Concerned..cancer?

Trice,

I am sorry you are sufferring so much.  There is a lot of helpful information in your post.  First, I would definitely want to rule out ovarian cancer.  And when a woman has ovarian cancer, it is essential that her surgery be performed by a gynecological oncologist.  These specialists have far more expertise with gynecological cancers than gynecologists and results are far superior when this type of doctor performs the procedure.  It is concerning that you are having a surgery at this point, before having a definitive diagnosis.  My doctor did not diagnose cancer for 4 months prior to my diagnosis of ovarian cancer.  In the meantime, I had a D&C, which definitely caused the cancer to take off.  If it was me, I would request a CT scan prior to your surgery to see if there is anything else lurking.

As far as your endometriosis and all of the treatments you have been receiving, I had a similar history prior to my diagnosis.  Unfortunately, conventional doctors don't have much in the way of answers when it comes to this condition.  As a result they throw hormones and drugs at you that really end up making things worse in the long run.  Endometriosis is an autoimmune condition, but your doctor won't tell you that, because he or she doesn't recognize it as such.  I have found that when it comes to autoimmune conditions, naturopaths and functional medicine doctors know how to manage them, while conventional doctors do not.  There are some surprisingly helpful pages on Facebook about conditions like this with very knowledgable moderators who can also give you some guidance.  You can also realize amazing results by adopting the Autoimmune Paleo diet.  Just Google AIP diet and you will come up with a lot of information.

I hope that your diagnosis is far less dire than cancer, and I hope you can find someone who can help you manage your other issues.  Feel better soon, and keep us posted.  Good luck. 

Trice,

You have been through a lot.  Sorry this is so hard.  Doctor's don't make it a general practice to run a CA-125 in a patient who has not been diagnosed with cancer.  You can insist on it.  I did for a number of years before being diagnosed with cancer.  Unfortunately, the timing didn't work out well for me because it was normal the year before my diagnosis and then very high when I was diagnosed.  You should be aware that the CA-125 is not an accurate test and it is not unusual to have a false positive, especially if you have inflammation in your pelvis.  Since you have a lot of issues going on there, it is likely this test would be positive for you, even if you don't have cancer. 

Yes, it is concerning that the contents of the cyst spilled during your surgery.  But I wouldn't panic about it right now.  You don't have a cancer diagnosis, so the fluid should have been harmless.  I agree, I can't imagine where the blood came from if not from a botched first surgery.  I know you have hopped around a bit with doctors.  It is possible, although I'm not saying this for sure, that one doctor is protecting the other.  I guess that would be a question to ask your next doctor, where this fluid might have come from.

It is not easy to get in to see a gynecological oncologist.  Generally speaking, you have to have a fairly certain cancer diagnosis before one will see you.  And typically the doctor who discovers the cancer will refer you to the gyn/onc.  

I know you feel as bad as you say.  I definitely think you need to find out what is happening in your pelvis.  There are certainly issues.  Please do not ignore the piece about autoimmunity.  This condition will make you feel horrible and a conventional doctor will not have any advice for you. It is possible that many of your symptoms are related to autoimmunity.  If you have one autoimmune condition, you likely have more than one.  And in the integrative world of cancer research it is becoming more and more evident that there is a link between autoimmunity and cancer.  

I hope things work out for you.  Let us know.

Trice6256 said:

Thank you so much for your

Thank you so much for your time. I will absolutely look into the AIP diet as you suggested. Your suggestion is extremely helpful and appreciated!!

 Dear Trice:

 Since I began my first of 6 chemo treatments for the 3^rd time around, (Oct. 20, 2016) I read your original entry, but did not answer because I might not be able to closely monitor your postings.  I see that others have stepped in to help, and that is good.  But with your second posting, some thoughts came to my mind.  First I always go to a conversion chart and convert centimeters to inches, so that it gives me a better idea of the actual size of the cysts.  The measurements came out as follows:

•  8.1 cm = 3.188976 inches

• 7.6 cm = 2.992126 inches

• 4.9 cm = 1.929134 inches

 Furthermore, I am concerned about the cysts that ruptured.  Now you certainly need to follow Tethys’ advice and find a gynecologic oncologist.   They specialize in gynecological cancers in particular and requires more intense training.  The links that I provide below will not do anything to assuage your anxiety, rather may add to it.  But since you mentioned you fertility medication in order to have your son in 2012, it naturally brought to mind some articles that I had read relative to fertility drugs.  You state that you are not going to try to have another child until your condition is absolutely diagnosed correctly.  That’s a very wise choice although I know how difficult it is to not be able to carry a child to term.  I have a close cousin who tried for years to have a child.  She was well within the child-bearing years but never had regular monthly periods but finally a miracle, and now she was finally able to have a daughter, and now is a proud and doting grandmother to two grandchildren. 

 As far as the CA-125 test is concerned, frankly I wonder, “what’s the big deal?”  I am constantly having a CBC and the techs just take one more small needle and draw blood into a separate tiny vile.  The complete blood check results are computed immediately, but it takes about 3 days for the CA125 number to show up on my medical record.

Here in the Tidewater area, as I suspect is the case with so many now, we have “electronic medical accounts that we can set up with our individual doctors.  Now they’re not all sophisticated enough to see all my info from one account.  Depending on the medical facility that I attend, they each will have a different name for their patient/doctor medical records charts.  I have one for my eye doctor, one for my regular GP, and one for my oncologist.  I’m glad you got copies of your medical records.  They are vital for your continued treatment and will serve as your own personal diary.  It’s also a check on medical bills that arrive in the mail.  All the bills do not have the “date of treatment”, and I have to check my calendar, or glance at the medical record to see if I am being properly billed. 

 Now just thought that I would send along some additional reputable medical articles relative to Ovarian Cysts.  Since you mention that you have taken fertility drugs, I think you will be interested to know something about different types of cysts.   I notice that some of them do have “blood” in them.  Understand that I am not trained in any kind of medical field, but I’ve always been able to find helpful answers on the web at reputable sites that help me to understand more about my own Peritoneal Carcinomatosis/Ovarian Cancer Stage IV diagnosis.  And I always have questions that I ask my oncologist each time we visit.  Make your list of questions, and expect the doctor to take time to explain them to you, or at least give you some words that will help you do more research when you get home.

 Now, if you’re like many women I know, our mind automatically runs to cancer, and it may not be that.  But you can’t ignore any symptoms that are not a part of your normal day-to-day feelings.  I, too, hope you find some answers.  The links I put below, are just for your information so you will be well versed when you go for a SECOND opinion.  Hopefully, you’re not in a country where socialized medicine is practiced, and your choices are more limited than here in the states. 

 Wishing you complete success in detecting the problem November 10^th.

 Loretta

_____________________________________________________

1. http://health.usnews.com/doctors/location-index/gynecologic-oncologists

 “Find Gynecologic Oncologists”

  _________________________________________________________ 

 2.  https://medlineplus.gov/ency/article/001504.htm

 “Ovarian cysts

   An ovarian cyst is a sac filled with fluid that forms on or inside an ovary.

 This article is about cysts that form during your monthly menstrual cycle, called functional cysts. Functional cysts are not the same as cysts caused by cancer or other diseases.

 Causes

 Each month during your menstrual cycle, a follicle grows on your ovary. The follicle is where an egg is developing. Most months, an egg is released from this follicle, called ovulation. If the follicle fails to break open and release an egg, the fluid stays in the follicle and forms a cyst. This is called a follicular cyst.

 Another type of cyst occurs after an egg has been released from a follicle. This is called a corpus luteum cyst. This type of cyst often contains a small amount of blood.

 Ovarian cysts are more common in the childbearing years between puberty and menopause. The condition is less common after menopause.

  Taking fertility drugs can cause a condition in which multiple large cysts are formed on the ovaries. This is called ovarian hyperstimulation syndrome. The cysts most often go away after a woman's period, or after a pregnancy.

 Functional ovarian cysts are not the same as ovarian tumors, or cysts due to hormone-related conditions such as polycystic ovary syndrome.

 Symptoms

 Ovarian cysts often cause no symptoms.

 An ovarian cyst is more likely to cause pain if it:

•  Becomes large

• Bleeds

• Breaks open

• Interferes with the blood supply to the ovary

• Is bumped during sexual intercourse

• Is twisted or causes twisting (torsion) of the fallopian tube

  Symptoms of ovarian cysts can also include:

• Bloating or swelling in the abdomen

• Pain during bowel movements

• Pain in the pelvis shortly before or after beginning a menstrual period

• Pain with intercourse or pelvic pain during movement

• Pelvic pain -- constant, dull aching

• Sudden and severe pelvic pain, often with nausea and vomiting, may be a sign of torsion or twisting of the ovary on its blood supply, or rupture of a cyst with internal bleeding

  Changes in menstrual periods are not common with follicular cysts, and are more common with corpus luteum cysts. Spotting or bleeding may occur with some cysts.

  Exams and Tests

  Your health care provider may discover a cyst during a pelvic exam, or when you have an ultrasound test for another reason.

  Ultrasound may be done to diagnose a cyst. Your provider may want to check you again in 6 to 8 weeks to make sure it is gone.

  Other imaging tests that may be done when needed include:

•  CT scan
• 
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Trice, it's very disconcerting when you don't feel well and no one can figure out what's going on.  Although we have been a little farther around the block than you, your health is still important and nothing is more important than feeling healthy.  I hope things work our well for you.  If you choose to do the AIP diet, I really like the Autoimmune Paleo Cookbook.  You will be amazed at how well you can feel.  It wasn't really until after I addressed my autoimmune issues that I started to feel better after completing chemo and over time, I started to feel better than I had for years.  The diet is challenging and restrictive, but the recipes in that book I mention are delicious.  Good luck.  I hope you feel better.