Recurrence after 7 years

Tt1181

Hi there. I am new to the board and I'm writing on behalf of my mother.  In February 2009  she was diagnosed with stage one ovarian cancer. She had surgery and chemo and it was gone for seven years. This past February she had a CT scan due to some pelvic pain and they said she had a cyst. She went in for surgery this past Wednesday and it turns out it wasn't a cyst that was a buildup of fluid. They opened her up and drained her and found tumors all over her abdominal lining (peritoneal) . At first we thought we were given the worst news but after the oncologist said the good news is if she thinks the chemo will work to get rid of them so that she can have a remission for a few years again. She said although the statistics are 70% she is almost positive it will work. Then another oncologist came to see her in the hospital the day after and said it is usually 40%. I have to have help with the first oncoligist who did the surgery. Also because it is been so long that's why they think it will work for certain. Has anyone had a recurrence in the peritoneal?

debrajo

Hi!

So sorry about your Mother!  I am from the Uterine board, but we all jump in from time to time on other boards.  I believe Loretta Marshal is the one on here that can maybe help you.  If she doesn't check in soon, e-mail her through CSN at Lorettamarshal or go back and read some of her post.  She is a wealth of information!  Best, Debra(Jo)

LorettaMarshall

Tt1181~Cytoreductive surgery & chemo have prolonged my life!

Dear “Tt1181”

Sorry that I didn’t answer your letter before now.  You obviously hoped to find some answers for your Mom’s recurrence.  Her case is similar to mine in that her CT scan showed tumors in her peritoneal fluid in her abdomen.  However, unlike your mom, I had not been diagnosed with any previous cancer.  My cancer was Stage IV when it was discovered for the very first time.  Although you weren’t specific as to the exact surgery that was performed on your Mom, nor the type of chemotherapy, nor the exact name and stage of this new cancer occurrence, I am left to assume that either she had a complete hysterectomy, or perhaps just the ovaries were removed.  In any event, you will note in the article referenced below my name (reference 1) that Ovarian cancer recurrence can occur even AFTER the ovaries have been removed.

Recent research has indicated that Ovarian cancer may well have its origin in the fallopian tubes, so I wish I had undergone a complete hysterectomy at age 36, instead of just having my Uterus removed.  Now in 2012, I was shocked to learn that I had numerous cancerous tumors floating around in my peritoneal fluid.  The diagnosis was Peritoneal Carcinomatosis.  It’s a rare cancer but isn’t curable.  We can still pray for long periods of remission. 

Now when I went for a Second opinion 3 weeks after my first diagnosis at the University of Pittsburgh Medical Center, exploratory surgery revealed that my ovaries were cancerous as well.  So I actually don’t know whether my cancer first originated in my fallopian tubes, then proceeded to invade my ovaries, and then spread to the lining in the wall of my abdomen or whether it originated in the “lining” first and spread to the ovaries.  Either way, my cancer is here to stay till the Lord takes me home.  Once I discovered the cancer was that invasive, it really didn’t matter which came first, since the treatment is usually the same. 

Since my cancer was already in the advanced stage, my surgeon said that the tumors were too large and too numerous.  He advised me to come home, have chemotherapy treatments and perhaps they could be reduced to a size that I could have Cytoreductive Surgery (CRS).  Thankfully, my chemo treatments of Carboplatin & Taxol did cause a reduction in the size of my tumors, but not total eradication.

Surgery was performed on July 1, 2013 at UPMC.  This surgery was never intended to be “curative”, rather it was to remove “non-essential” organs to which the cancerous cells could infiltrate more organs within my abdomen.  It would not be until June 11, 2015 that my tumors would begin to multiply again. 

At the time of my surgery, I had my spleen, gallbladder, ovaries, fallopian tubes, omentum and parts of my intestines removed.  Although it is a major surgery, I was able to survive that and had a good period of time before cells began to grow again.  At one point, 3 new tumors occurred on the Caudate Lobe of my Liver.  A “Cyberknife” procedure completely eradicated those tumors.  So that was a blessing. 

Now it would appear that this is a recurrence from your mom’s initial diagnosis some 7 years ago.  Remember that I’m not a doctor, so just allow me to assume, based on the article mentioned below, that since no mention of abdominal cancerous cells was mentioned years ago, more probably, all the Ovarian cancer cells were not completely removed even though Mom’s ovary or ovaries were removed.   No one can pinpoint when a cell begins to become cancerous, only that it can multiply rapidly.  Initially, all cancerous cells may not be detected by scans.  Sometimes it is not until actual surgery is underway that “more” cells than first were evident can show up.  So by the report below, it would appear that a migration of cancerous cells from mom’s ovaries to the peritoneal lining has now occurred.

So while one surgeon says that she thinks that chemo will serve to “get rid” of them, I was never told that my chemo would eliminate the tumors.  I note that she is “almost positive” not “absolutely positive” that chemo will get rid of the tumors.  My surgeon, Dr. David Bartlett, told me that chemo could possibly reduce the number and size of them so that surgery could be possible to remove other organs before they were also infiltrated.  The chemo did indeed reduce them, but did not totally eliminate them.  But thankfully, they were reduced sufficiently to allow me to have surgery.

However, since that time, tumors still remain in my abdomen, and successive CT or PET/CT scans reveal that they are increasing in size.  I am thankful for the period of remission, so to speak, that I have enjoyed.  However, my CA-125 count has risen dramatically, so that something new is happening inside even now.  So as for me, I never expect to be cancer free.  My hope is that there will be long intervals of time in between treatments.

In that sense, inside my abdomen there still lies a ticking time so to speak.  I’ve never had a scan since my diagnosis that indicated there were no tumors present.  I can’t speak for your Mom, but I do think that chemotherapy will most likely reduce the number of tumors and give her a longer period of remission.  So in that respect, I agree that since she’s been healthy for these many years that her body would most likely be very responsive to the chemotherapy.  No matter the odds of 70% or 40%, I would say, “go for the treatments.”   So by now I hope the chemo is scheduled. 

And I would hope that she has a medi-port for the infusions.  It makes things so much easier. And I would also request hydration following each treatment.  There is so much more I could tell you in this letter, but you can read what I wrote to “Brian from the North”.  I had promised him I would share my chemo experience with him.  Hopefully, it would be of help to you as well.  So here is that link:  http://csn.cancer.org/node/301646

The second reference below deals with “rare cancers” and will be beneficial to you. Although your Mom was not initially a Primary Peritoneal Cancer (PPC), she now has cancer there.  Treatments will be similar to that of Ovarian Cancer.  If you have more questions, hopefully some of us here will be able to answer you.  And I sincerely wish for your mom a long, long period of remission.  God bless!

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

1.  http://www.healthline.com/health/cancer/ovarian-cancer-hysterectomy#1

“…Sometimes, the Fallopian tubes and both ovaries are removed during a hysterectomy. This is called salpingo-oophorectomy. Without ovaries, your risk of developing ovarian cancer is lower. But there’s still some risk.

That’s because ovarian cells can migrate to the peritoneal area, which is the area between the vagina and anus.

If this migration happened before your ovaries were removed, those cells remain behind. They can become cancerous at any time. Because they’re ovarian cells, the result is ovarian cancer. Cancer can also develop from cells in the peritoneum, the tissue lining the wall of your abdomen…”_______________________________________________________________

2.   http://www.cancerresearchuk.org/about-cancer/type/rare-cancers/rare-cancers-name/primary-peritoneal-carcinoma?script=true

“…The peritoneum-

The peritoneum is a layer of thin tissue that lines the abdomen and covers all of the organs within it, such as the bowel and the liver. The peritoneum protects the organs and acts as a barrier to infection. It has 2 layers. One layer lines the abdominal wall and is called the parietal layer. The other layer covers the organs and is called the visceral layer.

There is a small amount of fluid between the two layers, which separates them and allows them to slide over each other. This fluid allows us to move around without causing any friction on the layers.

What is primary peritoneal cancer?

Primary peritoneal cancer (PPC) is a rare cancer of the peritoneum. It is very similar to the most common type of ovarian cancer called epithelial cancer. This is because the lining of the abdomen and the surface of the ovary come from the same tissue when we develop from embryos in the womb. Doctors now think that most high grade serous cancers actually start in the far end of the fallopian tube rather than the surface of the ovary or peritoneum.

Doctors stage cancers to help them decide the treatment that people need. Staging tells them about how big a cancer is and where it is in the body. The staging system for PPCs is the same as for ovarian cancers but there is no early stage. PPC is always either stage 3 or stage 4. This is an advanced cancer. PPC does sometimes affect the ovaries but to be a PPC it must only be on the surface of the ovary…”

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