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how high is a 15,000 ca-125 result

philipmullican
Posts: 7
Joined: Feb 2011

my fiance was diagnosed with ovarian cancer last week. we are prepared to fight and we will stay positive and do whatever we can to win the battle. i am very please with her doctor and his treatment plan. however i am almost certain he is sugarcoating the the prognosis. here is her situation. she is 41 yrs old and the tumor is large. ct scans, ct biopsy and other tests confirm that the cancer is spread to both ovaries, the omentum, some lymph nodes (dr say a few), and he says there are 2 cancerous spots on the liver but not in it. the ca 125 is 15,000 (yes, it is 15 thousand, not hundred). dr. says it is stage III but didn't say a,b,c. he says that the best chance for removing all the cancer is to have 9 weeks of chemo in hopes to reduce the tumor and spread etc, and that would be followed by surgery and then more chemo. when we asked the prognosis he just says he believes 100% she can beat it. my concern is the fact that she cant even have debulking surgery because of size/spread of the cancer, which makes me think it is more that just serious, but very life threatening. we just both want straight answers so we know how to fight the fight. here are my questions:

can the cancer actually be staged by only a ct biopsy without debulking surgery?
how high is a 15000 count ca 125?
can dr actually know for sure that the spreading cancer is only on surface of liver and not inside without surgery?
can dr actually now how many lymph nodes are infected by ct scans only and without surgery?

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

You have done the right thing by reaching out and there a lot of incredibly intelligent women on this board.
One most important thing is that her doctor should be a gynecological oncologist and yours may be. They are highly trained for the special surgery and chemotherapy that is available. Any CA 125 number over 35 is abnormal. However, that marker alone is not always a great indicator. For example, mine was 660 before my first treatment and has been below 20 ever since but I have had many recurrences so you would expect it to elevate. The CT/PET is the best tool for my doctor to manage this for me. The combination of the CA 125 and CT/PET scans together are good tools. You mentioned a CT scan but did not mention the PET scan. PET scans will include an injection of sugar base radioactive material that will cause the bad cells to light up very bright. She may have that one too. These scans can reveal a tremendous amount of information and can also reveal what the eye may not see in a surgery if it’s tiny.
Yes, you are correct in the fact that this is a very serious disease. If you start your research on the internet, the statistics are horrifying. My gyn/onc has always asked me to ask his team any questions I may have and explained to me that statistics are not always applied to every person who has this dreadful disease. Each person may have a unique circumstance that does not apply to everyone, so be careful with the statistics. What’s nice about talking to the people on this board and others is that you can find information with similar diagnoses, side effects and experiences from others that will be similar to yours and what the outcome was to help.

I wish you and your fiance the best of luck in the difficult journey.

Cindy Bear
Posts: 563
Joined: Jul 2009

Hi Philip. I am so sorry to hear abour your fiance. There are some wonderfully informed, experienced, supportive women on here that will be chiming in soon I'm sure. My mother had uterine cancer, not ovarian. I have heard of CA being as high as 23,000. While these numbers are very high, they are not always good indicators . For instance at Stage IVB, before any treatment, my mother's CA was only 58. If you go treatment decision tools under cancer.org on menu page, and then understanding diagnosis and then staging your cancer, I think you will find a lot of useful info. Surgery is only one tool. They use physical exams, scans (CAT AND PET), biopsy, ulrasound etc. I would also advise you to get a second opinion, no matter how much you like her doctor and request all copies of tests, scans, bloodwork etc as you go. It's great that she likes her doctor, and optism and hope are great things, but I firmly believe there are some things a doctor should never say, like always, never and 100% sure... before she commits to any treatment plan, check into any clinical trials. There is also a clinical trial finder on this web under cancer.org.
Good luck and keep us posted.
Hugs,
Cindy

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

Hi Phillip,

I'm so sorry to hear about your fiance. My own cancer was diagnosed one year and one month ago. Today, in fact, is the anniversary of my surgery. My CA125 at diagnosis was 9,824. At the time, I thought it was awful. My gyn/onc (one of Baltimore's top docs) eased my worry about the high number by explaining that the high number is not really a prognostic tool, it meant that the CA125 test would be a great way to determine my body's reaction to treatment. My most recent CA125 was 13. ;)

I was told, after the CTscan (before surgery) that I was most likely Stage IIIC based on the fact that the cancer had extended beyond my ovaries and into my peritoneal wall, my bladder and my bowel. My debulking surgery involved removal of the cancer from the bladder, bowel, total abdominal hysterectomy and omentumectomy. When I woke up from surgery, I was relieved to hear that I was still IIIC (However, I recently saw a post from a 15 year Stage IV survivor on Inspire).

I have no idea how many lymph nodes were affected, I didn't ask. My goal was survival (still is) so my philosophy isn't so much where the cancer was, but rather, where it isn't NOW.

The best advice I can give you is this, find a doctor who she is comfortable with both in terms of medical knowledge and bedside manner. (A positive attitude and approach is the best defense in this situation).

Many women have had chemo before their surgery, I'm sure you'll hear from some of them.

Finally, I can tell you this from my own experience. The best thing you can do for her is to be there for her. Listen to her fears, and it's okay to share some of your own, just remember, right now--she has a lot to deal with, and you may need to find someone that YOU can talk to about your fears so that you don't overwhelm her and make her feel like she can't share her feelings with you because it's too hurtful for you to hear. My husband and I had difficulty finding a way to deal with our individual and shared emotions. We both ended up seeing separate therapists to help us cope. Because in the end, there were things I wanted to talk about that he couldn't really handle and vice versa.

Some things he did for me that made a world of difference:

He slept in my hospital room with me so that I didn't feel alone at night (it was my first hospital stay EVER outside of child birth).

He stayed home from work for the first week I was home from the hospital (actually I made him go back after that, because he was making me crazy, but it was nice to have him there with me.)

He sat with me during my chemo treatments, very important for the first two or three, after that I felt much more comfortable. He took a laptop and a book because I slept a lot.

He let me sleep between treatments as needed (and I needed a lot). However, he set up a cozy spot on the living sofa for me so that I didn't spend all my time in bed.

He walked with me. As slow as I needed to go, and as far as I felt like I could go.

I hope this helps. Feel free to send me a msg if you have any other questions!

Leesa

kayandok
Posts: 1223
Joined: Jun 2008

you are an amazing guy, and your fiance is one blessed woman! I'm so sorry that you had to come here to finId information, but commend you in doing so!!

As you have already received such great advice, I will not add anything else, other than to consider a second opinion, as is already mentioned, from a specialist who would consider doing cyto-reductive surgery first, and then chemo. You will need to go to a learning hospital or see someone highly qualified, so it might mean traveling a bit, but worth it, in my opinion. Your fiance is young (I presume healthy) and although the cancer is spread outside the ovary, that is not at all unusual for late stage cancer. Following, is just one article on neo-adjunctive chemo versus adjunctive, and if you google you will find many more. As the article mentions, the jury is still out, and there are not enough trials to prove one is better, but I definiely think it is good to look at the arguments on both sides. There are lot's of women out there who have never reurred after a IIIC or even IV dx, but starting out with cyto-reductive surgery is viatal in my opinion. (If you can find a physician that will do a COMPLETE (as opposed to OPTIMAL) cyto-reductive surgery, even better, but they are hard to find.)

There is a lot of hope for your fiance, take courage!

Wishing you the very best,
kathleen

http://www.cancernetwork.com/ovarian-cancer/content/article/10165/1297039

Sorry, this will not get you to the article, and I it won't allow me to copy and paste, either, but if you google "neo adjunctive versus adjuctive chemo for ovarian cancer you can see it under the cancernetwork site.

Mum2bellaandwilliam's picture
Mum2bellaandwilliam
Posts: 414
Joined: Oct 2010

Just read your post a was interested in your comment about complete debulking / optimal debunking, I am assuming is when the remove the lot if and not just the bits that look cancerous?

Liz.

kayandok
Posts: 1223
Joined: Jun 2008

optimal seems to be defined differently by different sugeons as you can see below. If you google the subject, you can read many articles when you have the time. The following article sheds a bit of light on why the subject is so confusing.
k

This is copied from the MedScape site

The Role of Cytoreductive/Debulking Surgery in Ovarian Cancer: Definition of Optimal Cytoreduction

When members of the Society of Gynecologic Onco logists were asked what they consider optimal cytoreduction in stage IIIC epithelial ovarian cancers, 12% defined it as no residual disease; 13.7% as 0.5 cm or less residual disease; 60.8% as 1.0 cm or less; 8.7% as 2.0 cm or less; and 1.3% used other criteria.[6] According to the Gynecologic Oncology Group (GOG), optimal cytoreduction is defined as the largest residual tumor nodule measuring 1 cm or less.[7] This definition is the most widely accepted among gynecologic oncologists.

The fact that residual disease is determined by the operating surgeon has obvious pitfalls. Prefontaine et al.[8] used a simulated patient model to evaluate surgeon accuracy in estimating tumor size. Most surgeons underestimated rather than overestimated tumor size; 25% of patients with suboptimal disease and 20% with optimal disease were erroneously categorized.

kayandok
Posts: 1223
Joined: Jun 2008

"The way ovarian cancer spreads is like spray paint" is the way my doctor explained it to me. So, it initially spreads to the surface of an organ as opposed to invading an organ. So, it is highly likely that the spot on the liver is on and not in the liver, but you are right, they really can't confirm anything until they open her up. And that is why doing surgery first, rather than waiting, seems so much more logical IMHO. I had cancer covering the surface of my bladder, and my doctor scraped it using an argon laser. That was almost 4 years ago, and it has not returned to the bladder.

k

philipmullican
Posts: 7
Joined: Feb 2011

you guys are awesome. thanks so much!

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

Hi,
My mom was diagnosed in June with stage three C ovarian cancer. She had three rounds of chemo and then debulking surgery. unfortunately due to the location NOT the size they were unable to operate once they went in. mom also had the spots around the liver and lungs and both disappeared after chemo and the bloating never returned.
CA 125 is only a marker and not necessairly an indication of how serious the disease is. Your g/f's age is also in her favour, the younger you are the better chance of survival. Hang in there.

antcat
Posts: 272
Joined: Jan 2011

I was so sorry to hear about your fiance. You both need to stay positive (even though sometimes I know it's hard) and always be hopeful. I found out that it's very important to have a good team of doctors. You need to make sure that you have a good team of doctors. A gyn/oncologist is extremely important as he is a specialist who does the surgery. I have an excellent one who is most compassionate, and is always available for any questions I may have. A good medical oncologist is also important as well as a primary care physician. My previous oncologist did not want to work with my gyn/oncologist or primary care physician, and didn't want to share any test results or give any updates. So, I had to change.

Also research whatever you can. I do and I always ask my doctors about it. I've even started researching clinical trials for ovarian cancer and reaching out to this group has really helped me.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Philip, you are a gem . Lots of ladies will tell you that boyfriends, fiancees and even husbands of many years sometimes bail at this point because they just cannot handle the cancer journey.

Back to your questions:
Cancer can't be reliably staged without surgery but most gyn/oncologists can make an educated guess. And if they have identified mets beyond the abdomen and/or the lymph system, that means at least stage III.

There is little difference between stage III a, b and c , just as stage IIIc is only a tiny bit "better" than stage IV. I know some stage IV ladies who are doing better than stage III at the same point in time. It's a total crap shoot.

I cannot imagine a physician predicting a 100% "cure" for late stage OC. The statistics say that ultimately about 65% of us will die from it. Remember though that individually our chances are either zero or 100%-either it will come back or it won't.

Most of us will achieve complete remission after first line treatment (and surgery). But a lot of those will recur within 2 years. Then you just go with your Plan B. And Plan C, etc, etc, etc. Joni has had 40+ chemo treatments and she is the least "sick" person you will ever meet. Last Fri she had chemo in the AM, went to work, then took my husband and myself on a subway/walking tour of Manhattan. So don't write off your girl, no matter what happens .

Often the lymph nodes that appear suspicious (enlarged) on a CT scan are located in places (near the aorta for instance) that make a biopsy too risky. That was my own experience. But after treatment, the lymph nodes appeared normal .

Waiting to see if the beast comes back is the worst thing in the world. I am not very good at this, but my mother would have said, "Don't borrow trouble from tomorrow; there is plenty available today."

If your fiancee wants no sugar coating, she needs to have that talk with her doctor. I made mine promise to tell me everything, good or bad, as soon as he knew it. Other people feel differently, and that's fine. I am extremely pro-active when it comes to my treatment and it's vital that I have accurate, complete info so I can plan my next strategy. Plus, I'm just plain out a huge control freak. But I totally believe the patient gets to drive because no one else has nearly as much at stake.

Carlene

philipmullican
Posts: 7
Joined: Feb 2011

thanks hizzy!

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I know it is hard to make decisions when it is all so new and happening so fast. I just thought I would share my experience with you. I had been not feeling well for 18 months before they finally found what they thought was ovarian cancer but turned out to be primary peritoneal cancer (treated the same). It had invaded my intestinal tract by the time they found it and I was pretty sick. The doctors were planning an extensive surgery with colostomies etc.. One young doctor was really passionate about me having chemo first to shrink the cancer and hopefully simplify the surgery. I was given Carboplatin in the hospital and sent home with no appetite and lots of pain. I was only allowed liquids because they were so afraid I would have a complete intestinal obstruction. After a couple weeks the "plumbing" began to work and the pain decreased. I was actually starting to get an appetite by the third week. Tests showed the cancer was sensitive to the chemo so I had 3 more doses before surgery this last December. The doctor felt confident that he could do what was needed by robotic surgery and then I would heal faster and not be off chemo as long as if I had the traditional surgery. Surgery showed lots of scar tissue but only a couple of suspicious looking areas were left which did biopsy positive but there was no other evidense of disease. I then started on carbo/Taxol and now I am feeling better than I had in 2 years (except for the side effects of the chemo which are not all that bad.) Planning to go back to work this week or next. At this point, I really think having the chemo first saved me from a very extensive surgery of course we never know what the final outcome will be. You just have to listen to all the pros and cons and getting a second opinion is a great idea. I didnt get another opinion as I was advised to because I was so sick and had been going from doctor to doctor for the last 18 months and I felt really comfortable with this doctor. But I do agree that getting as many opinions as you need is the smarter plan. Good luck ..hoping for the best for you two.Keep us posted

azgrandma's picture
azgrandma
Posts: 577
Joined: Feb 2010

Hello
I am sorry to meet under these cercumstances. I will keep you both in my prayers, God saw several of us ladies though it and he can see you though also

philipmullican
Posts: 7
Joined: Feb 2011

thanks for sharing that lulu. i read it to Meredith and it really meant a lot for you to share your experience. you two have very similar stories.

she is on 21 day cycle of chemo (corbo/taxol). we have completed two days and the third is tomorrow. her ca125 before the first treatment was 14800. it has dropped a little to 14500. we are going to the doctor on friday (2/25) to review progress.

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