PET & CEA results scare

[Rachel_R]

Hi all, this is my first post here. I was diagnosed with bowel cancer 2.5 years ago. When they found it the situation was very serious, it had spread from my bowel to my ovary (very strange, never heard of before for it to do this) But I had the whole lot taken out and did 6 months of hardcore chemo (oxyplatin, avastin, 5FU) and then did another 12 months of “maintence chemo” – the same chemo but without the oxyplatin. Ive been clear ever since I had the operation, I get scanned every three months and have regular CEA markers. I finished treatment 10 months ago, I’d been clear all this time and it qas felt that there was no reason to continue treatment. I was thrilled. It was a happy time. I’d re-written the record books and been pulled back from the brink. I sought a second opinion from a highly regarded oncologist who suggested alternating between a CT and PET scan – I had only had CT’s up until then and didn’t know anything about PET scans. My oncologist warned me that PET scans often pick up things which are actually nothing and it can be very distressing. Ive been worrying about since I agreed to start doing PET scans. I had a PET scan and unfortantely said that there was a tiny “spot”” on my liver shown up on the PET. Bottom feel out of my world. My CEA marker has also gone from 0.9 to 4. Ive been trying to break this down into manageable chunks, but Im just so scared and unhappy and I need some help. I have a 4 year old and its breaking my heart. I’m being sent for an MRi to have a better look at it. My oncologist said if it was "hot" then it would be surgery without a doubt to remove it. Apparently these are "not uncommon" Sometimes I think it doesn’t sound too bad – I mean it’s a sensitive scan and the markers are only at 4 – the “normal” range is up to 35 apparently. But I’m just so so scared. Can anyone help me?

[marcusknapp]

Hi Rachel, I understand how you would be scared. I had a similar experience to you. Had a bowel resection in 2010 and was told no need for chemo. In October last year after getting a CEA by GP I was told level was 255 and I had multiple tumors in Liver and "Salt and Pepper" mets in my lungs. Thankfully after going though FolFox and Avastin all my tumors have disappeared and CEA at 2.5. I was able to have an operation on my liver and had 1/2 taken out. For me the operation was nowhere as bad as my bowel operation. I was home 6 days after operation. Good thing about liver is that it grows back to normal between 6-8 weeks after operation I know it is scary - I have a 7 and 10 year old - but if it turns out to be "hot" at least you seem to have caught it early. You beat it once there is no reason why you can't do it again

[Rachel_R]

Hello Marcus, Thankyou so so much. Its scan day and I spent the night having terrible dreams. Youe email has been a shinning light this morning. Thankyou. Xxx

[marcusknapp]

Rachel, Hope it goes well. Happy to talk if you need to Marcus

[Rachel_R]

Hi Marcus, I know its been sometime but I thought an update was worthy. Your email gave me a lot of comfort. I had a liver resection and it turns out they think that tiny spot had been there all along. for years in fact. My oncologist said I am still very curable, something I never expected anyone to say again! Im having a light dose of chemo every two weeks for 6 moths. And thats it! :)

[Adele]

What fantastic news Rachel,You should investigate the use of some complementary medicine as well- not sure where you live but you can send me a message and I will tell you who I use. Keep remembering that your thoughts can have an enormous influence on your health so keep seeing yourself as whole and healthy. Good luck!