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Life with bowel cancer

joval

New to forum....nodule question

Hi, everyone. ..I have just had my 18 month follow up ct...the consultant said it was abnormal. ....one nodule on liver one on lung....I believe he called them solitary sorry for being a bit confusd. .....they have forwarded my for a pet scan...my goodness I think I asked if he thought they were mets I believe he said yes....I'm so sorry for sounding silly I just wish I had the meeting again as my head is a bit clearer. ....maybe someone could offer some advise etc.
Thank you joval.....

GD1962

Hello @joval

Sorry to hear your news.

I had two nodules in my peritoneum and liver on first diagnosis, which the surgeon said were at the earlier stages of a full blown spread which were two reasons they were considering me for CRS and HIPEC surgery. So mets yes but probably at the beginning stage.

Why don't you contact the nurse advisors at the charity and leave a message and or contact your colo-rectal nurse at the hospital they will get back to you.

I'm certain they will have a follow up treatment plan and chemotherapy could be helpful.

Hugs and prayers :x::x::x:

Baxter2

Hi @joval and a very warm welcome to the forum! I'm sure you'll find lots of information, support and friendship on here! I'm sorry you have been given news that you perhaps didn't completely absorb at the time. These appointments can be so difficult and I'm very guilty of not "hearing" exactly what was said. Did you take another person with you and if not, I'd definitely suggest you do for your next consultation. They can act as an extra pair of ears and take notes as well. In the meantime, why not write down the questions you have and as @GD1962 suggests, give your specialist nurse a call and the nurses on the BBC site to help clarify things. Sending all my very best wishes, K 💜💛💚💙❤️

mem

Hi @joval and a warm welcome to the forum from me too.
I'm sorry to read your news and you certainly don't sound silly. Terminology etc, can be very confusing and it doesn't necessarily sink in at the time, especially when its new and unexpected information. It's not until we get home when we 'try' to dissect the whole conversation. I've done this on many occasions.
Your follow up appointment after you've had your PET scan will hopefully provide you with a clearer understanding of your diagnosis and remember, there is very positive treatment out there for metastatic bowel cancer if this is the case. You're certainly not on your own on here where you will find an abundance of love, support and understanding.
Good luck with your PET scan next week. Lots of love :x::x:

joval

Goodness...great support...THANK YOU all so much. ...I do realise consultants seldom give false hopes etc...my scan is being booked in Dublin. .even though I live in Belfast area😕
Thank s again .

Gypsy

Hi Joval, I have re-joined the forum after a long absence (although I still read it) because I hope that my story may be of help to you since, at first glance, your situation seems to be very similar to mine. I hope that by reading it, you may gain some hope for yourself in the scary confusion in which you find yourself right now.
I was diagnosed with rectal cancer in 2011, aged 59 and through the bowel screening programme. I had a small early tumour with nothing in lymph nodes or organs and this was removed with no need for chemotherapy. At the time, my team were pretty confident that I would have 'no further trouble'! A year later, in the spring of 2012, the first annual check up CT scan showed 'something' in my lung which, after biopsy, proved to be a secondary bowel cancer tumour. I was then sent for a PET scan which revealed a tumour in my liver as well, but thankfully nothing elsewhere. I was very very fortunate as both were operable and at the end of July 2012, the liver tumour was removed by keyhole surgery and then the lung one, by open surgery 3 and a half weeks later. I am fortunate in having been very physically fit and able to have the two operations in quick succession. After about 2 months once everything had healed, I had 6 months of first line bowel cancer chemotherapy (oxaliplatin and cap tablets) which took me to the end of March 2013. I was then put onto a follow up regime of scans every 6 months and I have to say, I thought and believed that recurrence was inevitable, as did pretty much everyone else medical with whom I came into contact. Despite that, my treatment was always described as 'curative' but I believed that just meant curing what they could see and what was there. The only person who gave me a glimmer of hope was my liver surgeon. He said that in patients with a single removable tumour in liver and lung, there was a one in six chance that the cancer would not come back in 5 years and that one could still be clear in 5 years. He told me that he had one patient on Skye (I'm in the Scottish Highlands) who was in that position. I did not dare to think that I could ever be a second one- but I have been. 5 years and some months on, my cancer has not recurred and I am extremely fit and well. Last Christmas, I was put onto annual scans after completing 3 years on 6 monthly ones so my next one will be in December this year. If this one is still clear, then I go onto a scan in 2 years time and then a further and final one after another 2 years. The protocol adhered to where I am is follow up for 9 years due to the liver secondary, dating from the time it was discovered so 2012 in my case and at the end of that time, if still clear, I can consider myself to be 'post cancer'.
I truly hope that this gives you some encouragement. I will pray hard that your tumours are operable and if they are, that you will gain a bit of comfort and hope. It is all do-able physically and no one could have been more wrecked mentally than me back in 2012. But I somehow came through and am utterly and humbly grateful for the treatment I have received and the chance I have been given and I try to help others and to make the most of every moment I've been granted,( like everybody else who posts on this forum).
I am in awe of everyone on here and my thoughts are with all, even though I don't now post on it. But you, Joval, have driven me out of the woodwork, so to speak as don't think that anyone else has ever sounded to be so much in the same boat! I really hope it helps.
God Bless you; you have all my thoughts and prayers and I sincerely wish you all the best as you tiptoe through the minefield. Same to all others too.
Love Gypsyx

joval
Quote from @Gypsy:
Hi Joval, I have re-joined the forum after a long absence (although I still read it) because I hope that my story may be of help to you since, at first glance, your situation seems to be very similar to mine. I hope that by reading it, you may gain some hope for yourself in the scary confusion in which you find yourself right now.
I was diagnosed with rectal cancer in 2011, aged 59 and through the bowel screening programme. I had a small early tumour with nothing in lymph nodes or organs and this was removed with no need for chemotherapy. At the time, my team were pretty confident that I would have 'no further trouble'! A year later, in the spring of 2012, the first annual check up CT scan showed 'something' in my lung which, after biopsy, proved to be a secondary bowel cancer tumour. I was then sent for a PET scan which revealed a tumour in my liver as well, but thankfully nothing elsewhere. I was very very fortunate as both were operable and at the end of July 2012, the liver tumour was removed by keyhole surgery and then the lung one, by open surgery 3 and a half weeks later. I am fortunate in having been very physically fit and able to have the two operations in quick succession. After about 2 months once everything had healed, I had 6 months of first line bowel cancer chemotherapy (oxaliplatin and cap tablets) which took me to the end of March 2013. I was then put onto a follow up regime of scans every 6 months and I have to say, I thought and believed that recurrence was inevitable, as did pretty much everyone else medical with whom I came into contact. Despite that, my treatment was always described as 'curative' but I believed that just meant curing what they could see and what was there. The only person who gave me a glimmer of hope was my liver surgeon. He said that in patients with a single removable tumour in liver and lung, there was a one in six chance that the cancer would not come back in 5 years and that one could still be clear in 5 years. He told me that he had one patient on Skye (I'm in the Scottish Highlands) who was in that position. I did not dare to think that I could ever be a second one- but I have been. 5 years and some months on, my cancer has not recurred and I am extremely fit and well. Last Christmas, I was put onto annual scans after completing 3 years on 6 monthly ones so my next one will be in December this year. If this one is still clear, then I go onto a scan in 2 years time and then a further and final one after another 2 years. The protocol adhered to where I am is follow up for 9 years due to the liver secondary, dating from the time it was discovered so 2012 in my case and at the end of that time, if still clear, I can consider myself to be 'post cancer'.
I truly hope that this gives you some encouragement. I will pray hard that your tumours are operable and if they are, that you will gain a bit of comfort and hope. It is all do-able physically and no one could have been more wrecked mentally than me back in 2012. But I somehow came through and am utterly and humbly grateful for the treatment I have received and the chance I have been given and I try to help others and to make the most of every moment I've been granted,( like everybody else who posts on this forum).
I am in awe of everyone on here and my thoughts are with all, even though I don't now post on it. But you, Joval, have driven me out of the woodwork, so to speak as don't think that anyone else has ever sounded to be so much in the same boat! I really hope it helps.
God Bless you; you have all my thoughts and prayers and I sincerely wish you all the best as you tiptoe through the minefield. Same to all others too.
Love Gypsyx

Hello gypsy,

I want to thank you so much for taking the time to tell me about your life with your cancer
I am so humbled! !!!.... I will let you know my results when I get my pet scan..if that ok with you.
Many thanks jo

DianeS

Hi @joval welcome to our lovely forum, and I'm glad you have found us as I'm sure it will be of great help To you in many ways, especially for support. I had my bowel resection in July 2015 and did 12 cycles of Folfox which ended in March 2016. I had a single liver nodule discovered in August that year and had radio frequency ablation, which was completely painless. I have had no further treatment and although I have 3 monthly PET scans, and blood tests every 6 weeks I'm so happy to say no further evidence of disease. I'm praying the next year is the same and I get to 2 years NED. Will then go onto 6 monthly scans. It's lovely to hear how well @Gypsy has done and it's such encouragement. Wishing you all the very best love Diane :x::x::x::x::x::x:

CD1966

What an excellent update @Gypsy and one which will really buoy up so many people on here!