What to expect at first oncology appt?

Danielspurpose
Danielspurpose Member Posts: 9
in Ovarian Cancer #1

After 2 u/s 8 weeks apart showing something on ovaries my family Dr referred me to a gynecology oncologist.  My first appt is this Thursday.  What should I expect?  I have another u/s in the AM and then meet with her in the afternoon.  They did not give me any info on what to bring, info they would collect, etc...  any tips, time savers, coping mechanisms?  Hubby is coming with me and we will spend the day together, grab some lunch etc...  Deep breaths, trying hard but feeling pretty anxious!

Comments

  • jontaejones
    jontaejones Member Posts: 8 Member
    #2
    What I can tell you from my

    What I can tell you from my experience with ER doctors, and gynecologists and oncologists is that ...

    1) They have a lot of other patients.

    2) They will try and give you the very optimistic bent. In other words, if in their mind, you have a 90% chance of having ovarian cancer, they will probably give you 50/50.

     

    In other words, you have to be your own doctor. Do you have the reports from the radiologist? Take a look and see what he/she wrote. Study about the stages of ovarian cancer. I believe its generally a 2 step process. 1) Find out if there has been spreading from the ovaries, in which case malignancy is basically assumed and surgery is performed or 2) if it is confined to the ovaries, a biopsy is done to confirm malignancy.

     

    Push the doctors to perform the tests necessary to confirm the diagnosis as soon as possible. I believe the most effective screening tools are US and CT with contrast. CA-125 cannot confirm a diagnosis. Only a biopsy can. For instance, maybe if the CA-125 is normal and the doctor wants to let it go, maybe you want to push for a biopsy.

     

    God forbid if it is cancer, it sounds to be caught at an early stage from your previous post, which is very rarely done. 

     

    There are some positive signs though. I pray you get good news.

  • Danielspurpose
    Danielspurpose Member Posts: 9
    edited January 2018 #3
    Thank you

    Thank you for the info JontaeJones.  I have not yet seen the radiologist reports but I do plan to request copies of all 3 when I am there this week.  It's such a slippery slope between researching and being prepared to advocate for yourself, and completely freaking yourself out.  I am one who likes info and to be prepared, I hate to be blind-sided and have to make decisions without time to fully prepare myself.  I appreciate the experience of others who have been through these steps.

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

    One critical consideration is, you want a very experienced gynecologic oncologist to perform your surgery, if you need it.  Second opinions are always an option.  The first doctor I interviewed had only performed 50 debulking surgeries and I was not comfortable with that.  I ended up going to a teaching hospital, and one of the top gyn/oncs in the country performed my surgery.  I think his position afforded me some options, which might not have been available to me if I had seen someone in a private practice, with less experience. 

  • Danielspurpose
    Danielspurpose Member Posts: 9
    edited January 2018 #5
    Silly question

    I know, feel ridiculous for asking but trying to decide what to wear tomorrow for my u/s and exam.  (Detail planning is my coping mechanism).  I always get so cold and shaky on table.  Thinking a skirt, sweater, and some extra long fuzzy socks!?  I want to bring my fav quilt - do you think they will let hubby cover my shoulders and chest with that if needed?  I started a knitting project yesterday so I have something to keep my hands busy during the waiting between appts.  Any other ideas or tips?

  • Danielspurpose
    Danielspurpose Member Posts: 9
    #6
    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.

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #7
    Great News!!!

    Thank you so much for the update.  I am so happy your news was good.  Take care and don't forget to celebrate!!!

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