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WorriedWife79

Don't know whats going on...

Hi

My husband went to the doctors a few weeks back with an upset stomach his Calprotectin levels were high (900) and they sent him for a colonoscopy. He has Bupa - it was to see if he had crohns/colitis.

During the colonoscopy they found several polyps and a 5cm tumour (their words). He didnt have crohns or colitis. They sent him for an MRI and CT but didn't really explain why. His secretary is difficult to get hold of.

On Friday he went to a follow up appointment and the doctor dropped the bombshell that he would need to prepare himself emotionally for major surgery urgently and he would need a stoma. But then He said that it wasnt cancer (yet) and it hadn't gone into his lymph nodes which has confused me. He didnt say if the biopsies had come back and hadn't looked at the CT scan.

He said it was as much as he could do and he would be handed onto another doctor. He said he would call today. He hasnt called today, we have a lot of questions and nobody to ask them to!

Lucy118

@WorriedWife79, I’m so sorry you find yourself here with these worries. Unfortunately as none of us here are medically trained, no one can really answer your questions. However, until the biopsy results come back they can’t be 100% certain if it is cancerous, although they often have a good idea by just looking. If I were you I would keep trying his secretary for answers. On a positive note though even if it is cancerous it is usually treatable and if not curable. The fact that they have said they will operate is positive as they will remove the tumour. Keep pestering the secretary until you get the answers you need. Lots of love :x::x::x:

Gypsy

Hi @WorriedWife79 . I am so very sorry that you have had such confusing news and that you are both so understandably worried. I am just a patient and most of us on here are either that or a relative and can only answer in that capacity. So I can only say that to me, this does not add up at all and yes, you do need to obtain answers asap. I think it is bad that you did not get a phone call today but perhaps that is because the hand on to another consultant was being arranged. I think if it were me, I would get onto the GP tomorrow and relay all that you have been told and ask them to find out what is going on. We are all here for you, come what may. Cathx

WorriedWife79

Thank you so much all. I'll try ringing around various people tomorrow and will let you know how it goes...

Stella 2020

@WorriedWife79 , that sounds very confusing indeed. Is this consultant a gastroenterologist (ie a physician) or a colorectal surgeon? If he is a physician then he will be handing over your husband’s care to a colorectal surgeon who can provide much more details. They both do colonoscopy and gastroenterologist tends to involve more with IBD etc.

stevejl

Hi @WorriedWife79 sorry to hear what has been happening to you both & you have already been given good advice.
At my colonoscopy on the 8/7/21 they found six benign polyps which were removed & a 5cm tumour in my sigmoid which they biopsied, They inferred at the time that it was cancer but this was confirmed a week later after the histology.
I am now 5 weeks on from my major surgery and was declared cancer free by my surgeon nearly 2 weeks ago even though a small number of my lymph nodes that were all removed were infected & I start mop up chemo next Monday as a precaution.
I was lucky that my cancer was picked up as part of the BC screening programme due to my age so was always dealing with BC screening experts.
I was then handed over to a cancer surgeon & his team who will be looking after me now until 2028 as my trust has a 7 year post op programme.
I was told I was T3N1MO which is stage 3 cancer,1 lymph node infected(I had 7 in the end) & zero cancer elsewhere.
I had MRI & CT scans 1 week after my initial diagnosis so they could check for any spread which lucky for me everything was still contained in my colon area so I got the above diagnosis at stage 3.
I was also told I may need a stoma but this did not end up being the case as my resection was good after they removed my sigmoid colon as it had the tumour in it plus all the lymph nodes attached to it.
Hopefully that gives you a picture of my recent journey
Take care both
Steve
:x::x::x::x:

WorriedWife79

Thank you all for your comments.

We went to see the surgeon last week and he explained it far clearer. He said it is like a puzzle and he doesnt have all the pieces yet.

He sent him for a blood test and is going to find the CT that hadnt been handed over. Then he has to have more biopsies taken tomorrow (they have found low grade and high grade dys-something so far but want to take more) under General Anaesthetic, they'll have an MDT meeting and then let us know whats going on the following week.

So we are still waiting - but the wait at least makes more sense!

WorriedWife79

Oh god it continues. He had to have more biopsies last week under General Anaesthetic and we was told they would have an MDT yesterday and tell us what is going on today.

We've had another agonising wait, an awful nights sleep and now have just been called (at 11) to say our appointment at 2 is being cancelled as they dont have all the results back and they wont have an MDT until next Thursday.

It's awful. The wait is awful. and it's being gping on since mid July.

Frances Styles

@WorriedWife79, the waiting is absolutely the worst bit, I am so sorry you've been made to wait once again, but without the full picture they can't offer the best options, not much help when you're the one waiting I know. I feel we spend most of our time waiting since we've joined this awful roller-coaster. Hang in there, love Frances :x::x:

Baxter2

Oh my @WorriedWife79, this just isn't good for either of you living with this uncertainty and endless waiting! These things always seem to be dropped on you on a bloomin Friday too! It is torture and most of us have had to endure similar scenarios. That doesn't help now though, I know.

. I think if it were me, I'd be considering politely chasing up everyone you have a contact for and telling them how this is impacting you both and although the full picture isn't yet known, can you please speak with someone and gain some further information to help you process the situation as it stands today. The alternative is to sit tight and do everything in your power to distract yourselves and keep busy until you hear a more definite diagnosis and importantly, a plan! This is easier said than done of course.

Please let us know how things go if you can. It's not easy.

Sending you both lots of love,

Karen πŸ’›πŸ’™β€οΈπŸ’œπŸ’š

WorriedWife79

Thank you. It's just so... I dont know the right word. Everything had been gearing up to today, we were both doing ok, keeping ourselves busy, keeping our minds off of it. And then woke up this morning, with half dread as to what they might say but relief to finally know whats going on and they've cancelled with 3 hours to go.

The histology report isnt back apparently, even though theyd chased it, and they only have the one MDT a week, so its another weeks wait. I'm not sure the next wait can be quite so chipper and we've got three young kids at home, one whose 5th birthday is on Wednesday.

Baxter2

I'm so sorry you've both got all this worry piled onto you @WorriedWife79. It is just so hard and my heart goes out to you both. All I can suggest is to try to focus on your little ones 5th birthday celebrations as difficult as that may be. Tick off the days one by one and next week will be here before you know it!

Sending lots of love to you both!

Karen πŸ’›πŸ’™β€οΈπŸ’œπŸ’š

P.s. just a handy hint, if you put @ in front of the person you wish to reply to, they'll see you've done this and be prompted to read your reply just like ive done for you above @WorriedWife79 :x::x:

WorriedWife79

Thank you so much @Baxter2 and all... You are right, just another 6 days to wait. 2 are the weekend, 1 is a birthday, so really it's just three.

I'll let you know how it goes :x:

Baxter2

That sounds like a good way to tick off the days @WorriedWife79! Thinking of you and happy celebrations for your little one!

Lots of love,

Karen πŸ’šπŸ’™β€οΈπŸ’›πŸ’œ

WorriedWife79

We have had good news and thank you so much to you all for the support, especially @Baxter2

The histology is not showing cancer yet, and it hasn't gone through the bowel wall so they can take it out of the bottom and he wont need a stoma. They'll then send for it to be tested again and sort all the other little ones out.

Thank you all so much, I am amazed and blown away that you have been through so much and manage to find the strength to help others. Your advice and support has been a godsend.

For all those frantically reading and googling this while waiting for news (as I was) may I wish you the very very best.

Baxter2

Oh wow! This is just awesome news @WorriedWife79!! Just amazing! I'm so very chuffed for you both and your little family! I hope you managed to enjoy your little ones fifth birthday too? Do,you have an idea when surgery will be planned?

Sending you both lots of love,

Karen πŸ’œπŸ’›πŸ’šβ€οΈπŸ’™

Tiffany

@WorriedWife79

What a lovely post! So glad to read your update and praying that all continues to be positive for your husband.

I've also found this forum to be my lifeline at times....so good to talk to people that really understand.

Sending love, Tiffany :x::x:

WorriedWife79

Hello @Baxter2 @Lirio345 @Tiffany and all the other lovely people in here!

Just popping in for an update... he had the op and they managed to remove it all in one go which is great. He is also now on the mend and feeling much better.

Just a quick q - the Histology report is back and they are discussing it at an MDT tomorrow. Is that a bad sign, or really doesn't mean anything?

Lirio345

Hi @WorriedWife79, thank you for popping back to update us. It sounds as if he is recovering well from the op - brilliant news.

It is impossible to second guess why the histology report is going to MDT, - it could be standard practice in that hospital - they do all operate a little differently. Thankfully you should hear soon after the meeting what was discussed. Please try to switch off tonight - easy for me to say I know. Take care and please stay in touch, Kim :x::x::x:

Baxter2

Brilliant news @WorriedWife79! Thank you for letting us know! I'd be inclined to agree with @Lirio345 in that often, decions regarding treatments all go through the MDT meeting process. Hopefully you'll hear feedback soon after the meeting. If not, a polite chasing up call or two to either specialist nurse and/or the surgeons secretary should help.

Sending lots of love to you both,

Karen πŸ’œπŸ’šβ€οΈπŸ’™πŸ’›

WorriedWife79

Thank you so much both. We are seeing the surgeon just after, so fingers :x: it's just a routine thing.