Is this 100% OVCA?

WorriedHusband
WorriedHusband Member Posts: 12 Member
in Ovarian Cancer #1

Hi,

My wife was diagnosed with 2 cysts in her ovaries 2 weeks ago after discomfort in her lower abdomen and pelvic area.  One is 3,5cm and the other 5,5cm. Smaller one is simple and avascular, the other is complex and vascular as her ultrasound report says.

She had a chocolate cyst removed some 10 years ago. At first doctor thought the new cysts would be chocolate cysts as they usually recur however he was concerned and ordered some bloodwork and the results are really bad:

CA125= 823

HE4= 585

Now we're getting ready to see a gyno oncologist. Her ob gyn says there is a chance the elavation of these markers may be due to endometriosis which after doing a little research it seems highly unlikely to me.

Any thoughts?

Thanks

 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #2
    WorriedHusband, being turned

    WorriedHusband, being turned over to a gynecologic oncologist is the best first step.  They are truly specialists in gyn cancers and are the ones you want to be working with.  

    So am I reading this right that they only took the cysts and she still has her ovaries?  I am a visitor from the uterine board - still a gyn cancer - and hope one of the lovely ladies here can chime in with their knowledge.  It has been a little quiet here lately.  I love the women here but it had been hard.  

    If I had two things to tell you it would be this:

    1. Take this one step at a time.  You can't get too far ahead of yourself - deal with one thing at a time.

    2. Please know that none of us could make it through this journey without our loved ones.  It is a different journey than ours, but it is a journey nonetheless. 

     

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited February 2017 #3
    Hey there

    I'm also from the Uterine board but my recurrence happened on my remaining ovary so I come here sometimes. Unlike uterine cancer, ovarian cancer isn't biopsied before surgery. Going to a gynecologic oncologist is exactly where your wife should be at this point of the journey. 

    Your oncologist will review the reports from your wife's gynecologist. S/He will meet with you and your wife and will likely recommend a CT scan. My CA-125 was elevated as well but there was such a low risk for a recurrence, my oncologist was hoping this was all endometriosis. The CT scan, however, concurred with the ultrasound (likely malignant) so I was scheduled for surgery right away. 

    So to answer your question, is it 100% sure ovarian cancer or a benign tumor? They won't know until surgery is completed and pathology has had a chance to take a look at the mass. When I was diagnosed with cancer a few years ago, the best advice I ever got was to take it one day at a time. As you're probably already realizing, there's a lot of waiting involved. 

    Good luck and let us know how it turns out. 

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

    Sorry you and your wife are going through this.  As others have said, you won't know what her cysts are composed of until they are removed and go trough pathology.  It is true that her CA-125 can be elevated for reasons other than cancer, endometriosis being on of those.  I know how hard it is to not know what is happening, but you just won't know for awhile.  

    My advice it to gain as much knowledge in the meantime, so that you can make good decisions if those decisions have to be made.  I made two big choices that I think were essential; I did not want the doctors to tell me what they projected for me as far as survival; and I chosed to take an integrative approach, combining conventional treatment with alternatives, under the guidance of a naturopath.  In hindsight, I believe these choices made all the difference for me.  I have been in remission for 7 years.  

    Good luck. 

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #5
    CT and surgery

    Thank you all for your responses. We met with the oncologist he ordered a CT and scheduled my wife for surgery this Thursday. He said the surgery could be as simple as removing the cysts and the ovary involved or debulking based on the feedback from pathology during surgery.

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #6
    Tethys41 said:

    Worried

    Sorry you and your wife are going through this.  As others have said, you won't know what her cysts are composed of until they are removed and go trough pathology.  It is true that her CA-125 can be elevated for reasons other than cancer, endometriosis being on of those.  I know how hard it is to not know what is happening, but you just won't know for awhile.  

    My advice it to gain as much knowledge in the meantime, so that you can make good decisions if those decisions have to be made.  I made two big choices that I think were essential; I did not want the doctors to tell me what they projected for me as far as survival; and I chosed to take an integrative approach, combining conventional treatment with alternatives, under the guidance of a naturopath.  In hindsight, I believe these choices made all the difference for me.  I have been in remission for 7 years.  

    Good luck. 

    thanks Tethys,

    thanks Tethys,

    can you tell me a little more about the integrative approach You took? You may point me to a blog or web site if you'd like.

    thanks

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #7
    WorriedHusband said:

    CT and surgery

    Thank you all for your responses. We met with the oncologist he ordered a CT and scheduled my wife for surgery this Thursday. He said the surgery could be as simple as removing the cysts and the ovary involved or debulking based on the feedback from pathology during surgery.

    I wish

    your wife and you the very best.  I hope to hear good news in a few dayS

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    edited February 2017 #8
    Integrative

    Worried.  While I was in treatment, I followed the advice of a naturopath who did numerous blood tests on me to identify what was causing the cancer.  There are a number of variables that promote cancer and if you identify the ones involved in your wife's situation, an integrative doctor or naturopath can help her bring these imbalances back into balance.  Additionally, they can give advice on diet and supplements that will help her body deal with the impacts from the chemotherapy drugs.  There are various practitioners around the country that offer this guidance and some clinics that do this as well.  Unfortunately, unless her oncologist is an integrative oncologist, this information will not be automatically made available to her.  My gyn/onc did not expect me to reach remission and was certain that I would die of this disease.  I completed my chemo treatments, and included integrative therapies, and have been in remission since March of 2010. I also have not experienced any lingering side effects from the treatment.   If you are interested in more information about certain practitioners, let me know and I can send you some information in a private message. 

    Good luck.

  • Hopeful_712
    Hopeful_712 Member Posts: 1
    #9
    Integrative Approach

    Hi,

    I'm new here.  62 years old.  Back when I was 51, I had ovarian cysts and a CA-125 in the 600's.  I was very scared after doing research.  I had consultations with 3 gyc-oncs.  The third one said:  This scan shows cysts on your right ovary, this one shows cysts on your left ovary.  Cancer doesn't move around.  Go back to your gyn and have him do another test on his dime.  

    I had another test and the cysts were resolved.  So much for an elevated CA-125.

    Recently, I went through a divorce.  Lots of stress and some not-so-healthy eating.  Lots of bloating, indigestion, and fatigue. I assumed all stress-related.  Finally went for an ultrasound for suspicion of gallbladder disease.  That lead to a CT scan.  No gallbladder problem.  They found a 16 cm ovarian cyst, fluid on my lung, and a CA-125 of 2,929.  They will do a thoracentesis tomorrow to see if the lung fluid is positive for cancer.  If so, they are assuming stage IV OVCA.

    I  have many food and chemical sensitivites and use an allergy and environmental doctor.  I took my test results to him.  He has several suggestions for supportive therapies and I'd be interested to hear about any other integrative approaches.  

    My gyn-onc says until we have your cells under a microscope we're just speculating.  So I'm holding out hope that I have a group of misleading test results and the cyst is my body tring to expell all the stress from last year's personal issues.  And if not, well then, one day at time.  I can only live now, not in the future.  And I want to do whatever I can to naturally support my immune system early in the process.

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #10
    Update

    5 hour surgery today. initial assesment stage 3 high grade ovarian cancer. Tumors along with Ovaries, tubes and uterus and Mets on intestine, diaghpram and stomach debulked. Long journey ahead. We will definitely look into integrative therapies. Need to find a practitioner in So Cal. Tethys, i'll ask for your advice.

    CA125 not so much but I think HE4 is definetly a reliable predictor of cancer. 

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #11
    Hopeful_712 said:

    Integrative Approach

    Hi,

    I'm new here.  62 years old.  Back when I was 51, I had ovarian cysts and a CA-125 in the 600's.  I was very scared after doing research.  I had consultations with 3 gyc-oncs.  The third one said:  This scan shows cysts on your right ovary, this one shows cysts on your left ovary.  Cancer doesn't move around.  Go back to your gyn and have him do another test on his dime.  

    I had another test and the cysts were resolved.  So much for an elevated CA-125.

    Recently, I went through a divorce.  Lots of stress and some not-so-healthy eating.  Lots of bloating, indigestion, and fatigue. I assumed all stress-related.  Finally went for an ultrasound for suspicion of gallbladder disease.  That lead to a CT scan.  No gallbladder problem.  They found a 16 cm ovarian cyst, fluid on my lung, and a CA-125 of 2,929.  They will do a thoracentesis tomorrow to see if the lung fluid is positive for cancer.  If so, they are assuming stage IV OVCA.

    I  have many food and chemical sensitivites and use an allergy and environmental doctor.  I took my test results to him.  He has several suggestions for supportive therapies and I'd be interested to hear about any other integrative approaches.  

    My gyn-onc says until we have your cells under a microscope we're just speculating.  So I'm holding out hope that I have a group of misleading test results and the cyst is my body tring to expell all the stress from last year's personal issues.  And if not, well then, one day at time.  I can only live now, not in the future.  And I want to do whatever I can to naturally support my immune system early in the process.

    Good luck

    Hopeful,

    i wish you the best. I hope your lungs are not effected.

    CA 125 may be elevated for a variety of reasons. Have they done HE4?

     

  • Jodisgoing180
    Jodisgoing180 Member Posts: 97
    edited February 2017 #12
    WorriedHusband said:

    Update

    5 hour surgery today. initial assesment stage 3 high grade ovarian cancer. Tumors along with Ovaries, tubes and uterus and Mets on intestine, diaghpram and stomach debulked. Long journey ahead. We will definitely look into integrative therapies. Need to find a practitioner in So Cal. Tethys, i'll ask for your advice.

    CA125 not so much but I think HE4 is definetly a reliable predictor of cancer. 

    Worried Husband

    I'm so sorry that you it has been confirmed that it is cancer.  It is a long journey, but she is fighter and so are you.  Best of luck.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    #13
    WorriedHusband, I am sorry to

    WorriedHusband, I am sorry to hear this.  I think Tethys will help you with whatever she can.  It is a journey, but please try to take it a step a time.  You and your wife are in my prayers.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #14
    WorriedHusband said:

    Update

    5 hour surgery today. initial assesment stage 3 high grade ovarian cancer. Tumors along with Ovaries, tubes and uterus and Mets on intestine, diaghpram and stomach debulked. Long journey ahead. We will definitely look into integrative therapies. Need to find a practitioner in So Cal. Tethys, i'll ask for your advice.

    CA125 not so much but I think HE4 is definetly a reliable predictor of cancer. 

    Worried

    I sent you a private message.  Feel free to ask any questions.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,488 Member
    edited March 2017 #15
    Worried, thank you for coming

    Worried, thank you for coming back and giving us an update.  I have a friend with ovarian cancer and twisted bowel has been a problem for her a few times.  I would ask for recommendations on diet to try and help prevent it from recurring.   It is certainly nothing she (or you) want to go through.

    They may have told you that chemo can cause constipation as well and she will want to keep the laxatives in play.  Many of us have used Miralax - I remember starting the day before - and after reading the directions on the bottle asked the gyn onc's office if I could take it more than they said on the bottle.  They said yes - but you will want to call.

    Taxol is always going to be the chemo that they worry about most and people having a reaction - like your wife.  I believe several women have been switched to taxotere because of the same reaction.  Hopefully someone will chime in here with their experience.

    You are both in my prayers

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #16
    NoTimeForCancer said:

    Worried, thank you for coming

    Worried, thank you for coming back and giving us an update.  I have a friend with ovarian cancer and twisted bowel has been a problem for her a few times.  I would ask for recommendations on diet to try and help prevent it from recurring.   It is certainly nothing she (or you) want to go through.

    They may have told you that chemo can cause constipation as well and she will want to keep the laxatives in play.  Many of us have used Miralax - I remember starting the day before - and after reading the directions on the bottle asked the gyn onc's office if I could take it more than they said on the bottle.  They said yes - but you will want to call.

    Taxol is always going to be the chemo that they worry about most and people having a reaction - like your wife.  I believe several women have been switched to taxotere because of the same reaction.  Hopefully someone will chime in here with their experience.

    You are both in my prayers

    Thanks

    We'd definitely appreciate tips on diet to avoid bowel obstruction.

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #17
    Update and Question

    I thought I would provide an update about my wife's battle with ovarian cancer.

    15 days after the surgery my wife was hospitalized for extreme abdominal pain. X-Ray showed constipation. They could not get anything to work e.g. enema, suppository, etc. She started vomiting and they decided to do a CT scan and it showed twisted bowel! We were devestated as that meant another surgery. Luckily she started to go in a few hours after the CT. They said the contrast liquid she drank for the CT scan might have cleared the obstruction. The next day they did a small intestine follow through exam and there was no sign of obstruction. We were discharged. However, she still needs senokot to go.

    Because of this bowel episode we had to postpone the start of chemo to last Thursday.

    BTW, she declined to participate in a clinical trial for Avelumab, anti–PD-L1 IgG1 antibody. I hope we don't regret this decision.

    We went with standard of care, taxol and carboplatin. However my wife had an immediate reaction to Taxol. She was given cortisone to be stabilized. They tried taxol again in 30 minutes but same thing happened. So the first day of chemo she only received Carboplatin.

    Next session they will try taxotere instead of taxol. 

    Anybody have experience with taxotere? I read that Abraxane has a better toxicity profile. Any experience with that drug?

    Thanks

     

  • bettyboop3917
    bettyboop3917 Member Posts: 45
    edited April 2017 #18
    bowel obstructions

    I am dealing with a partial bowel ovstruction. I take milk of magnesia to help keep me going. Most of what I tried made me feel like my I had been kicked in the gut by a mule. This I fould works the best for me. Your wife may find she has to try a few things to find want works for her. Our goal is to keep me going till I have finished chemo. Then we can fix what is going on. 

    I have not be on that combo of chemo before. So I can't help you out with that. 

  • WorriedHusband
    WorriedHusband Member Posts: 12 Member
    #19
    bettyboop3917 said:

    bowel obstructions

    I am dealing with a partial bowel ovstruction. I take milk of magnesia to help keep me going. Most of what I tried made me feel like my I had been kicked in the gut by a mule. This I fould works the best for me. Your wife may find she has to try a few things to find want works for her. Our goal is to keep me going till I have finished chemo. Then we can fix what is going on. 

    I have not be on that combo of chemo before. So I can't help you out with that. 

    Milk of Magnesia

    is the only thing that works for my wife as well. Unfortunately Colace, Miralax or Senokot stopped working.

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