Ovarian Cancer after hysterectomy

Hello Pat -

Have sent you a lengthy reply in a separate link - http://csn.cancer.org/node/301251

Included are several references that better explain how we might have come to be diagnosed with Ovarian Cancer.  I have undergone gene testing for BRCA1 and BRCA2, but I understand that there are now 9 additional hereditary genes that could be related to Ovarian Cancer.  My testing did not indicate that my cancer was hereditary, even though I have 20 major cancers noted on my mother's side of the family.  At the time, I was told that there could be other genes that have not yet been tested that could be linked to Ovarian Cancer.  I was not tested for the now 9 additional genes that could relate to the diagnosis of Ovarian Cancer.

Having just completed a second series of Chemo treatments of Carboplatin and Taxol, I am presently having a good quality of life, even though my CA125 markers have risen from 10 in December to 99 as of now.  A recent CT test indicates the tumors are growing slowly.  I awoke this morning to see another sunrise and hug my husband who is now into his 14th year of survival from Esophageal Cancer, Stage III.  I am doubly blessed, and life is good, even with my diagnosis of Peritoneal Carcinomatosis/Ovarian Cancer Stage IV.  I could have died soon after diagnosis in 2012, but the Lord is good.  I've been blessed with more years than I could ever have imagined.  May your deep abiding faith in God continue to comfort and guide you in all the days that follow.

Sincerely, Loretta

Dear Pat:

Since you had a hysterectomy years back, and had your ovaries removed, I’m assuming you’re planning to have some type of intraperitoneal chemo treatments.  I’ve got a heavy schedule myself and may have missed the exact plan of treatment your doctor has outlined.  In any event, I know that all surgical procedures carry with it a lot of anxiety, even when we have prayed and asked God to give us ability to stay calm.  So I’ll be praying for you especially tomorrow, but you’ve already been in my prayers and thoughts from correspondence we’ve had in the past.  Touch base when you are up to it.  We would like to know how things went with you.  We pray treatments will be highly effective, and kill so many cancerous tumors that it will give you a long long time before anymore treatments are prescribed, if ever.

All the best,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

caf132 said:

Ovarian Cancer Diagnosis

Hello Everyone-

I was just diagnosed with stage IIIb Ovarian cancer.  it all happened so fast my hear is still spinning.  I thought a few months ago I had just gained a few pounds as my clothes were not fitting well.  I was watching what i ate and exercising.  I finally knew something was wrong.  I had a large growing mass in my pelvic region.  I went to the doctor and he did a pelvic exam and a CA125 blood test and sent me right away to an OBGYN Oncologst.  I had an ultrasound, CT Scan and surgery all in the span of 6 dsys.  I hasd s total hysterectomy with omentum and appendix removed.  Also two lymph nodes removed.  Just got pathology report back and I have carcinosarcoma and serous carcinoma.  i am facing chemo as soon as i recover from the major surgery.  At least it has not spread to the lymph system.

I am very scared but will fight this to the end.  Has anyone had this diagnosis and how was it treated with chemo?  i know my cancer is rare(less than 4% ov ovarian cancer are this).  I wonder if less $$ is spent here as it is rare.

You are all in my prayers in your fight with this dreaded enemy.

Carol

 My dear Carol:

           To make a long story short is difficult for me, so I won’t even try.  Just consider this a “welcome” letter.  You have certainly gone through a difficult surgery in record time.  Your anxiety is certainly understood and this certainly is a rare cancer.  Although my diagnosis isn’t identical to yours, it is in the same category.  As for me, I went to the emergency room thinking I had a hernia since I felt a small nodule in my abdomen. I’m high energy, and certainly try to lift anything that needs moving.  Anyhow, I was shocked to read the CT scan report and see the words “Peritoneal Carcinomatosis”.  A 2^nd opinion at the University of Pittsburgh Medical Center consisting of a PET/CT scan and exploratory surgery produced this result. Tumors were not only found in the peritoneal fluid in the abdomen, but also in the Ovaries.  Chemo was recommended and then another consult would be in order.

           So I went home, had 6 sessions of Carboplatin/Taxol.  Each one scheduled 3 weeks apart.  At end of that period tumor reduction in size enabled me to have Cytoreductive Surgery (CRS).  You are so right.  It is major surgery indeed.  My appendix had been removed when just a lass at age 12.  My uterus was removed at age 36, but not my ovaries and fallopian tubes.  Now it’s suspected that actually Ovarian cancer can well begin in the Fallopian tubes.  Had I known this years ago, I would say, “Take it all out!”  But then, they thought we ladies were prone to “lose our minds” minus our hormones!  At that time, my surgeon gave me a little pamphlet telling me what to expect.  In the question section, one read like this.  “Will it make me lose my mind?”  The answer given—NOT UNLESS YOU WERE GOING TO ANYWAY!   So if I were to ever be given the opportunity to advise younger women when they were anticipating having a hysterectomy, I would say “Personally I would request that everything be removed (Uterus-Ovaries-Fallopian tubes.  (Even though is it possible to be diagnosed with Ovarian Cancer even after they have been removed.)  Better to cope with hot flashes than cancer!”

             So after completion of my chemo regimen, a wonderful surgeon, Dr. David Bartlett, at the University of Pittsburgh Medical Center, performed the surgery to remove my ovaries, fallopian tubes, gallbladder, spleen, omentum, and sections of my intestines.  Understood of course, that this was not intended to be “curative” in nature, but rather a pre-emptive strike before the tumors could multiply even further and attach themselves to other organs in my abdomen.  I am told that the cancer usually confines itself to the abdominal cavity and can spread to the lungs and the liver.  I have done what I can, and the rest is up to my Creator, and God who knows the number of my days. 

             Indeed, you will not find a lot on this discussion group who have this rare diagnosis.  I haven’t been posting for long on this site, so others who have followed it more closely may be able to refer you to someone with the same diagnosis.  As for dollars allocated to research for this rare cancer, I’m not qualified to comment.  But having known others with rare cancers, it seems that the number of patients with a specific disease has some bearing on how much money is allocated for that particular disease.  I had one dear friend who was diagnosed with Cystic Fibrosis at birth.  She lived for 35 years, but all that time reports would read, “Great strides” are being made.  That’s always difficult to hear when one has an incurable rare cancer, and year after year, there seems to be little change in advancing a cure, or improved treatment.  So much for how cancer research funds are allocated.  I often wonder how much really gets “allocated” to where the donors want it to go.  We read so much today about how much is used for “salaries and overhead.”  But I have no specific examples I cite.  I’m just thankful that I’ve had access to knowledgeable and caring physicians thus far.

             Now, as for me personally, I know that there is no known cure for me so I have two choices.  Write my obituary today or thank God for another day of life even though it’s often filled with doctor’s appointments aimed at “slowing the rate of growth.”  Yes, this is a devastating disease.  The most I can do is make myself aware of what treatments are available, and pursue them, and pray that God will give me more time down here on Planet Earth, although I know “Heaven is far better.”  There’ll be no sorrow and sickness there for sure.  I don’t want to be a messenger of doom and gloom.  All I can say that the first weeks will be the most difficult “wrapping your arms around the new you!” Even though I was diagnosed in November of 2012 and even though the surgery was rough, I am enjoying a good quality of life today and it’s now 2016.   My advice is to “own your cancer” and make the most of each day you have.  Naturally there will be “down days”, but hopefully you will develop a positive mindset sooner rather than later.   It will keep you from “living under the circumstances.” 

             Here in the South, we have a routine greeting when we are meeting someone for the first time.  It goes something like “Hi, how are you?”  However, I no longer answer, “Fine thank you.”  I say, “Well for a terminal cancer patient, I am doing swell thank you.  I’m in good shape for the shape I’m in.”  Wish you could see the surprised look on their faces.  Some don’t know how to respond.  Others relate quickly since they have friends or loved ones who have cancer.  Others say, “You sure don’t look like you have cancer!”  That has engendered some very long conversations at times, most often when they know something about a cancer diagnosis.

           My husband always answers, “Terrible.”  But actually, he uses that response to see if they are actually paying attention to what he is saying.  He then tells them that he is an Esophageal Cancer survivor now entering his 14^th year of survival, although many EC patients die during the first year.  It has a much higher death rate than Breast Cancer comparatively speaking.  Many people taking NEXIUM for heartburn should have visited their gastroenterologist long ago.  It’s been proven that OTC like Prilosec can actually mask the onset of Esophageal Cancer.  So if you know anyone constantly being prescribed with some omeprazole, encourage them to visit their Gastroenterologist and have an Endoscopy.  It could be a lifesaver.  So we both know what it means to be both a caregiver and a cancer patient.  One thing for sure, it builds character and perseverance.  Not that I didn’t want to be stronger, more compassionate, more helpful and loving, and more appreciative of good health, but I never imagined that a cancer diagnosis would be the road I would take to get there.  Actually I would not have voluntarily chosen this particular road.  So my prayer for you is that both you and I will make the most of the rest of the days that follow, knowing that our prognosis is more uncertain than other types of cancer people are dealing with.   I wish I could help you more Carol.  I can call your name in prayer though since “The Great Physician” knows both our names.  I know He’s not dead because I talked to Him this morning. J

            This poem is certainly true of my life’s experience.  It’s called “Along the Road”. 

 Along the Road

 by Robert Browning Hamilton

 I walked a mile with Pleasure;
She chattered all the way,
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow ;
And ne'er a word said she.
But oh, the things I learned from her
When Sorrow walked with me!

Carol, may God bless you as you travel along the road with this cancer. 

Lovingly & prayerfully,

 Loretta

 Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

caf132 said:

Ovarian Cancer Diagnosis

Hello Everyone-

I was just diagnosed with stage IIIb Ovarian cancer.  it all happened so fast my hear is still spinning.  I thought a few months ago I had just gained a few pounds as my clothes were not fitting well.  I was watching what i ate and exercising.  I finally knew something was wrong.  I had a large growing mass in my pelvic region.  I went to the doctor and he did a pelvic exam and a CA125 blood test and sent me right away to an OBGYN Oncologst.  I had an ultrasound, CT Scan and surgery all in the span of 6 dsys.  I hasd s total hysterectomy with omentum and appendix removed.  Also two lymph nodes removed.  Just got pathology report back and I have carcinosarcoma and serous carcinoma.  i am facing chemo as soon as i recover from the major surgery.  At least it has not spread to the lymph system.

I am very scared but will fight this to the end.  Has anyone had this diagnosis and how was it treated with chemo?  i know my cancer is rare(less than 4% ov ovarian cancer are this).  I wonder if less $$ is spent here as it is rare.

You are all in my prayers in your fight with this dreaded enemy.

Carol

Hi Carol,

i understand we with the carcinosarcoma diagnosis (3c) are 1 of 200 diagnosed each year in this country.  I have met two other women on this site with the diagnosis and was just at weekend event, stowehope.com, with at least 500 others with cancer and their guests.  One other woman also had carcinosarcoma.  The other women with ovarian cancer (there was a wonderful panel and gathering) knew of one more woman and they are going to put her in touch with us.

My diagnosis was not unlike yours, no big symptoms until I discovered a mass, then called a large pelvic mass.  I had a hysterectomy and removal of the omentum and tumor.  Through a "mistake" I ended up with two consults, Dana Farber and MD Anderson.  Both agreed with my gyn oncologist on everything.  She was pleased, happy to have these others thinking added to hers.  I have had six rounds of chemo, three intraperitoneal and I.V., taxol and cissplatin.  We would have gone for six but my kidneys were being damaged.  This started last fall.  I was 67 y.o., might not happen to someone younger.  I was also in very "good shape", so who knows.  The next three rounds were taxol and carboplatin! IV only.  I finished those at the end of February, had a post check on April 8, cat scan, ca125 and time with my MD.  She declared me in remission, no sign of disease on either test (NED on this site!).

I'm sure less money is spent on this cancer.  Less is spent on ovarian cancer in general.  I was just on the National Ovarian Cancer site though and it looks like they are revving up to do more in the way the breast cancer folks have raised money awareness.

One thing my obgyn said is they are shooting in the dark with this.  But I have a lot of faith in her and her willingness to listen to others.  The intraperittoneal is definitely "cutting edge", even though it has been around a while, it has been slow to be taken up.

i would be most happy to have you write directly to me, call me, keep talking.  Fight is good and there are fellow warriors to be gathered as well as tools.  For example, one thing that I am sure has made a big difference for me has been walking - every day, even through chemo.  Something I had heard about before and didn't do, but I heard about it again from women this past weekend, is icing your hands and feet during chemo to slow down the neuropathy.  There is no reason for the chemo to go to your feet, but it will affect the nerves in your feet.  They said the icing slowed the circulation and decreased the neuropathy.  

Good luck!  I'll look forward to hearing how you are doing.

Carrot (Marilyn)

caf132 said:

Ovarian Cancer Diagnosis

Hello Everyone-

I was just diagnosed with stage IIIb Ovarian cancer.  it all happened so fast my hear is still spinning.  I thought a few months ago I had just gained a few pounds as my clothes were not fitting well.  I was watching what i ate and exercising.  I finally knew something was wrong.  I had a large growing mass in my pelvic region.  I went to the doctor and he did a pelvic exam and a CA125 blood test and sent me right away to an OBGYN Oncologst.  I had an ultrasound, CT Scan and surgery all in the span of 6 dsys.  I hasd s total hysterectomy with omentum and appendix removed.  Also two lymph nodes removed.  Just got pathology report back and I have carcinosarcoma and serous carcinoma.  i am facing chemo as soon as i recover from the major surgery.  At least it has not spread to the lymph system.

I am very scared but will fight this to the end.  Has anyone had this diagnosis and how was it treated with chemo?  i know my cancer is rare(less than 4% ov ovarian cancer are this).  I wonder if less $$ is spent here as it is rare.

You are all in my prayers in your fight with this dreaded enemy.

Carol

Hi Carol,

I don't mean to hijack this thread, but do you have high grade or low grade serous carcinoma?  I too was diagnosed with it in late February, after I also lost my appendix during a hysterectomy (along with a "fat pad" that we all apparently have and the omentum).  Scary stuff.