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Bad Patient--or just a woman who wants a diagnosis?

24

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  • MoonRabbit
    MoonRabbit Member Posts: 2
    edited November 2018

    So sorry that so many of your doctors are not helpful. I was unable to take tamoxifen or aromatase inhibitors, but my oncologist didn’t dismiss me. He does blood work, orders for mammograms, occasionally ends the visit with a hug if I seem an a bit down. I’m mad at your oncologist for you - there’s more to doctoring than drugs!

    I am in agreement about advice to visit a comprehensive cancer center if individual referrals aren’t workin. During my diagnosis I was getting a bit of a run- around from local doctors and found Mercy Medical Breast Center in Baltimore worth the hour drive. That’s where I chose to have my surgery, and yearly follow-up visits.

    I hope you get a speedy resolution!

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    Oh moonrabbit,

    You just reminded me

    We haven't heard back from Kassy...

    How did you go at UVA? The cyst? Any further tests?


  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Hi Ladies!

    UVA wouldn’t take me without a positive diagnosis, but the self-pay ct scan caused my GP to go over all my records more closely, and he is now on a mission to get answers (although still in his laid back way!) I don’t feel as unlistened to now, which along with support from you ladies, is helping.

    Friday I am scheduled for a vaginal ultrasound of the ovarian cyst, an ultrasound of the thyroid nodules (not too worried about that for some reason), and a bone scan to check out the weird rib fractures. I AM worried about that... seems highly coincidental that they are right under my treated breast, but should know more by the end of the day Friday.

    Meanwhile my breasts and underarms still hurt and wearing an ever-bigger bra is still painful. But plan to push that with the gyn Friday too.

    Thanks, please take care—will update Friday eve.

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    thanks for updating us Kassy.

    it is great to hear that your GP is paying closer attention to your symptoms now.

    well done!

    best of luck for a pain free u/sound investigating cyst and hoping fervently that bone scan will have a great outcome for you. ditto thyroid u/sound.

    keep us in the loop.

    Hug

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Hi, ladies. My bone scan was postponed until next Thursday because there is a world-wide shortage of the radioactive dye??? But meanwhile the vaginal ultrasound of my ovarian cyst showed a complex, septated 6cm mucus-filled cyst. Outer wall was 2.2 mm. No obvious solids. So, not definitely malignant but certainly not a simple cyst that we could watch and wait. Gyn did a CA125 tumor marker test, which I have been wanting to have for months, so that’s good. And they made an appointment for me with a gynecological oncologist in Richmond on Wednesday. Making progress on information but stressful—I am going to make and eat an entire batch of brownies!

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    what time should we come over to share cookies Kassy? I mean..purely as a favor to you....(cough...)

    Worldwide shortage of radioactive dye? A sentence you never thought you would hear...right?

    I now also know what a septated cyst is thanks to Dr. Google. So glad you are right on top of all this Kassy. Hang in there...answers and help are close at hand.

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    🍪🥛Wish you could! Thanks, Astrid

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    mmmm....they smell delicious!Hug

  • salamandra
    salamandra Member Posts: 735
    edited November 2018

    I'm so glad you are finally getting some follow through and answers! That sucks about the delay of the bone scan.

    Did you see this article/video about "difficult patients"? It's really good.

  • KBeee
    KBeee Member Posts: 695
    edited November 2018

    Glad they are taking you seriously now, but you should not have to pay for your own CT scan to get someone to listen to you.

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Moonrabbit, sorry the Arimidex didn't work for you (like me!) but happy for you that your doctor was supportive of your decision! Quality of life issues are and must be our own decisions!

    Salamandra, I loved the Difficult Patient video. Thank you so much for that link. I am evolved enough (and old enough) to usually be assertive but those old messages to "be good" still break through sometimes and make me question myself or make me feel bad about myself. I love this, and will be sharing it with my therapist (who I found to help me deal with all of this) so she can share it with others. She will love it too. Her work for the last five years or so has included working at a teaching medical center "training" new doctors to improve their connection with patients. She starts by asking them to make eye contact with a patient--and most of them object that it will take too long! But after the training most are appreciative.

    KBeee, I have seen your posts throughout the community, and you are a warrior! I so admire your commitment to encouraging women to advocate for themselves. Thank you for being there! And you are completely right, I should not have had to pay for the scan. Aside from the principle of the thing, I was fortunate enough to be able to do it, but what about all the women for whom it would be financially impossible?

    Astrid, I thought of you as I ate my brownies! Thank you for your support!

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    Thinking of you for bone scan ahead.

    We are all with you in spirit.

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    it’s 3:40 am here. I rarely have trouble sleeping but I woke up in a state of anxiety. I got a call from the gynecologist I saw for the first time on Friday for the ultrasound of my ovarian cyst, earlier, Sunday evening, at 7:00. I didn’t recognize the number so I let it go to voice mail. His message said he was calling because he got my test results back.

    I am assuming it was my CA125 serum marker test but he didn’t say. Surely he wouldn’t call Sunday about an abnormal pap or something? He said to call him back but I didn’t. While I appreciate his dedication in not waiting until tomorrow, I truly do—the man should get some down time—but I think really I wanted the down time. Last night (or before I went to bed) I thought he probablywanted to reassure me as soon as possible, as he seems kind and this is a small town where everything is personal—for better or worse. But would he call me on a Sunday evening to reassure me that everything is normal? Especially when 50% of the time in early stage ovarian cancer CA125 levels are not elevated? So that wouldn’t necessarily be meaningful. (The test is low sensitivity but high specificity. I do think we should all get some sort of certificate for our hard-earned knowledge.) Or would he call on a Sunday evening because I would be home, not at work, with access to family and friends?

    This is the kind of second-guessing that drives my husband crazy, but I know you all have been there. I hope you all are having a good night, and that no one reads this until the sun is way up!

    I am so grateful for this community.

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    Hi Kassy..it is understandable to be nervous after you have been called by a doc. any time... netherlone on a Sunday evening. This is an anxious time for you trying to manage the unknown and thoughts running around your head at an alarming rate. If course they are.

    So now... put on some soothing music and slow your breathing down...tomorrow tou will know more. If you have a deep relaxation CD with a guiding voice getting you to relax your body ..that might be useful too right now.

    Whatever it is..you will deal with it tomorrow. Sending love and prayers your way Heart


  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Thank you. You were right. CA125 is 15.7, within normal range.

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    that is good news for now.

  • KBeee
    KBeee Member Posts: 695
    edited November 2018

    glad it was nor

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Turns out there are Risk of Malignancy calculators for Ovarian masses to help decide on surgery because they cannot be safely biopsied. (Think of it as a water balloon potentially filled with malignant cells that could leak into the perineal cavity.For that reason they are only biopsied after removal.)

    RMI calculators consist of this formula :

    U (ultrasound score) x M (pre or postmenopause score) x CA125 =RMI

    If you plug in the most conservative interpretation of my ultrasound in the most conservative (conservative = more towards waiting and watching) calculator, RMI 1, it comes out as Intermediate Risk of malignancy. If you use the RMI 2 (which assigns a higher value to menopausal status), and a slightly more aggressive (highly subjective) grade of ultrasound, it comes out as High Risk.

    Neither of those formulas account for the increased risk factor of having had “a personal history of breast cancer.”

    It’s now a 6cm complex cyst. I want it—and the organ it came in on-out of there! They might as well do a full hysterectomy and be done with it. I am fortunate that if in my search for answers for breast issues I have incidentally found this cyst at a point where—even if it is malignant, removing it will give me a 95% chance of survival, and, and if it’s not, it will be the removal of current or future worry.

    I have been thinking a lot about our sisters dealing with ovarian cancer. Most women’s ovarian cancer is found at a late stage. What they are dealing with is so much more black and white in terms of outcome with far fewer shades of grey—and therefore less hope! Maybe we should pool together our support resources somehow...



    Ovarian cancer has a 5 year survival rate of 95% when caught at stage 1, but drops drastically for later stages.


  • hopeful82014
    hopeful82014 Member Posts: 887
    edited November 2018

    Kassy, many/most ovarian cancer researchers now believe that ovarian cancer may actually first appear in the fallopian tubes, so please be sure to discuss that in detail w/your gynecologic oncologist. If you're considering surgery this is a vital issue. Take care.

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Bone scan was clean—huge relief!!!

    Now just need to get through the hysterectomy and hope the badly behaving ovary is b9. Young Surgeon (UVA then Duke, probably decent) said I need a full hysterectomy (ovaries, Fallopian tubes, cervix, uterus) but was not very excited until I told him my BC was lobular, then he perked up and started talking about staging and taking out lymph nodes and other body parts. Hopefully we won't go there but if we do, I do NOT want my lymph nodes removed. It's only for staging—not curative like it might be for BC—and there apparently is no such thing as a sentinel node in ovarian cancer so they take them all. And then 10% of women have lymphodema of the leg for the rest of their lives. No. If there is a malignancy he will just have to be more creative about staging and use his brainpower for problem solving, not cutting.

    I asked my GP to tell the surgeon that I don't want my lymph nodes out and he said he would do his best but I should remind the surgeon the day of—or even write it on my leg! (Well that certainly inspires confidence!) Surgery on 11/29

    Hope you all are well! And I hope you have a true break over Thanksgiving and can forget what you as survivors and warriors are always dealing with for a few days

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    so relieved for you Kassy re bone scan.

    Go ahead and write on your leg...or..you know..just tell him before the surgery.Winking

    So sorry you are having full hysterectomy though. Quite an ordeal no doubt.





  • KBeee
    KBeee Member Posts: 695
    edited November 2018

    Great news on the bone scan!

  • Kassy54
    Kassy54 Member Posts: 47
    edited November 2018

    Change in plan. In the process of a meltdown, I realized I don't want to wake up in St. Mary's to hear bad news and be handed a list of oncologists. If there is bad news (and the risk estimate is anywhere from 5%-60% depending on which factors are included), I want a team with a plan. So I called UVA, and it turns out that because of my breast cancer--which apparently puts us at greater risk for ovarian cancer--they are willing to see me. I will see one of their gynecological oncologists at the Emily Courvic Cancer Center on Monday, and have been assured that she has OR time available to get me in for surgery as soon as possible. The cancer center takes a holistic approach, and I am really relieved. Plus, now that I am in their system, maybe I can get some real answers to the breast changes that originally started all of this!

    Hope everyone has a warm and safe Thanksgiving.

  • jo6359
    jo6359 Member Posts: 2,009
    edited March 2019

    kassy- I don't think you are a bad patient. You have the right to be heard. And let's face it. Once you have breast cancer our biggest fear is reoccurrence. You are entitled to answers. And I agree with the other ladies to see an oncologist annually.

  • salamandra
    salamandra Member Posts: 735
    edited November 2018

    Great self-advocacy and what a promising start! Good luck!!

  • KBeee
    KBeee Member Posts: 695
    edited November 2018

    Hoping hte appointment goes well. Keep us posted.

  • Astrid
    Astrid Member Posts: 1,033
    edited November 2018

    I am really pleased for you that your will be going through UVA.

    You need to feel really confident with your team. it feels like the right thing.

    Hug

    I wish all of you a beautiful thanksgiving.

    we do not have that holiday here in Australia, but I love the sentiment.

    There is so much for us to be grateful for.


  • Kassy54
    Kassy54 Member Posts: 47
    edited December 2018

    Ladies, hope you are well!

    UVA was extraordinary. Every person I came into contact with there was kind and competent—from the high school girl volunteer who was handing out drinks to the head of the gynecological oncology department! I LOVED her! She was very real and genuine. (Of course, in this small world the doctor who was originally going to do my hysterectomy in the other facility was a student of her’s. When I said I was sure he was brilliant but I wasn’t comfortable, she said “ He’s a nice guy. Brilliant? Heh...” I thought that was amusing! The guy did graduate from UVA and then Duke’s residency!)

    So they will remove ovaries, tubes and cyst—and only remove the uterus if there are signs of malignancy in the cyst. Faster recovery and fewer complications apparently. December 13.

    And now that I am in their system, I can go to their breast clinic and find out what’s caused these weird breast changes and lymphodema that started all of this

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2018

    That is wonderful news Kassy. (Not that you will have surgery!) But that you are in great hands with such an experienced surgeon and in the system of what sounds like a 1st class facility and satellite centres. So happy for you. I am praying for a beautifully clear uterus and benign cyst.

    Love and hugs. Xx

  • Kassy54
    Kassy54 Member Posts: 47
    edited December 2018

    Astrid, you are so kind! Thank you for your thoughts and support