Dear Elaine:

You’re certainly a woman of few words.  Since your page is “blank”, I can’t even use my “reading-between-the-line” skills!

We all can identify with your emotional state.  Many of us here went to the doctor because we had “a funny feeling that something wasn’t just quite right”.  Then we came home with a surprising and devastating diagnosis of cancer.  So even without a word, we all know how you feel.  After you get accustomed to a new situation in your life, and know that the word “cancer” is yours to own, how you handle the future will depend on your attitude and your choice of doctors.  Of course, we hope you have had a SECOND opinion, because first ones are frequently wrong, according to the Mayo Clinic article which was published this past April.  (See reference below.)  So we hope you have found a well-trained gynecologic oncologist in a hospital with a good reputation for knowing how to treat Peritoneal Cancer patients.    

Not sure how your past life has been, but the future will be quite different. You will acclimate to your new situation more quickly and have more peace if you concentrate on the things you still have to be thankful for, instead of bemoaning and groaning and complaining about the things you no longer have, or can no longer do.  The choice is yours.  Having a good cry can be therapeutic, just don’t constantly cry on someone’s shoulder and wear a T-shirt that says “Woe is me!” When I look around me I constantly see people that are contending with worse problems than I have, even though I am a Stage IV Peritoneal Carcinomatosis/Ovarian woman.

Since you’re understandably still in a state of shock, you may not know as much as you would like about Peritoneal Cancer.  And just know that every day is not going to be a “Don’t-Worry- Be-Happy” day.  As a person of faith, it is still a mental battle for me to stay focused on the day God has given me, and not rush ahead and borrow troubles from tomorrow.  As much as I would like to be cancer free, I am not, and the probabilities of further metastasis are very real.

All I want to say at this time is that we are here to help other patients tread the rough waters.  Although we primarily think that we women are the only ones with peritoneal cancer, we are not.  It can come from another primary organ and then decide to take up residence in the peritoneal cavity.  Men have PC as well.  But what matters is how we treat what we have no matter where it started.  For that reason, I’ve given you some references below that may be helpful.  On Thanksgiving 2017 my family and I celebrated my still being “alive” 5 years from the date of my initial diagnosis in Thanksgiving of 2012.  Really—I never believed I would still be alive today, but my times are in God’s hands.  My problem is to stay focused, and not run ahead of Him and discount His ability to give me some times of a good quality of life even with my Stage IV cancer.   As for me, I have a plaque on my wall that reads:

“When you go to bed at night, give your troubles to the Lord.  He’ll be up all night anyway!”

It makes a world of difference for me.  And I’m most thankful this year that I can spend one more Christmas with my loved ones.  Next year isn’t scheduled to be all “happy times” so I need to make every day count and today is the only day I have.  Look around you and try to make someone else happy.  I’m sure God has blessed you with unique abilities that no other person possesses.  Major on being that person and things will go better for you—they do for me.

Troubles can make us or break us, depending on how we choose to confront them.  It’s our prayer that you will be able to withstand the chemo treatments because right now it is “the only game in town!”  “Cytoreductive surgery may be in the future, but you haven’t told us enough to really know what is planned in the way of treatments for you.  So we’ll just go with what we know so far, and basically that will be about chemotherapy.  It’s always exciting to read about some new drug or new discovery that holds promise for a cure for cancer, but for now we have to use the ones we have.  Who knows one day they may find a way to cure Peritoneal Cancer, but I’ll rejoice over any new development that lends itself to making the patient better able to battle the forces they must contend with.

Come back anytime Elaine.  Someone is always home.

Love & prayers,

Loretta

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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…”

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2.      https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq

 “Ovarian Epithelial, Fallopian Tube, and Primary Peritoneal Cancer Treatment (PDQ®)–Patient Version…

STIONS

General Information about Ovarian Epithelial, Fallopian Tube, and Primary Peritoneal Cancer…

KEY POINTS

Ovarian epithelial cancer, fallopian tube cancer, and primary peritoneal cancer are diseases in which malignant (cancer) cells form in the tissue covering the ovary or lining the fallopian tube or peritoneum.

The ovaries are a pair of organs in the female reproductive system. They are in the pelvis, one on each side of the uterus (the hollow, pear-shaped organ where a fetus grows). Each ovary is about the size and shape of an almond. The ovaries make eggs and female hormones (chemicals that control the way certain cells or organs work).

The fallopian tubes are a pair of long, slender tubes, one on each side of the uterus. Eggs pass from the ovaries, through the fallopian tubes, to the uterus. Cancer sometimes begins at the end of the fallopian tube near the ovary and spreads to the ovary.

 The peritoneum is the tissue that lines the abdominal wall and covers organs in the abdomen. Primary peritoneal cancer is cancer that forms in the peritoneum and has not spread there from another part of the body. Cancer sometimes begins in the peritoneum and spreads to the ovary…”

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3.      https://www.cancer.gov/types/ovarian/research

Updates re advances in Ovarian cancer

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4.      http://csn.cancer.org/node/301646

“Hello again Brian,

This letter is an answer to what I promised you earlier about things I found helpful during my chemo sessions.  I decided to put it in a separate topic so that others might find the information useful as well.  Hopefully this will help you to understand what your Mom may experience during her chemo sessions.  It’s good to know that your Mom has tolerated her first chemo well…”

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5.      https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=85&contentid=p00554

Grading and Staging of Cancer

What is grading of cancer?

Histologic "grade" is sometimes used to describe what a cancer looks like microscopically. Most cancers are graded by how much they look like normal cells. Well-differentiated (low grade or grade I) tumors look more like normal tissue. Poorly differentiated (high grade or grade III) tumors look disorganized under the microscope and may behave more aggressively than grade I tumors. Those tumors that look neither well-differentiated nor poorly differentiated are designated moderately differentiated, or grade II. The histologic grade can suggest how slow growing (grade I) or aggressive (grade III) a tumor is. 

What is staging of cancer?

Once cancer is diagnosed, more tests will be done to find out the size of the tumor and whether the cancer cells have spread to other parts of the body. This testing is called staging. To plan treatment, a healthcare provider needs to know the stage of the disease. Stage refers to the extent, or the size, of the cancer and whether it has spread from where it started. Each cancer, by organ, has its own staging system. In most cases, the stage is labeled with 0 and Roman numerals I through IV, with stage IV being the most advanced stage…”

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6.      https://www.macmillan.org.uk/information-and-support/breast-cancer/treating/treatment-decisions/understanding-your-diagnosis/staging-and-grading.html

Staging And Grading

The stage of a cancer describes its size and if it has spread from where it started. This information affects the decisions you and your doctor make about your treatment. They won’t know the exact stage of the cancer until after your operation and any scans you may have had.

TNM staging

The TNM staging system gives the complete stage of the cancer:

• T describes the size of the tumour.
• N describes whether the cancer has spread to the lymph nodes and which nodes are involved. For example, N0 is no lymph nodes affected. N1 means there are cancer cells in 1–3 of the lymph nodes.
• M describes if the cancer has spread to another part of the body. For example, M0 means the cancer has not spread (metastasised) to other parts of the body…
  • The grade of a cancer gives an idea of how quickly it might grow. The grade is decided based on what the cancer cells look like under a microscope compared with normal cells. Knowing the grade helps your doctor decide which other treatments you need after surgery…”

·         Grading

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 7.      https://www.youtube.com/watch?v=UCNx78zIrwU

8.      https://www.youtube.com/watch?annotation_id=annotation_2713355525&feature=iv&src_vid=R0GckcxrrX4&v=XrIUP-1eFUk

Cleveland Clinic - Published on Oct 8, 2015

In this video, Stephen Grobmyer, MD, explains how these terms are often misunderstood by patients and what the real difference is.”

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 9.      http://chemocare.com/chemotherapy/what-is-chemotherapy/default.aspx

[Elaine-By following this site, you will be able to find the drugs that you are going to be taking, and the possible side effects.  So be sure to ask lots of questions so you can understand what is going on within your own body.  You need to be able to carry on intelligent discussions with your oncologist and make suggestions on how best you feel things are going.]

____________End of references for now – Most relate to the initial diagnosis_________

I to got that same diagnosis last year on February 20 2016 went to ER because I had such a pain and cou not get out of bed. They did CT scan seen my wonderful Oncologist while I was in there. We cried at first a lot and then I had to realize even with all the Drs. and all the support I had from my family and friends I was the only one that could get myself through this so never give up on yourself it’s tough but you can get through it. I love my family dearly but I have to have the strength to keep going and I told myself this every time I go for chemo I just act like I’m going to see friends and after awhile they are my best friends.