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The wait......

30 Aug 2019 09:59

Hi all, looking for a bit of support I guess......

Yesterday I had a colonoscopy (due to low iron). They found a lump, approx 2.5cm. They tattooed round it, took some biopsies and told me I should get the results quickly. I saw the lump on the screen.... all I can describe it as is whiteish and bumpy, like cauliflower. They didn't say the words but was told i'd be having a lot of phone calls and appts very soon. The first one being a CT scan with contrast... am I jumping to conclusions or am I right in assuming this is definitely cancer?

I'm scared out of my mind with worry at the moment. I have 3 children under age of 18 and don't want them to go without a mum like I did. I lost my mum to cancer aged 17, she was 35. I'm 46 and every member of my family has had or got cancer......

Alison

 

The wait......

1 Sep 2019 11:52 in response to Aliphant

Hello Alison, 

I am sorry to hear that they have found this lump following your colonoscopy and I hope they can tell you very soon what it is as there is nothing worse than being left in limbo with no precise explanation. It's difficult for anyone to tell you at the moment what it is but I do hope that they will tell you more soon. 

I hope you won't have to wait long for this CT scan with contrast. Try not to anticipate yet what it might be. I know it is really hard in these circumstances and while you are going through what feels like an interminable wait for answers, try if you can to keep occupied and focused on other things or it might make you feel even more anxious. 

Keep us updated if you can when you find out more. We'll be keeping everything tightly crossed! 

Best wishes, 

Lucie, Cancer Chat Moderator

 

The wait......

1 Sep 2019 12:06 in response to Aliphant

Hi

Sorry you are going through this.

I have had bowel cancer twice in the last 5 years. first time age 49. In my experience before my colonoscopy they always said if we find cancer we will tell you today. Which on those two times I was told. I have had a total of 5 of these tests now but without them my cancer wouldn't have been found.

The combination of the colonoscopy and CT with contrast will tell them either way.

Was your Mum's bowel?

I wish you all the best, specialist nurses are wonderful and act quickly to arrange all your appointments. Just let them get on with it. 

I have had part of my bowel removed twice with chemo after the second time. My latest CT was clear.

Let us know how you go on. The waiting is awful I know. Try to keep busy and try not to look things up on the internet it will scare you to death and we tend to think the worst. x

The wait......

1 Sep 2019 16:15 in response to Moderator Lucie

Thanks Lucie.

The wait is torture!

Regards,

Alison

The wait......

1 Sep 2019 16:25 in response to Ineedabreak

Its nice to speak to someone who is going through and has gone through this. I feel very alone.

From the way they were talking they wouldn't give me a diagnosis without proof/biopsy results, but they were hinting enough and are hurrying things along.

My mum had a lump in her gum, then her neck, then her bowel..... then it took over her entire body. I was 17, so I was never told exactly what type it started out as. My dad has leukaemia, my brother had thyroid cancer and everyone else has had cancer in one form or another.

I've been told I'll have to have a section of bowel removed, whatever the results turn out to be. 

As for not googling..... too late..... 

Thanks for the support, I'll keep updating as it unfolds.

The wait......

1 Sep 2019 18:12 in response to Aliphant

Ok so whatever it is, it has to come out. And the sooner, the better and then you can move on.

When I was first diagnosed it was 3 days before christmas.... yep what a christmas that was.

It all happened so quickly, was told I had cancer, in shock, 2 weeks later I had part of my bowel removed, they told me they had got it all. By the time it had sunk in, it was gone and I didn't have cancer anymore. 

We just have to let the surgeons do whatever they need to do to get us well again. I guess with your family history it set alarm bells off.

Good luck, please stop 'googling' and let us know how you get on. I'm here if you have any questions x

The wait......

2 Sep 2019 09:12 in response to Ineedabreak

Thanks. I just feel like life is on hold whilst someone decides my fate.

I keep waking up thinking about "stuff". I'm tired enough with the lack of iron but broken sleep is making it worse.

I can't concentrate on anything, my house is a tip and I just can't be bothered to do anything but sit and think about all the negative things....

I've got so much to do with 3 kids and caring for my partner.... I feel like I'm drowning....

The wait......

2 Sep 2019 11:19 in response to Aliphant

Yep I know exactly how you are feeling.

I decided to give myself a 'kick up the backside' when I was in this 'not knowing' stage, very scary because we think of the worst outcome don't we.

I started to get ready and prepare for the tough weeks ahead. Stocking up on the groceries, paying bills etc. Making it as easy as possible for everyone else while I was out of action in the coming weeks.

After surgery you can't do much, no driving, hoovering, emptying washer etc for 6 weeks at least. You're at risk of a hernia if you do.

You have to wear hospital socks for 6 weeks too, not very flattering but they are there for a reason.

Once things get moving, as each week passes you will realise how well you have done that week.

Have you family to help after your op? You will need it. 

I sent you a friend request for if you have any questions or concerns. Try and be strong and focus on the fact that they have found something, it has to go and the sooner the better so you can move forward.

The wait......

6 Sep 2019 09:12 in response to Ineedabreak

Update....

Had my CT yesterday. Got pre-op appt on Tuesday.

STILL no idea what the results of my biopsies are, I was told i'd get all results together. I'm going out of my mind with worry!

The wait......

6 Sep 2019 15:43 in response to Aliphant

Hi

They don't seem to take into consideration that a day is like a week when we are waiting for news and fearing the worst do they, it's always the same though, seems to be how they work.

Once all the tests have been done, ct, colonoscopy etc they get all results and have a meeting about you where surgeons, specialist nurses etc discuss your plan of action.

Has a nurse been keeping you up to date with things or have you just not heard anything? It's just the worst feeling when you're left dangling. When you get told something either way you will feel better because you know what you are dealing with and not imagining alsorts.

x

 

The wait......

7 Sep 2019 07:20 in response to Ineedabreak

Morning,

I rang the liaison team that are supporting me with everything yesterday. They said they are having a meeting Wednesday morning to discuss my results and plan of action. There is a letter on it's way to me apparently with an appointment time for Wednesday, when I'll be getting all my results and be told when surgery will be and what the plans are.

Counting the hours till Wednesday now.

x

The wait......

7 Sep 2019 11:16 in response to Aliphant

At least on wednesday you will know exactly whats going on and whats going to be done. You can focus on that and if you have questions that you think of before then, write them down because I always used to forget when I got there.

They will probably give you a date for your op.

Take someone with you for support (you probably will bedoing anyway) and to remember what they've said as I forgot half of it.

Good luck. I'll be thinking about you on wednesday, let me know how you go on x

The wait......

9 Sep 2019 10:48 in response to Ineedabreak

As you can imagine, I am going through every scenario and have a million questions flying round in my head.

A couple of niggling things are that I remember the colonoscopist saying he'd checked the right side but not the left (or viceversa) - why? Do they stop looking any further when they find something big? Was my CT scan to look for more or to see how invasive the polyp he found was?

Also what is the likelihood of me ending up with a stoma? and percentage chances that it is cancer?

I know I only have 2 more days till results day..... but it feels like I've been waiting forever already.

Thanks and sorry if I'm doing your heads in but I'm a very negative and pessimistic person and I dont like surprises, good or bad.

The wait......

9 Sep 2019 12:10 in response to Aliphant

I know exactly how your mind is going at 500 miles an hour. And if you're like me it will be full of the worst outcomes. You are not doing my head in, glad to be here for your questions even if I can only help a little.

Try to keep busy, clean, iron, bake... do anything to keep you busy. As you say in a couple of days you'll know more.

Write all your questions down and take them with you.

In my experience, when they found my big polyp that they weren't sure if it was cancer, they didn't go any further round because they couldn't get past it. I think the CT will tell them along with the biopsy what it is.

My first time, surgery took my right side of bowel and appendix (just because it's attached and no use). Second time, the top part of my bowel so now I just have the left side left. Everythings settled down and amazingly I still go to the loo the same amount of times as before. They only do a stoma as a last resort. The second op they weren't expecting to do one but just in case drew on me where it would be, first thing I asked when I woke up! I was so pleased that I didn't have one but if it saves your life I would have had to get used to it.

If you are unlucky enough for it to be a cancerous polyp, they remove it with good margins of healthy bowel and replumb large and small bowel.

Hope this helps a little.

The wait......

11 Sep 2019 10:56 in response to Ineedabreak

Hi I read your post today and see that today is the day fit your appointment.  Good luck let us know how you get on.