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Dealing with the unknown

kikz's picture
Posts: 1346
Joined: Jun 2010

I sent an email to my gyn/onc/surgeon today. At my checkup in November I expressed alarm that my count had gone from 3 to 5 and he said anything under 10 was okay. He further stated that even if it went into double digits he would not be too concerned. I wanted to know his thoughts behind that statement since my count is now 23.

He answered my email within 30 minutes which is an indication of the type of person he is. He stated that he agreed with my onc's decision to have another CA 125 in two months (actually 2 months from the last one on 4/10). He said the slight elevation may be nothing or it may be an early sign of recurrence but that treating an early sign of recurrence (CA 125) may be detrimental to me in the long run. He said that treating without any clear sign of recurrence or symptoms tends to lead to problems with chemo in the future and impacting my quality of life now and in the future.

He said that I know I am not in control of what this cancer will do but that he and I and my onc do have some control over managing it. He said that in two months the CA 125 may come down or if I do need chemo it is better to wait for clear evidence of a recurrence or preferably some symptom.

He told me to take care and try not to worry although he realizes how hard that is.

I am starting to calm down now and am trying not to put the cart before the horse or holler before I’m hurt or get ahead of myself. It is hard but I was starting to act like I am already sick, crying, staying in bed, not getting dressed. I had to remind myself I am not feeling sick and won't know if there is a problem for another 7 weeks. I can't waste this precious time feeling sorry for myself and upsetting everyone around me.

Thank you all for your support and love. You are my anchor. Without you I am sure I would lose my mind. I can totally be myself and say what I need to say because I know you understand. I can't always do that with the people around me and have to remind myself that it is difficult for them as well.


mom2greatkids's picture
Posts: 528
Joined: Jun 2011


I'm glad you e-mailed your doctor. I hadn't thought about doing that. I think I'm going to request my drs. e-mail when I go next week. My CA 125 in March was 12. I haven't seen the dr. yet, but I do know a medical oncologist (so is my doctor). She said that 12 was not anything to worry about. She also said that the CA 125 is not reliable for all women. The one prior to the one in March was 7.5. I have been in remission for 8 months now. I an currently on Avaistin for maintenance until the end of this year. (every 3 weeks.)

I go for a CT next Tuesday, petscan next Thursday. And yes, I am already nervous about them. actually I"m taking the Praxis exam (for teacher certification on Sat.) Yes, I'm kind of nervous about it, but not nearly as much as I am these scans and a CA-125. I have control over the exam.

I sometimes feel guilty about posting on here as my side effects have been very minimal in comparison to many of the ladies on here. I'm thankful we have this site to vent and just be who we are. Although we all come from various "walks of life" we all have one common bond and that is fighting this beast!!

Take care and best wishes.


lovesanimals's picture
Posts: 1364
Joined: Sep 2011

It sounds like you have a really good surgeon and onc who are doing their best to calm your fears. I'm hoping and praying that you have good test results in two months. In the meantime, we're here for you anytime!

Take care,

AnneBehymer's picture
Posts: 739
Joined: Jul 2011

My number has slowly gone from 6 to 82 (have not had a ca125 done in 2 months) and my doctor is also waiting for a sing that the cancer is back. It is so hard not to feel like it is back when you don't know I am always on the edge just waiting for the bad news. I had a catscan and on the 8th going for my third try at a petscan then the ca125 on the same day. After that I will know if it is back I can't wait I have tried to not worry but find that I can't. I will be praying for you as I so understand what your are going through.

Hugs, Love, and Prayers

Posts: 1995
Joined: May 2003

We can all tell you not to 'worry', but that's usually easier said than done. But I learned many, many years ago that if you spend your time worrying, you will look back and realize that you wasted precious time living. In scripture, God tells us to 'take no thought for tomorrow, for tomorrow has enough worries of it's own'. How true that is! It's to our benefit to live in the moment. If we look back, we can get depressed; if we look forward, we create anxiety of 'what might be'. So living in the moment is always our best option.

I'm so glad your doctor emailed you back and gave you something to hold on to. So, take hold of that, and what I said earlier. Sending lots of hugs and prayers your way, Karen!



poopergirl14052's picture
Posts: 1185
Joined: Nov 2010

I wish I could e-mail my Doctor. Try to relax ans enjoy each day...I know it is easier said than done. I knew when my cancer came back..wish I didn't.Blessings...val

kikz's picture
Posts: 1346
Joined: Jun 2010

did you know, Val? I am now noticing all kinds of "symptoms" and yet if it is just starting, could I? Or do I even want to know?


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