Joanna99's Journey with Primary Peritoneal Carcinoma

Patient: Ovarian and Fallopian Tube Cancer > Primary Peritoneal Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 5 years ago, Female, Age: 70, Stage IIIC

  1. 1
    • Joanna99
    • Experience with Primary Peritoneal Ca...
    over 4 years ago
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    Diagnosed

    Oh No

    I was a very active, healthy almost 65 year old, who had all her female and heart and stroke wellness checkups up to date. I had been dieting for 7 months and had lost 40 pounds and was really feeling great. If it wasn't for the suddenly expanding abdomen over about a 4 week period, and suddenly not being able to lose more weight, I probably would not have called a nurse hotline and was told be sure to get a checkup within 10 days. I knew something was not right. I got an appt. the next day and was sent for a CT Scan the following day, and then was sent to the emergency room with no explanation. After being admitted to the ER, a good looking doctor came in, sat down on the bed next to me, said he had read the CT report, took my hand and said, "You have cancer, and it's advanced." OH, NO! How can that be? I have no symptons except the bulging abdomen. How can you tell me I have stage IV cancer. No one can be that sick and be as physically active and feel as good as I do and have State IV cancer. I was admitted to the hospital for more tests. All my family showed up like I was on my death bed, and remarked, "You look too good. What's going on?" I was finally released from the hospital for the weekend and followed up with the doctor the next week. I then requested a second opinion. The local oncologist was 99% sure that it was ovarian Stage IV as the CT scan showed a spot on the liver and vertebrae as well as problems with ovaries. I got a second opinion at the City of Hope, a hospital specializing in cancer treatment and that doctor said he was not convinced that it was ovarian cancer, but I definitely had cancer.

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  2. 2
    • Joanna99
    • Experience with Primary Peritoneal Ca...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The gynocological oncologist surgeon agreed with the local oncologist to do 9 weeks of chemo having Paclitaxel and Carboplatin, then retest my CA-125 and CT scan. The original CA-125 score was 130. Really not that high according to the specialist, but out of the normal range of 0-35. I experienced few side effects from the chemo. Did get tired easily and had some nausea, but not bad, and some constipation. I had no lose of appetite, and infact have regained 30 of the 50 pounds I had lost from my highest weight. I have not completely lost my hair, but may now that I am on my second round of chemo.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • Joanna99
    • Experience with Primary Peritoneal Ca...
    over 4 years ago
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    Debulking surgery

    Procedure or Surgery

    The debulking included complete removal of ovaries, tubes, uterus, appendix, omentum, at least one lymph node, and samples from outside the liver and sigmoid. I was left with a 10 inch scar vertically down my abdomen. I guess I shouldn't be so vain, if it was necessary to give me more years. The disturbing thing about this whole experience is the uncertainty. I wanted black and white answers and I wasn't getting them. That's why medicine is called a "practice." Turns out, Ovarian cancer can not really be diagnosed without surgery. After surgery, my diagnosis was changed to Primary Peritoneal Carcinoma stage IIIC because it was not inside the ovaries or inside anything, but merely attaching itself to the outside of basically everywhere inside the abdominal cavity. I was in the hospital for 6 days and as soon as I was able to poop, they were ready to send me home. I was up and walking, slowly, but walking soon. As far as the side effects, I would equate it with having a baby. You say I will never put myself through this again, but within a few days, you will forget about it. As far as impact to daily life, YES, this experience has definitely constrained my ability to travel, but hopefully I will be back on the road again.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • Joanna99
    • Experience with Primary Peritoneal Ca...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Only 4 weeks after surgery I resumed the same chemo schedule as before. 9 weeks was planned, but since I am having few side effects, the oncologist may be extending it another 6 weeks. I just had another CA-125 test and my score was 3.8. It was 4.6 after the chemo before surgery and 12 after surgery. Crazy! Hair is still thinning, but no need for a wig yet. Hope it can hold out for another 6 weeks! I had really long hair all my life, and actually like my "Jaime Lee Curtis" crop.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  5. 5
    • Joanna99
    • Experience with Primary Peritoneal Ca...
    over 2 years ago
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    Other

    Clinical Trial

    When the CT and CA-125 revealed that my primary peritoneal cancer had returned last February, both the oncologist and surgeon said that surgery was not recommended. More chemo was my only hope. Now that I have finished 6 cycles of chemo and the CT does still show some signs of cancer, both the oncologist and surgeon are recommending surgery. I'm confused. What has changed? Answers I have gotten: 1) Chemo is not ever going to stop the cancer, only put me in remission and each remission will be shorter than the previous 2) the accumulation of chemo will increase the side effects until they are unbearable 3) I have recovered very well after all surgeries 4) they call be a "tough bird" 5) adding the HIPEC procedure to the surgery could have very beneficial results 6) I will be part of a clinical trial so hopefully that will help others. I have decided to go ahead with the surgery with HIPEC.

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