What to believe

[nunnilove]

Hello dear ladies

I’m Lone from Denmark and I’m so thankful for being af part of this community. I have just finished my calyx and carboplatin treatment after my first recurrence. I had a ct scan last week and today my oncologist called me and said that they were not satisfied with the result from the radiologist who means there is a progression - and on the conference there were 2 oncologists and 2 pathologists who mean its not cancer but colonproblems. Now I’m going to ultrasound and biopsy after Christmas. All my blood tests are normal and my CA 15. But now I’m scared and don’t know what to believe. Have any of you experienced the same and what do you think: Shall I believe the radiologist or the 4 other experts?

Hope to hear from you. Merry Christmas and lots of warm regards.

[candyapplegrey]

Hi Lone. Sorry to hear the chemo hasn't been totally successful. It sounds like the medics are not communicating very clearly. That often seems to be the case. My sister's second recurrence took the form of a lesion on the liver. They just wanted to do another big operation and more chemo, carbo and caelyx. She'd already had ops for original cancer and first recurrence so didn't want another. Also she'd learnt the second lot of chemo could be a bit hit and miss. But her oncologist in the end agreed to targeted radiotherapy, which she has now had. (We don't know results yet.) I don't know if this might be an option for you if it's in colon. Otherwise she is taking not yet officially repurposed drugs shown to work against cancer. If you want to know about these, she can message you. All the best for a less confused and anxious Christmas ... xx

[lesleysage]

Hello Lone, this does sound confusing. When faced with uncertainty during my treatments, I found writing any questions which came into my mind on a sheet of paper, helped me to talk with the clincians in a way which reduced my cnfusion and uncertainy. Because my mind would often think of questions in the middle of the night, I kept paper and pen by the bed as well. ...otherwise I could have forgotten the question by the morning!

I hope this helps. Warm wishes and hopefully, you will find joy over the festive season.

[SopSinger]

Sorry to hear this news, it's not very encouraging. However, try to reserve judgement on who to believe - they may surprise you! If it DOES turn out that you have cancer growth in the colon, please ask for testing for Lynch syndrome (this is an inherited susceptibility to a number of different cancers, of which colorectal and endometrial are the most common, but ovarian is also related). If you test positive, it may open doors to different types of treatment, such as immunotherapy which is being shown to be more effective than chemo for several of the Lynch-related cancers.