The things that make you go Ugh!

In November I had a CA-125 blood test. It came back 21.  The previous result was 14. I went for a retest in December and it came back 20. So it looks like it is now stable but at a different level. Keep in mind that my CA-125 was 17 when I recurred on my liver and spleen in 2008 so of course there is concern that my number was trending up - even in the normal range.

I decided to look more closely at the test results sheet because the results were reported as normal < 35 and I had thought the normal for the tests I had been having was < 21. 

Here is what I found on the sheet: 
" THIS TEST WAS PERFORMED USING THE BECKMAN COULTER CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE.
"

So I went back to the report from August 2014 and sure enough the  normal for the test was reported < 21. 

The report said:

" THIS TEST WAS PERFORMED USING THE SIEMENS (DPC) CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA 125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE."

Ugh!  "Look they went and changed the method!" Maybe that is why my CA-125 went up. The last time the method was changed the lab followed it using both tests for a few months to see how the results correlated.  I was in treatment then and we were following it closely to make sure the chemo was working.

Being the research "hound" that I am I got on Google and investigated how the tests are done and what the difference was between the two methods.

I learned that both tests -  are chemiluminescent immunoassay tests. They use a monoclonal anti-CA125 antigen alkaline phosphatase conjugate and paramagnetic particles which are then separated in a magnetic field. A chemiluminescent substrate is added and the light generated by the reaction is measured with a luminometer. The light produced is proportional to the concentration of CA-125 antigen. 

From what I read the Beckman test uses two mouse monoclonal antibodies while the Siemen uses one mouse antibody and one rabbit monoclonal antibody. I am going to assume that is was causes the difference in results since all the tests were being done by the same lab.

The up and down of CA-125 results causes enough anxiety without having a different  method which could be the cause of the change thrown into the mix. 

I probably should have looked more closely at the results when they first came in before getting nervous. 

I will be seeing my gyn onc in February and had a CT scan today so I think I will have my answer if it is something I should really worry about. 

Dee

Every Day is a Blessing!

 

The Only Constant in Life

is Change!

The most recent change which makes me feel happy and sad at the same time involves a person who has played an important role in my journey with ovarian cancer.

Early last week I learned J, a social worker at my cancer center, was leaving. I am happy because she is making a move that is so wonderful for her and her family. But I am still sad because I will no longer see someone who has made my cancer survivorship easier.

J took care of the gynecologic cancer patients and facilitated the Gyn Cancer Support group. She has been instrumental in the success of this group for more than seven years. Because of her expertise as a social worker, she knew just when a patient needed the support of others and that is when she would tell them about the  support group and ask them to join us.

She also was involved in a number of patient programs at the cancer center including Survivors Day.  I served on the Survivors Day Planning Committee with her for a few years so I was able to see her creativity, her efforts to make the day special for patients and how well she got along with other cancer center staff and other survivors.

J was always there for me. I used to call her J- 911. If there was an emotional need all you had to do was call J-911 and she would be there with all the advice you needed to get you through the rough spots.  She was especially helpful to me when the deaths of friends in the support group deeply affected me. After seven years she was more to me that just a social worker she was a friend.

I wish only the best for J.


Dee
Every Day is a Blessing! J was such a blessing to me. 

"Outshine"- A Must Read

Last month, I won a Wego Health contest in which the prize was an autographed copy of " Outshine An Ovarian Cancer Memoir "by Karen Ingalls, a stage II ovarian cancer survivor. Due to a very busy Christmas holiday I didn't get a chance to get around to reading it until New Years Day.

"Outshine" is a well written, easy to read book. For me, reading the book was as if I was having a coffee and chatting with a woman from my support group. Ms Ingall's not only shares her story with ovarian cancer but also provides information about the symptoms of the disease, diagnostic tests ( CT, MRI, PET) and treatment options. Helpful for newly diagnosed women is her advice regarding how she handled side effects of chemotherapy through standard medicine and complimentary medicine. She also discusses the important role her husband, family and friends played in aiding in her recovery. Ms Ingalls does not leave out the pain and anguish.  I could totally relate to what she was going through.  Rather she offers excellent advice on how she dealt with not only the emotional issues but also the physical issues of her diagnosis. 

This may seem odd but I couldn't wait to get to the end of each chapter. Why was I in such a rush? Because I couldn't wait to read the poem, scripture verse , saying or affirmation related to the chapter. Here is the one you will find at the end of Ch 15:

We can turn our backs on tomorrow
And live for yesterday.
Or we can be happy for tomorrow
Because of yesterday.- Anonymous

Over the past 9 years I've read a number of books by or about women diagnosed with ovarian cancer such as The Light Within  and Memoir of a Debulked Woman as well as other books by and for cancer survivors. "Outshine" is one of my favorites and its contents are of value to women diagnosed with the disease as well as their caregivers. I will be sure to share the book with women in my support group.

You may order the book on Amazon. More information about the author and the book may be found at the book's website.

Dee
Every Day is a Blessing! Blessed to have had the opportunity to read "Outshine".

It is 2015 !

It is 2015, I'm here and I am thrill!
I look forward to March and my son's wedding. I love my future daughter-in-law and am so happy to have her join the family.
I look forward to June when I will celebrate a pretty special birthday.
And I look forward to July,well the 29th in particular, when I will celebrate a landmark "cancerversary" - my 10th.

Even with all these exciting things already planned for the year I still want to make my  annual aspirations.  I wrote about my aspirations for 2014 here. For 2015, I'm going to repeat some of last year's aspirations ( I never did make a trip to Maine) and update some others. Here they are:

• Continue to visit my children and grandchildren every few months
• Continue to advocate for ovarian cancer patients and research through this blog and the #gyncsm community
• Post more frequently on this blog
• Help my dog, Amber, achieve Excellent titles in Agility
• Continue to increase my physical activity and flexibility so that I can be a better dog handler and improve my health
• Continue to paint
• Visit the state of Maine
• Learn some Hindi words (New)

I wish for all my readers a Happy and Healthy and Joyful 2015.

Dee
Every Day is a blessing!