Survival rates for Stage 4 OCCC

zcuthj~U R TRULY BETWEEN A ROCK & A HARD PLACE

Dear husband “zcuthj” ~

Allow me to answer you honestly in view of your last statement.  If you were the one with the cancer diagnosis, you are the type of person that wants to know all the possibilities.  Based on that statement, since I am a realist, I feel the same way.  It seems that when I first read your letter earlier today, 4 people had already read it earlier in the day.  Now I see that 25 have read it, and the number will be even greater by the time I finish this letter.  Your letter is one of the most difficult to answer, because you want to know all the facts.  I am to assume that your wife is not aware that you are writing.  Perhaps it is just as well that she not know at this time.  However, for your own peace of mind and inquisitive nature, I will do my best to provide you with some sources of information, together with a short bit of history from where I stand.  If you read my “about me” page, you will know more.  Frankly, I need to update it even now, because my last CT scan has shown a “progression”.  You might like to know that I’m writing from the perspective of first a caregiver to my husband when he was diagnosed back in 2002.  He has survived Stage III Esophageal Cancer, and that is a miracle.  We were both shocked when we went to the doctor because of my husband’s “hiccup”.  Each time he started to eat something, he would have just one hiccup and everything from there on was fine.  So after a couple of months, I said we’ve got to see what’s wrong with you.  So we went to the doctor with a hiccup and came home with late Stage cancer.  It is an absolute miracle because very few Esophageal Cancer patients survive 5 years, so I know a bit about cancer.  We never fail to give God the credit for sparing my husband’s life this long, and today he is still cancer free.  But we went through all the testings, pre-op chemo and radiation and surgery, so I’m familiar with all that goes through a spouse’s mind as “the caregiver.” 

Then in November of 2012, not to be outdone, I went to the ER thinking I had a hernia.  A CT was performed and my own self-diagnosis changed drastically.  Try Stage IV Peritoneal Carcinomatosis—multiple tumors of unknown origin floating around in the peritoneal fluid in my abdominal cavity.    I was 74 at the time.  Immediately I began searching for information for more big words I would have to learn about CANCER.  Knowing that one should always have a 2^nd opinion, I went to the University of Pittsburgh Medical Hospital where my husband had received such excellent treatment.  There a PET scan and exploratory surgery was performed in December 2012.  Cancer was also discovered in my ovaries.  So that was probably the origin of it all, but by the time I went to the doctor it had already spread elsewhere.  UPMC advised me to first have chemotherapy and then they would conduct a re-evaluation.  So at the start of 2013, I began a regimen of Carboplatin and Paclitaxel.  (6 treatments).  So I’m familiar with what your wife has gone through.  I also had Major Cytoreductive Surgery which involved removal of all non-essential organs to which the cancer could likely spread as well as resectioning my intestines.    I credit that surgery with giving me 4 ½ years I never dreamed I would have.  Since then I’ve had radiation in 2014, and two more regimens of Carboplatin and Paclitaxel (Taxol) in 2015 and 2016.   My recent CT conducted September 5, 2017 indicates the cancer is still on the loose and affecting some new places despite all the prior treatments.  That’s just to let you know where I’m coming from.  And knowing my nature, if my husband weren’t willing to face the facts, I would make him aware of all that I knew anyway.  But the two of us have never tried to keep secrets from each other.  After all, we women are “gifted” with the ability to read minds, don’t you know? 

You have asked some very specific questions which I feel deserve answers.   First of all, I applaud you for being “realistic”.  Anytime a cancer has metastasized from one major organ to another, it is a Stage IV diagnosis.  I learned that clinical trials thus far have determined that Carboplatin and Taxol have benefitted the most people diagnosed with either Peritoneal Carcinomatosis and/or Ovarian Cancer.  Incidentally, Peritoneal Carcinomatosis can come from even a ruptured appendix.  Subsequent bacterial spread left to itself can develop into cancer.  Colon cancer can spread and become a Stage IV disease as well, so it isn’t only women that can have Peritoneal Carcinomatosis.  But as for Ovarian cancer, per se, I hope you are consulting with a gynecologic oncologist.  They train more intensely on the treatment of female reproductive organs. 

That said, below my name you will find several references as to survival rates for Ovarian Cancer, including Stage IV. 

Now I’m assuming that your wife is not going to know that you have written here.  So you can just sit down at your computer and look up these references, make your own notes and conclusions.  I would suggest that you put down the web address, and then make notes specifically according to that report, then proceed to the next in that order.  Then if your wife is curious enough to ask what you are doing, I would be very honest with her and tell her you’re researching her cancer.  If she asks more, tell her more.  If she wants to live in denial, that’s her choice.  You can’t force her to act against her will.  But if she becomes curious enough to ask more, that could be an opening for a deeper conversation.  Ideally the two of you need to be able to face the truth together.  She will be the one suffering the physical and emotional aspects of this diagnosis.  You will certainly be suffering emotionally.  However, I will tell you that with my Stage IV Peritoneal Carcinomatosis diagnosis, I could have died shortly, but I elected to at least “try chemo once”. 

Now no one but the patient can say how it “feels” to be actively receiving chemotherapy.  For my particular regimen, I received 6 separate treatments, each one at a 3-week interval.  After the 3^rd cycle, I was given another CT test to gauge my response to that combo.  So evidently your wife’s numbers have not responded significantly enough to determine that this is a good course for her to continue on for the full treatment regimen.  So at least it’s wise not to continue suffering and coping with debilitating side effects that will have no good outcome.  But as I’ve said, while there are different treatments that can be prescribed for Ovarian cancer, the “top of the line” begins with Carboplatin/Paclitaxel (Taxol).  It has been shown to have the very best outcome for the greatest number of women diagnosed with Ovarian Cancer.  However, that doesn’t mean that everyone will respond to that treatment.  That is why more than one drug has been tested and approved by the FDA.  But I understand that there is an even greater level of toxicity for some of the other drugs that are available.  So now it seems this is what your wife’s doctors are trying to figure out. 

Now to be “brutally honest”, Stage IV cancer patients do not have a high survival rate.  How I wish that Stage IV Ovarian cancer patients could “enjoy” a 70% survival rate.  Sadly that is not the case.  We always fare worse because our cancer has already spread to more than one major organ.  In this case you are saying it has already been found to be in the Liver and the Lungs.  So if your wife’s original cancer was first located in the ovaries, her diagnosis will continue to be Ovarian Cancer with metastasis to the Liver and the Lungs.  The diagnosis won’t change each time the cancer invades another space. 

Obviously your wife won’t ask her doctor because she doesn’t want to hear anything that is not positive.  And it’s been my experience that doctors are busy people too, and if you don’t ask, you might not ever know all the repercussions of this particular cancer.  But you can ask her doctor and, if I were in your position, I would.  If I were you, I would arrange a private consultation with her doctor or doctors, and tell them that you need to know what to expect.  And I’m certain that they will tell you once they know that you have researched this cancer, and know many of the possibilities, as well as the survival rate. 

 You definitely need to know what is actually happening, even if your wife doesn’t want to hear “all” the possibilities.  Sometimes a person’s nature is to be reticent when it comes to facing something that may bode ill for them.  But sometimes with a bit more reflection, they gradually decide that they will “try” be a bit more receptive and listen to reason.  However, she has already been “through the mill” having had a hysterectomy and 3 rounds of chemo since June of this year.  And I must say that as much as the family members want to never see anything but complete success, for the wife to subject herself to untold suffering just to “please the family” is never good.  Now I don’t think you fit that description. You don’t appear to be the type to tell her what she must do.  After all, she is the one with the cancer, and the pain.  And believe me, she wants to live as much as you want her to live.  Talk about being “between a rock and a hard place, you are in it.” 

You ask, “How do I talk to her to without dashing her hopes? Should she be told more realistic success rates without mentioning a number?”   Based on what you will know after researching the survival rates, you won’t be able to be honest with her without dashing her hopes.  If she doesn’t like 70%, would she like hearing an average 5-yr. survival rate of 46.246 percent?  That’s the hard place you’re in. 

Now there’s no question about your love for her.  As a caregiver, I know how your heart aches.  So allow me to share a story with you about a friend of mine who had been diagnosed with Breast Cancer.    Her husband was a wonderful man, a caring and compassionate dentist who would often treat patients even if they lacked the money to pay full price.  There was no question of his devotion to her or his compassion for mankind.  However, he could not face the facts that his wife was not going to live.  He refused to face reality.  Consequently, he would never accept his wife’s diagnosis, although he carried her to every appointment including bone marrow transplants, etc.  He never gave up hope that the next thing would be the treatment that would result in her being healed. 

However, the wife had readily accepted the reality of her cancer.  The one thing she wanted most to do was to be able to discuss it with her husband.  She wanted to open her heart and share with him all her hurts, plans, the children’s futures, etc.    He refused to accept the possibility that she wasn’t going to be healed, consequently you can only imagine the intimacy that they missed (forfeited) by not being able to be “open with each other.”  I know that it is your heart’s desire.    BUT if your wife says she doesn’t want to do any more chemo, then that should be the way it is. 

If you ask the doctors if this is a “terminal” diagnosis, they will answer you truthfully.  They obviously will not give dates, but I believe they will give you an honest appraisal taking her specific condition into account.  And you will know the answer yourself when you’ve researched the survival stats for Stage IV cancers.  They will have different survival stats depending on the particular cancer.  Already I have survived longer than most, but I am a terminal patient. But there is always one caveat.  I am a woman of strong faith and belief in the scriptures.  Psalm 139 is one of my favorites.  I truly believe that my Creator knows all about me. And as I've so often stated, I won't die one day sooner than my allotted time on this planet.  Then I believe the Lord will bring me to my home in Heaven.  That belief sustains me through all that I and my husband are facing.  There is always the possibility that he will have a recurrence as well.  Stats for Esophageal cancer are not good either.  

As such there are a lot of critical decisions that need to be discussed openly regarding personal finances, and all that goes with that, the making of a will, preparation of necessary legal documents, understanding what “getting one’s house in order” really means.  It means facing a lot of possibilities and trying to be prepared for them.  It’s not a place any of us want to be.  That said, it would be hard for me, if I were “in your shoes”, to not be honest with her about the possibility that she wasn’t going to be healed by doing more chemo or even radiation.  I would probably have to tell her what I’ve found, and tell her at the same time, “I’m willing to abide by your choices.  I’ll be with you every step of the way.  I’ll do anything I can for you.  I’ll take you anywhere you want to go.  I will never try to force you to subject yourself to treatments that are not going to guarantee a cure.”

 It appears she is looking for a guarantee, but unfortunately cancers don’t come with guarantees.  Absent a miracle from God, which I never discount, there is no medical fix for my Ovarian Cancer, Stage IV.  Our aim is to undergo some type of chemo and/or radiation that will, upon completion of the regimen, provide us with some period of “progression free survival” (PFS).  All that I will undergo (endure) will come under the category of "palliative" treatments.  Heretofore, I’ve been able to have about a year between treatments of Carboplatin/Paclitaxel (Taxol) wherein I had a relatively symptom-free period when I didn’t experience any sudden rise in my CA-125 count.  As you know that is a tumor marker that will show activity levels.  And according to what you say, her interim CT scan and CA-125 is showing “platinum resistance.

In all my searches, I haven’t found a “specific table” that breaks down survival rates according to the type of chemotherapy one receives.  When your wife’s doctors make a suggestion as to what treatments they think will be best, ask them “What is the success rate in general for patients receiving this drug?”  Now that’s not to say that your wife will ever consider another drug combo.  I know that different clinical trials have been conducted using different combinations of drugs, and so far Carboplatin/Paclitaxel (Taxol) gets top billing for the best treatment for the majority of women diagnosed with Ovarian Cancer.   The best way I know to help is to provide you with a “starting point” for you to conduct your own research.  And so below my name you will see several references which will be helpful. 

• And one more thing I might mention since I don’t know anything about your wife’s age and her employment status.  There are different Stage IV cancers that qualify a patient to receive disability payments.  I have no idea if this is applicable to your family’s situation, but I will list that here just for your information.  It may or may not be applicable for you to consider.  https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022260

My husband and I talk about everything.  We discuss everything that I write on these forums, and he is equally saddened to hear of your wife’s diagnosis.  I’ve always said, “When my husband has cancer—I have cancer!”  I know that is how you feel.  I just know it from my experience as first a caregiver to my husband.  Know that it is our sincere prayer that you will find a way to converse with your wife openly and honestly at this the most critical time of your lives.  How I wish there were more positive findings, but I feel compelled to share with you what I have experienced in our own lives so far.  We are “closer” together than ever before, and all our trials have solidified our love even more since our cancer diagnoses.  We pray that even though this is such a sad occasion, that you and your wife will be able to share openly whatever the future days may bring.  May the Lord give you the courage (and your wife) to face this crisis “together”.

Prayerfully,

Loretta

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1.      http://news.cancerconnect.com/types-of-cancer/ovarian-cancer/

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2.      http://news.cancerconnect.com/types-of-cancer/ovarian-cancer/ovarian-cancer-overview/

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3.      http://chemocare.com/chemotherapy/drug-info/default.aspx

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4.      http://chemocare.com/chemotherapy/side-effects/default.aspx#o

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Here is the accompanying “pdf” file for Reference 6 that you may print out, if you wish to discuss it with her doctor.

5.        http://media.chemotherapyadvisor.com/documents/290/ovariancancer_0317_72281.pdf

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6.      http://www.cancertherapyadvisor.com/gynecologic-cancer/ovarian-cancer-treatment-regimens/article/218127/

“GYNECOLOGIC CANCER ADVISOR

• HEADLINES
• TREATMENT REGIMENS
• DRUG INFORMATION
  • Cancer Therapy Advisor>
  • Cancer Topics>
  • Gynecologic Cancer>
  • Ovarian Cancer Treatment Regimens

“Ovarian Cancer Treatment Regimens…

Download: Ovarian Cancer Treatment Regimens...

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7.      https://ocrfa.org/patients/about-ovarian-cancer/statistics/?gclid=Cj0KCQjwruPNBRCKARIsAEYNXIgnI5lOTw7SYxgBSsy6v3LTy0R2cBWoU0wM8SLpx6c6k_7NVKCu5SQaAoMMEALw_wcB

Statistics

In the United States, doctors must report any diagnosis of cancer to a state registry. The federal government, through the Centers for Disease Control and Prevention’s National Program of Cancer Registries, oversees the registries in 45 states, the District of Columbia and three territories. The Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute funds the remaining five statewide cancer registries. Together, the two programs cover the country’s population.

The following statistics come primarily from the most recent findings of the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute. SEER numbers are age-adjusted and based on actual data.

 SEER Cancer Statistics Factsheets: Ovary Cancer. National Cancer Institute. Bethesda, MD…”

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8.      https://seer.cancer.gov/statfacts/html/ovary.html

Cancer Stat Facts: Ovarian Cancer

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9.      ­­­­­­­­­­­­­­­­­https://seer.cancer.gov/csr/1975_2014/

The SEER Cancer Statistics Review (CSR), a report of the most recent cancer incidence, mortality, survival, prevalence, and lifetime risk statistics, is published annually by the Surveillance Research Program of the NCI. The scope and purpose of this work are consistent with a report to the Senate Appropriations Committee (Breslow, 1988) which recommended that a broad profile of cancer be presented to the American public on a routine basis. This edition includes statistics from 1975 through 2014, the most recent year for which data are available…”

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10.  https://seer.cancer.gov/statfacts/

Cancer Stat Facts are a collection of statistical summaries for a number of common cancer types. They were developed to provide a quick overview of frequently-requested cancer statistics. Available statistics may include incidence, mortality, survival, stage, prevalence, and lifetime risk. Links to additional resources from NCI including risk factors, treatment, and clinical trials are also provided. The statistics will be updated annually to coincide with the SEER data release.

Choose a cancer site from the list below to view the Cancer Stat Facts...”

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11.  https://nccd.cdc.gov/uscs/

   Cancer > NPCR

zcuthj said:

Update

It has almost been a month since my original comment, so I thought an update was due.  My wife started Doxil (doxorubicin liposomal) and Opdivo (nivolumab) last week. The Caris test showed that she has markers that suggest this is the best course of treatment. Doxil is a form of chemo that she receives every 4 weeks, and Opdivo is an immunotherapy drug that she receives every 2 weeks. Since Opdivo is not FDA approved for ovarian cancer, the insurance company refused to pay for it. Thankfully, the drug company agreed to provide it for free. At $33,000 per treatment, we would not be able to afford it. 

My wife finds it difficult to keep her spirits up because she continues to lose weight and has trouble breathing due to fluid around her lungs. The hospital told us that Opdivo has a tendency to make tumors swell, so the first CT scan will look worse, but it starts working soon after. The sooner this shows some sign, any sign, that it is working, the better, but we know it takes time.

Thanks again to all of the people who have offered words of encouragement, especially Loretta and Lcmartin.

Hello again –

Haven’t posted here in a couple of weeks or more.  Am on a “self-imposed” sabbatical although I check the site.  I simply cannot answer all the inquiries that I read in the way I wish to.  I try to provide as much relative and accurate information as possible.  But things have been tough here at home with the loss of my husband’s sister who passed away suddenly of a massive stroke.  And then yesterday, my oldest brother died suddenly of Pancreatic Cancer. He was only diagnosed in the last two months.  But having had 3 relatives also die in time past from that same vicious cancer, I knew by his CT scans that he could not survive long.  And God has graciously removed him from his suffering.  And though I will miss him terribly, I can’t wish that he were still here.  When quality of life is compromised to the point of intolerance, it is time to call in Hospice I think.  

Also my condition is such that I am extremely tired, but I never want to “give up” and do nothing.  In that regard, I am going to consider one more treatment of some kind, and then I’m thinking that it may well be my last.  The oncologist has suggested Doxil, but I’m not thrilled about that.  He always just presents possibilities and then let’s me choose.  The last thing I want is to “not feel like I get to make the final decisions.  After all it’s my life!”  And so I’m leaning toward doing Carbo/Paclitaxel one more time.  We will do 3 in a series of a possible 6, and if the tumor markers are not reduced, then I will try some kind of immunotherapy clinical trial.  After all, the word “trial” is most appropriate especially for us Stage IVs. 

My latest scan shows a new cancerous nodule in my Liver, and always a gradual “thickening” along the abdominal wall, and nodes are increasing “moderately.”  My radiation oncologist says it will do no good just to radiate the one node when the spread is systemic.  So both he and my oncologist recommend that if I am going to do any more treatments, that I should do it “sooner rather than later.”  They said “Don’t wait till you get real bad off because it will be much harder to return you to some level of quality of life.”  So we’re always between a rock and a hard place, are we not?

I also have pleural effusion which is making me cough so much so that I cannot sleep lying flat on my back.  So I propping up on 3 pillows.  I have had some moderate accumulation of fluid in the past, but it is now causing me daily coughing, a stinging pain on my left side in particular right in the area of my back where the lungs are.  I’m also very dizzy lots of the time.  So my doctor ordered an x-ray and has scheduled a “thoracentesis” (pleural effusion draining) for day after tomorrow.  I’m wondering why your wife’s doctor doesn’t prescribe the same procedure for her?

I’m also scheduled to have a new medi-port implanted Friday as well.  That way when I decide on a treatment, it can begin almost immediately.  My old medi-port became infected back in January of this year, and I had to have it removed.  It had been in place since early 2013.  But I would never want to go through another series of any kind of treatments without a medi-port.  And it is so convenient for nurses to administer medications without giving me an injection or searching for a vein. 

So these two scheduled procedures for Friday cannot be cancelled.  Therefore, I will have to cancel attending my brother’s funeral on Saturday morning.  It would be a 6 ½ hr. drive and I’m not up to that kind of travel right now.  But both he and I are Christians.  You know scripture, which I choose to believe, says in Ecclesiastes that the body will return to dust, but the “spirit” will return to God Who gave it.”  And so, I’m confident that my brother has reached the other side.  Only God knows who will be next in my family, but my brother was suffering so that I am relieved that he is no longer suffering, and I’m confident he is with our Lord.  If I didn’t believe there was “life” after this one, I’d be a miserable soul.  God has given me “soul” peace even though my body is in a constant state of deterioration.  But whoever wants to exit this life and leave their loved ones behind?  We all like to think that we are so needed that we are practically “indispensable and irreplaceable”.  We all want to see our own children grow up and become responsible citizens.  Then we start on the grandkids and say, “Oh I want to see them grow up”—and on and on it goes.  So as long as we have health, there’s never a time that we want to hang up our harp and leave Planet Earth.  Life is precious but limited and fragile.   So I thank God for the ability to cope thus far, although I don’t have to explain to anyone on this site, what “coping” really involves.

All those that have read your letters are praying for you and your wife, and hoping that these new treatments will have a “good effect” in destroying many of the tumors so she can have the pleasure of your company and all her beloved family for a long time to come.  So thanks for the update.  We Stage IVs are always praying that the “progression” will be minimal and that there will be long periods of time in between treatments so that it makes living “worthwhile” and meaningful.

And one more time, I would speak to the doctors about having her lungs drained of that excess fluid.  It’s an outpatient procedure.  I have had one thoracentesis when I had my Cytoreductive surgery back in 2013. 

Sincere best wishes and prayers for you and your wife ~

1.      https://www.bing.com/videos/search?q=Thoracentesis+Drainage+Tube+Care&&view=detail&mid=2E6B8AE4E5E0D962B1EA2E6B8AE4E5E0D962B1EA&&FORM=VDRVRV

[My note:  This gives a thorough explanation of what takes place during a thoracentesis.  I hope that is something that your wife will be able to have.]

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