waiting for diagnosis - some stories would be helpful

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HI,

I am a 41 year old female. I had twin boys last year (January 2024) and was dealing with some internal hemerroids after my labour. I could also not hold anything in if I had the urge to go. I went to see my GP who also seemed to think it was internal hemerroids. After some pelvic floor therapy, the issue seemed to have gone away.

Fast forward a year later - i started seeing a bit of blood in my stools, which I assumed meant the hemerroids had come back. I was also dealing with some bouts of constipation, and as a result was straining a bit more. I went back to see my doctor at the end of summer, and he scheduled me for a colonoscopy to check out the internal hemerroids. Following the colonoscopy, the doctor confirmed that they had found a rectal mass.

I am currently in limbo - waiting for pathology , and for my MRI and CT scans. All I have are the notes from my colonoscopy, and I was wondering if anyone could share their experience based on similar findings that they have? At this point I think I understand it is advanced, and I won't know until I get more scans, but I am terrified that it is Stage 4, and would like to hear some stories of people that had similar results that ended up with a better diagnosis.

The findings on my colonoscopy noted:

"Large ulcerated rectal mass - between 1st and 2nd rectal fold, LL to posterior midline 40% circumference'

Recommendations : Rectal mass - likely to be cancer.

Anything positive would be extremely helpful to me in this time of limbo.

LazyBear 5 months ago

Hi sorry that you find yourself here in this awful position. Waiting and not knowing is one of the worst things. What happened with my husband was that they found something suspicious during colonoscopy, then he had scans, and then all the results had to go to an MDT meeting where the specialists will review your results and come up with a treatment plan, and they will then arrange to see you.

Have you been given a named nurse or anyone to contact? We were able to contact the colonoscopy team until my husband was passed on to a nurse specialist. They might be able to chase scans for you.

I wouldn't get too hung up on staging - this can change anyway during the process.

My husband's cancer wasn't rectal it was right hand side colon so im sure someone else will be along to advise about that.

I hope you get news and a plan soon.

Kareno62 5 months ago

Hi steffbf689dc and a warm welcome to the board. There’s lots of success stories on here so have a look at some of the posts and if you click on peoples names then their profile page may show their journey to date.

I can’t comment on the medical terminology on your report but I can tell you that a large mass does not necessarily mean that it is stage 4. Staging is based on how far the tumour has grown into the bowel wall so your scans will give a better indication of this. I had a 4cm tumour that had grown into the bowel wall but not broken through it or spread to other organs so it was stage 3.

Unfortunately it does sound likely to be bowel cancer at this stage but the pathology report will confirm this for definite. Please try to focus on the fact that bowel cancer is slow growing and also very treatable.

I was diagnosed in 2016 and I’m still ‘no evidence of disease’ as are the 2 ladies that I became good friends with during my treatment.

We’re all at different stages of treatment and recovery on here and I’ve seen a lot of success stories during my time on the board. The next few months will be tough but it’s doable and we’ll be here to help and support you through it

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Susan13 5 months ago

I'm so sorry this is happening to you! You can click on my profile to see my full story but there's a couple details I will highlight for you.

At discovery, my tumor was huge, 12.5 cm. It had penetrated the rectal wall and invaded both my vagina and my bladder (I'd already had a hysterectomy or it certainly would have invaded my other female organs). I was T4bN0M0 or Stage 2.

Let that sink in because it is very unlikely that your tumor is as large as mine was. There is so much that goes into staging and the entire staging system is somewhat flawed. It is based on averages statistics and you are not a statistic. Your cancer is unique to you. It will follow a course that is uniquely its own. You have every reason to hope that this will be manageable.

Best of luck to you. Please let us know how things go. I truly hate reading about a diagnosis in such a young person.