[My note:  “lessharp”—because of the extensive info links relative to your legitimate and understable concerns  about an “Elevated CA-125 and Ovarian Mass”, I thought it best to answer you on a separate link.  Others may want to answer you on your original posts which you wrote here:  https://csn.cancer.org/node/314468]  They can read your remarks there. But you have asked such good questions, hopefully the information below should be helpful for you as well as others who read on this site.  It has helped me.  – Loretta]

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Dear “Les”

You’ve got enough symptoms to be worried.  However, I haven’t a clue as to what to tell you at this point, but I did look up a bit about Ovarian cysts, since I a terminal Ovarian Cancer patient, Stage IV.  I’m not quite sure what you mean about having “two” primaries.  Usually one is the primary cancer, and if it has spread to another organ, it will be designated as the primary with metastasis to the organ to which it has spread.  In my case, it wasn’t determined which was the primary because at my initial testing, it was already Stage IV.  My second opinion at the University of Pittsburgh Medical Center was found to be Ovarian Cancer Stage IV.  However, the first place the tumors were discovered were in the Peritoneal Cavity by means of a CT scan.  There were vast numbers of tumors floating around in the Peritoneal fluid in my abdominal cavity.  So since both the initial diagnosis, Peritoneal Carcinomatosis in November of 2012, and my second opinion in December of 2012 for cancerous ovaries as well, are both treated in the same fashion, we didn’t waste time trying to figure out, “which came first the chicken or the egg???”  So I’m thinking that if this should turn out to be cancerous, isn’t it a good possibility that the diagnosis would be Breast cancer with metastasis to the ovaries, or whatever organ, if determined that it is cancer. 

Now we’ll just be honest, and say that for most of us, our minds jump to conclusions and write our obituary.  But I’m still here 5 years later, although I have run out of options, and this is my last series of treatments that I am willing to take.  Although my oncologist said he thinks that most likely I have developed an immunity to the Carboplatin/Paclitaxel (Taxol) combo, I told him, “This is all I’m willing to take.  I’m a Christian and know where I’m going when I die, and if it’s my time, it’s my time.  I’m not willing to sacrifice my quality of life and head on a downward spiral just to keep breathing.”  He understood completely, and did not argue with me. 

So as of today, wee hours of the morning on Thursday, January 18, 2018, I am scheduled for my second of 3 treatments to see how things are going.  Then we’ll go from there.  My treatments are to be 3 weeks apart, and later today, 9:20 A.M. as a matter of fact, I’m supposed to be there “bright-eyed and bushy tailed”!  Now I won’t be “bushy tailed” because I just shaved off my hair tonight.  Taxol takes a toll on the body and with almost one fell swoop takes away the hair.  Mine began to fall out 10 days later.  Shaving my own head tonight was not accompanied with any emotion.  It’s “old hat” now.  But the first was more traumatic.  But “it’s neither Hair nor There” I said.  I feel much better knowing I’m not going to wake up with hair all over the pillow.  After all, hair does not a woman make…but we feel more like one with some hair.  Anyway, it’s no “biggie” at this point.  My main concern will be that hopefully it will give me some more quality time.  Now don’t get me wrong, going through chemo and surgery isn’t what I classify as “quality time”, but what it takes to be able to take the long look and envision a better life once we can recover.

Now I did note that my CA-125 dropped 40 points after the first treatment, down from 185 to 145, so that’s encouraging.  But like I say, “It is what it is, and if it works I’ll be delighted and so will my family.”  However, I’ve told them all “this is my last chemo treatment because I’m not going “down the ladder of “tools” in the doc’s box.  After all, “try this—try that—takes a toll on us” to be sure.  And I’ve benefitted by the stories of others on this site who’ve been honest enough to tell us exactly how certain drugs affected them.  Moreover, I do research for myself, and I can research, as you can also, any drug and its effects on http://chemocare.com/.  I told my onc that I was familiar with my Carbo/Taxol combo and I wasn’t willing to go down another notch to try something else which would be more toxic and had no promise of help either.  I say, “down” because so far, the chemo combo I’m on has shown to benefit the highest number of women who are diagnosed with Peritoneal Carcinomatosis and Ovarian Cancer.  Let’s be honest, chemo is brutal but right now it’s the only game in town for my particular cancer.  Immunotherapy trials are numerous and hopefully will be a breakthrough for many types of cancers, but in my particular case, this is all there is.

Like you, I’ve been tested but not been found to have any genetic basis for my cancer, although it would seem that 20 major types of cancer on my mother’s side is suspicious.  One uncle and 3 of his sons all died of Lung cancer.  My own sister had Breast Cancer and a mastectomy, although she survived that and died of Pneumonic Aspiration many years later.  She was an invalid for 65 of her 70 years of life, and had many problems.  But there was a history of Pancreatic, Breast, Lung and Colon cancer on my mom’s side.  And my own brother just died in October 2017 of Pancreatic cancer two months after diagnosis.  My mom was one of 12 siblings and it still seems like 20 cancers out of the number 12 is a lot.  Despite no genetic correlation supposedly—I have cancer and “it is what it is.”

But back to your problem, and it is a problem, the most I can do is give you some good sites that I found while checking up on Ovarian cysts, since all cysts are not cancerous.  And when I read further on the site listed below, it sounds like something that you need to know about.  I do see Endometriosis plays a role in some of the cysts.  Of course, we all know that cysts can be benign or cancerous, and you’re having all the tests to find out what it is.  And that is good, although painful and stressful and worrisome for you, and understandably so.  You know, even as we are sure we can cope with God’s help, it doesn’t make the trip a “cake walk!”

So presently for me, I should have been in bed already, even though we’ve had a 4-inch snow tonight here in Virginia Beach, VA because I don’t know if my treatment will be cancelled or not.  (We just warmed up from a 10 ½ inch snow and that’s unusual for us on the East Coast.)  And I’ve sworn I’m wearing a mask on my next visit.  This is the flu season, and it’s a pitiful site at the oncology lab with so many mostly older folks—I’m soon to be 79—and many of them are hacking, sneezing and coughing.  And I say to myself, “Oh dear can I get away from this person—they are definitely sick?”  The last thing we need is to leave sicker than when we came in.  So don’t feel embarrassed to wear a mask.  They are readily available at our lab, but I happen to have some at home. 

Well, “Les”, I’ve talked enough.  I just thought you might need a bit of direction of what cysts can involve and I found this “UK” site to be user friendly.  Please read it in its entirety.  I’ve copied lots of it, but at 45, you’re probably not “worried about fertility”.  You just want to get rid of any and everything that might cause cancer!  I’m not smart enough to give you a possible diagnosis, and can’t comment on the CA-125 number except to say “35” is the normal range for we females and other things besides cancer can cause an elevation.  What you’re describing is obviously a reason for the increased CA-125 and it is cause for concern given all that you’ve described.  And to be honest, this article does suggest that elevated CA-125 can be a sign of cancer as well, so I just want you to be prepared to “hear” negative or positive comments from your gyn/onc with regard to your elevated levels.  Since I’m a realist, I would have to say that I would be “suspicious” to answer your question about a 115 number.  I hope this isn’t too blunt for you, but living with terminal cancer myself for the last 5 years, and my survival is a miracle—I’m probably more blunt than most.  But I feel like that you really are wanting to know for sure what is going on and as quickly as possible.  You’ve been through a traumatic time with cancer already!

But let me say one thing, if your gyn/onc is talking “hysterectomy” please leave nothing to chance—take it all out.  I only had my uterus removed at age 36, and now at 74 learned that I had Ovarian cancer.  Now it is believed that actually the cancer most likely begins in the Fallopian tubes.  That’s the most I can help you with.  And check in as often as you feel comfortable.  With my own treatments ongoing, who knows if I will be in any shape to answer?  I’m sorta on a self-imposed furlough because I don’t like trying to help someone and then not be able to talk with on an ongoing basis.  But such may be the case.  I just felt I had to answer you to try to give you some info about cysts and how they are diagnosed and treated.  Be sure to ask lots of questions.  There are no dumb questions.  This is your life, and if your doctor has your best interests at heart, she will certainly be a good listener. 

I’ll stop short of saying confirming your suspicions since I’m not certain what is going on with you.  My conversion chart says 5 centimeters is 1.968504 Inches.  (rounded to 6 decimal places).   “No Time for Cancer” has asked what kind of surgery are you having?”  So I would be interested to know that as well.  In scanning all the info links I’ve listed below, I believe it said anything more than 5 centimeters should be removed.  But I’m with you, “take it out” would be my plea!

Not sure how you feel about prayer, but we have women of prayer on here, and I’m certain they will be calling your name.  It just pays to know all you can about your particular diagnosis once it is definitely established.  I hope that will soon be determined for you.  I pray that the doctors will be able to adequately determine the correct diagnosis and prescribe the best treatment for you, and as always, when we start to experience unexplained pain, cancer does cross our mind. May God bless you with His peace—yes it’s possible even with cancer to be at peace with God even though it seems all H_E_L_L has broken loose for us here on Planet Earth when we hear, "You have cancer."  We use the word "sorry" but it can't begin to describe the disappointment we all feel when we read a story like yours.    

Love & prayers for you,

Loretta

(Peritoneal Carcinomatosis/Ovarian Cancer Stage IV) DX 11-‘12

Pre-op chemo Spring of 2013

Cytoreductive Surgery UPMC July 2013

Cyberknife (targeted radiation) for 3 tumors on Caudate lobe of liver 2014

Second series of Carbo/Taxol in 2015—Third series of same combo in 2016

Now 4^th chemo begun Dec. 28, 2017—and only God knows how that will turn out!”)

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1.       https://www.medicinenet.com/ca_125/article.htm#what_conditions_other_than_ovarian_cancer_can_cause_increased_ca_125_results

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2.       https://www.nhs.uk/conditions/ovarian-cyst/

Ovarian cyst - Overview - Causes - Treatment - Page contents

• The ovaries -  Symptoms of an ovarian cyst - Types of ovarian cyst - Diagnosing ovarian cysts
• Treating ovarian cysts
• Ovarian cysts and fertility

Overview

An ovarian cyst is a fluid-filled sac that develops on a woman's ovary. They're very common and don't usually cause any symptoms. Most ovarian cysts occur naturally and disappear in a few months without needing any treatment…

The two main types of ovarian cyst are:

1. functional ovarian cysts – cysts that develop as part of the menstrual cycle and are usually harmless and short-lived; these are the most common type
2. pathological ovarian cysts – cysts that form as a result of abnormal cell growth; these are much less common

Ovarian cysts can sometimes also be caused by an underlying condition, such as endometriosis.

The vast majority of ovarian cysts are non-cancerous (benign), although a small number are cancerous (malignant). Cancerous cysts are more common in women who have been through the menopause.  Read more about the causes of ovarian cysts.

Diagnosing ovarian cysts

If your GP thinks you may have an ovarian cyst, you'll probably be referred for an ultrasound scan, carried out by using a probe placed inside your vagina.

If a cyst is identified during the ultrasound scan, you may need to have this monitored with a repeat ultrasound scan in a few weeks, or your GP may refer you to a gynaecologist (a doctor who specialises in female reproductive health).

If there's any concern that your cyst could be cancerous, your doctor will also arrange blood tests to look for high levels of chemicals that can indicate ovarian cancer.

However, having high levels of these chemicals doesn't necessarily mean you have cancer, as high levels can also be caused by non-cancerous conditions such as: 

• endometriosis
• a pelvic infection
• fibroids
• your period

Treating ovarian cysts

Whether an ovarian cyst needs to be treated will depend on:

• its size and appearance
• whether you have any symptoms
• whether you've been through the menopause

In most cases, the cyst often disappears after a few months. A follow-up ultrasound scan may be used to confirm this.

As post-menopausal women have a slightly higher risk of ovarian cancer, regular ultrasound scans and blood tests are usually recommended over the course of a year to monitor the cyst.

Surgical treatment to remove the cysts may be needed if they're large, causing symptoms, or potentially cancerous.

Read more about treating ovarian cysts…”

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3.        https://www.nhs.uk/conditions/ovarian-cyst/causes/

 

“Causes - Ovarian cysts often develop naturally in women who have monthly periods.

They can also affect women who have been through the menopause.

Types of ovarian cyst  - There are many different types of ovarian cyst, which can be categorised as either:

• functional cysts  -  pathological cysts

Functional cysts

Functional ovarian cysts are linked to the menstrual cycle. They affect girls and women who haven't been through the menopause, and are very common.   Each month, a woman's ovaries release an egg, which travels down the fallopian tubes into the womb (uterus), where it can be fertilised by a man's sperm.

Each egg forms inside the ovary in a structure known as a follicle. The follicle contains fluid that protects the egg as it grows and it bursts when the egg is released.  However, sometimes a follicle doesn't release an egg, or it doesn't discharge its fluid and shrink after the egg is released. If this happens, the follicle can swell and become a cyst.

Functional cysts are non-cancerous (benign) and are usually harmless, although they can sometimes cause symptoms such as pelvic pain. Most will disappear in a few months without needing any treatment.

Pathological cysts

Pathological cysts are cysts caused by abnormal cell growth and aren't related to the menstrual cycle. They can develop before and after the menopause.  Pathological cysts develop from either the cells used to create eggs or the cells that cover the outer part of the ovary.  They can sometimes burst or grow very large and block the blood supply to the ovaries.  Pathological cysts are usually non-cancerous, but a small number are cancerous (malignant) and often surgically removed.

Conditions that cause ovarian cysts

In some cases, ovarian cysts are caused by an underlying condition such as endometriosis.  Endometriosis occurs when pieces of the tissue that line the womb (endometrium) are found outside the womb in the fallopian tubes, ovaries, bladder, bowel, vagina or rectum. Blood-filled cysts can sometimes form in this tissue.

Polycystic ovary syndrome (PCOS) is a condition that causes lots of small, harmless cysts to develop on your ovaries. The cysts are small egg follicles that don't grow to ovulation and are the result of altered hormone levels.”

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4.       https://www.nhs.uk/conditions/ovarian-cyst/treatment/

1. “Watchful waiting
2. Surgery
3. After surgery
4. Your fertility
5. Cancer treatment

“…Treatment - In most cases, ovarian cysts disappear in a few months without the need for treatment.

Whether treatment is needed will depend on:

• its size and appearance
• whether you have any symptoms
• whether you've had the menopause – as post-menopausal women have a slightly higher risk of ovarian cancer…

Surgery

Large or persistent ovarian cysts, or cysts that are causing symptoms, usually need to be surgically removed.  Surgery is also normally recommended if there are concerns that the cyst could be cancerous or could become cancerous.

There are two types of surgery used to remove ovarian cysts:

• a laparoscopy
• a laparotomy

These are usually carried out under general anaesthetic.

Laparoscopy

Most cysts can be removed using laparoscopy. This is a type of keyhole surgery where small cuts are made in your tummy and gas is blown into the pelvis to allow the surgeon to access your ovaries.  A laparoscope (a small, tube-shaped microscope with a light on the end) is passed into your abdomen so the surgeon can see your internal organs. The surgeon then removes the cyst through the small cuts in your skin.

After the cyst has been removed, the cuts will be closed using dissolvable stitches.  A laparoscopy is preferred because it causes less pain and has a quicker recovery time. Most women are able to go home on the same day or the following day.

Laparotomy

If your cyst is particularly large, or there's a chance it could be cancerous, a laparotomy may be recommended.  During a laparotomy, a single, larger cut is made in your tummy to give the surgeon better access to the cyst.  The whole cyst and ovary may be removed and sent to a laboratory to check whether it's cancerous. Stitches or staples will be used to close the incision.  You may need to stay in hospital for a few days after the procedure.

After surgery

After the ovarian cyst has been removed, you'll feel pain in your tummy, although this should improve in a day or two.  Following laparoscopic surgery, you'll probably need to take things easy for two weeks. Recovery after a laparotomy usually takes longer, possibly around six to eight weeks.

If the cyst is sent off for testing, the results should come back in a few weeks and your consultant will discuss with you whether you need any further treatment.  Contact your GP if you notice the following symptoms during your recovery:

• heavy bleeding
• severe pain or swelling in your abdomen
• a high temperature (fever)
• dark or smelly vaginal discharge

These symptoms may indicate an infection…”

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5.        https://www.ncbi.nlm.nih.gov/pubmedhealth/?term=CA-125

[My note:  This link contains multiple articles about CA-125—who needs testing—and what the results can determine.]

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6.       https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0087101/

“Blood biomarkers for the non‐invasive diagnosis of endometriosis”

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7.       https://www.medicalnewstoday.com/articles/179031.php

“Everything you need to know about ovarian cysts

Last updated Tue 27 June 2017”

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