Considering a second opinion

Lindabirdd
Lindabirdd Member Posts: 4
in Ovarian Cancer #1

Hi, I am looking for general opinions on my ovarian cyst situation and whether I should just let it go or seek a second opinion. I am 58 yrs old and was diagnosed with high grade DCIS (stage 0 breast cancer) in 2016 when I was 53. I had a lumpectomy and radiation.  

This past March I experienced light post-menopausal bleeding but only for a couple of days. I wasn't terribly worried but decided to get it checked out and had an endometrial biopsy followed up with ultrasound (in May) both trans-abdominal and trans-vaginal. The biopsy was clear. The left ovary could not be seen. The ultrasound found a small ovarian cyst on my right ovary. The cyst was only .9 cm and was "minimally complex with thin septa". My gyno and I decided to do a follow-up ultrasound in August due to my previous breast cancer. The follow up US showed the cyst as mostly stable but had grown to 1.2 cm which I know is still very small. The single thin septa was still showing. The verdict is no further follow up was necessary "absent any clinical concerns".  I am not experiencing any unusual (For me) symptoms. I have a history of IBS and lumbar compression so I routinely feel gassy constipated and bloated and have lower abdomen pain and back pains. I recently had some light bleeding after intercourse. 

Here's my quandary. I would like to have another scan of some sort down the road to see if it's still growing or disappeared. But I'm told it's not necessary.  I mean, don't large cysts start out small? And isn't the goal to catch anything serious early on?
My breast oncologist isn't helpful because gynocological cancers are not her expertise. I have had genetic testing and was negative. I know there are some questions whether there is a true link between breast cancer and ovarian. I'm coming up on 5 years for the breast cancer and will have my last oncologist appt in December. I'm considering making my appointment with a different onco who would have more knowledge on ovarian cancer OR seeking out a new gynecologist for a second opinion. 

I want to be my own health advocate but I do tend to have health anxiety and could easily be blowing my situation out of proportion. It feels odd knowing the cyst is there and just waiting for symptoms to start. I am not even sure if ovarian cancer can start out as a small cyst. I don't want to be that person who some day says "if only I'd pushed for another scan". 

If you were me, would you forget about it or seek a second opinion for peace of mind? I know nobody can give me full on medical advice. I am looking for advice from others who have experienced cancer and know what the worry can feel like. 

 

Thank you Smile

Comments

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #2
    Second Opinion

    I had a similar history, negative biopsy, negative US, with just an ovarian cyst, followup US and the cyst had shrunk.  Then I was diagnosed with ovarian cancer after a third US and CT scan.  Ask your doctor for a CA-125 blood test.  If he or she says it's not necesssary, tell them you don't care, you want one.  You could also order the test on your own and pay cash.  If your CA-125 comes back normal and you're still concerned, find a doctor who will order a CT scan, or better yet, because of your history with radiation, request an MRI.  Don't let them talk you out of testing.  I was complacent and distracted when I was where you are and I didn't push things.  I knew to ask for a CA-125, yet I followed bad advice and waited around until things were out of control.  You have to be your own advocate. 

  • Lindabirdd
    Lindabirdd Member Posts: 4
    edited September 2020 #3
    Tethys41 said:

    Second Opinion

    I had a similar history, negative biopsy, negative US, with just an ovarian cyst, followup US and the cyst had shrunk.  Then I was diagnosed with ovarian cancer after a third US and CT scan.  Ask your doctor for a CA-125 blood test.  If he or she says it's not necesssary, tell them you don't care, you want one.  You could also order the test on your own and pay cash.  If your CA-125 comes back normal and you're still concerned, find a doctor who will order a CT scan, or better yet, because of your history with radiation, request an MRI.  Don't let them talk you out of testing.  I was complacent and distracted when I was where you are and I didn't push things.  I knew to ask for a CA-125, yet I followed bad advice and waited around until things were out of control.  You have to be your own advocate. 

    Thanks for your reply! I

    Thanks for your reply! I really appreciate your point of view.  I just saw this now so sorry I am slow to reply. I did ask for CA-125 but was told by both onco and gyno it was not necessary, the test was not reliable, and had too many false positives. It is so puzzling to me why simple followup is discouraged by Dr's when we all know the importance of early detection. We can handle the anxiety that comes with tests.  Did you experience any other symptoms before you were diagnosed? I'll try asking again for CA-125 at my December appointment. I also had not thought about a CT scan or MRI. I'll really have to be assertive. I hope you are doing well.

  • Lindabirdd
    Lindabirdd Member Posts: 4
    edited September 2020 #4
    I replied above. Thanks. Not

    I replied above. Thanks. Not used to this platform. 

  • tigergee21
    tigergee21 Member Posts: 1
    edited September 2020 #5
    Medicines

    Has anyone every had the combination of Mvasi and Cytoxan ???

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited October 2020 #6
    I agree with Tethys

    I would get a second opinion.  You didn't indicate what type of scan you had other than ultrasound.  I would definitely go for an MRI.  I personally would try PET scan but some insurances would prefer you to get a CT scan first.   A PET scan shows active cancer cells.  I have to say though that most of my cancer wasn't found in scans.  Although scans showed some things and slight activitiy, it was pain I was having that was my indicator.  The CA125 wasn't an indicator for me.  

    I even had a laparoscopy to see what was going on and they didn't find anything other than a tilted uterus and severe endometriosis.  They recommended a hysterectomy after I had a course of Lupron (6 months) to soften the lesions to aid in surgery.   After my hysterectomy on my followup I was told I had cancer.  I was 45 years old at the time.  It was in my uterus, cervix and left ovary.  Prior to that I had a colonoscopy because of the pain (nothing showed) and was told I was depressed.

    Stay vigilant if you think something is not right.

  • Lindabirdd
    Lindabirdd Member Posts: 4
    edited October 2020 #7
    Kaleena said:

    I agree with Tethys

    I would get a second opinion.  You didn't indicate what type of scan you had other than ultrasound.  I would definitely go for an MRI.  I personally would try PET scan but some insurances would prefer you to get a CT scan first.   A PET scan shows active cancer cells.  I have to say though that most of my cancer wasn't found in scans.  Although scans showed some things and slight activitiy, it was pain I was having that was my indicator.  The CA125 wasn't an indicator for me.  

    I even had a laparoscopy to see what was going on and they didn't find anything other than a tilted uterus and severe endometriosis.  They recommended a hysterectomy after I had a course of Lupron (6 months) to soften the lesions to aid in surgery.   After my hysterectomy on my followup I was told I had cancer.  I was 45 years old at the time.  It was in my uterus, cervix and left ovary.  Prior to that I had a colonoscopy because of the pain (nothing showed) and was told I was depressed.

    Stay vigilant if you think something is not right.

    Thank you, Kaleena. I had an

    Thank you, Kaleena. I had an endometrial biopsy prior to pelvic ultrasounds. Biopsy was clear. I very much appreciate your opinion and will explore further screening. 

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