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kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

I just got my latest CA 125 result and it is 23. The last one was 8 and before that 5. Up until then it had always decreased or stayed the same. I am scared out of my wits. I know less than 35 is considered within range but that is not keeping me from freaking out. I left word for my oncologist to call me.

I have been in remission for 18 months. I have been upbeat about everything but always in the back of my mind is the concern of recurrence. My onc/surgeon said if it never comes back you are cured but if it comes back once it is treatable.

I feel like I have been holding my breath for 18 months. I feel great and am trying to eat healthy and exercise. But in the back of my mind is always the fact that if it comes back it will kill me.

I apologize to all of you who are in the thick of it. But I am sure you will all understand the terror I feel at the prospect of recurrence. Right now I can't stop crying. So many thoughts are going through my mind. I don't want to overreact but this is all such a crap shoot.

I know the doctor will just try to reassure me as they have before but it will be much more difficult for me to relax with this number. I thought I had read on here that if it is a recurrence, the number would shoot way up but why is it trending upward?

I thank you as always for your support.

Karen

undertreatment2012
Posts: 126
Joined: Mar 2012

Do not apologize here for being scared. This is where we all share our fears. First question. Is the Onc going to do some studies? any imaging? How long ago was your last imaging studies? I am no expert and just was diagnosed Feb 29th, BUT I would be scared too. Any increase in the CA-125 I would think would not indicate a positive.
And secondly, you are not alone. I too feel like I am going crazy when, I know, with my cancer, type and grade so forth, that it will probably come back. And on those days it hits me I am a mess just like you are today. My numbers are going down, but I don't think enough. And everyone says Oh, that's great!. But I don't think so. Do you know if the number can climb a little bit and then go back down? I don't know the answer to that. If so, maybe that is just what is going on. Next check it may be way back down again. I wish I knew more what to say. Only that believe me when I say that staying positive and having this disease just don't seem to go hand in hand. It's hard, it's terrifying and those thoughts are hard to get out of your head. I am hugging you right now. I feel so bad for you. Let me know about the Onc's plans for you given this increased number. xxxxoxoxoxo

VictoriaSF
Posts: 165
Joined: Dec 2010

hi Karen! you do not have to apologize - we are all in the same shoes... i think it does not matter if you are in remission or in treatment - we always have some kind of worry on the back of our mind. You increase in CA125 does not mean that cancer is back - it can be up due to any inflamation or infection in the body , like for example UTI, even when women are pregnant their CA125 is up ( i know it is not a case in us )
when is your next appt with oncologist and when is you scan?
i know many cases when CA125 was normal but scan showed cancer and other way around.
Please try to stay positive . You are not alone, we are here to support you.
I am sending prayer and good vibes. Please keep us posted.
Victoria

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Karen,
We all hope it is nothing, but if I was in your shoes, I would insist on a CT or PET scan. Living with the realization that a recurrance could always happen is not something that is easy to come to terms with. But not long after I was declared NED, I had a heart to heart talk with myself. I realized I can either waste time worrying about it, or just enjoy the moment. The biggest waste would be to have 2 years, 5 years, or 10 years, and spend it worrying about a recurrance. Just my personal conclusion. I try as much as possible to enjoy every possible minute and let tomorrow's issues wait until tomorrow. I have seen a number of women post on another board who had one single recurrance but who are 20 year survivors. So, I don't believe that if you have a recurrance, it means it cannot be cured. If possible, don't panic, and just see what lies on the horizon.
Hoping it is nothing,
Kate

debrajo's picture
debrajo
Posts: 768
Joined: Sep 2011

I agree with Victoria, any little thing in your WHOLE body could make the numbers go up. We almost all live by that ca125 and it is not good. Like you, I am a basket case with every checkup. They quoated me a ca125 once that was so bad I nearly fainted...till the told me they forgot to tell me they had changed labs and charts! you do need to be aware of the trend that it is rising and demand a scan ASAP for your peace of mind if nothing else. Get with you onc nurse..they tend to get things done faster and look at us as fellow humans instead of a chart. We'll all be praying for you, try to calm down, and don't jump the gun on this and make your self sick. Best Debrajo

poopergirl14052's picture
poopergirl14052
Posts: 1155
Joined: Nov 2010

my number crept up and doubled..that is when my Dr. ordered Ct/pet scan...It had returned. I pray this is not the case for you as you have been Ned for so long. Keep thinking posative and maybe your numbers a a fluke...val

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

my oncologist and she is concerned because she feels my nadir is around 7-8. But she said it would be too early to see anything so I will have another CA 125 in two months and if it doesn't go back down or rises, she will order a petscan.

I told her it will be a long two months and she said she understood.

I will probably go nuts before then.

Thanks again ladies, your words mean everything to me, because only you really understand.

Karen

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Karen,
I don't know if you would consider working with a naturopath. I do. I know a woman whose CA-125 was at 51 last summer, at the end of her fourth chemo in 9 years. She was doing a lot of integrative stuff anyway, but started Iscador (mistletoe) injections in October at 51, and now her CA-125 is 13. Seems to be working for her and her CT scan is clear.

zinaida's picture
zinaida
Posts: 220
Joined: Oct 2007

Dear Karen! I am sorry you are feeling so much under pressure. In same situation we all do like you. But... It is not in ours power to change cancer nature yet. All we can do it is fight, fight and fight. You have at least two month (may be much more) without chemo. Please rejoice this time, it is spring and summer come in up. It is so nice outside. Live it in full. Love you, Zina. :)

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

I too am praying and hoping that the rise in your CA 125 is a fluke. I know that the two month wait for your scan is going to feel like torture but you can do it!! And we're here for you anytime you need a shoulder to cry on or someone to just listen. Sending you big, big hugs!

Kelly

debrajo's picture
debrajo
Posts: 768
Joined: Sep 2011

Do you trust your dr.? Mine told me the same thing. I told her if she wanted to wait, fine, but my nerves can't. Can your MD order a ca125? Can you pay out of pocket for it? Just a suggestion, but if you are that stressed and upset then try another tactic. Another test now may not show anything within the next two months, and may stress you out more if it is up. Bottom line, do what your heart and body tell you to do...pray about what you really need and be at peace. Best, Debrajo

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

The waiting game for us is always difficult. But, remember, there is other reasons for elevated CA125. Remember rest, fluids, relaxation, and good healthy food. Those are the things you have control over!!! Kim

srwruns's picture
srwruns
Posts: 343
Joined: Oct 2010

So sorry to hear this. I hear you about the tough waiting.

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

Operation don't freak out is in effect! I know your going to worry but just remember the added stress is not good and drwaking out will not change anything. You want to be head strong for whatever lies ahead. I am hoping for clear sky's and scans. Remember to smile. Two months is a long time, but don't waste it.

jbeans888's picture
jbeans888
Posts: 313
Joined: Mar 2011

I meant and freaking out will not change anything. Sorry for the typo

kayandok
Posts: 1223
Joined: Jun 2008

congratulations on your 18 month remission! That is awesome!

First, there is a possibility that this is something else. I hope that is your reality. Will your doc do a scan for you?

I recurred after 8 months, and it crept up initially, then doubled up suddenly. Recurrence was confirmed by the number and a scan. I think my recurrence was scarrier than the initial dx. It jsut hits hard. I feel for you!

My good news is that treatments have worked some how and I will be celebrating 5 years in June. Had to pull myself up many times, out of the ashes, and go find my BIG girl pants.

There is so much hope for you! YOur initial treatment gave you 18 months, so if you need to do it again, it definitely will work again!

Hugs,
katheen

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

for all your words of support and encouragement. I am going to bed. I feel really tired. I cried a lot today and I feel drained. I will try very hard not to jump the gun and continue to enjoy my life as it is now. I feel great and that will not change overnight. If this turns out to be a recurrence, I will put my fighting gear on again.

I think I will need to lick my wounds for a couple of days and then try to put it all in perspective. I don't want to waste this good time worrying about something that may not happen and if it does happen all the worrying in the world won't change it.

My son and my mom have steered clear of me since I told them. I know it is hard for them but geez, a little love and support would feel good about now.

Good night dear friends. I am blessed to have you all to lean on.

Karen

paris11
Posts: 132
Joined: Oct 2010

Hi Karen,

I am so, so sorry for your anxiety and fear. You can do this. I agree with all comments. And already you are moving thru the angst.

You Mom and Son will come around. Many of us are living with a chronic illness. That's just the way it is. Try and use the next two months to exercise, meditate, and gear up for the fight.

Chemo is a challenge, but, we are the strongest and the best.

Rest and then show them what COURAGE is.

I am 5 years out - I have had 2 recurrences - today, I have yoga and the sun is shining.

Regards, Connie

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

My son thinks I get ahead of myself which I do so he gets a little frustrated with me. My mom who acts as if she is tough is really unable to deal with emotional situations. I, who tend to be very emotional have shown myself to have real strength. I think sometimes people are surprised by that because I am shy and usually don't speak out. I believe it is because I choose my battles.

Funny you should mention it but I have yoga today as well. I was thinking of skipping it today. Once when I was going through a difficult time, I became very emotional at yoga and the tears flowed. I thought I might have to leave because I felt like I might start sobbing. I stayed and when I shared this with my teacher, she said you let go of a lot of stress. It's just that I pick up my cousin who was with me through my treatment and today I feel like as soon as I see her I will break down.

Thank you again and I know that even if it is back it is not the end. I can fight again. It's just hard to deal with the possibility because if it is back that ends the hope that it would never come back.

Thanks again for your words of support and love. It meant alot to wake up and read your message.

Karen

davevg
Posts: 114
Joined: May 2011

Just wanted to send prayers and well wishes to you.

Prayer to you all

Dave & Tina VG

paris11
Posts: 132
Joined: Oct 2010

Hi Karen,

It is indeed a beautiful day. Yoga will help you to be strong physically and mentally. I am certain that your cousin draws strength from your courage and spirit. She is honored to be your friend.

With the second recurrence, the onc recommended IP chemo. I thought, "what's the point? It will only recurr again". That was 22 months ago. I am so grateful that I went with the treatment. Somehow Life keeps gettting better.

Namaste,

Connie

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Hugs and lots of well wishes.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

Absolutely no apologies necessary! We all hang on those @#%& CA-125's and the possibilty of recurrances or advancement of our disease. IF the worst happens and you have to go back into treatment..... you'll put those big girl panties on and we'll be right here with you.
You have had AT LEAST 18 months of remission and knowing that you've had such success the first time, there is no reason to think that you couldn't have success again. Waiting is the worst, isn't it.
(((HUGS))) Maria

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

Would it help if you had the test in a month rather than in two ? If it is a lower number that would be great or if it is higher it would give you time to prepare for what might be ahead of you. To me the stress of waiting is worse than the news itself.
Good luck no matter what you are strong and if you need to you can do whatever needs to be done, we are here for you!
Colleen

antcat
Posts: 272
Joined: Jan 2011

Hi, please don't be scared, the CA 125 is not an accurate tumor marker test. I know that from experience because mine went down despite the latest CT scan showing tumor growth. My oncologist doesn't even want to do the test anymore, but just for the heck of it, I'm going to ask my primary care doc to run it since I haven't had it done in 3 months. But, I don't think it's too accurate of a test and you have to remain positive. I know it's hard and I know what you're going thru, everyone always worries it'll come back.

Take care.

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

I wished that I were there with you to give you a hug. You know, sometimes, I think we know too much. We all fear the CA125. I don't really believe in mine anymore. Mine has been in the normal range and then I get a scan and it shows progression. I even told my doctor that I don't put much faith in the CA125. But yet, we all want to know what the number is. I hate that it seems to control all of our lives in some way. Karen you hang in there. We all love you and you know that. I think you should ask your doctor to at least check it again in 1 month instead of waiting 2 months.

Love you,
Linda

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Karen

Maybe you can join your family in Lalaland for the next month--then go to www.directlabs.com where you can order your own CA-125 test for $68 (out of pocket). Ideally, your doctor would order it for you but I think two months is too much to ask someone to wait. I'm hoping for the best for you--you have a kind & gentle soul.

kikz's picture
kikz
Posts: 1270
Joined: Jun 2010

directions to Lalaland? A dear friend of mine asked me if I wanted to run away with her today. I know she is trying to get my mind off of things. We went to Half Moon Bay and it was gorgeous. We stopped along the way to watch some kite surfers. We ate lunch at a lovely restaurant right next to the ocean. I had a glass of wine which made me tipsy (don't drink much). Then we walked along a path past some quirky houses and some magnificent homes.

It was a great day; I am blessed to have some terrific people in my life.

I will have my CA 125 on 6/10/2012. After emailing my surgeon I understand that even if I have a recurrence there is really not a lot to do at this point. I think I finally understand what is meant by managing the disease. If it comes back it becomes a chronic illness much like diabetes or high blood pressure. Those diseases are managed because there is no cure. Unfortunately for us the treatment used to manage this disease is what ultimately is our downfall.

I am hoping and praying that I am still in remission and until I know different I want to remain calm and happy. I have complete faith in my doctors and know they will do the best for me.

Thank you all again. I cannot express what it means to have you all in my life.

Karen

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Understanding that recurrence is not always a slippery slope to hospice helped me deal with the possibility of recurrence...then the reality of recurrence.

I tell my friends & family that it's possible to live with the disease and it's a balancing act not to die from the treatment. I read somewhere that 60% of people with cancer die of something else anyway--I'm not sure where OVCA fits into that statistic.

Thanks for sharing your lovely outing with your friend with us. It does my heart good to know you have good days, too.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I recurred three years ago and am living with OVCA as a cronic disease. It's not easy, but it's worth it to me. My middle granddaughter is eight today... she was two when I was diagnosed... I wouldn't have missed this time with her for anything, so I'll continue to try to balance chemo treatments, fatique, etc. with b-day smiles and hugs!
(((HUGS))) Maria

undertreatment2012
Posts: 126
Joined: Mar 2012

I have been scared of recurrence since my first diagnosis and I am not even done with first round of chemo. I think it's because I am so intuitive. I said INTUITIVE not negative, which some people think. I knew I had cancer, I just knew it when they told me they saw something, I knew it would not be good and it wasn't. In fact one of the worst. As then, I know that it will come back. Not if but when. But my family goes along thinking life is a bowl of cherries and after treatment everything will go back to "normal". I am telling you guys, this is not depression or bumming out. It's a feeling I have inside since my surgery, something is still wrong. Going to the onc for a physical tomorrow. Lots to talk about. And I want another scan. I get sick of thinking about it. I don't know how some of you have gone through so much. Admirable, but I don't think I could do half of what some of you have. You all are the best.

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