Hello! I am in my early 40s and have recently been diagnosed with bowel cancer/ colorectal cancer. I have a primary tumour in the transverse colon. This was picked up at routine screening as I had a borderline ovarian tumour removed more than 5 years ago- so initially it was thought when I had my internal scan that I had a recurrence on my ovary. I am quite complicated and unusual I think! The hospital have been so wonderful, I've had 2 colonoscopies, a CT, an MRI and they have now confirmed they think it's primary bowel cancer with spread to the liver and ovary/ omentum etc. I may have something called a Krukenberg tumour. I am due to start chemotherapy next week- to shrink the disease then have surgery on the bowel, liver, ovary. I have obviously had some experience in the past with the borderline disease and this process has been fast but a journey in the sense of he initial shock of a recurrence, then seeing something in the bowel on the CT and so on. I think I am dealing with it okay and feel very supported by the hospital who as I said above I am so grateful for- and so grateful for the screening as I also had minor symptoms- honestly I can say no bleeding, no trouble going to the loo or upset tummy- I can now see that the bowel habit is different but not always even now (harder to tell now with a changed diet etc). I've never had chemo before but I did go to virtually all sessions with a friend who had breast cancer, though she seemed to tolerate it quite well. I just wanted to say hello and if anyone has any advice or thoughts on my slightly unusual case I'd be grateful.
Hi KimLondon and a warm welcome to the board. It must be really tough being diagnosed with more cancer after 5 years and I take my hat off to you for dealing with it so well. From memory there’s not been a lot of Krukenberg tumours on here before but if you type it in the search box at the top of the screen then it will bring up previous posts that you can look at. You could also post on the bowel cancer uk page?
Chemo can affect each individual differently but if you let us know which one you’re having then others may pop in with their experience. The support desk is open 7 days a week from 8-8 if you want to chat to someone in person and there’s an Ask the Expert section if you need any advice.
Take care
Karen x
Welcome KimLondon .
Sorry to read about your recent diagnosis but encouraged that you have a good team behind you . That has been a big part of my mum navigating the last 14 years with a stage 4 diagnosis.
Going straight to chemo is such a wise plan but something we appreciate more in hindsight than at the time to be honest but I attribute it to part of my mum’s longevity. She had a significant spread to her liver at diagnosis and no symptoms. Not a one but again being well was a positive going into treatment. She is a robust wee thing .
You can click on my user name to read her story . There has been more treatment in the last year and she has just finished a further ten months but her liver has been clear since 2010 .
Hope that gives you some encouragement as you set out with a good team and lots of support . Are you having any targeted treatment along with chemo ?
Take care ,
Court
Helpline Number 0808 808 0000
Hi Court, Thank you so much for replying and your Mum's story is very inspiring- and you obviously do so much to help people here. I am waiting to hear if I am having targeted treatment as well- they are waiting for some tests back- does that sound right? it's been very fast so the Dr said best to start on the Folfox and they'll add that in if all okay- and I'll wear a pump for 48 hours does that sound right. I had my port fitted this morning so I'm all ready to go! Thank you again and nice to meet you, Kim
That sounds right KimLondon . They will do a test on the biopsy to see if it’s compatible with the likes of Cetuximab. If you look at Star74 you can see how she has used it . If I remember right it was added in as she went along .
But I have read of others doing that . Saves a delay . When my mum started out it was not funded here in Scotland . So she only used chemo with good results .
take care ,
Court
Helpline Number 0808 808 0000
Hi KimLondon and welcome!
I was diagnosed 3 years ago at 46 with spread to the liver. They started me on a combination of 3 chemos called folforinox initially while they waited for the results of the tumour testing. I was a suitable candidate for a targeted therapy called cetuximab which was added to the regime a few cycles in. I did get shrinkage with the chemo alone though.
I went on to have 3 ops and radiotherapy. I'm back on chemo for now but I enjoyed a nice couple of years off it and am hopeful I will again!
Side effects do vary from person to person, it can be quite overwhelming when they go through them with you but you're unlikely to get them all! The main one for me is nausea but since speaking to my team they have given me some stronger anti sickness which has done the trick.
Any side effects you get there will be some lotion or potion for it so make sure you don't suffer and talk to your team, they will be keen to help you and make the ride as easy as possible for you.
All the very best and keep us updated! Here's to some good shrinkage!
Michelle x
Hi KimLondon
It is alot to take it for you right know, but it does sound like you understanding it right. I had a Portocath put in followed by 6 months of chemo. Treatment plans and drug combinations vary dependent on the case, but I had half a day in hospital on IVs, followed by 2 days with a portable IV pump at home and out in public. I was on fortnightly cycles.
Hi Michelle, lovely to meet you and thank you so much for replying (and to Court for putting us in touch). That is very good to hear you had the same regime and you got shrinkage!! I am sorry to hear you're back on chemo but I'm really glad to hear you had some years off. Thank you for the information on the side effects too- I've calmed down a bit about this now and think I will just go with what happens but very good to know they can adjust nausea medications.
I start on Friday so will update you- thanks so much- and good luck to you with your chemo and I hope you are not having too many side effect, All the best Kim x
Hi Crumpets or Toast! I like crumpets and toast! okay so the plan for me sounds similar to you- they did say 3 months then surgery but possibly 6 months then surgery. It sounds like I'd be about half a day in hospital then the pump for 48 hours if I can have the pump. I am also fortnightly. So we sound very similar. Thank you and I hope you're doing well, Kim x
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