Struggle with doctor

Nivalieve
Nivalieve Member Posts: 2
in Ovarian Cancer #1

Hi

I am 39 and have been having abnormal bleeding (July I bled for 7 days, off ten and then 7 more. August no period. September I started on the 18th and ran until October 4th and started again on October 8th. my normal is three days once a month) as well as bloating, abdominal pain, extreme exhaustion and needing to go to the bathroom more frequently. I have had three ultrasounds that show I have several fibroids and a cyst on each ovary. None of these masses seem to be very large. I just have that feeling that something else is at play here. I was able to get a CA 125 which came back as normal 17. My GP happily stated that meant I didn't have cancer even though the note on the results state that this doesn't diagnose cancer or elimitate the possibility either or.

My second gynecologist states that the problems I am having have nothing to do with the fibroids and that I don't have any symptoms of ovac. She also says that there wouldn't be anything to do a biopsy on. I tried to go around her and go straight to MD Anderson or a local gynecologist oncologist but they won't see me without a diagnosis or a doctor referral. At this point I just want a Biopsy done to determine if it is ovac or is not. Any suggestion on how to convince my doctor to do this? She didn't even think that my fibroids warranted removal even though it is affecting my job and quality of life.

I'm scheduled to see her tomorrow. 

I've sort of been on medical leave from my job for a month today. My doctors won't stand in the gap (GP or gyno) while I insist on getting this taken care of and physically in turmoil. They state that the time off for fibroids isn't a proper response. Don't want to lose my job while getting someone to do the very basic diagnostic in this disease. 

 

Thanks for for your time. Rebecca

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Hi Rebecca:
    Sorry you are

    Hi Rebecca:

    Sorry you are having some issues and dealing with physicians can be exhausting in itself.   What does your physician say about the fibroids?  Although they say its not symptoms of ovarian cancer, it could be uterine cancer.   

    My case in point.   For about a year, not feeling well.  bloating, back pain, sometimes swallowing issues, bathroom frequently (almost everywhere I went).    Went to my PCP - first suggested I was depressed (i wasn't), then said to get a colonoscopy (which I did and it was fine).   The pain started getting worse so I went to my gyne.   He told me I had endometriosis (which I didn't know - but I did have 3 C-Section births) and related those symptoms and pain to that.   I had a vaginal ultrasound which only showed a tilted uterus and a deep ovary.   So by this time, I am in extreme pain, my gyne decides to do a laproscopy.   He indicated that the endometrosis caused a lot of scarring and that I would need a hysterectomy but had to wait 6 months because he wanted me to take Lupron to make the lesions softer for surgery.   I asked for a scan and he indicated that wouldn't show anything and that it wasn't cancer.

    After six months and my hysterectomy, upon my follow up appointment I am told I have Stage 3a, Grade 2 Endometrial Adenocarcinoma.  They found it in my uterus, cervix and left ovary.    For over a year I knew something was wrong.   My CA125 was in normal range the whole time.

    If you really feel something is wrong and its just not your normal worrying of stuff, keep at it until you get the answers you need.  But you have to be upfront with your doctors and make sure you tell them all of your symptoms you are experiencing.    Also, if it has been several months, get another CA125 - although this number can go up if you have inflammation.

    My best to you,

     

    Kathy

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #3
    Hi Rebecca,I think you are

    Hi Rebecca,

    I think you are correct in thinking that your symptoms are worrisom.  I also know that, at age 39, your doctors are not really thinking you might have cancer.  In my experience, many times, the docs tend to go with the odds more than the symptoms. 

    Anyway, I think you should seek out further gynecologists for further testing.  I would tell the office on the phone what your symptoms and problems are and that you're looking for a second opinion.  Conscientious offices will work to help nail it down to your satisfaction and they are out there.  I feel by discussing it on the phone beforehand, you increase your chances of finding a 'good doctor' who will get to the bottom of it. 

    At the age of 44, I was not taken seriously by some docs and eventually found that I had both ovarian and endometrial cancer.  Eventually I found out from a radiation tech that, had my doc sent me for a CT scan, they would have found it long ago.  He was telling me that doctors will sometimes send patients for a CT scan when they are having trouble figuring out what is wrong.  So that's my recommendation.  Find a gynecologist who will send you for a CT scan.  Your symptoms may very well warrant a CT scan being approved by your health insurance.  Heck, I might even pay for it myself if it were me. 

    Also, there is a second blood test that my doc does, the HE4 test.  It was ultimately a trans vag ultrasound that found my ovarian cancer while the uterine did not show up on that ultrasound.

    Best of luck to you!

    Lisa 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #4

     

    Hello Rebecca ~

                 You have every right to be concerned, and I am sorry that the doctors you have consulted are not as worried as you are. 

                 My experience will only serve to make you more determined to get adequate care.  Except for some groin pain one weekend, I never had a clue as what “symptoms” for Ovarian Cancer would entail.  One day I felt a small little lump on the left side of my abdomen.  I thought I had a hernia, so I went to my GP.  He didn’t do any special tests, but he concluded by “feeling of my abdomen while I was in both a sitting position, lying down position and standing position, that I “most likely” had a hernia.  He said, “Do you want to wait a bit and see how things develop?”  Before I even said a word, he seemed to read my facial expression.  He said, “I can tell that you don’t want to wait.”  So he set about to set up an appointment with a surgeon for me. 

                 But the following week, I did have some unusual groin pain, and felt a bit weak and nauseated.  During that time I was in regular contact with a good friend whose husband, age 50, had died from Esophageal Cancer, Stage IV.  When I told her what was going on, she said, “Promise me that you will go to the Emergency Room, if you have that pain again.”  Sure enough, a couple of days later I had the same pain.  So I did my usual housecleaning that morning, and went down to the Emergency room in the afternoon.

                 The conversation went like this.  “What do you think your problem is?”  I said, “I think I have a hernia.”  I had no idea what they were going to do but by this time I was very concerned about what might be wrong with me.  The hospital did a CT scan, and two hours later, I was presented with a copy of the scan.  It was “Peritoneal Carcinomatosis.”  I asked the doctor to show me the scan, and so he carried me into a room full of doctors, pulled up my scan, and showed me numerous tumors in the peritoneal fluid in my abdomen. This was in November of 2012.  I went to the University of Pittsburgh Medical Center (UPMC) for a second opinion in December of 2012.  There a PET/CT scan showed I also had cancer in my ovaries.  They also did exploratory surgery and found that the tumors were too large and too many to operate.  They said, “Go home and have chemo, then we will conduct another evaluation.

                 So I came home, had chemo of Carboplatin and Taxol in the Spring.  Then returned to UPMC in July for Cytoreductive Surgery (CRS).  My second series of chemo was just completed September 25th of this year.  A CT Scan is scheduled to check the effectiveness of this series of treatments.

                 Now, Rebecca, I tell you all this to say, “Please don’t settle for the answers you have been given so far.  Thirty-nine is a bit early for the “change of life”, isn’t it?  And might I add this, at age 36, I had a hysterectomy, but only my uterus was removed.  My gynecologist told me recently that he has cohorts that believe that Ovarian Cancer now begins in the Fallopian tubes.  So he is now going to remove the uterus, ovaries and fallopian tubes from now on.  Perhaps I might not have Ovarian cancer today, had I had a complete hysterectomy back then.  I am now 76 years old. 

     Please understand that I am “not” diagnosing you with Ovarian cancer, but I can share my story since you have written to this Ovarian Cancer Link.  So I tell you this story for two reasons.  One “don’t settle for inaction.”  And I agree with “Lisa” you need a CT Scan.  And if it is determined that no cancer is present, yet  a hysterectomy is recommended, if I were you, I would want it to be a complete one. 

                 We’re not doctors here, but all who have answered you so far agree that what you are describing is not “normal.”  Someone should be taking you more seriously.  Don’t take “nothing is wrong” for an answer.  Continue to be persistent.  Someone told me that when you go to the ER, that you don’t have to have a referral from a doctor elsewhere before you can have a CT scan.  The physicians on duty make their own determination as to how best to treat you.  So I’m glad I followed my friend’s advice and went to the ER, although it was certainly a shock when I read the diagnosis.

                 Lastly, I would be curious to know what your “second gynecologist” says are the “symptoms” of Ovarian Cancer.     The first symptoms I had turned out to be “Stage IV” Ovarian Cancer.  Through the years, I have had routine pap smears and mammograms, as well as health checkups, but nothing to check for Ovarian Cancer.    All this is not to say that you have Ovarian cancer.  It is to say that you want every test available that will rule out that possibility.  Heaven knows we all want it to be something less serious.  You can’t go on this way.  I hope you will soon find a sympathetic ear from a doctor whose training includes “listening to their patient!”  You’ve been “put off” too long already.   

     Praying you will find the help you need quickly, 

     Loretta

     Stage IV Ovarian/Peritoneal Carcinomatosis

    -------------

      P.S.  This link “Can ovarian cancer be found early? is very informative.  You might want to print it out, and take it to your doctor. 

     http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-detection

    “…CA-125 is a protein in the blood. In many women with ovarian cancer, levels of CA-125 are high. This test can be useful as a tumor marker to help guide treatment in women known to have ovarian cancer, because a high level often goes down if treatment is working.

     But checking CA-125 levels has not been found to be as useful as a screening test for ovarian cancer. The problem with using this test for screening is that common conditions other than cancer can also cause high levels of CA-125. In women who have not been diagnosed with cancer, a high CA-125 level is more often caused by one of these other conditions and not ovarian cancer. Also, not everyone who has ovarian cancer has a high CA-125 level…

     …Researchers continue to look for new tests to help diagnose ovarian cancer early but currently there are no reliable screening tests.” Last Medical Review: 08/05/2014 - Last Revised: 03/12/2015

     

  • Nivalieve
    Nivalieve Member Posts: 2
    #5
    Your responses

    Thank you sooo much ladies for your responses. It warms my heart to be heard and to be supported. My prayers and thoughts go out to you wherever you are in this journey. 

    Thank you again.

    Much love and laughter

    Rebecca

  • debrajo
    debrajo Member Posts: 1,095 Member
    #6
    Nivalieve said:

    Your responses

    Thank you sooo much ladies for your responses. It warms my heart to be heard and to be supported. My prayers and thoughts go out to you wherever you are in this journey. 

    Thank you again.

    Much love and laughter

    Rebecca

    Hi

    How far are you from Houston?  I am at M. D. Anderson.  Try getting a referal to Kelsey-Seabol Diagnostic .  They specialize in the whole diagnosies thing.  They saved my mothers life with a quick(three days)diagnosies of a bone tumor.  They sent her straight to Medothist Houspital-Houston for surgery.  Don't wait, don't listen to the dr.  Be your own advocate!  Sorry you are going through this, but would be even sorrier if you waited!  Best, DebraJo

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