New/need some guidance

KC301
KC301 Member Posts: 1
in Ovarian Cancer #1

Hi everyone. I am new here and have some questions.

I have been undergoing infertility treatment. I had two failed IUIs and was about to start an IVF cycle when my doctor found a 2cm cyst and a polyp during transvaginal ultrasound so we were waiting for them to go away before starting the IVF. My estrogen was also very high in the 600s most likely due to the cyst And the IUI drugs.

however, in the meantime my primary doctor ran a CA-125 blood test for a couple of reasons: I have had consistent bloating, breast cancer runs strongly on my mothers side and have had one family member pass from it, and I wanted to have it run before I go on a significant amount of hormones for the IVF.

The level came back at 60. Now I know that the cyst could be elevating it. In addition, I did the test when I was menstruating and also have endometriosis and fibromyalgia which can also elevate it. 

My question is, how can I definitively rule out ovarian cancer before starting the IVf drugs? I understand that cysts, though less likely, can be cancerous. I have an apt with my GYN tomorrow who will run another ultrasound. What questions should I be asking? Im so confused. Thanks in advance.

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited September 2018 #2
    CA-125

    HI KC301,

    Sorry you're going through this.  You do have a lot of reasons to have an elevated CA-125.  Unfortunately there isn't a definitive test to completely rule out ovarian cancer.  There is a second test, however, that can be an indicator called HE-4 Human epididymis protein 4.  I can't tell you however, whether that could also be affected by the same variables that can affect your CA-125.  I am a huge advocate for holistic medicine and with the issues you have with your overall health, I think a naturopath could help get your hormones into balance, address the endometriosis, which is an autoimmune condition, reduce your overall cancer risk, and probably help you get pregnant without hormones. 

    Good luck

  • Chuck Z
    Chuck Z Member Posts: 22
    edited September 2018 #3
    CA-125

    An ultrasound is not normally used for detecting ovarian or PPC cancer. Ask your doctor about having a CT or PET scan. Also, with all the breast cancer on your mothers side. Has anybody on your mothers side been tested for the BRACA gene mutation?

  • Nicm
    Nicm Member Posts: 32 Member
    #4
    Hi! I don't have any advice

    Hi! I don't have any advice but wanted to add that you should get genetic testing done to see if you have a BRCA mutation or Lynch syndrome (which is a term used for various genes that put you at high risk for cancer). After my mom got ovarian cancer, I got genetic testing done (it is covered by most insurances) and found I had lynch syndrome. I'm now getting my pelvic exam and a biopsy of my uterus done once a year to prevent cancer. My oncologist also said this year we will start monitoring my CA 125 count, and I do have the option of removing my uterus and ovaries as a preventative measure (something you can consider after you're done having children). Getting the genetic testing done will help you decide which preventative measures are good to take. Best of luck to you! I hope you're able to get pregnant soon!

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #5
    Nicm~A bit of advice 4U~Have Fallopian tubes taken out also!

    Hello Nicm

    May I offer a bit of advice in addition to your good suggestions relative to testing?

    I strongly urge any lady having anticipating a hysterectomy to have her uterus, ovaries and fallopian tubes removed.  When I was first diagnosed with Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, my sweet gynecologist of umpteen years called me to express his sorrow. 

    He went on to tell me that now actually it is believed that Ovarian cancer begins in the Fallopian tubes, and that he is no longer just “tying tubes” he is removing them altogether.  This was not known when I had only my uterus removed at age 36.  (He was not my gynecologist at that time.)  I was diagnosed with metastatic OC in November of 2012.  By the grace of God I am still alive at age 79.  It hasn’t been easy, but all in all I’ve had many good days.  (I’ve outlived my 5-yr. handicap placard by the grace of God.)  But hindsight is always 20/20. 

    So I want to share what I did not know at age 36 with what I now know at age 79 in the hopes that anyone needing a hysterectomy will go “all the way” and take it all out.  

    Loretta

    Peritoneal Carcinomatosis/Ovarian cancer Stage IV

    _____________________________________________ 

    1.     https://khn.org/news/in-battle-against-ovarian-cancer-a-new-focus-on-fallopian-tubes/

    In Battle Against Ovarian Cancer, A New Focus on Fallopian Tubes

    “Two thin tubes that connect the ovaries to the uterus have assumed an outsize role in the battle against ovarian cancer.

    Research increasingly points to the likelihood that some of the most aggressive ovarian cancers originate in the fallopian tubes. Most doctors now believe there is little to lose by removing the tubes of women who are done bearing children — and potentially much to gain in terms of cancer prevention…”

    _________________________________________________

    2.     https://nyulangone.org/news/medscape-study-suggests-most-ovarian-cancers-start-fallopian-tubes

    “Most—and possibly all—ovarian cancers start not in ovaries, but instead in the fallopian tubes to which they are attached. This is the finding of a multicenter study of ovarian cancer genetics led by researchers from Perlmutter Cancer Center at NYU Langone Health, and published online October 17 in Nature Communications.

    “Based on a better understanding of its origins, our study suggests new strategies for the prevention and early detection of ovarian cancer,” senior study author Douglas A. Levine, MD, director of the Division of Gynecologic Oncology at Perlmutter Cancer Center and professor of obstetrics and gynecology at NYU School of Medicine, tells Medscape.

    The results revolve around the fallopian tubes, which enable egg cells that have the potential to be fertilized and become embryos to pass from the ovaries, where they are made, to the uterus. The new study found that ovarian cancer cells have more in common with cells covering the tips of fallopian tubes than with those on the surface of ovaries…”

    ______________________________________________ 

    3.     https://newsnetwork.mayoclinic.org/discussion/tubal-ligation-decreases-risk-of-developing-ovarian-cancer-2/

    “Tubal Ligation Decreases Risk of Developing Ovarian Cancer

    January 6, 2012 - Dear Mayo Clinic:

    Is it true that ovarian cancer may actually start in the fallopian tubes? Will having a tubal ligation lessen my chance of developing ovarian cancer? I have a family history of the disease and am a BRCA1 carrier.

    Answer:

    Recent research seems to suggest that some of the cells that may form one type of ovarian cancer come from the fallopian tubes. Other research has consistently shown that tubal ligation decreases the risk of developing ovarian cancer. But it's actually not clear if those two findings are related to one another.

    Ovaries are the almond-shaped organs on each side of the uterus that contain eggs and make the hormones that control a woman's reproductive cycle. The fallopian tubes are the passages through which eggs travel from the ovaries to the uterus. The fimbria is a fringe around the opening of a fallopian tube, in the direction of the ovary, but not attached to the ovary.

    Ovarian cancer can begin in cells located on the tissue that covers the outside of the ovary, in the egg-producing cells within an ovary, or in an ovary's hormone-producing cells. Most ovarian cancers begin on the outside cells. When investigating a possible link between the fallopian tubes and ovarian cancer, researchers examined the cells on the fallopian tube fimbria in women who had the BRCA1 or BRCA2 gene mutation. These gene mutations put women at high risk for breast and ovarian cancer.

    The researchers found that a significant percentage of women in the study had abnormal cells in the fallopian tube fimbria that were either precancerous or cancerous. This research suggests the distinct possibility that, rather than beginning in the cells on the outside layer of the ovary, ovarian cancer on the surface of the ovary may actually come from cancerous cells originating in the fimbria.

    Based on this information, researchers and doctors are now considering if, in an effort to catch ovarian cancer early, they should routinely examine the tissue of the fallopian tubes, especially in women who have the BRCA1 or BRCA2 gene mutation. Discussion is also under way regarding the possibility of removing the fallopian tubes, or perhaps just the fimbria, as a way to reduce the risk of ovarian cancer.

    In a tubal ligation procedure — also known as "having your tubes tied" — the fallopian tubes are cut or blocked permanently, preventing eggs from traveling from the ovaries to the uterus. Because tubal ligation may not have a direct impact on the fimbria, it is not clear if the procedure would affect the transfer of abnormal cells from the fimbria to the ovaries.

    However, other research has shown that tubal ligation substantially lowers a woman's risk of ovarian cancer. Researchers are not sure exactly why that is the case. Some suspect the reason may be that tubal ligation cuts off the ovaries' exposure to outside environmental factors that may increase the risk of ovarian cancer. Others think it could be related to the anatomical changes in the fallopian tubes that happen after a tubal ligation.

    Because you carry the BRCA1 gene mutation, making your risk of ovarian cancer much higher than normal, a discussion with your doctor about ways to decrease your ovarian cancer risk would definitely be worthwhile. The discussion should include risks, benefits and possible alternatives.

    — Paul Haluska, M.D., Ph.D., Medical Oncology, Mayo Clinic, Rochester, Minn.”

    ______________________End of references_________________

  • Bulldogsrule
    Bulldogsrule Member Posts: 5
    edited October 2018 #6
    Some things to keep in mind...

    I was diagnosed in May 2015 with stage 4 OVC. I knew for about 9 months things weren't right, even told the Drs I suspected cancer, but they didn't even do bloodwork (CA 125), other than normal CBC, etc. My gyno thought it was PID at first, but nothing confirmed this. My regular Dr thought it was something we should monitor, but nothing urgent, after saying my proteins were high in urine. A CT scan showed nothing at all (nor did ultrasounds, exams, etc), and then 8 weeks later they diagnosed me with stage 4. Doesn't make sense. Fluid collapsed my left lung, they drained many, many liters of fluid from my chest and abdomen. 

    After my experience, here are the things I'd seriously consider:

    -Get genetic testing to find out if you have BRCA 1 or 2. If you are positive for either mutation, it can increase your chances for a variety of cancers (breast, ovarian, cervical, pancreatic, etc) up to 85% depending on which cancer you're speaking of. This information will allow you to make a more informed decision.

    -Do research on what the mutations are, especially if you are positive for either. They act as a tumor supporessor. If you have the mutation, it can increase your chance of getting a cancer sooner than normal because the mutation hinders it from suppressing tumors as it might normally. This is why you will often see people with cancer in their later years. People who have cancer earlier on, as I did at 44 years old, sometimes have the mutation. 

    -Once you know if you have the mutation, then ask about all of the possible side effects of getting a radical hysterectomy and even an omentum (lining veil that hangs down over your obdominal organs, protective layer) removal. For example, immediate menopause, etc. 

    -Talk to a genetic counselor (should be able to talk to one through a gynocological oncologist office who will help you get genetic testing) about what the mutation means, what cancers are related to BRCA 1 vs 2, and risks associated with doing nothing vs hysterectomy, IVF drugs, hormones, etc.

    At this point you will feel you have much better information to make decisions with. You may decide to wait and see what the IVF, etc results in, have child(ren), then have sugery. Or, you may decide surgery is best now vs waiting. etc. Several options and only you can decide what is best for you.

    If I had known then what I know now, I would have had a radical hysterectomy when I was in my late 30s. My husband and I didn't want any children. Each time I brought up options with my gyno, he would encourage waiting, etc and remaining on the pill. At that time, of course, I had no idea my paternal aunt died of ovarian cancer at the age of 45 in 1971! And I certainly knew very little about this BRCA gene-thing. Hindsight is always 20/20, isn't it?!? Looking back, I would have had everything removed. Nothing is worth risking cancer, especially stage 4 of a type for which there is little survival (17-23% if stage 4) after 5 years. After diagnosis, I tested positive for the BRCA 1 mutation. I've done regular chemo, was NED for 14 months, then was on a clinical trial with PARP inhibitors til this May, now on a third trial with an immunotherapy. Scared, not sure if working. Hope to know more at next scan in November. 

    Also, seriosly look at naturopathic options. I agree with Tethys41!!! I have been reading Dr Nasha Winters book, The Metabolic Approach to Cancer, and have  a phone call scheduled with her soon. EVERY option is worth considering. It is a known fact that our bodies become resistant to standard of care chemo because the most enduring, healthy, robust cancer cells survive and we continue trying to treat a cancer that is getting stronger and stronger because only those robust cancer cells are surviving. Eventually, that is what you are treating -- the worst of the cancer cells. And if we are doing other things to our bodies (e.g. lack of the right nutrients, checmicals, etc), any treatment is likely to be less than effective. So, I'm looking into other things to do along with the immunotherapy, etc. Certainly can't hurt, might help.

    Good luck! Take it day by day.

     

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