Newly Diagnosed

Dear  Cruisin1:

          Well, well since you asked!  Allow me to introduce myself as a 77 yr. old lady first diagnosed with Peritoneal Carcinomatosis in November of 2012 when I had a CT Scan here in Virginia Beach.  As soon as I saw the report, I recognized cancer terms since my husband was diagnosed with Esophageal Cancer, Stage III, back in November of 2002.

          At that time, we went for a SECOND OPINION at the University of Pittsburgh Medical Center (UPMC) since Dr. James D. Luketich was having great success with a totally laparoscopic Minimally Invasive Esophagectomy that he first pioneered in the mid-90s. 

          The miracle is that my husband is still cancer free now into his 14^th year of remission.  Consequently, I contacted UPMC for a SECOND OPINION when I learned of my terminal diagnosis.   Three weeks later (December 2012) we were at UPMC for exploratory surgery.  There a PET/CT scan revealed that the cancer was also in my ovaries.  However, the tumors in my abdomen were too numerous and too large to do Cytoreductive Surgery (CRS).

          Their advice was for me to return home and do chemotherapy.  And so I did.   Subsequent scans revealed that the tumors had been reduced by Carboplatin/Taxol regimen to an operable level.  So on July 1, 2013 I had CRS surgery there in Pittsburgh. 

          Now this was never intended to be “curative” but rather to eliminate “non-essential” organs to which the cancer could spread.  It would be 2 years from that date before I would need to make another decision re treatment since I was having symptoms indicative of intestinal blockage.  I completed the 2^nd regimen of Carbo/Taxol on 9/25/15.

          Presently my CA-125 is rising quite rapidly, but I am not going to make a choice for more treatments till I feel I absolutely have because I am enjoying a good quality of life presently.  Now I’m fully aware that my diagnosis is terminal, but I haven’t stopped living yet!  Neither should you.  Your confusion and bewilderment is understandable.  We don’t like to say “Misery loves company”, but all of us here have had our own “jarring disconcerting introduction” to Ovarian Cancer, and we do understand. 

          Below my name you will find some references that should be helpful for you to determine which way to go.  The Cancer.Net site is very “user friendly” and easy to understand.  When you go there, take a look at the left hand column.  There you will see different categories of information regarding Ovarian Cancer.  But first I have just a couple of questions.

            Have you already handed in your resignation?  Since school is practically over for this year, might you have been able to have extended leave, or is your tenure too brief thus far for that possibility?  Of all the options you mentioned, if it were me, I would “give it my best shot” before choosing the “DO NOTHING” option.  The cost of treatment is going to be great—but you’re WORTH IT.  You’ve got a 9-year old young lady who wants you around as much as you want to be here for her.  So give serious thought to “choose to cruise” as your name seems to imply!  Only God knows how this will all turn out.  So don’t write your obituary yet!

            Who said low grade serous wasn’t receptive to chemotherapy?  Is this anything that might pertain to a diagnosis like yours? 

  NIH article: http://www.ncbi.nlm.nih.gov/pubmed/23714500

  “The life and times of low-grade serous carcinoma of the ovary”.

  “…Primary treatment of low-grade serous carcinoma includes surgery plus platinum-based chemotherapy (either adjuvant or neoadjuvant). Clinical behavior is characterized by young age at diagnosis, relative chemo resistance, and prolonged overall survival. Current options for treatment of relapsed disease include secondary cytoreduction in selected patients, salvage chemotherapy, or hormone therapy. A recently completed trial of a MEK inhibitor for women with recurrent disease demonstrated promising activity. Future directions will include further investigations of the molecular biology and biomarker-driven clinical trials with targeted agent monotherapy and combinations…”

Perhaps you might like to ask your oncologist what this is all about.  “Neo-adjuvant” is “before”, whereas adjuvant is “after”.  Seems to me this “abstract” is speaking of some kind of chemo that can be considered either before or after surgery.  Anyway, I would check it out if it were me.

           Incidentally, my thoughts and sometimes “unasked-for” advice is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition. But I have really been able to understand my own diagnoses so much better by consulting reputable web sites.  I then discuss the things I learn with my Oncologist, and he always takes the time to answer every question I have.  My husband always accompanies me, and he usually turns on the camera and does a tape of the conversations.  I have taken lots of pictures and tapes, none of them “undercover.”  My oncologist is happy to have me tape our talks.  Then when we get home we can replay them and remember everything he said. Sometimes I’m sad and sometimes I’m glad, depending on the conversation I’ve just had with the doctor. 

          I also do personal tapes at intervals to remind me of “where I am” and how far the Lord has brought me when I could have died already.  We’ve all got “unfinished” things to do and places we would like to go besides the doctor’s office!  So cram a whole lot of livin’ in each day that God gives you.  He will give you the strength to persevere.  Lots of students are going to be watching and listening to you as you teach them one of life’s greatest lessons!  “How to Live, Laugh & Love even when Cancer wants you to CRY!

         My heart dropped when I saw the choices you were given.  The old saying, “Better to have loved and lost than never have to loved at all” could be slightly reworded for you—“Better to have tried and lost than never to have tried at all. “Give it all you’ve got. 

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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 References to consider:

1. http://www.cancer.net/cancer-types/ovarian-cancer/stages-and-grades

“Ovarian Cancer: Stages and Grades

Approved by the Cancer.Net Editorial Board, 04/2015

          “ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. In addition, this section covers the grades which describes the difference between cancerous tissue and healthy tissue. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Staging is when the doctor maps out where the cancer is in your body. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer. In addition, treatment recommendations may vary even for ovarian cancer of the same stage due to other important factors.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

Tumor (T): How large is the primary tumor? Where is it located?

Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

The results are combined to determine the stage of cancer for each person. There are four stages: stages I through IV (one through four). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.  Here are more details on each part of the TNM system for ovarian cancer:

Tumor (T)

          Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the size and location of the tumor. Some stages are also divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.

TX: The primary tumor cannot be evaluated.

T0 (T plus zero): There is no tumor in the ovary.

T1: The tumor is limited to one or both ovaries.

T1a: The tumor is contained within one ovary. No part of the tumor has spread to the surface of the ovary, and no cancer cells are found in the abdominal fluid.

T1b: There are encapsulated (self-contained) tumors in both ovaries, but no tumor is touching an ovarian surface. No cancer cells are found in the abdominal fluid.

T1c: The tumor is in one or both ovaries, but the capsule has ruptured (burst), or the tumor has spread to the ovarian surface, or cancer cells are found in the abdominal fluid.

T2: The tumor involves one or both ovaries and has spread into the pelvis.

T2a: The tumor has grown into the uterus and/or fallopian tubes, but no cancer cells are found in the abdominal fluid.

T2b: There is cancer in other pelvic tissue, but no cancer cells are found in the abdominal fluid.

T2c: The tumor has grown into the pelvic area, such as in T2a or T2b, but cancer cells also are detected in the abdominal fluid.

T3: The tumor involves one or both ovaries and has spread microscopically (cancerous cells can be seen when tissue or fluid sample is viewed under a microscope) into the abdominal area outside the pelvis or has spread to pelvic lymph nodes.

T3a: Microscopic metastasis is in the peritoneal area (the tissue that lines the abdominal wall and covers most of the organs in the abdomen) beyond the pelvis.

T3b: Metastasis measuring 2 centimeters (cm), which is a little less than one inch, or smaller is discovered outside the pelvis.

T3c: Metastasis larger than 2 cm is in areas outside the pelvis and/or the cancer has spread to the regional nodes (pelvic or paraortic) lymph nodes…

Cancer stage grouping

          Doctors assign the stage of the cancer by combining the T, N, and M classifications. In addition, the FIGO system, or the Federation Internationale de Gynecologie et d'Obstetrique, is another standard system used by most doctors to stage ovarian cancer. This system uses Roman numerals.

Stage I: This stage describes cancer that is located only in the ovaries (T1, N0, M0).

Stage IA: The cancer is encapsulated and is located in only one ovary with no spread to pelvic lymph nodes or other parts of the body (T1a, N0, M0).

Stage IB: The cancer is encapsulated and is located in both ovaries with no spread to pelvic lymph nodes or other parts of the body (T1b, N0, M0).

Stage IC: The cancer is in one or both ovaries with either a ruptured capsule or tumor spread to the ovarian surface or cancerous cells in the abdominal fluid (T1c, N0, M0).

Stage II: The cancer is in one or both ovaries and has grown into the pelvis (T2, N0, M0).

Stage IIA: The cancer has grown into the uterus or fallopian tubes, but not to the pelvic lymph nodes or distant organs (T2a, N0, M0).

Stage IIB: The cancer has spread to other pelvic tissue, but not to lymph nodes or distant organs (T2b, N0, M0).

Stage IIC: The cancer has spread into the pelvic area and is shedding cancer cells into the abdominal fluid (T2c, N0, M0).

Stage III: The cancer is located in one or both ovaries and the pelvis and has spread into the peritoneum (T3, N0, M0).

Stage IIIA: Thecancer has spread microscopically into the peritoneal cavity (T3, N0, M0).

Stage IIIB: The cancer has spread into the peritoneal area with areas of tumor growth that are 2 cm or smaller (T3b, N0, M0).

Stage IIIC: This stage describes any cancer that has spread into the peritoneal area with areas of tumor growth larger than 2 cm (T3c, N0, M0). Or, the cancer has spread to the lymph nodes in the retroperitoneal or inguinal areas (any T, N1, M0).

Stage IV: This stage describes any cancer that has spread to distant organs (any T, any N, M1)…

Grade (G)

Doctors also describe this type of cancer by its grade (G), which describes how much cancer cells look like healthy cells when viewed under a microscope. The doctor compares the cancerous tissue with healthy tissue. This helps the doctor to predict how quickly the cancer may spread and can factor into making treatment decisions. Healthy tissue usually contains many different types of cells grouped together.

If the cancer looks similar to healthy tissue and contains different cell groupings, it is called differentiated or a low-grade tumor.

 If the cancerous tissue looks very different from healthy tissue, it is called poorly differentiated or a high-grade tumor.

The cancer’s grade may help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade, the better the prognosis.”

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2.  http://www.cancer.net/cancer-types/ovarian-cancer/questions-ask-doctor

“Ovarian Cancer: Questions to Ask the Doctor

Approved by the Cancer.Net Editorial Board, 04/2015

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. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make 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 also 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…”

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 3.  http://www.medpagetoday.com/clinical-context/GynecologicCancers/56872

(MY PERSONAL NOTE—from my reading of this report, different regimens of chemo were tested in an effort to extend a longer period of progression free survival.  There was obviously deep disappointment with the results.  This report just came out March 22, 2016.  It says in effect, three different clinical trials (all including bevacizumab AVASTIN) have failed to show any significant increase in “progression free survival” (PFS) in comparison with other trials conducted 10 years ago.

“Optimal Chemo for Ovarian Cancer Fails to Emerge

No PFS difference among three regimens evaluated in key trial

by Charles Bankhead - Staff Writer, MedPage Today

Action Points

• Note that these studies were published as abstracts and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

Results of a long-awaited ovarian cancer trial failed to show an advantage for any of three chemotherapy regimens.

Note that the regimens -- involving combinations of intraperitoneal (IP) and intravenous (IV) chemotherapy plus bevacizumab (Avastin) -- led to a median progression-free survival of 27 to 29 months in patients with optimally debulked stage II-III disease.

SAN DIEGO -- A roomful of gynecologic oncologists walked away disappointed after results of a long-awaited ovarian cancer trial failed to show an advantage for any of three chemotherapy regimens.

The regimens -- involving combinations of intraperitoneal (IP) and intravenous (IV) chemotherapy plus bevacizumab (Avastin) -- led to a median progression-free survival (PFS) of 27 to 29 months in patients with optimally debulked stage II-III disease. An analysis limited to patients with optimal stage III disease yielded median PFS values of 31 to 34 months…”

The results were a far cry from the 60-month median PFS in optimally debulked patients achieved with a higher dose of IP cisplatin in the Gynecologic Oncology Group (GOG) 172 trial reported more than a decade ago, and the three regimens' median PFS values remained similar to the 24-month median for all patients in GOG 172…

Trial Results

Walker reported findings from the GOG 252, the latest attempt to capture the unprecedented survival benefit observed in GOG 172 while sparing patients the toxicity associated with high-dose cisplatin: Only 42% of patients randomized to IP cisplatin 100 mg/m² plus IV paclitaxel completed six cycles of therapy.

Results of the GOG 218 evaluation of bevacizumab further complicated efforts to replicate GOG 172 efficacy with less toxicity. GOG 218 showed a significant improvement in PFS with the angiogenesis inhibitor among patients with advanced ovarian cancer.

GOG 252 involved women with stage II-III epithelial carcinoma of the ovary, fallopian tube, or peritoneal cavity. All patients underwent optimal surgical debulking to 1 cm or less residual disease by surgeon report. Patients were then randomized to one of three chemotherapy regimens:

Dose-dense IV paclitaxel, IV carboplatin, and bevacizumab (reference arm)

Dose-dense IV paclitaxel, IP carboplatin, and bevacizumab

Standard IV paclitaxel followed by reduced-dose IP paclitaxel, IP cisplatin, and bevacizumab…”

_________________________End of References______________

cruisin1 said:

Thanks for all of the

Thanks for all of the responses.  I finally have a treatment plan and have started hormones.  No chemo for me, since it is so very ineffective.  My CA-125 went from 109 at surgery down to a 24 right now, prior to starting hormones.  I am going back to work and have two cruises booked for this summer.  Hoping this ugly disease doesn't rear it's head for a good, long time.  

Good that you are on a path you are comfortable with.  LGSC grows very slowly and the 5 year survival rate is quite good.   I can tell you I feel better than ever a year in, and expect to continue feeling good.  The cruises sound awesome!