(4 Sasha) Peritoneal & Ovarian Cancer helps 4 newbies-There R no crazy ?s but we think we'll go craz

Good morning Sasha,

First of all I thank you for sharing information on your “about me” page.  This helps me greatly when trying to see in what way you might be helped the most.  Furthermore, I am referencing your original letter which you first posted here:  https://csn.cancer.org/node/313625.

You titled it “Newbie with a Crazy Question”.  Let me put you at ease, when the doctor says you might have cancer, or you have cancer, THERE ARE NO CRAZY QUESTIONS. 

After you hear those words the biggest question IS, if you’re like most of us, is CANCER—AM I GOING TO DIE—WHERE IS THE BEST PLACE TO FIND HELP?  Being much further along the cancer journey than you at this point I’ve endeavored to find some helpful information for you.

Therefore, I am posting this on a separate topic basic to Ovarian Cancer, in the hopes that other “newbies” with crazy questions—NOT—might benefit as well.  Hopefully, your problem is a cyst and not cancer.  However, as stated below, I would not just have an “ovary” removed, I would have a complete hysterectomy that included removal of the fallopian tubes.  My gynecologist says, “I’m not tying tubes anymore, I’m removing them.”  He went on to explain now that it is believed this is where ovarian cancer starts.  When I had my hysterectomy at age 36, I only had my uterus removed.  If I had known then, what I know now (isn’t that the case with all of our learning curves?), I would have told the doctor to take EVERYTHING OUT.  Then I might not have been found to have cancer in my ovaries at age 74!  But even then after ovary removal, one can still be found to have Ovarian cancer because those cells could have already migrated to another place!  I say, “Better to be safe than sorry.”  But what’s the old saying, “If a frog had wings, he wouldn’t bump his tail!” 

Our friend, “Abrub”, is giving you some good advice.  Things are going well for her, thank God.  She is right about having a SECOND opinion, and I hope that when you do it will be to find a good gynecologic oncologist who can help you.  Mayo Clinic, Rochester, MN, released a report this past April 2017 in which they stated that of all the people who came to them for a 2^nd opinion, only 12% were correct.  So you surely want to know you’re having a complete workup for your problem. 

So yes a cyst could be benign, but on the other hand it could mean cancer in some stage.  And while 35 is an average number for women who have female problems, a CA-125 higher than that warrants thorough testing.  While there are other factors that could increase that number, for me it has been an accurate indicator of the progression of my Stage IV Peritoneal Carcinomatosis/Ovarian Cancer.

So when the numbers are low it has been a good indicator that my cancer is not growing rapidly and advancing to other organs.  As part of my regular visits, I have a monthly CA-125 count.  Mine has never been in the thousands, as have others, but I’m a stage IV and have never had numbers that range higher than the 325 to 400 range.  But when they get that high, it means “big” trouble for me.  So, yes, in some cases, it may not be very high, but it could spell trouble, and deserves thorough testing to see that the ovary is “just benign” and “not to worry”.  Isn’t that a joke?  With 4 children, and you’re young yourself, you have plenty on your plate to be concerned about.  So where to take your concerns and see that they are thoroughly explored is of paramount importance.

Personally, if you find that a hysterectomy is suggested, please have fallopian tubes, ovaries and uterus removed all at the same time.  Ovarian cancer can occur even after the ovaries have been removed.  Doctors now believe that Ovarian cancer actually begins in the fallopian tubes.  So at this point, with being a young mother with 4 children, you are wise to consider this possibility. 

Here’s hoping that you will find the right doctors and medical team to analyze the problems you need answers for.  You’ll get some honest answers here, which I know is the reason you are writing.  The earlier you can get help, the better. 

Love Loretta – (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) 1^st DX Nov. 2012 now entering 6^th year of survival though not PFS (Progression free survival)

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1.      http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

By Melissa Turtinen - April 4, 2017 12:17 pm

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

       Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

       In 21 percent of cases, the diagnosis was changed completely.

       In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

2.      https://www.mayoclinic.org/diseases-conditions/ovarian-cysts/diagnosis-treatment/drc-20353411?reDate=08012017

Ovarian cysts

“Symptoms & causes

Diagnosis & treatment

Diagnosis

A cyst on your ovary can be found during a pelvic exam. Depending on its size and whether it's fluid filled, solid or mixed, your doctor likely will recommend tests to determine its type and whether you need treatment. Possible tests include:

Pregnancy test. A positive test might suggest that you have a corpus luteum cyst.

Pelvic ultrasound. A wand like device (transducer) sends and receives high-frequency sound waves (ultrasound) to create an image of your uterus and ovaries on a video screen. Your doctor analyzes the image to confirm the presence of a cyst, help identify its location and determine whether it's solid, filled with fluid or mixed.

Laparoscopy. Using a laparoscope — a slim, lighted instrument inserted into your abdomen through a small incision — your doctor can see your ovaries and remove the ovarian cyst. This is a surgical procedure that requires anesthesia.

CA 125 blood test. Blood levels of a protein called cancer antigen 125 (CA 125) often are elevated in women with ovarian cancer. If your cyst is partially solid and you're at high risk of ovarian cancer, your doctor might order this test.

Elevated CA 125 levels can also occur in noncancerous conditions, such as endometriosis, uterine fibroids and pelvic inflammatory disease.

Treatment

Treatment depends on your age, the type and size of your cyst, and your symptoms. Your doctor might suggest:

Watchful waiting. In many cases you can wait and be re-examined to see if the cyst goes away within a few months. This is typically an option — regardless of your age — if you have no symptoms and an ultrasound shows you have a simple, small, fluid-filled cyst.

Your doctor will likely recommend that you get follow-up pelvic ultrasounds at intervals to see if your cyst changes in size.

Medication. Your doctor might recommend hormonal contraceptives, such as birth control pills, to keep ovarian cysts from recurring. However, birth control pills won't shrink an existing cyst.

Surgery. Your doctor might suggest removing a cyst that is large, doesn't look like a functional cyst, is growing, continues through two or three menstrual cycles, or causes pain.

Some cysts can be removed without removing the ovary (ovarian cystectomy). In some cases, your doctor might suggest removing the affected ovary and leaving the other intact (oophorectomy).

If a cystic mass is cancerous, your doctor will likely refer you to a gynecologic cancer specialist. You might need to have your uterus, ovaries and fallopian tubes removed (total hysterectomy) and possibly chemotherapy or radiation. Your doctor is also likely to recommend surgery when an ovarian cyst develops after menopause…”

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 https://www.cancer.gov/types

Once a firm cancer diagnosis is established, you will find some very good information here at the NIH site.

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3.      https://www.oncolink.org/cancers/gynecologic

4.      https://www.oncolink.org/cancers/gynecologic/ovarian-cancer

 “…Ovarian Cancer

Information about ovarian and primary peritoneal cancer

Ovarian Cancer: The Basics

Basic information about ovarian cancer, its diagnosis and treatment. 

All About Ovarian Cancer

Information about ovarian cancer, its diagnosis and treatment

Treatment Options Support and Resources

Supportive resources for women with ovarian cancer.

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5.       https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis/tumor-grade-fact-sheet

“Tumor Grade

ON THIS PAGE  How is tumor grade determined?

 How are tumor grades classified?

What are some of the cancer type-specific grading systems?

How does tumor grade affect a patient’s treatment options?

How does tumor grade affect a patient’s treatment options?

Doctors use tumor grade and other factors, such as cancer stage and a patient’s age and general health, to develop a treatment plan and to determine a patient’s prognosis (the likely outcome or course of a disease; the chance of recovery or recurrence). Generally, a lower grade indicates a better prognosis. A higher-grade cancer may grow and spread more quickly and may require immediate or more aggressive treatment.

The importance of tumor grade in planning treatment and determining a patient’s prognosis is greater for certain types of cancer, such as soft tissue sarcoma, primary brain tumors, and breast and prostate cancer. 

Patients should talk with their doctor for more information about tumor grade and how it relates to their treatment and prognosis…”

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6.      https://www.cancer.gov/about-cancer/diagnosis-staging/staging

 [Loretta’s personal note re staging.  I was first diagnosed with Peritoneal Carcinomatosis (multiple tumors in my peritoneal cavity in the abdominal fluid.  Then my 2^nd opinion found it was in my ovaries as well.  So even though it wasn’t determined which was the primary source, because either can be primary, I go with the first diagnosis of “Peritoneal Carcinomatosis/Ovarian Cancer Stage IV”.  Even when the cancer spreads the primary source remains the diagnosis with the metastatic spread listed second.  Since this was the order of my diagnosis, this is why I write PC/OC Stage IV.  And no matter, they are both treated with the same treatments.]

 “Cancer Staging

Stage refers to the extent of your cancer, such as how large the tumor is, and if it has spread. Knowing the stage of your cancer helps your doctor:

• Understand how serious your cancer is and your chances of survival
• Plan the best treatment for you
• Identify clinical trials that may be treatment options for you

A cancer is always referred to by the stage it was given at diagnosis, even if it gets worse or spreads. New information about how a cancer has changed over time gets added on to the original stage. So, the stage doesn't change, even though the cancer might.

How Stage Is Determined

To learn the stage of your disease, your doctor may order x-rays, lab tests, and other tests or procedures. See the section on Diagnosis to learn more about these tests.

Systems that Describe Stage

There are many staging systems. Some, such as the TNM staging system, are used for many types of cancer. Others are specific to a particular type of cancer. Most staging systems include information about:

• Where the tumor is located in the body
• The cell type (such as, adenocarcinoma or squamous cell carcinoma)
• The size of the tumor
• Whether the cancer has spread to nearby lymph nodes
• Whether the cancer has spread to a different part of the body
• Tumor grade, which refers to how abnormal the cancer cells look and how likely the tumor is to grow and spread…”

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7.      https://www.cancer.gov/types/ovarian

“Ovarian, Fallopian Tube, and Primary Peritoneal Cancer—Patient Version

The ovaries and fallopian tubes are part of the female reproductive system. There is one ovary and one fallopian tube on each side of the uterus (the hollow, pear-shaped organ where a fetus grows). The ovaries store eggs and make female hormones. Eggs pass from the ovaries, through the fallopian tubes, to the uterus. The peritoneum is the tissue that lines the abdomen wall and covers organs in the abdomen. Part of the peritoneum is close to the ovaries and fallopian tubes.

The most common type of ovarian cancer is called ovarian epithelial cancer. It begins in the tissue that covers the ovaries. Cancer sometimes begins at the end of the fallopian tube near the ovary and spreads to the ovary. Cancer can also begin in the peritoneum and spread to the ovary. The stages and treatment are the same for ovarian epithelial, fallopian tube, and primary peritoneal cancers.

Another type of ovarian cancer is ovarian germ cell tumor, which is much less common. It begins in the germ (egg) cells in the ovary. Ovarian low malignant potential tumor (OLMPT) is a type of ovarian disease in which abnormal cells form in the tissue that covers the ovaries. OLMPT rarely becomes cancer.

Cancers of the ovaries, fallopian tubes, and primary peritoneum are the fifth leading cause of cancer death in women in the U.S. These cancers are often found at advanced stages. This is partly because they may not cause early signs or symptoms and there are no good screening tests for them…”

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8.      https://www.cancer.gov/about-cancer/diagnosis-staging/prognosis

“Oncologist Anthony L. Back, M.D., a national expert on doctor-patient communications, talks with one of his patients about what she'd like to know of her prognosis.  Credit: National Cancer Institute

If you have cancer, you may have questions about how serious your cancer is and your chances of survival. The estimate of how the disease will go for you is called prognosis. It can be hard to understand what prognosis means and also hard to talk about, even for doctors.

On This Page

• Many Factors Can Affect Your Prognosis
• Seeking Information About Your Prognosis Is a Personal Decision
• Understanding Statistics About Survival
• If You Decide Not to Have Treatment
• Understanding the Difference Between Cure and Remission
• Video Series…”

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  9.  https://www.cancer.gov/about-cancer/diagnosis-staging/questions

“Questions to Ask Your Doctor about Your Diagnosis

Learning that you have cancer can be a shock and you may feel overwhelmed at first. When you meet with your doctor, you will hear a lot of information. These questions may help you learn more about your cancer and what you can expect next.

• What type of cancer do I have?
• What is the stage of my cancer?
• Has it spread to other areas of my body?
• Will I need more tests before treatment begins? Which ones?
• Will I need a specialist(s) for my cancer treatment?
• Will you help me find a doctor to give me another opinion on the best treatment plan for me?
• How serious is my cancer?
• What are my chances of survival?

For questions about other topics, see our complete list of Questions to Ask Your Doctor about Cancer…”

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10.   https://www.cancercenter.com/ovarian-cancer/

[My note here:  This doesn’t mean I recommend CTCA above all others, I just like the way they explain ovarian cancer treatment at their facility.]

“If you’ve been diagnosed with ovarian cancer or have been told that you may have cancer, staging the cancer to determine your treatment plan is essential. At Cancer Treatment Centers of America^® (CTCA), our gynecologic oncologists are trained and experienced in treating all stages of ovarian cancer, and they will work with you to design a care plan that is tailored to your needs and treatment goals.

Our gynecologic oncologists will lead your multidisciplinary care team, managing every aspect of your treatment, from performing tumor-removal surgery to administering chemotherapy, immunotherapy and/or hormone therapy. Your care team will also tailor your treatment plan based on your individual needs, such as incorporating fertility-preserving options if possible and helping you manage ovarian cancer-related side effects, like fatigue, nausea and neuropathy.

Explore this section to learn more about ovarian cancer, its symptoms, signs and the treatment options we offer…”

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