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Beating Bowel Cancer Community

Stage 4 bowel cancer

loobylou

Would like to hear from anyone with similar diagnosis to me.

Has anyone been diagnosed with bowel cancer and a spread to the lung only? I was told this was extremely unusual without lymph node involvement or liver involvement. I’m having my liver checked recently and regularly and was told that the most likely place for recurrence would be the liver. However having lost part of my lung I am scared that it comes back there.

GD62

Hello @loobylou

Sorry to read about your diagnosis, but welcome anyway, see you are from Aberdeen area and someone on the forum with similar issues should give you some advice of their experience. You could do 'ask a nurse' topic area if no success or further info.... Ken fit like,,,

Good luck :x::x::x:

Polly68

Hi @loobyloo and a warm welcome to the forum. I had a right hemi in 2016 and on my 1year scan they found tumours in my lungs and enlarged lymphs in my chest. I had 6 months Folfiri and a PET CT in January that showed all areas still active. I have since had the lymphs biopsied and they are not cancer just inflammatory from the chemo. I am now having surgery on Friday to remove the lung tumours. My surgeon has said that once a section of lung is removed, the remaining lung inflates in to the space left, so on a scan the lung still looks the same. Apparently the lungs are much bigger than the space they are in which is why we can lose some and still function well.
@mem I hope you don't mind my tagging you into this post.
P :x::x::x::x::x:

loobylou

Thank you for your replies. I saw my lungs (on X-ray haha) just after my op and it was a bit lob sided with the right one obviously shorter but by the time I went back 3 months later it had filled the space! I do find uphill and upstairs leave me short of breath especially if I’m talking. I read on here somewhere but I couldn’t find it again that someone was told that if it was in the lung to expect it to show up in the liver later but my consultant didn’t tell me that so it freaked me a bit.

mem

Hi @loobylou and a very warm welcome to you. Thankyou for the tag @Polly68.
Sorry to hear about your diagnosis. I am slightly different to you and Polly68 as I had a solitary liver metastasis prior to my lungs. By all accounts, I do think it is less common for a secondary to go straight to the lungs. I think @Jorton also had 'only' lung secondaries too and he is doing really well.
Reading your profile, I see you have already had a right lobectomy and I am really pleased to read you are doing really well now. To date I have had 5 procedures to remove 8 secondaries on my lungs (2 wedge resections, I Segmentectomy, RFA and microwave ablation) so my lungs look more like Edam cheese than lob-sided 😉. My thoracic surgeon said they will keep on 'chopping' as and when they pop-up for as long as they possibly can. I've also been told you can function just with one lung! I had a full pulmonary test done last year (glass box, mask and gasses )and my lungs are working fine with good oxygen levels. Have you had one yourself after having a lobectomy?
I can’t really answer your liver fear (I'm not sure if this is the case?) but I suppose it is a fear for us all that the cancer may rear its ugly head again. I think you being two years down the line, without a recurrence, is a huge positive and long may that continue! If (big massive if) anything does appear, your team will be on it nice and early which again is only ever a good thing.
Lots of love :x::x:

Bear G

Hi @loobylou
Welcome to the forum.
One thing I’ve found is that we’re all different and there doesn’t seem to be a standard way that bowel cancer affects us.
My diagnosis was similar to yours in that I had secondaries without lymph involvement, but mine were on both liver and lungs (8 in my lungs all 2cm). Luckily chemo sorted them all.
I’m just approaching my 5 year anniversary and whilst I’ve had 2 recurrences they were easily dealt with, the lung met was removed by ablation and you can’t even see the scar!
Hope this helps
Big hugs
Bear
:x::x:

Jorton

Hi @loobylou

As @mem stated above I too have only had a reoccurrence in my lungs (3 separate locations) back in 2015, two years after my original bowel surgery.

I didn't have any node infection and good margins so after bowel surgery in 2013 no chemo was necessary.

I recall reading at the time that the reoccurrence site is to do with the location of the tumour eg left or right side of the colon.

:x::x:

kim74

Hi @loobylou I have lung mets and a clear liver I also have had a lung resection and have had RFA I am now back on chemo as they keep popping up on the lungs I am hoping that the chemo will work if not I will probably look at more surgery, there are options I find that I have to keep on top of it all the time I am doing well after two years so long may It continue.
Best wishes
Kim :x::x:

charleyb

My hubby is lung only @loobyloo, but his was rectal not bowel. His is even more rare as it was a solitary met, and was synchronous, i.e the same size as the rectal tumour, at about 5cms. We`ve never been told to expect it in the liver, being stage 4 he has a chance of a recurrence anywhere, but there are plenty of stage 4s smashing the odds and beating all those silly stats!! :x::x::x::x:

loobylou

Thank everyone for that it is weird isn’t it that everyone’s experience is so different even in hospital everyone had differences perhaps that’s why it’s so hard to treat! That’s interesting about it depends on which side the tumour is in for the spread not heard that before but mine was a left sided tumour and a spread to the right lung. I had a lung function test done the day of my operation but not since. Most of the time I don’t really notice it until I go up hills or a lot of stairs but then I could do with being a lot fitter generally! I probably could never dive for oysters or become an opera singer either but neither was really on the cards before then! Mem you have been through the wars 8 procedures my goodness one lobectomy was enough for me. My surgeon at the time said he could just take my two tumours out and go back in again if necessary but I asked him to be really on the safe side and to do whatever he thought was the safest as I have a teenage daughter who I need to see grow up. So he took the whole lobe with clear margins so that was really good. But it had made its way into 1 lymph node which I was told wasn’t possible as a secondary so I don’t really understand how it got there. Thanks for all your lovely comments it’s nice to talk to people who understand how we live with the fear ALL the time but function like normal humans the most if the time :x::x::x::x:

angepange

Check out @Gypsy profile. :x::x:

John2628

Hello @loobylou and welcome from me to this wonderful forum and font of amazing knowledge from truly wonderful people who never fail to answer my questions and give balanced opinions whenever needed.
My cancer after being in remission for almost three years metastasised to my lung in the form of three nodules. Bypassing my liver completely as yours has done. My oncologist made the point that this was unusual. I have recently completed a course of cyber knife treatment to eradicate what was left of the nodules after the Folfiri and Cetuximab did their work first. I hope this helps you and I wish you well on your journey. :x::x::x:

Gypsy

I don't qualify @angepange as had it in liver as well.

angepange

Sorry, wrong tag!:x:

helena

Hello @loobylou and welcome to this wonderful forum. I've just read your profile and our diagnosis both seem very similar so if I can help in any way then I am more than happy to. My original op was in April 2015, followed by 6 rounds of chemo. I had a spread to my lung in 2016 and the little blighter was removed by keyhole surgery in Glasgow in January 2017. Since then I have had scans every three months which has shown no signs of recurrence and I meet with my oncologist on 23rd March to get the results of my latest scan. It's a rollercoaster ride all the way with its ups and downs and I tend to ignore all the stats as I feel we're all different. If anyone had told me there years ago that I would be quite relaxed about being a Stage 4er then I wouldn't have believed them, but I take inspiration from all the others on here who have been through similar scenarios. I see that you're in Aberdeen which is where I went for my two CT scans but I went to Glasgow for surgery. I haven't had spread to my liver but this area gets scanned so if there ever is spread to there then it'll get caught nice and early so I keep that in mind. If you have any questions then please just shout. Kindest regards, Helena :x::x: