Sinking feeling

[Carpag]

I have just returned from a routine check up following a CT scan to be told I have nodes in my lower lungs and my CA125 is n the 300's. Since I am feeling well at the moment they have advised it is better to watch and wait before having any further chemo. Has anybody any advice ? My next appointment is not for 4 weeks so it feels really scary. I had OC which was high grade 1c and invasive ,diagnosed in Sept 2015 with major surgery in Oct 2015 followed by 6 rounds of carbo/taxol which ended in March 2016. Any advice really appreciated.

[Katmal-UK]

Hi Any recurrence is scary, in fact I found it almost scarier than the initial diagnosis. The good news is the fact you feel well is good and you've had a good response previously to chemotherapy which would indicate you are platinum sensitive and will probably have carbo again though not necessarily with taxol. I've never been on 'watch and wait' and that's because my oncologist agrees that mentally it would do me more harm than good. Hopefully it will be sometime before you need to re-start chemo, but if you feel you are unable to wait it may be worth speaking with your oncologist and your mental wellbeing is as important as how you feel physically. My CA125 was 65 when I started chemo for my last recurrence. Sending you a big hug xx Kathy xx

[Carpag in reply to Katmal-UK]

Thanks,Kathy.I appreciate your reply and your words are very reassuring. I may ask for an earlier appointment than the one given to me which is for a month's time x x

[chrissapam in reply to Katmal-UK]

agree with Kathy, make sure you communicate xxxx

[greenpink]

Hi,

I appreciate the news of a recurrence is frightening and the feeling of possibly waiting for it to grow feels really scary. Here is my experience this year.

I've been on watch and wait since January '17, when my CA125 was 45 and rising but there was no clear evidence of a relapse on the CT scan.

I'm starting third line chemo in two weeks' time. My CA125 is now 186. My oncologist told me not to get hung up about the CA125 numbers and she doesn't treat numbers but visible evidence on CT scan and where the cancer is etc. I now have a 6 centimeter cyst showing on my sigmoid colon, but no symptoms, but because it could perforate my bowel I need to start treatment. I feel very well. This was my first experience of "watch and wait" and it felt scary in January at first, but I'm personally glad I waited because I've enjoyed my summer and 7 months. I don't think it has done me any harm, because my Oncologst thinks my next regime of GemCarbo 6 cycles should put me back into remission. Hopefully! In September it will be two years since I finished my last chemos and I think the gap has been good for my body to recover.

I've been guided by my team, they would have started me on chemotherapy from April time, with a 9mm thickening showing on my sigmoid colon, if I had wanted to start but were equally happy for me to wait. Now they say it's time to start.

At CA125 of 300 your disease may be expressing a lot of the protein, the level is not really indicative of the size or whether you need to start chemos again straight away. As Kathy says "The good news is the fact you feel well is good and you've had a good response previously to chemotherapy which would indicate you are platinum sensitive and will probably have carbo again though not necessarily with taxol.". I had a good response to Carbo/taxol at both first and second line treatments. I am platinum sensitive, i.e the caroboplatin works for me. I was diagnosed Stage 4 in May 2012 and I am doing relatively well.

Get back to your CNS if you have one and your team if you want to talk things over again soon. Big hugs xx

[Carpag]

Thanks for your kind words. It's really helpful to hear of the experience of others. It was just such a shock to be told the news yesterday but to go home with no actual plan of action. I will take your advice and speak to my CNS today. Wishing you well with your coming chemo treatment

[LittleSan]

Oh my heart goes out to you. The shock of a recurrence is crushing isn't it? It takes a while to become yet another new normal but eventually it does. I'm nearly 3 years post recurrence and doing well.

Much love and strength to you.

Sandra xx