Just beginning testing - “things don't look normal”

Danielspurpose
Danielspurpose Member Posts: 9
edited January 2018 in Ovarian Cancer #1

In November of last year I had a miscarriage at 8 weeks pregnant.  I had an ultrasound to confirm baby was gone and at that ultrasound they noted a shiny spot on right ovary and corpus luteum cyst on left ovary (normal).  My Dr called and requested that I have another ultrasound in 8 weeks to check the right ovary to be sure it had gone away.  I did that on Wednesday (2 days ago).  The tech said that things did not look "normal" but not horrible either.  I am waiting for official diagnosis and report right now.  She said the spot on right ovary had grown from 7-9mm.  She also found a spot on left ovary that appears solid, ragged edged and with increased blood flow going to it.  I can't remember how large that one was.

I'd appreciate hearing your stories and advice.  I am assuming once report comes in I will be referred to a gynecological oncologist and I am wanting CA-125 and Inhibin A & B blood tests.  What else other than physical exam should I expect initially?

I am 40, have had PCOS most of my fertile life - though controlled well.  I feel great and have been making huge strides in my health over the last couple of years.  This is really throwing me for a loop!  I have 5 children, three teens and a 4yo and 2yo.  My husband of nearly 22 years is wonderfully supportive, waiting for official news but understands from what the tech was saying that this could be potentially serious and life-changing.

Waiting is hard!

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Cysts

    Your medical history sounds similar to mine, except I never had children.  I probably had undiagnosed PCOS for years and was diagnosed with endometriosis at age 39.  Leading up to my cancer diagnosis, I was dealing with a cyst on my ovary that fluctuated from 5 cm, down to 2 cm.  Then, 7 weeks later, I had tumors throughout my abdomen and pelvis.  Of course it is quite possible your cysts are caused by something other than ovarian cancer.  But you are right, waiting is one of the hardest things.  

    I suspect our doctor will order a CT or PET scan, and the CA-125 will be good information as well.  Have you had a pregnancy test?  If you have cancer, it can come back positive because tumors often produce the hormone hCG, the same hormone used in pregnancy tests.  

    How have you been managing your PCOS?  I understand this condition is related to too much testosterone and if your hormones are out of whack, whether or not your diagnosis comes back as cancer, you probably want to have someone help you balance your hormones. 

    I was diagnosed in 2009 with stage IIIc ovarian cancer and my surgery was suboptimal, meaning there was quite a bit of cancer they could not remove.  That put me in the same catagory as stage IV, with regard to survival.  I did chemo with carboplatin/taxol and avastin and was in remission in early 2010.  I have not had any recurrances.  But I attribute my success to working with integrative and alternative practitioners during and after treatment.  Cancer is cause by a variety of imbalances, lack of nutrition and toxins.  I see women who pursue an integrative path with this disease have better outcomes than those who follow a strictly conventional protocol.

    Please let us know about your test results.  Hopefully, it will turn out this is something benign.

  • Danielspurpose
    Danielspurpose Member Posts: 9
    edited January 2018 #3
    Tethys41 said:

    Cysts

    Your medical history sounds similar to mine, except I never had children.  I probably had undiagnosed PCOS for years and was diagnosed with endometriosis at age 39.  Leading up to my cancer diagnosis, I was dealing with a cyst on my ovary that fluctuated from 5 cm, down to 2 cm.  Then, 7 weeks later, I had tumors throughout my abdomen and pelvis.  Of course it is quite possible your cysts are caused by something other than ovarian cancer.  But you are right, waiting is one of the hardest things.  

    I suspect our doctor will order a CT or PET scan, and the CA-125 will be good information as well.  Have you had a pregnancy test?  If you have cancer, it can come back positive because tumors often produce the hormone hCG, the same hormone used in pregnancy tests.  

    How have you been managing your PCOS?  I understand this condition is related to too much testosterone and if your hormones are out of whack, whether or not your diagnosis comes back as cancer, you probably want to have someone help you balance your hormones. 

    I was diagnosed in 2009 with stage IIIc ovarian cancer and my surgery was suboptimal, meaning there was quite a bit of cancer they could not remove.  That put me in the same catagory as stage IV, with regard to survival.  I did chemo with carboplatin/taxol and avastin and was in remission in early 2010.  I have not had any recurrances.  But I attribute my success to working with integrative and alternative practitioners during and after treatment.  Cancer is cause by a variety of imbalances, lack of nutrition and toxins.  I see women who pursue an integrative path with this disease have better outcomes than those who follow a strictly conventional protocol.

    Please let us know about your test results.  Hopefully, it will turn out this is something benign.

    A friend of mine who just

    A friend of mine who just went through this diagnosis and a complete hysterectomy said that her CA-125 was always normal, the Inhibin  A & B was what was a clearer marker for her and what they are continuing to monitor.  Has anyone else found that to be the same?

    I am so happy to hear of your remission and long-time of not recurring, thank you for sharing your story.  I would really like to know what alternative and integrative therapies/treatments you found helplful.  I am very natural-minded and have controlled PCOS through diet and herbs.

    Thank you for your time in responding!  I will update when I hear more.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
    Treatments

    Inhibin A and B are good markers for granulosa tumors and mucinous ovarian cancer, but not for the more common forms.  CA-125 is typically a good marker for ovarian cancer but not for everyone.  Do you know what type of ovarian cancer your friend had?

    I did conventional treatment, but also received high dose IV vitamin C, took a number of supplements, did mistletoe injections, drank Haelen 951, ate organic, and avoided carbohydrates and sugars.  I also spent two weeks at the Oasis of Hope hospital in Mexico, for iintensive integrative therapies.  Once I was finished with chemo, my naturopath and I were able to take an even more aggressive approach aimed at correcting my inbalances, like too much copper, inflammation, methylation and detoxification problems.  Each cancer patient is different and the best approach is to have testing done to determine what treatments will best treat your particular cancer.  There is even a blood test available, either the Biofocus test (out of Germany), or the RGCC test (out of Greece), which tests the cancer cells in your blood to determine which therapies and drugs will best address the cancer.  

  • Danielspurpose
    Danielspurpose Member Posts: 9
    #5

    My friend’s was granulosa cell tumor, so that makes sense.

    About a year ago I went through 6 months with an integrative Dr, lost 50#, worked on metal detox, reducing inflammation, methylation, cellular healing, etc...  I eat organic, no carbs and no sugar for past year and a half.  Hopefully all of that helps.  I am also hoping we are catching this early thanks to my angel baby.  Would give his life purpose.

    I look forward to learning about natural therapies that can come alongside conventional treatments safely.  Thanks so much!

     

  • Nicm
    Nicm Member Posts: 32 Member
    #6
    Tethys41 said:

    Treatments

    Inhibin A and B are good markers for granulosa tumors and mucinous ovarian cancer, but not for the more common forms.  CA-125 is typically a good marker for ovarian cancer but not for everyone.  Do you know what type of ovarian cancer your friend had?

    I did conventional treatment, but also received high dose IV vitamin C, took a number of supplements, did mistletoe injections, drank Haelen 951, ate organic, and avoided carbohydrates and sugars.  I also spent two weeks at the Oasis of Hope hospital in Mexico, for iintensive integrative therapies.  Once I was finished with chemo, my naturopath and I were able to take an even more aggressive approach aimed at correcting my inbalances, like too much copper, inflammation, methylation and detoxification problems.  Each cancer patient is different and the best approach is to have testing done to determine what treatments will best treat your particular cancer.  There is even a blood test available, either the Biofocus test (out of Germany), or the RGCC test (out of Greece), which tests the cancer cells in your blood to determine which therapies and drugs will best address the cancer.  

    Thank you for sharing. You've

    Thank you for sharing. You've given me much to look into! Thank you for being active on this forum. You give so many here hope!

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited January 2018 #7
    Nicm said:

    Thank you for sharing. You've

    Thank you for sharing. You've given me much to look into! Thank you for being active on this forum. You give so many here hope!

    :)

    Very happy to help. 

  • Danielspurpose
    Danielspurpose Member Posts: 9
    edited January 2018 #8
    Appt set for Thursday

    I have my first appt on Thursday with the Oncologist, I still don't have a diagnosis but after looking at my 2 u/s she ordered a 3rd and is seeing me.  Here we go...

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #9
    Good Luck

    It's very scary, but you will make it through this.  Keep us posted.  I will be thinking of you.

  • Danielspurpose
    Danielspurpose Member Posts: 9
    #10
    Update

    Dr appt was amazing.  After my 3rd hour-long Ultrasound this morning, she said the cyst of concern is the left ovary but it is only 2cm and likely is leftover corpus luteum (egg follicle) from pregnancy.  They don’t get to a point of biopsy until 5-10cm.  She is sure it will resolve but we can recheck in 6 months and she is happy to do blood tests at anytime if I want to.  The 7-9mm cyst on right side was probably an egg follicle enlarging and not a concern.  I have her phone and email to get in touch at anytime.  She didn’t even feel it was necessary to do an internal exam unless I wanted it.  I feel so much better!  Thank you for your support.  I will keep you all in our prayers.

  • Lighthouse4
    Lighthouse4 Member Posts: 2
    #11
    new to cancer

    last yr i had to change drs due to insurance issues. my new dr felt something she didn't like and sent me for an ultrasound, which led to a ct scan, and then a phone call sending me to an gynecologist/oncologist. within a few weeks i found out i have this cancer and had it all removed. it was almost 12#. i was never aware of any symptoms except weight gain. i am aware that i am fortunate in the fact it was caught early and only have to be monitered. no treatments at this time. i just had my 2nd dr visit for monitoring and everything is fine. i am well aware that there are others who have a more serious condition than i, but sometimes i feel guilty in that i have been so fortunate.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited May 2018 #12
    Guilt

    Congratulations on catching it quickly.  You were lucky your doctor was so proactive and got you in to see the right type of specialist.

    Never feel guilty that you had a good outcome.  Life is complicated with a lot of variables and lessons.  Everyone's situation is different with varying purposes.  You were fortunate, yet still probably learned some valuable life lessons from your experience.  Celebrate your good fortune. 

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