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How do you handle the waiting without fear?

joannstar
Posts: 347
Joined: Nov 2010

I guess I need some advice from you all...
After dx in 7/10 of Stage 1C IDC, Triple negative, med grade I had 2 lumpectomies (to get clear margins). I've made it through 6 rounds of chemo but my tumor markers were going up instead of down (31-8/25/10, 36-1/7/11 & 41-1/25/11). My doctor didn't like the upward trend, so I had a PET scan on 2/1 and it was CLEAR. He wanted a bone scan but when the PET came back clear, my onc oked me for 33 radiation treatment of which I have had 5 so far.
Came into work today after treatment, going about my business when my onc's office called and said he wants another blood test (read as tumor marker test) before 3/3. So I've scheduled it for 3/2 and I am petrified that my markers will still be going up and there will have to be more testing and waiting. My onc only calls with bad news (and usually after 7pm) so last time I was totally panicked when I heard his voice. Now I find I've lost my appetite (a rarity I can assure you) and I am actually terrified of what will be found. Due to scheduling issues, I can fit the test in any earlier and my husband says that worrying is pointless and to be calm, but I can't seem to get over the fear. If I wasn't at work, I'd drug myself with either valium or xanax, but that's tough to do and maintain.
How do you get through all the tests and waiting??
Thanks for your input.
JoAnn

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

JoAnn, so sorry you are going through this, and of course you're going to have fear, fear of the unknown can engulf us. My best advice to you, and this is only what works for me, but I thought I'd offer it, and it's easier said than done but try it. The outcome of the tests will be the same whether you worry about it or not, so for me, I try to tell myself to stay in today and not let what the future holds take today away from me. I know, easier said than done, however; we all only have today, cancer or not, it's all we have :) So please dear sister, try and relax, go to a happy place, and hopefully soon you'll find you had nothing to fear at all. Another thing I'd like to add, and this is just my experience, my tumor markers don't reveal a thing, when my cancer came back in my bones, the markers were low and my oncologist said tumor markers can send her on a wild goose chase so she doesn't like to use them all the time. I'm also triple negative so I know your fears, and calming them can be a constant battle. You are in my prayers (praying you come back with good news) and please let us know what you find out.
Miles of Love and Big Cyber Hugs,
~Kari

MAJW
Posts: 2515
Joined: May 2009

My oncologist, radiation oncologist and surgeon, all three said even though they do this testing, they don't trust it...to many FALSE-Positives and vice versa. As a Matter of fact in all of my visits, never once have I been told what my numbers are...all my blood work comes back "just fine" according to my oncologist..
I, too, am triple negative...we all understand the torment of waiting......I have no advice on how to alleviate the fear of waiting....
Wishing you better days!

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

Yes, as your husband says, worrying is pointless. But it is unavoidable. I do not know....have never met, anyone who does not worry about tests (well, maybe one or two sisters on here), especially when there seems to be an issue.

I have often wondered how we are supposed to live in constant fear. Get on with our lives, go about our days, but juggle bouts of terror too. I sure wish I had the answer. I don't. But I wanted you to know that you are not alone.

I am going to keep you in my thoughts and prayers (don't panic...I keep people whom I like in my prayers..lol) and keep fingers and toes crossed that your markers are on the way down.

Hugs,
CR

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I wish we could avoid ever having to wait, but unfortunately, we can't. Praying for you!

Hugs, Kylez

disneyfan2008
Posts: 5334
Joined: Oct 2010

I am one of the few who don't ever worry... an oddity I KNOW...and I DO NOT know why!

recently waiting for D & C results (due to tamoxifen) just prior to Christmas-never really thought of it..(told results after New years) I got a call day prior to holiday & nurse said I DINT" Want to you to worry the whole time...

very nice/ considerate of her to call me...

Denise W.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

My oncologist doesn't even do tumor markers unless he's dealing with mets. He said it was because the test is not reliable, and only provides minimal help with the mets.

I'm triple neg, and IBC. I think we've all had to deal with this fear one way or another. I really try not to think about all the 'what if's' that come with this. I try and look at it like driving...when I'm on the road there is a good chance I could be in an accident at any moment, so I stay alert and watch what's happening around me right now. I can't see what's around the bend, but none of that stops me from driving. For me, cancer is like that, it's good to prepared for what might be around the bend (be well informed), but assume the road will be clear so that I can keep going.

Maintaining that balance isn't easy, and I do find myself down or terrified. That's when I pull over for a little while and do what works for me to regenerate. For me, it's good music and the elliptical.

I wish you peace and patience.

Hugs,

Linda

joannstar
Posts: 347
Joined: Nov 2010

for your suggestions and comments.
I'm going to practice living my life and focusing on the good things (of which there are plenty).
Patience isn't my strong suit, but I guess that I'll get lots of practice improving.
Hugs,
JoAnn

lynn1950's picture
lynn1950
Posts: 2572
Joined: Jun 2008

Thank you for the wonderful driving analogy. I will carry it with me. xoxoxox Lynn

bunya
Posts: 11
Joined: Feb 2011

It's very scary when we don't have control of things in our life. Realizing that our lives are already pre-destined and controlled by God is very peaceful and soothing..especially knowing we don't NEED to do all of the work involved in controlling.We are all on earth for a purpose..and in the process we learn and grow and become strong. Ask God to help you trust that everything you are going through is going through Him first and because of that...everything will be ok. It's so hard to give up control..it's like swimming constantly against the flow of a raging river. Let God be your soft raft in a calm stream that moves softly with the flow. I also am being evaluated regularly for Invasive breast cancer w/matastises to my lymph nodes. I've learned that life on earth is short but eternity is forever. Much love to you during this difficult time.

joannstar
Posts: 347
Joined: Nov 2010

Thank you for your comment...it is very "centering" and I did feel a sense of relief just reading what you wrote.
JoAnn

Findingout
Posts: 132
Joined: Dec 2010

Seems like so many people find their own ways to get on with daily life. I agree about trying to focus on the here and now as much as possible. I keep lots of activities available that I enjoy, and when I get inactive is when the negative thoughts are more likely to creep in.

One particular night after I was diagnosed was the worst; I'm not sure I ever felt that kind of fear. I started praying and thanking God for all that I do have. I made the prayer positive, grateful, full of faith, rather than pleading for help (which I have also done). This positive prayer took me into an entirely different place. It was so amazing I think it has stuck with me and I know I'll need it again during chemo, which I'm approaching.

Otherwise I focus on reading, house stuff, meals, food shopping, art work, just trying to keep myself in a "nice" place. Your environment is a big factor too. I wish you all the best. Remember you do have control of your thoughts.
hugs,
Lin

sea60's picture
sea60
Posts: 2601
Joined: May 2010

Waiting is always hard. What helps me is Scripture...it gives me comfort, especially during that dreadful "waiting" time. It helps me to focus on His promise that He'll be with me through it all. You're in my thoughts & prayers!

Hugs,

Sylvia

VickiSam's picture
VickiSam
Posts: 8253
Joined: Aug 2009

breast cancer, I forget to find solace in his word. Thank you for keeping me on the straight and narrow ...

I just have hope that there is a higher being out there, taking care of me and watching me.

Vicki Sam

roseann4
Posts: 994
Joined: Sep 2009

I'll never forget how difficult it was to wait for results. I am down to one mammo a year now and it still fills me with anxiety. I have found that meditation tapes really helped me to relax so at least I could sleep. I would use ear buds and listen to them as I fell asleep at night. Then, I would carry them with me and find a quiet place to listen to them during the day. Surrender....easier said than done. I think it is important to find a method for controlling the fear because breast cancer survivors are tested and tested for many years and the fear can become unbearable. Hugs.

Roseann

disneyfan2008
Posts: 5334
Joined: Oct 2010

Joanne: I am odd duck out- as I call myself...

I can honestly say I don't worry about blood, mammo, D & C etc. (annual colonscopy 19 yrs looking for cancer) I have not once worried. I think I am the odd/ strange one-like I should get my head examined!

SO I can't tell you how I do it! I just do...I wish to send you some good vibes your way...!

(even when called back for the stand out call "we need you to come back to do another mammo-TOMORROW!" I was still calm and not worried (and it was BC)

I wish you peace while waiting..

Denise W

CR1954's picture
CR1954
Posts: 1392
Joined: Jul 2008

You should hang out with me! I am a constant worrier! We would compliment each other beautifully! LOL! And you could work on keeping me calm!

CR

disneyfan2008
Posts: 5334
Joined: Oct 2010

MY MOM was the worst of worst in worrying department...! So I am the flip side..

(due to tamoxfien I have thickening of uterus (within first 6mths) so now I go every 6mths for ultrasound followed by D & C ! I just wait until Dr calls me...dont' really think about results...

I really think there is something wrong with me...that I DON"T worry...! Feel free to send me messages if you want...

I had always been very insecure as child/ young adult but always strong! Independent-I know that has nothing to do with worry...

I just feel can't change out come and go with it..we would compliment each other!

For 19 yrs I have had colonscopy looking for cancer-yet never thought once suppose I have it.
(going next week for next one grrr) I have bad veins and can only use one arm for BP / blood etc..not looking foward to it..

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