his head in the sand.  Of course it may all be nothing, but as you say, it is his way of dealing with things.

Please let us know how it goes on 28th September, and of course we are always here to help if there is anything else you need to know.

Irene xx

I have to assume that mine wasn't very visible, as I had cheerful happy 'resuts' from a colonoscopy and 'see you in 20 years." Since we're subjected to the dreaded anoscope here, I had that when I finally found a doctor who believed me, but was in so much pain from the scope that I couldn't take it and had to get an EUA (exam under anesthesia). She snipped a couple of polyps to biopsy, et voila.

It was the non-stop pain that kept me trying to find a doctor who would listen. This cancer has all sorts of pain associated with it, not the least of which is the embarrassment. I think all of the cancers are cooler than this one. There are worse cancers, but none that are this constantly humiliating.

I'm so glad I had a good husband through it all. I'm so glad for your husband that he's got you. 

Hugs

Suz

Hi Summer,

I am so sorry to read this. This is shocking to hear. 

I had stage 3 anal cancer, diagnosed in 2020. I was unusual in that I did not have any lumps or bleeding at all. No changes in bowel habits either. It was a miracle that it was found. The cancer had progressed to surrounding lymph nodes. I completed the standard protocol of radiation and chemo. I had a recurrence last year, but it was local so I had the big APR surgery. I'm one year in remission!

We have all had to be our own advocates and it's a pain. Be loud, call everyone you need to, follow up as much as possible.

Sending support and prayers to you and your family.

Hopie