Ovarian Cancer~Questions I need 2 ask re my cancer diagnosis~Helpful "Homework" links~Put your Dr. o

In particular, Madeline236 wants to know what questions she should ask prior to being seen by a gynecological oncologist.  http://csn.cancer.org/node/306176

Since I have spoken to her on a separate posting, I think it would be beneficial if every one of us knew what questions to ask when we are seeing a doctor and we suspect that we may be having difficulties that may result in a diagnosis of gynecological cancer.

Here are several sites that will help each one of us to understand our specific diagnosis.  I am putting it here on a separate topic forum so that the specific heading will be a help to everyone who was as stunned and surprised as was I when I went to my local ER thinking I had a hernia.  Two hours later the diagnosis was “Peritoneal Carcinomatosis”!  You can all identify with that heart-dropping moment when you saw your name at the top of the report.  In that moment, the old song comes to mind, “Not my sister, not my brother, but it’s ME O LORD, standing in the need of prayer!  And then your life makes a 180° and you begin a journey in a totally different direction.  And as for me, I make no apologies for giving credit to the Lord for keeping me sane during these last 4 years now.  I’ve wrestled with a Stage IV diagnosis from the very beginning.  Now the questions are different this far along.  How long will I be able to enjoy some quality of life before the cancer advances to other major organs?  And the challenge for me is to live in the moment and not attend my funeral before the time.  After all, absent a miracle, my Stage IV is terminal at some point.

So it is the challenge for each of us who wear that badge, to do all the important things that we are able to do today, and not waste precious moments worrying about things over which we have NO control.  And let me tell you, that’s always easier “said” than done.  Once more, I will repeat a saying about “worry” that comes to mind when I travel ahead of “today.” 

“Worry is interest paid on a debt that is not yet due!”  I have to stop and ask myself is this helpful for my peace of mind TODAY?  And I ask the Lord to help me keep my mind focused on what I can do and be today that makes life most meaningful.

And I find those often giving me advice are those that have not wrestled with any “life-changing earth-shaking devastating diagnoses” such as we have.  Glibly, they say, “Well we’re all terminal at some point.”  To which I say, “Yes but it takes on a new urgency when you see YOUR name at the top.”  It’s not exactly like skinny folks who eat all they want and never get “fat” telling us who are “overweight” how to lose weight!  Don’t you just love those folks?  Well back to my comments. 

Not that “misery loves company” in the cancer world, but I’m not the only one with cancer.  Yes, it’s a devastating diagnosis, but we’re doing all we can do.  So tell yourself that you are not alone in this fight, and that there are survivors, and there are Stage IVs living years longer than first imagined.  Hopefully anyone reading this will lift their weary heads and find the grace to face another day.  And for those who think they may well be diagnosed with this cancer, please do all your homework.  You’ll have far fewer “what ifs?” 

Wishing you all the best.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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1.  http://health.usnews.com/health-care

In case you were not aware of this great site, it will give rankings of each hospital and their relevance in the disease you have been diagnosed with.  For instance one hospital might be ranked “nearer the top for cancer treatment in general” but then when you choose your specific cancer, it may not rank as high.  So if you choose a medical facility near your hospital, be sure you find the category of treatment you’re under.  For instance recently we did some research for a person that had considered it a plus to be accepted into MDAnderson for his Esophageal Cancer diagnosis. And yes, they do have a high ranking, but when we listed “Gastroenterology and GI Surgeries” another hospital nearby “Houston Methodist” ranked better than MDA for Minimally Invasive Esophagectomies.  So it pays to check out the hospital ranking for your particular diagnosis.  The family was quite surprised, and so were we.  So don’t go just on the name alone, be specific in finding out how the hospital ranks in treating your particular problem.

2.  http://health.usnews.com/doctors/location-index/gynecologic-oncologists

This is a comprehensive listing of gynecologic oncologists in each state.  Find your state and city and see who is trained.  Then check out their amount of training.  And as Tethys mentioned, find out how many surgeries (Cytoreductive Surgery CRS) for instance has that doctor performed.  I know that my husband and I counsel many Esophageal cancer patients that have just been diagnosed.  Many to their sorrow didn’t know there was more than one type of Esophagectomy, neither did they realize that one surgeon isn’t necessarily as well experienced as another.  So in my list of questions that need to be asked for EC patients would be how many Esophagectomies do you perform a year?  Another thing to remember is to seek out hospitals that rank high on the particular problem that you’re dealing with.  Also the bigger the hospitals, the better success rate because they deal with the more advanced and complicated problems.  And always find out if there are laparoscopic procedures to handle one’s particular diagnosis.  Some doctors have upgraded their skills, and some have not.  So depending on the doctor you choose, you may not be getting the most up-to-date treatment.  Another thing I think is important is to look up the biography of the doctor whom you have chosen.  Have they written extensively on the medical problems that you have?  Have those articles been accepted by reputable medical journals for publication?  Yes it takes doing some “homework” to know that you’ve done your best to be at the right place at the right time! 

There should always be a biographical sketch of the surgeons on any given hospital board.  I also like to consult other sites.  For instance, (3.  http://www.vitals.com/ ) will have a review of doctors, and in that composite, they will have excerpts of medical articles that have been written that were accepted for publication.  There are excerpts listed on that page that will give you an idea of how extensive their knowledge is relative to your particular diagnoses.  Larger hospitals who specialize in your specific diagnosis have better outcomes, quite obviously because they treat a larger volume of patients with that disease.

4.  http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer

“Hereditary Breast and Ovarian Cancer

Approved by the Cancer.Net Editorial Board, 11/2015

What is Hereditary Breast and Ovarian Cancer?

A diagnosis of Hereditary Breast and Ovarian Cancer Syndrome (HBOC)should be considered when there are multiple cases of breast cancer and/or ovarian cancer on the same side of the family. The chance that a family has HBOC increases in any of these situations:

One or more women are diagnosed at age 45 or younger

• One or more women are diagnosed with breast cancer before age 50 with additional family history of cancer, such as prostate cancer, melanoma, and pancreatic cancer
• There are breast and/or ovarian cancers in multiple generations on the same side of the family, such as having both a grandmother and an aunt on the father’s side both diagnosed with these cancers
• A woman is diagnosed with a second breast cancer in the same or the other breast  or has both breast and ovarian cancers
• A male relative is diagnosed with breast cancer
• There is a history of breast cancer, ovarian cancer and/or pancreatic cancer on the same side of the family
• There is a history of breast and/or ovarian, pancreatic, or male breast cancer in a family of Ashkenazi Jewish ancestry

What causes HBOC?

HBOC is an inherited genetic condition. This means that the cancer risk is passed from generation to generation in a family. Two genes are associated with the majority of HBOC families: BRCA1 and BRCA2. BRCA stands for BReast CAncer. Other, less common genes have also been associated with an increased risk of developing breast and other cancers, such as mutations in the TP53, PTEN, CDH1, ATM, CHEK2 or PALB2 tumor suppression genes and many others. Blood tests now include many of these genes in a single, multiple-gene panel test. A mutation (alteration) in either BRCA1 or BRCA2 gives a woman an increased lifetime risk of developing breast and ovarian cancers. Men with these gene mutations also have an increased risk of breast cancer and prostate cancer.  There is a slight increase in the risk of other cancers including pancreatic cancer and melanoma among carriers of BRCA1 or BRCA2 mutations. Not all families with multiple cases of breast and ovarian cancer have mutations in BRCA1 or BRCA2…”

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This is an excellent site, updated frequently, and covers extensively everything one needs to know about a particular cancer.  In this case, gynecological cancers.  But when you access the first page, choose your cancer, and then follow that specific listing.  And certainly most importantly will be your own “acceptance” of this cancer after its proper diagnosis, and then your own extensive research as to where you find yourself today.  Doctors don’t have time to babysit and spoon-feed patients, but when you appear informed and engaged you will command more respect from your specialists.  So be sure to ask for copies of all your scans, medical reports, etc. as you go along.  Write down the dates, and kinds of tests you are receiving.  If you aren’t being tested extensively, ask why not?  You will learn that you have to be your own advocate, intercessor, and researcher.  You will gain the respect of your medical team, and they will respect you as well for “taking possession” of your own cancer.  Then despite the news, good or bad, you will know that you exhausted all areas of treatment presently known for your particular cancer.

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5.  http://www.cancer.net/

6.  http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

7.  http://www.cancer.net/cancer-types/ovarian-cancer/view-all

“…Genetics. About 10% to 15% of ovarian, fallopian tube, and peritoneal cancers occur because a genetic mutation (harmful change) has been passed down within a family. A mutation in the BRCA1 or BRCA2 gene is associated with an increased risk of developing ovarian cancer. A woman with a BRCA1 mutation has approximately a 40% lifetime risk of breast cancer and a woman with a BRCA2 mutation has approximately a 10% to 20% lifetime risk of developing ovarian cancer. (A woman with an average risk has only a 1% to 2% lifetime risk of developing ovarian cancer). While less common, it is possible that BRCA-related ovarian cancer can occur in women who do not have a family history of either breast or ovarian cancer. It is recommended that all women with serous ovarian cancer under the age of 70 should consider genetic testing for BRCA1 and BRCA2, the genes related to Lynch Syndrome (see below), and other cancer risk genes even if they don’t have a family history. Read more about the BRCA1 and BRCA2 genes in this website’s section on hereditary breast and ovarian cancer…”

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8.  http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/diagnosis

“Ovarian, Fallopian Tube, and Peritoneal Cancer: Diagnosis

Approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis…

9.  http://my.clevelandclinic.org/services/ob-gyn-womens-health/departments-centers/gynecologic-oncology

“Did you know?

Women who seek the care of a specially trained gynecology oncology specialist before any surgical or medical treatment increase their odds for total cure…

What is a gynecologic oncologist?

A gynecologic oncologist is a physician first trained in obstetrics and gynecology who has an additional three to four years of training in gynecologic cancers including advanced surgery techniques and chemotherapy administration. These gynecologic oncology specialists use these skills to treat cancers of the female reproductive system.

Cleveland Clinic gynecologic oncologists are among approximately 1,000 physicians in the United States who are board certified in gynecologic oncology, as well as obstetrics and gynecology by the American Board of Obstetrics and Gynecology…”

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10.   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048204/

“…The majority of women who undergo surgery for an ovarian cyst or pelvic mass are treated in a community hospital by a gynaecologist or general surgeon. Although this is appropriate for patients who have a benign cyst, patients with a malignancy should be referred to a tertiary care centre with multidisciplinary teams specialised in ovarian cancer treatment.

A recent systematic review showed an improved outcome for patients with ovarian cancer when they were referred to, and surgically treated by, gynaecological oncologists (du Bois et al, 2009). Therefore, it is important to triage women with increased risk for ovarian cancer to the appropriate surgeon and centre.

CA125 is the most widely used tumour marker in ovarian cancer (Bast et al, 1983). The sensitivity and specificity of CA125 are far from ideal as its levels are raised in approximately 80% of all epithelial ovarian cancers (EOC) and in only 50% of stage I EOC (Zurawski et al, 1988). Therefore, CA125 is rarely used as a unique parameter in the prediction of malignancy. Usually, a combination of a patient's medical history, clinical examination results, imaging data and tumour marker profile is used to differentiate malignant ovarian masses from their benign counterparts. Ultrasound has an important role in differentiating between benign and malignant adnexal masses, but experience and proper training are of paramount importance in distinguishing both adnexal masses (Van Holsbeke et al, 2009). This highlights a major problem in that the centre with the least experience in dealing with malignant disease requires substantial experience in ultrasound to triage patients to a gynaecological oncologist…”

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11.  http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/questions-ask-doctor

“Ovarian, Fallopian Tube, and Peritoneal Cancer: Questions to Ask the Doctor

Approved by the Cancer.Net Editorial Board, 08/2016

ON THIS PAGE: You will find some questions to ask your doctor, or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the doctor is important for making informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

• What type of ovarian cancer, fallopian tube cancer, or peritoneal cancer do I have?

• Where did this cancer start?

• Can you explain my pathology report (laboratory test results) to me?

• What is the stage and grade of my cancer? What does this mean?

  Questions to ask about choosing a treatment and managing side effects

• What are my treatment options?

• What clinical trials are available to me? Where are they located, and how do I find out more about them?

• What treatment plan do you recommend? Why?

• What is the goal of each treatment? Is it to eliminate the cancer, help me feel better, or both?

• What are the possible side effects of each treatment, in the short term and the long term?

• Who will be part of my health care team, and what does each member do?

• Who will coordinate my overall treatment and follow-up care?

• How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

• Could this treatment affect my sex life? If so, how and for how long?

• Could this treatment affect my ability to become pregnant or bear a child in the future? If so, should I talk with a fertility specialist before cancer treatment begins?

• If I’m worried about managing the costs of cancer care, who can help me?

• What support services are available to me? To my family?

• Whom should I call for questions or problems?

• Is there anything else I should be asking?

  Questions to ask about having surgery

 

• What type of surgery will I have? Will lymph nodes be removed?

• How long will the operation take?

• How long will I be in the hospital?

• Can you describe what my recovery from surgery will be like?

• What are the possible long-term effects of having this surgery?

• Will I have chemotherapy after the surgery?

  Questions to ask about having chemotherapy or radiation therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• What side effects can I expect during treatment?

• What are the possible long-term effects of having this treatment?

• What can be done to relieve the side effects?

  Questions to ask about planning follow-up care

• What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the cancer treatment I received?

• What follow-up tests will I need, and how often will I need them?

• How do I get a treatment summary and survivorship care plan to keep in my personal records?

• Who will coordinate my follow-up care?

• What survivorship support services are available to me? To my family?

• How can I keep myself as healthy as possible during treatment?

• Why are ovarian cancer, fallopian tube cancer, and peritoneal cancer called “chronic diseases”?

        Should other women in my family be tested regularly for this type of cancer?

• Should other women in my family be tested for the BRCA1 or BRCA2 gene?”

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