Day 4: A Month of Teal - You Experience Symptoms. Now What?

Yesterday I wrote about symptoms. What if you have those symptoms? What do you do?

I recommend reaching out to your gynecologist for an appointment. Be sure to mention the severity and duration of the symptoms you feel. The gynecologist will most likely:

• do a PAP test ( if you haven't had one )
• perform internal pelvic exam
• get your family history ( let her know about any breast, ovarian, colon  cancer in your family - both mother and father's side). Ovarian cancer and breast cancer have a hereditary link (BRCA mutations) as does colon cancer ( Lynch Syndrome).
• if your doctor has concerns she may send you for a transvaginal ultrasound and also run a CA-125 blood test. 

 For graphics of the pelvic exam and transvaginal ultrasound mentioned above please see this page ( https://www.cancer.gov/types/ovarian/patient/ovarian-screening-pdq#section/_12)  on the NCI website.

If your results show the possibility of ovarian cancer please ask for a referral to see a gynecologic oncologist. Studies have shown that women treated by gynecologic oncologists have better outcomes. See The Relevance of Gynecologic Oncologists to Provide High-Quality of Care to Women with Gynecological Cancer for more information - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712269/ .

Dee
Every day is a Blessing!

Part 2: Using the Risk of Ovarian Cancer Algorithm - UKCTOCS Study Mortality Results

In Part 1 I discussed the Risk of Ovarian Cancer Algorithm screening test and its release in five states in the US.

On December 17th,  Ovarian cancer screening and mortality in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial was published in the Lancet journal. This was an answer to my question regarding improved survival for those women screened using the ROCA/ CA-125. 

Details:
ClinicalTrials.gov, number NCT00058032
Randomized Trial: 202,638 Post menopausal women 50-74  from England, Wales, Northern Ireland
Three arms:  
1. Annual Multimodal Screening (MMS) using CA-125 and risk algorithm ( 50,624 women ). I call this arm the ROCA test but will use MMS when discussing the study.
2. Annual transvaginal ultrasound (TVU) (50,623 women)  
3. No screening ( 101,299 women) .  The distribution ratio was 1:1:2.

OC was diagnosed in 1282 women of all women
630 cases in the unscreened women with 347 deaths
338 cases in the screened with CA-125 and ROCA 148 deaths 
314 cases in the ultrasound screen group and 154 death. 

One analysis showed less deaths in the MMS and TVU groups but the difference was not significant.
Mortality reduction using the Cox Model for years 0-14 showed a 15% reduction in deaths in the MMS group versus the control group. And there was an  11% reduction in mortality in the TVU group versus the control group. Graphs of the control versus MMS and control vs TVU are the same up to about 10 years. If you look at specific time periods there is a change in mortality reduction. For MMS the 0-7 time period showed an 8% reduction vs control and for 7-14 year time period  there was a 23% reduction in mortality versus the control. 

A second analysis which removed women,who had ovarian cancer before the screening of the trial began and who died early on in the study ( "prevalent cases" in which the change point in the CA-125 occurred before enrollment in the study) found that the MMS group had an average of 20% less deaths for the entire study ( 0-14 years) .

You may view watch this video ( 2hours 40 minutes) of the UKCTOCS Ovarian Cancer Mortality Results Meeting ( includes psychosocial evaluations of participants as well as mortality data ):


During this video it was stated that these early results from the UKCTOCS ( no significant p value)  is similar to the results of the late effect seen in the PSA European study( for prostate cancer) and time is needed to follow-up and confirm late effects. 


Discussion of the results:
There were media articles ( NYT)  written stating that early detection of ovarian cancer was now possible because of this test. 

Medpage- Ovarian Cancer Screening Study Falls Short 

A press release from Abcodia may be found here.

Ovarian organizations commented on the results : 

OCRF -
"While we join the researchers in their optimistic outlook and are hopeful that more positive results will be released in the future, today we must acknowledge that the results do not show that screening works."
 http://www.ocrf.org/news/research/study-results-show-ovarian-cancer-screening-doesnt-save-lives-researchers-optimistic-about-future-results

OCNA -
“These initial results are promising for the ovarian cancer community, but there is much more data analysis needed in the coming months to determine the true impact on the future of early detection testing for ovarian cancer. We are looking forward to discussions with the community in the coming months to understand how ROCA may fit into the prevention of ovarian cancer."

http://www.ovariancancer.org/2015/12/16/statement-coming-soon/

For me questions still remain.
What was the grade of the women that died during the study?  I know from the previous JCO article that 82% of the  women in the study diagnosed with Ovarian Cancer were high grade. How did that correlate with those who died. 

From the JCO article 41 % of the women dx with OC in the MMS arm were stage 1 or 2. How does that relate to their mortality?

What I wish I knew:
Does the ROCA / CA-125 test work on women earlier than age 50? Those that are pre-menopausal?

If you were able to look at the BRCA status of the women in the study would that effect the results? (Is the test better on those with a BRCA mutation?

As many others during the past few days have said. This is promising but more work needs to be done. 

Dee
Every day is a blessing!
updated 12/21/2015

I Have Symptoms - Now What?

If you have any of the  symptoms that I mentioned in my post of September  3^rd , you should make an appointment to see a physician, preferably your gynecologist. There is NO screening test for ovarian cancer for the general public. But there are a few tests that your doctor may run if he/she suspects you have ovarian cancer.

At your appointment with the gynecologist you may have a pelvic exam. If you are due for a PAP test your gynecologist may do it at this time too. Remember a PAP test is a screening test for cervical cancer.

In addition to the medical tests she may do, you doctor will ask questions about your personal medical history as well as that of your family.  Be sure to mention to your doctor if anyone in your immediate family (aunts /uncles too) has had breast or ovarian cancer or has Lynch syndrome. About 10 % of ovarian cancers are hereditary. (Tomorrow's post will discuss risk factors.)

If your doctor has concerns during the exam she may do for a trans-vaginal ultrasound.  You can find more info about the transvaginal ultrasound here.  She may also ask you to have blood drawn to test the level of  the ovarian cancer tumor antigen, CA-125. ( I'll provide additional information on the CA-125 test in a future post.)

For more information and diagrams of screening methods please visit : http://www.cancer.gov/types/ovarian/patient/ovarian-screening-pdq#section/_12

My Story / Advice:  I recommend going to the doctor with a small notebook and writing down information your doctor has given you. That way you won't forget  important information and appointments. I used a small pocket-size notebook to keep track of information and to write down any questions I had so that I could remember to ask my doctor when I saw her. 

Dee

Every Day is a Blessing!

 

OC Awareness #11- Task Force Recommendation

Just yesterday the US Preventative Services Task Force released its recommendation regarding ovarian cancer screening in the general population.

The recommendation is for adult women and does not apply to women who are at risk for the disease ( genetic mutation) or women already diagnosed with the disease.

"The Task force recommends against screening women for the disease. "

This recommendation was made because screening using CA-125 and ultrasound did not have any benefit (reduce mortality)  and if fact those tests could lead to harm (unnecessary surgery) .

The task forced used three large trials( including the Prostate, Lung and  Ovarian Cancer Screening Study) to reach their conclusion . A discussion of the test can be found on the USPSTF website here and the consumer fact sheet ( pdf)  can be found on their website.


Here is a good article to read for a very complete explanation of the studies behind the recommendation.
http://annals.org/article.aspx?articleid=1357339


Dee
Every Day is a Blessing!

Research News : OC screening and Secondary Cytoreductive Surgery

Two interesting articles appeared recently in the Oncologist and Cancer Prevention Research .

Impact of Screening Test Performance and Cost on Mortality Reduction and Cost-effectiveness of Multimodal Ovarian Cancer Screening

This study looking at mortality reduction, years of life saved and cost -effectiveness for women who underwent an annual CA-125 and on a rising result underwent a subsequent transvaginal ultrasound . Results showed a  moderate decrease in mortality (13%). The tests were found to meet cost effective guidelines.

The Role of Secondary Cytoreductive Surgery in Patients with Recurrent Epithelial Ovarian, Tubal, and Peritoneal Cancers: A Comparative Effectiveness Analysis

This comparative study showed reported the cytoreductive surgery used to treat  recurrent Ovarian cancer may increase overall survival.

Dee
Every Day is a Blessing!

Doctors Don't Follow OC Guidelines

The has been a buzz on the internet about a study published in the Annals of Internal Medicine titled " Vignette-Based Study of Ovarian Cancer Screening: Do U.S. Physicians Report Adhering to Evidence-Based Recommendations?". In the study , 1800 family physicians,internists and gynecologists answered a 12 page survey regarding women's annual exams and their offers or orders for a transvaginal ultrasound (TVU) or CA-125 blood test .

The conclusion of the study was

"One in 3 physicians believed that ovarian cancer screening was effective, despite evidence to the contrary. Substantial proportions of physicians reported routinely offering or ordering ovarian cancer screening, thereby exposing women to the documented risks of these tests"

The report also stated that 33% of the doctors offered TVU and the CA-125 to low risk women. Everyone should know that physicians answered questions based on patient scenarios. The doctors were not answering questions about their actual patients.

Although I am happy that physicians are aware of ovarian cancer there appears to be a need to better educate physicians that screening of asymptomatic women is not recommended by any professional medical organization or government agency . Maybe one of the ovarian cancer organizations ( OCNA or NOCC or even FORCE) might develop some continuing education training for physicians regarding ovarian cancer symptoms, risk factors, the CA-125 test, a review of the studies regarding screening and the different way they should interact with both low risk and high risk women.

(Source: Baldwin LM, et al "Vignette-based study of ovarian cancer screening: Do US physicians report adhering to evidence-based recommendations?" Ann Intern Med. 2012;156:182-194.)

If you would like to read further commentary on this study please see:

Wall Street Journal

http://blogs.wsj.com/health/2012/02/06/many-doctors-dont-follow-ovarian-cancer-screening-guidelines/

Huffington Post

http://www.huffingtonpost.com/2012/02/06/ovarian-cancer-screening-_n_1258156.html

Dee

Every Day is a Blessing