CSN Login
Members Online: 11

2 Years NED, but wait for results was awful!

anicca's picture
Posts: 329
Joined: Dec 2010

First, let me say a celebration is planned!

I just had my 2 year check up yesterday, with blood work in the morning before the exam. No CT this time, as I had one in Jan. I've been having terrible gas and a few other GI symptoms, none specific to OVCA, but making me crazy anyway. The doctor and NP seemed to think things looked good. I have always gotten my CA 125 results the same day, late in the afternoon, but yesterday, no phone call! I hardly slept, and this morning around 11, broke down sobbing, thinking they were waiting to call me till plans for further tests/treatments could be made. I finally called them and waited about half an hour for the return call. By the time I got the call, I was ready to melt down again, and nearly started crying on the phone. CA 125 is 11.5. It's been between 12 and 9 since I finished my 6 rounds of chemo in Sept 2010.

Of course, I am thrilled, but I have also already called a GI specialist to get to the bottom of my gas problems. I need to fix it so it doesn't make me think cancer all the time! I have been so stressed that I've gained 10 pounds, and have probably made the GI trouble worse with overeating and eating very fatty foods.

Now for some more good news! I told the NP about my stress and anxiety (which quite surprised her - I put on a good show), and she thinks I'm a perfect fit for a study to treat anxiety in cancer patients with a combination of psychotherapy and psilocybin, a psychedlic drug. As I was quite a pot head in college, this totally cracked me up. The study coordinator called me right away and did the prelim screening on the phone before I even got home. The doctor in charge is calling me Thursday. I really hope I get in, as it will give me someone to vent my worst fears to, since I can't really lay them on my family. Results from similar studies have been excellent, and it's all FREE!

kikz's picture
Posts: 1317
Joined: Jun 2010

you FINALLY got your good news. It is awful to wait. I always have to wait 2 days to get the result and finally decided to just wait the 10 days it takes to come in the mail. I just hated making that phone call. My last result tripled to 23 so I have to have another on June 10th. I am doing okay with the wait; hoping and praying it will go down. If it doesn't there will be a Petscan. I will be freaking out when the June 10th gets closer and for the time it takes to get the result. I am so hoping I am still in remission. I feel really good, no symptoms that I notice.

Have you talked to anyone, like a therapist or support group? I saw a thereapist when I finished treatment but really have been able to manage my fears pretty well on my own. I did attend the support group that went along with the Living Strong/Living Well Program I attended in 2011. As a member of the Y, I can still attend but haven't felt the need to.

I had my last chemo in September of 2010 too. I have felt so good all this time except for some bowel issues which seem to be ususal for all of us.

I hope you get accepted into the anxiety study as I am sure it will help you a lot. I was a young woman in the sixties who never smoked pot or did anything else. When I was in treatment I wondered if a little pot might not help me out!

The best to you and again I am so happy for your continued remission.


PS: I think you and I are on a parallel course. I first felt sick in January of 2010 although my primary had asked me about my hard stomach in October of 2009. I was diagnosed on March 16, 2010, had 3 rounds of chemo, surgery on May 21, 2010, then 6 more rounds of chemo. I hope I continue to be parallel with you and stay in remission.

anicca's picture
Posts: 329
Joined: Dec 2010

I think you've had a harder time of it thus far, Karen, but the timing is very close. It's wonderful that you've been NED all this time also! I did smoke some pot after my first round of chemo, because I wasn't taking the best anti-nausea drug. It really helped a lot, but after I got my legal meds figured out, I didn't need it anymore. I wish they would legalize it already!

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

good for you ... go for it and enjoy!! You deserve it considering your long journey. Kim

lovesanimals's picture
Posts: 1343
Joined: Sep 2011

on finally getting the good news, Anicca! I hope that you get into that study - sounds very interesting and you can't beat free! Please be sure to keep us posted. I myself have been on an anti-depressant for anxiety, panic attacks and mild depression for about five years (June 2007). I was diagnosed with cancer in September 2010 and have been NED since March 2011. I'm so glad I'm on medication; without it, I think my anxiety alone would have been unbearable throughout this cancer journey.

Take care,

anicca's picture
Posts: 329
Joined: Dec 2010

Thank you, Kimberly Sue & Kelly.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network