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Tessy3~Your ltr 01-19-19~since orig post was "lost", here is reprint-Valuable references re Ovarian Cancer 4U & Sis!

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

HERE IS "Tessy3" letter and my reply.  I'm very upset about all the valuable information that is missing.  Since I keep a record of the posting as well as my reply in my WORD file, I've decided to reprint this.  I gave Tessy so many valuable references to help her understand all about Ovarian Cancer.  So just in case she didn't make a copy of my letter, she will certainly need to have a copy because it will cover all the bases for Ovarian Cancer patients.  I hope she has done a lot of research by now and found the best place for her sister to be treated.  But I can't e-mail her either because the e-mail file was "wiped out" as well.  

Tessy3 - Jan 19, 2019 - 3:01 pm

 https://csn.cancer.org/node/319247

Hello all, we're new to ovarian cancer and know NOTHING! Sis was just diagnosed last week. PET scan is this week, and surgery is scheduled to remove a 10 cm OC mass at end of week. I am here to try and get some advice on the following concerns of my sis...

1) Is it safe to go into surgery without receiving a second opinion first?

2) Can one hospital's PET scan machine be better quality than another and impact result accuracy?

3) Current oncologist and surgical oncologist are not gynecologic oncologist-centric. Is it important to go to a OC oncology specialist?

5) Should 2nd opinion still be sought, regarding post surgery treatment options? Or should that really be done before the surgery?

6) Any experiences with Lattimore Medical, Rochester NY?

Any other "logistics" we need to consider at this point in the process???

Thanks a million for ANY insights you can provide!!!

______________________________________________________________ 

MY REPLY: January 20, 2019

Welcome “Tessy3”.

This is a very long letter in answer to your questions posed at this link: 

https://csn.cancer.org/node/319247 yesterday, January 19, 2019. 

You have written to a group that were as shocked as you were when the diagnosis of Ovarian Cancer was given.  When we went to our doctor, or hospital, we were not expecting to come home with a cancer diagnosis.  As for me, I went to my local hospital emergency room.  My symptoms came on quite quickly—groin pain and mild discomfort.  “Maybe it’s a hernia I thought to myself.”  So even though it was just a couple of days before Thanksgiving in 2012, I thought I had better “get it checked it out.”  Two hours after arriving, and a CT scan report, the shock set in.  The diagnosis was a Stage IV cancer, “Peritoneal Carcinomatosis!”  Usually when the tumors have appeared in the peritoneal fluid in the abdomen, the actual primary source is usually somewhere else.  Knowing how extremely important it is to have a second opinion ASAP, at Christmas, I went to the University of Pittsburgh Medical Center for a second opinion.  There a PET scan and exploratory surgery revealed that the cancer was in my ovaries as well.  So in my case, doctors believe that it most likely first came from my ovaries.  Cells from the ovaries can migrate to the peritoneal cavity and may lie dormant for a period of time before becoming cancerous.

The final outcome of UPMC’s opinion was that I should come home to Virginia Beach to undergo chemotherapy treatments prior to considering surgery.  After having a “medi-port” inserted here, I began chemotherapy treatments of Carboplatin & Paclitaxel (Taxol).  This combination has been proven to be one of the best choice for most Ovarian cancer patients. 

Though it is difficult for me to give “short answers”, I will tell you that I am now down to the end of my treatment cycles.  Doxil is something I never wanted to take and if it has similar side effects of some of my sisters, I will stop it and go on hospice.  My oncologist has determined that based on the advancing tumors that continue to ravage my body, that most likely I have only “months to live.”  Now that is a sobering assessment of where Ovarian Cancer, Stage IV ends at some point.  So without going into detail, I will say that over the years since 2012, I have had 5 different sessions of the Carboplatin/Taxol treatments.  Each session consisted of 6 treatments—each one given at 3-week intervals.  Cytoreductive surgery and targeted radiation have been part of my treatment as well.  This has served to give me a relatively good quality of life up until now.  But the cancer moved faster and faster as time went by.  Now there are many new tumors in new places. 

Now I always have to say this, I am a true believer in God’s word and I committed my life to the Lord when I was 29.  I am now almost 80 years old.  Based on His promises and His sacrifice, I would go to Heaven when I died, but I never envisioned how my life would end.  As most of us can probably attest to, life’s struggles often intensify with the passing of time.  If nothing else, the natural onset of symptoms which “old age” brings happen to most of us.  But who thinks of ever becoming old or infirmed when youth is in full bloom and everything is coming up roses?  J

So without elaborating further on my own experience, I will attempt to help you with things I’ve learned “along the road.”  I will answer them in sequence as you have outlined them.  It goes without saying that anyone reading your letter and who is familiar with Ovarian Cancer will be filled with sympathy and hope for your sister.  Her prognosis will be commensurate with her staging, so it is absolutely necessary that thorough testing be done prior to any “knee-jerk” surgery in my view.  

Sincere love & prayers for your sis, you & other members of your family

Loretta Marshall (Peritoneal Carcinomatosis/Ovarian Cancer Stage IV- first diagnosed in 2012)

P.S.  This link is one of my favorites when trying to pronounce medical terms.  Note that it has an audio symbol plus a phonetical pronunciation along with a definition.  So you might want to create a shortcut to this link.

Moreover, I would suggest that someone always accompany your sister.  Ovarian cancer patients need an advocate and often an intercessor.  They are often traumatized to the point that they will not be able to absorb all that the doctor might tell them at the time of their visit.

Also, I would keep a diary of what is happening.  If nothing else, have a calendar and write down symptoms she experiences on any given day, and be sure to remind the doctor of those symptoms when visits are scheduled.  And don’t be afraid to ask questions.  Your sis should “take charge” of her own diagnosis.  It’s her life and her cancer. 

And ask for printouts of any findings for scans and tests as they are being performed.  When I go for a PET or CT scan, I tell the nurses that I want an extra copy of the scans for myself.  They will readily accommodate your wishes.  This will help you to have a more complete record to take with you for a SECOND opinion. 

 _____________________________________________________ 

1) IS IT SAFE TO GO INTO SURGERY WITHOUT RECEIVING A SECOND OPINION FIRST?

Personally, I would not want to be rushed into surgery without having a SECOND opinion.  I think it is unwise.  If thorough testing has not been done, how can the doctor’s know how extensive the cancer is?  Believe me, no one wants to go into surgery multiple times?  My surgeon at UPMC wanted me to have chemo first so as to reduce as many tumors as possible, so surgery would be more successful. 

Secondly, you will be interested to know that according to the Mayo clinic report cited here, only 12% of first opinions were considered correct.  88% had to be tweaked or changed altogether.  So would I want to go into surgery without a 2nd opinion ?—In a word “NO”

1.     https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

April 4, 2017 – “ROCHESTER, Minn. — Many patients come to Mayo Clinic for a second opinion or diagnosis confirmation before treatment for a complex condition. In a new study, Mayo Clinic reports that as many as 88 percent of those patients go home with a new or refined diagnosis – changing their care plan and potentially their lives.  Conversely, only 12 percent receive confirmation that the original diagnosis was complete and correct…”

_______________________________________________________ 

 2) CAN ONE HOSPITAL'S PET SCAN MACHINE BE BETTER QUALITY THAN ANOTHER AND IMPACT RESULT ACCURACY?

Depending on which hospital one goes to for testing, there can be differences in the sophistication of their equipment.  Note the reference below from Johns-Hopkins hospital relative to how PET scans are being used. 

2.     https://www.hopkinsmedicine.org/healthlibrary/test_procedures/neurological/positron_emission_tomography_pet_92,p07654

“…PET is also being used in conjunction with other diagnostic tests such as computed tomography (CAT scan) to provide more definitive information about malignant (cancerous) tumors and other lesions. The combination of PET and CT shows particular promise in the diagnosis and treatment of many types of cancer…

Certain factors or conditions may interfere with the accuracy of a PET scan. These factors include, but are not limited to, the following:

  • High blood glucose levels in diabetics
  • Caffeine, alcohol, or tobacco consumed within 24 hours of the procedure
  • Medications, such as insulin, tranquilizers, and sedatives

Notify your doctor if any of the above situations may apply to you…”

___________________________________________________________ 

3) CURRENT ONCOLOGIST AND SURGICAL ONCOLOGIST ARE NOT GYNECOLOGIC ONCOLOGIST-CENTRIC. IS IT IMPORTANT TO GO TO A OC ONCOLOGY SPECIALIST?

The short answer is YES.  It is important to seek the most qualified oncologist that treats Ovarian cancer.  In this instance, it would be a gynecologic oncologist.  Here are their qualifications.  Their expertise will be more extensive because it is their “specialty”. 

3.     https://www.sgo.org/patients-caregivers-survivors/what-is-a-gynecologic-oncologist/

“What is a gynecologic oncologist?

 

A gynecologic oncologist is a physician who specializes in diagnosing and treating cancers that are located on a woman’s reproductive organs. Gynecologic oncologists have completed obstetrics and gynecology residency and then pursued subspecialty training through a gynecologic oncology fellowship. Residency takes four years to complete, while fellowship involves three to four additional years of intensive training about surgical, chemotherapeutic, radiation, and research techniques that are important to providing the best care for gynecologic cancers. Physicians who complete this training are eligible to take both the obstetrics and gynecology board exam and the gynecologic oncology board exam.

The gynecologic oncologist serves as the captain of a woman’s gynecologic cancer care team. It is important to consult with a gynecologic oncologist before treatment is started so that the best treatment regimen is chosen for you.

Seek a Specialist

SGO’s Seek a Specialist includes actively practicing specialists in all professions related to gynecologic cancer…”

______________________________________________________ 

 4.     https://www.sgo.org/patients-caregivers-survivors/gynecologic-oncology-video/

“…On Your Side: The Gynecologic Cancer Care Team

To emphasize the importance of having women with gynecologic malignancies treated by a cancer care team headed by a gynecologic oncologist, SGO has developed a video for patients and their loved ones. This video, “On Your Side: The Gynecologic Cancer Care Team,” describes the roles of the various team members in the diagnosis, treatment and possible prevention of gynecologic cancers…”

________________________________________________________________ 

 

5) SHOULD 2ND OPINION STILL BE SOUGHT, REGARDING POST SURGERY TREATMENT OPTIONS? OR SHOULD THAT REALLY BE DONE BEFORE THE SURGERY?

Based on the Mayo Clinic in Rochester’s assessment of how many diagnoses are completely wrong, it would seem most logical that a thorough assessment of one’s cancer should be conducted PRIOR to commencing with surgery!  Although I realize the “urgency” with which we want to act once we’ve been diagnosed with cancer, sometimes the old adage, “Haste makes Waste” comes into play.  Even though I knew the severity of a “cancer diagnosis” having been caregiver to my husband during his own Esophageal Cancer experience, the first thing I wanted to do was “have a second opinion.”  Moreover, I wanted it to be with a reputable well-established medical facility that had Ovarian cancer as one of their specialties.  Just because a hospital has “cancer” in the title of their hospital does not mean that they have the facilities to treat “ALL” types of cancer.  This is where research is so important.

______________________________________________________ 

 

6) ANY EXPERIENCES WITH LATTIMORE MEDICAL, ROCHESTER NY?

5.     https://health.usnews.com/best-hospitals/rankings/gynecology

I note that Lattimore medical center is part of “Strong Memorial Hospital of the University of Rochester”.  You can read about Strong’s rating here.  Note that they are not ranked as a cancer specialty facility.   In the list of specialties, you will see that they only garner a 44.2% rating for cancer.  Consequently, A cursory glance at the top 50 hospitals ranking gynecology as one of their specialties according to the U.S.News World Health does not list Lattimore or Strong as among the top 50 hospitals for gynecological cancers.  This would make me think twice about having surgery there before other considerations and/or a second opinion. 

You might want to scan the list of hospitals that specialize in gynecology and see if there is one close to your home.  However, “closer to home” would not be my first priority, unless I had no choices as to travel and treatment options because of my insurance.  Note that Mayo Clinic in Rochester, MN is ranked as the best.

Mayo Clinic -  (507) 405-0312 | Rochester, MN 55902-1906

#1 in Adult Gynecology Hospitals

Mayo Clinic in Rochester, MN is nationally ranked in 15 adult specialties and 7 pediatric specialties.  Request Appointment 100.0/100 Gynecology Score  See Gynecology Scorecard…”

___________________________________________________________ 

ANY OTHER "LOGISTICS" WE NEED TO CONSIDER AT THIS POINT IN THE PROCESS???

 Among my many “research files” I have chosen some that you would be wise to read.  Now understand that when I answer someone, I do not expect them to be able to absorb all that is given to you.  It is more like a homework assignment for one that has the time to do their own research and are wondering where to begin.  So these are some references in that regard, but not in any particular order.

6.     https://health.usnews.com/health-news/patient-advice/articles/2014/10/09/12-questions-to-ask-when-youre-diagnosed-with-ovarian-cancer

12 Questions to Ask When You're Diagnosed with Ovarian Cancer

Where do you start when you're still reeling?

_______________________________________________ 

 How is ovarian cancer diagnosed and staged?  This is important before one “rushes” to the first hospital that has “cancer” in the name of their facility.

 7.     https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/staging.html

_________________________________________________ 

8.     https://www.cancertherapyadvisor.com/gynecologic-cancer/ovarian-cancer-asco-sgo-new-guidelines-treatment/article/514573/?DCMP=ILC-

______________________________________________ 

9.     https://www.cdc.gov/cancer/knowledge/pdf/cdc_gyn_comprehensive_brochure.pdf

“Get the facts about gynecologic cancer.”

________________________________________________ 

10.                         https://www.curetoday.com/cure-tv/ovarian-cancer-developments-in-2017

______________________________________________ 

11.                         https://ocrahope.org/patients/resources/glossary/#content

Glossary of terms that you will become familiar with.

_____________________________________________________ 

12.                        http://www.mayoclinic.org/diseases-conditions/ovarian-cancer/expert-answers/ovarian-cancer/faq-20057780

“Is ovarian cancer still possible after a hysterectomy?

Answers from Shannon K. Laughlin-Tommaso, M.D.

Yes, you still have a risk of ovarian cancer or a type of cancer that acts just like it (primary peritoneal cancer) if you've had a hysterectomy.

Your risk depends on the type of hysterectomy you had:

  • Partial hysterectomy or total hysterectomy. A partial hysterectomy removes your uterus, and a total hysterectomy removes your uterus and your cervix. Both procedures leave your ovaries intact, so you can still develop ovarian cancer.
  • Total hysterectomy with salpingo-oophorectomy. This procedure removes your cervix and uterus as well as both ovaries and fallopian tubes. This makes ovarian cancer less likely to occur, but it does not remove all risk.

You still have a small risk of what's called primary peritoneal cancer, which may result from ovarian cells that migrated to the peritoneal area during each menstrual cycle before your ovaries were removed. These cells can become cancerous later on. Alternatively, since the peritoneum and ovaries arise from the same tissues during embryonic development, it's possible that cancer could arise from the cells of the peritoneum.

Currently, there are no effective screening tests for ovarian cancer in women with an average risk of the disease. If you're concerned about your risk, discuss your options with your doctor.

With

Shannon K. Laughlin-Tommaso, M.D.”

_________________________________________________________  

13.                         https://www.drugs.com/health-guide/ovarian-cancer.html

“What Is It?

 Ovarian cancer is the uncontrolled growth of abnormal cells in the ovaries. Ovaries are the female reproductive organs that produce eggs. They also make the hormone estrogen. Ovarian cancer cells can form in three areas:

  • on an ovary's surface
  • in an ovary's egg-producing cells
  • in tissues within an ovary.

Tumors on the surface of an ovary are the most common.

Ovarian cancer often does not cause any symptoms until it has spread beyond the ovary. Doctors have a hard time detecting the disease during a pelvic exam before this late stage. That's why ovarian cancer leads to more deaths than any other cancer of the female reproductive system.

Even if the disease has spread, symptoms may be mild and attributed to other problems. Symptoms, such as frequent urination and bloating, are also vague. For these reasons, most ovarian cancers aren't diagnosed until the later stages of the disease. Researchers are trying to develop tests to detect ovarian cancer in its early stages, when it's more likely to be cured or controlled.

Doctors don't know exactly what causes ovarian cancer. However, some things increase a woman's risk of the disease. For example, the disease may be inherited. Women who have had a first-degree relative (sister, mother, or daughter) diagnosed with ovarian cancer are at high risk of getting it themselves. Women who have a relative who has had breast or colon cancer are also at high risk.

Certain groups of women, such as Jewish women of Eastern European descent, are more likely to carry the breast cancer genes BRCA1 and BRCA2. These genes are linked to ovarian cancer. Doctors can test for these genes.

The chances of developing ovarian cancer also increase with age. Most ovarian cancers occur in women over age 50. The highest risk is in women over 60. Women who have never had children are more likely to develop ovarian cancer, too…”

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

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

1.     Cancer Types

2.     Gynecologic Cancers

3.     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.

____________________________________________________________________ 

16.                        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…”

___________________________________________________ 

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

  “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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18.                        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…”

______________________________________________________________ 

19.                        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

_____________________________________________________ 

20.                        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…”

_____________________________________________________________ 

 

______________End of references___________________

 

 

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