Just diagnosed

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Steviebabie

Lack of Information

After feeling ill for nearly nine months with vomiting, diarrhoea, lack of appetite and some foods tasting awful, along with major weight loss and hair loss, I eventually went down the private healthcare route to try to get a diagnosis and within a few weeks, had a CT scan which located a lump in my bowel and a following colonoscopy confirmed the lump where biopsies were taken.

Yesterday I met with a colorectal surgeon who confirmed I have cancer but he would not be able to operate as I needed to lose some weight. This will happen next year (no date or timescales clarified) once the surgeon has discussed my case with his anaesthetist team. I wasn't weighed at any time and I assume this decision was based on a visual rather than medical assessment. The tumour hasn't metastasised as far as he is aware which is great news but I was concerned about what could happen in the intervening time period it will take me to lose enough weight to have surgery (the amount of weight loss wasn't specified).

I left the consultation in shock, confused and bewildered, not knowing the type of cancer, what stage its at, what type surgery will take place and when, and whether I will receive any pretreatments to shrink or stabilise the tumour during this weight loss period.

Has anyone else experienced this lack of information? I feel to be prepared to fight this cancer, I need to have this information and a plan of action to get me through this.

stevejl

Hi @Steviebabie great to hear things are moving for you & you are feeling a lot more confident /positive for your journey ahead.
Sorry to hear about your mum as I lost mine to cancer some 13 years ago now after it spread from her breast to her brain.
Please keep us up dated & good luck with your next colonoscopy however I do not envy you the moviprep though I have another 8 months to my next one & the night before I am not looking forward to.
Take care
:x::x::x::x:

Lucy118

@Steviebabie, I’m glad things are now being sorted and hopefully you’ll have a plan in place soon. Good luck for your colonoscopy :x::x::x:

Steviebabie

Had second colonoscopy where they took further biopsies and now want to do further CT scan of my chest area to check for secondaries. Still don't have any update on cancer or treatment plan. Hope everyone had a great Christmas.

Amanda Sandham

@Steviebabie , aww I looked at the time of your post and really felt for you- the early hours are difficult aren't they? Just wanted to give you some reassurance about timing. I first went to see my GP in May of 2020 but didn't have a colonoscopy until the last day of July because of COVID restrictions. My actual treatment started in October with a course of radiotherapy then my operation was at Christmas last year. I was told all the way through that bowel cancer is very slow growing and the delay would not have any impact on the eventual outcome. I hope you get some plans in place soon and get the treatment started :x:

Steviebabie

Thanks Amanda, that is helpful, hope you're well on the road to recovery. Sx

Molly2me

Hi @Steviebabie just caught up and hope everything is falling into place for you and you’ve a date for your ct scan. Take care :x::x:

Ali

@Steviebabie just been reading your thread and glad that you now have more information as once appointments are in place, it does seem to help, As above once the biopsies are taken you should get more information about staging. Sorry to hear about your Mum’s cancer, can’t believe you weren’t checked for this earlier. Not sure how old she was but I was told it was unlikely to be hereditary unless I had it it my 40s (I was diagnosed at 65) so my children should be ok. I too started private to get colonoscopy and scans as quicker than NHS but then recommended to go back to NHS as they have their targets and will be quicker to get me in. I had an op 19;August and started 12 weeks of chemo in October with my final cycle today and last tablet 12/1/22. I cannot wait.
Wishing you all the best and let us know how you get on

Ali :x::x:

Lucy118

@Steviebabie, I am so sorry they are taking a while to come up with a plan for you but hopefully you will hear soon. Once you know your plan it should become a little easier. Lots of love :x::x:

Steviebabie

[quote]Quote from @Ali:

Hi Ali, Sorry for the delayed response. My Mum was in her early 60s when diagnosed and passed at 66yrs. We have a bowel screening programme in Scotland and completed mine every year and got the all clear every year, so was surprised when I was diagnosed. Wishing you well with your final treatment and a successful outcome.

Steviebabie

So after two colonoscopies my biopsies haven't given enough information so still don't have a treatment plan nor any information on what stage my cancer is at. Going for my 3rd colonoscopy on Thursday 13/1 so fingers crossed.

My tumour is large enough to have blocked my bowel which is causing me other issues such as nausea, diarrhoea and taste is affected. Ive asked my Consultant if he would insert a stent in my bowel to hopefully alleviate these issues, which he has agreed to do.

Ive also had two iron infusions in the intervening period as Im also anaemic and Ive also been advised that all cancer operations have been cancelled due to covid so not sure whats happening.

Ali

@Steviebabie oh that’s not good. My final was a colonography (where air is pumped into bowel) and it was after this that I became constipated for the 8 days. I did wonder afterwards why they didn’t remove the tumour as soon as they realised the scope couldn’t pass the tumour, but hindsight is a marvellous thing! Might have save me going in as an emergency. They did talk about having a stent fitted but not sure that would have worked after a build up of 8 days….
I hope you get to have your op whether or not you lose weight but guess that is an incentive. All the best and let us know how you get on.

Ali :x::x:

Steviebabie

So I attended hospital for my third round of biopsies via a further colonoscopy last Thursday as previous biopsies didn't provide the information my Consultant was looking for. After taking further biopsies, my Consultant confirmed that my tumour is in fact benign and not cancerous as he had first thought and advised me that I don't have bowel cancer. Felt a mixture of emotions, from tears of relief to anger that I had been given a misdiagnosis, but more overwhelming relief and thankfulness. I will still need to undergo surgery to remove the tumour but thats a million miles better than where I was a few days ago. I just feel so lucky and thank you for the support you have given me in the previous weeks that kept my spirits up and kept me moving forward. Sxx

Baxter2

Wow! That is just incredible news @Steviebabie! Quite unbelievable!

Sending lots of love

Karen 🌼🌻🌸🌺🌷

Jane39

@Steviebabie
Wow what a whirlwind but in the end what brilliant news.
Very pleased for you. Good luck with surgery.
Take care, Jane :x::x:

jellytot

What brilliant news.
Sending lots of love too 🌻🌼🌺🥀

Steviebabie

Thanks Karen, I can’t quite believe it myself, its like something out of a book or film plot. Sx

Quote from @Baxter2:
Wow! That is just incredible news @Steviebabie! Quite unbelievable!

Sending lots of love

Karen 🌼🌻🌸🌺🌷

Steviebabie

Thank you Jane. Sx

Quote from @Jane39:
@Steviebabie
Wow what a whirlwind but in the end what brilliant news.
Very pleased for you. Good luck with surgery.
Take care, Jane

Steviebabie

Thank you and sending love right back to you. Sx

Quote from @jellytot:
What brilliant news.
Sending lots of love too 🌻🌼🌺🥀

Lirio345

This news is unbelievably brilliant @Steviebabie! Please be kind to yourself as you will probably need time to get your head around this news. Take very good care, Kim :x::x:

Liz Blakelands

@Steviebabie Brilliant news and good luck with surgery. Definitely a good start to the new year :x::x: