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Full blown panic after CT scan 8/23/23

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  • laughinggull
    laughinggull Member Posts: 516
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    She was gorgeous! I am sure she had a great life with you. That pain will soften with time, I promise. And you will get another dog in due time, once you grieve and then decide on the next dog.

    We will be here thinking of you Claire. We will not be going anywhere!

    Hugs

    LaughingGull

  • maggie15
    maggie15 Member Posts: 1,000
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    Hi Claire, Your beautiful dog looks so much a part of that natural setting. She must have been a wonderful hiking companion.

    What a great idea to give a summary of your PTSD and information on how you want to be communicated with to your doctors. Many of us would have much better medical appointments if we did something similar. It reminds me of the 504 plans I would get for my high school students who did not have IEPs but needed some accommodations to be successful learners. Knowing in advance what would help each student led to a much better semester for everyone involved. I hope your Mayo Clinic appointment goes well.

  • claireinaz
    claireinaz Member Posts: 681
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    she was, Kaynotrealname. She had just gone swimming in the Colorado River in No. AZ where I am. She loved it. I would love to see a "messy dog" photo, too.

    Okay, so I got the US results and THEY ARE GOOD!!! No recurrence at least in my ovaries or a new cancer.

    Nothing wrong with my ovaries or uterus. Makes me wonder, then, about the bladder reports (thickening walls, ureter blockage, etc.) But I'll let Mayo Clinic handle this, because that's where I'm going for my urology care and I'm so relieved that they are such a reputable hospital. A lot of stress is removed because of that.

    It could be bladder cancer still, but I know I have space age care at Mayo no matter what.

    Love to you all

    Claire in AZ

  • lillyishere
    lillyishere Member Posts: 773
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    A sigh of relief for such wonderful news Claire. Thank you for sharing this news with us.

  • kaynotrealname
    kaynotrealname Member Posts: 411
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    Oh my gosh, Claire! It's a like a collective breath release for all of us and I can't imagine how you feel. So, so glad. God I hate scans. Hope Mayo decides the bladder is a-okay, too, and then you'll be good to go. Beat up and traumatized yet again, but another day is another day.

    My messy boy escaped his fence today so he is truly quite horribly so, messy at the moment. At some point I'll post his crazy ass. He's a pretty thing which helps me when I look at him and wonder how the hell I got the most hyper dog in the world.

  • claireinaz
    claireinaz Member Posts: 681
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    Thanks you all. You walked me through the first part and I survived a bit because of it. Xxoo I will post what Mayo says-rhe second hurdle-as soon as I can.

  • laughinggull
    laughinggull Member Posts: 516
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    Sooo happy for you Claire! This news just made my day. Thanks for the update. I had a good feeling about this despite the ominous signs. So glad you got these results before the weekend, too!

  • katg
    katg Member Posts: 217
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    Wonderful news. One test a time. Treat the PTSD with whatever self-care gives you peace. Blessing to you to be good to you.

  • elainetherese
    elainetherese Member Posts: 1,628
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    Whoo hoo, Claire! So happy for the good results.

  • claireinaz
    claireinaz Member Posts: 681
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    Hi all.

    Had my visit at Mayo/Scottsdale on Friday. I met with the NP, who told me they specifically matched me with her because she was female. That made me feel cared for.

    I have to have a cystoscopy (tiny camera through urethra to look inside bladder) but she said they numb me and then insert so I won't feel anything. The local urologist had told me "it's not so uncomfortable for women, so we don't numb" (so much going on in that statement I can't even deal with right now). So Mayo is looking out for me already, and it was just my first visit. If they find anything annoying they will schedule me for a biopsy under anesthesia.

    I also have to have an MRI to look at the bladder and a "flow" check of some kind to check the strength of my stream.

    All of this will be in Nov.

    They didn't think I needed another cytology to check for abnormal cells and trace amounts of blood (which calmed me a bit too). I just have to send them the results of what I already had done.

    My NP asked me a bunch of questions. I mean like 50 or 60. Several were related to vaginal birth (yes), episiotomy (yes), forceps (yes), and how long I pushed in labor (2+ hours, broke blood vessels in my face). So they are evaluating pelvic floor weakness and prolapse (my gyno has reported some prolapse already to me) and how it affects bladder over time.

    I asked her about exemestane which I'm taking. She said it will definitely have a negative effect on bladder strength and incontinence.

    She also said that the bladder issues as I've been having can affect ureter, and so can bladder wall thickening over time. She never said the word "cancer" during that entire meeting (though I did make sure the tech gave my NP my written explanation about severe PTSD and how to speak to me).

    I asked if she could rx Gemtesa (I had samples, it worked, then BCBS wouldn't fill until I took two other less expensive drugs first, which I did). Both drugs caused constipation, not good for those of us with IBS, and dizziness, not good for someone with Meniere's disease. Gemtesa worked for me. My local urologist was all set to rx Gemtesa, since the other two drugs had failed, but he told me, as soon as he saw the CT scan in August, "we better wait", since "we don't know what is going on in there". He wouldn't fill it. I told my Mayo NP that and she literally shook her head at the ridiculousness of not rx'ing me a drug for overactive bladder (I needed relief, and she agreed totally), so they are already working with BCBS to get me the prescription.

    I only asked her about bladder cancer at the end: I had to. She said that the doctor who oversees her is the best bladder cancer guy at Mayo. It might involve surgery, depends on type of bladder ca since there are two types) and that would be it, or bladder washing (which is where they put chemo in the bladder).

    I also learned that breast cancer rarely (it's really, really rare) recurs in bladder. And that bladder cancer rarely metastasizes into the ovaries.

    Even if it is something serious that needs surgery and some kind of chemo, I feel more relieved knowing that Mayo will care for me.

    I also think I'll reach out to my gynocologist about a prophylactic removal of ovaries and maybe uterus. I'm so high risk for ILC recurrence and ILC likes ovaries a lot. Also, I can't take exemestane forever, and it would be nice to know I'm still not making as much estrogen as I would with ovaries.

    I still can't sleep very well because I'm still buzzing from a 6+ week PTSD attack (since the initial scan 8/23), but I hope my body will catch up with my mind soon.

    Claire in AZ

  • lillyishere
    lillyishere Member Posts: 773
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    Claire, it seems that you have a good plan in order. When I was diagnosed with ILC and decided to remove ovaries vs. lupron since I was pre-menopausal, for the first time I heard from the gyn-onc that ILC goes to ovaries. She removed ovaries and tubes. I regret not asking to remove the whole uterus since it is useless at this point and it only needs maintenance throughout my lifetime. Exemestane is to remove estrogen created from the skin and other organs. Even though tamoxifen and exemestane are not the best for ILC.

  • claireinaz
    claireinaz Member Posts: 681
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    Lily, I tried arimidex and had too many side effects. Exemestane was the next line of defense rxd by my MO. So far I’d like to believe it’s working, but eventually I won’t be able to take it. It’s been nearly 13 years already, including 1 year of tamoxifen and 2 of arimidex.

  • maggie15
    maggie15 Member Posts: 1,000
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    Hi Claire, It was good to hear that you had a helpful appointment with the Mayo NP. It sounds like they are taking a much broader view of what might be causing your issues. You should publish (or copyright) a template of your PTSD document since it seems to be working so well.

  • kaynotrealname
    kaynotrealname Member Posts: 411
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    Claire, it reads like your care is fantastic. I'm so glad to read that your anxiety is beginning to subside although I'm well aware it takes your body awhile to catch up with your brain. And that you won't be able to completely catch up until the last set of appointments. But one big hurdle is jumped and may the other one be soon, too.

  • claireinaz
    claireinaz Member Posts: 681
    edited October 2023
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    This is what I hand out to all my medical techs, nurses, and doctors. I hand it to the tech first (since they check weight, height, BP etc.) and ask them to have the doc, nurse, NP or whoever read it BEFORE the exam/appt starts.

    It may be TMI, but because I have been hurt by words from medical professionals so many times in the past, it works for me. Feel free to modify it to suit personal needs. Let's start a quiet revolution.

    "I have severe medical PTSD from losing my late husband to cancer after only 3 months of marriage in 1996, my own Stage II cancer dx and subsequent high risk for recurrence in 2011, and my husband’s current advanced prostate cancer. I share this information with you as part of my health history, just as you would want to know if a patient had a cardiac condition, so you would take care not to provoke a cardiac event or do harm. I am an Honors Professor with degrees in English, Technical Writing and Rhetoric. I know that words aren’t neutral: they can do tremendous harm to a patient. Fear-based language that generates anxiety, despair, or hopelessness can trigger my PTSD that can take weeks to recover from. Be mindful that I do not respond well to information that is delivered in an urgent and anxiety provoking way: I am someone who is already hypervigilant about her health. Please share information with me in a reassuring, calm, hopeful way. Thank you."

  • laughinggull
    laughinggull Member Posts: 516
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    Dear Claire,

    Thank you for sharing. Very concise and clear. Well done!

    Yes let's start a revolution 😎

    LaughingGull

  • salamandra
    salamandra Member Posts: 745
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    I'm so relieved to read your news!

  • claireinaz
    claireinaz Member Posts: 681
    edited November 2023
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    Okay, so I was elated about the pelvic US. However, I've just crashed and burned. Had an MRI of my abdomen on Sunday plus a cystoscopy of my bladder yesterday. Mayo urologist who did the scope said he wanted to biopsy one small spot but thought everything looked pretty good otherwise.

    Then I read the MRI report this morning. Terrifying in short. It said, in summary, that there was suspicion for spread (metastatis, it said, and indicated perhaps BC, but no way of knowing right now, mentioned peritoneum suspicion, some lesion on my iliac crest, some other lesion somewhere else, and recommended a CT/PET. My urologist has now changed my biopsy to going up my ureter to look at it too.

    I reached out to my NP in Urology and asked her for some reassurance and she replied as though it was a billing notice. Seriously. Just said she will reach out to medical oncology if I'm sure I want tx at Mayo. I do, of course—our health care system is scary broke in No. AZ, and I would be afraid I'd die faster if I pursued tx there.

    I don't know how accurate MRIs are in finding recurrences and metastasis. I'm afraid to look right now.

    The colonography CT in Sept did not show any of this.

    Breast cancer metastisis isn't unsual to go to bladder and stomach with ILC. So is this it, I wonder. And metastasis to bladder is pretty much fatal according to some recent science links.

    I have the biopsy scheduled for Dec. 12, and the PET/CT is still in the works; logistically since I don't have a confirmed dx the Breast Center can't take me yet according to the nurse navigator who just called me-at least she was nicer than the NP at Urology, and so the scan might have to be ordered by Urology. They will work it out by tomorrow. Meanwhile on Dec. 13 and 14 we stage my husband's prostate cancer radiation treatments, also at Mayo. I hope I can have the scan done during that time.

    Whose cancer takes precedence? Who wins or loses the cancer fight—me, or my husband's advanced cancer? Who cares for who, who dies first of cancer?

    These are all things I've thought of today.

  • maggie15
    maggie15 Member Posts: 1,000
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    Claire, I’m so sorry that the MRI and cystoscopy resulted in such concerning findings. The wait for your biopsy and your husband’s treatment is so difficult. It is impossible to plan without knowing what you are dealing with.

    Mayo is one of the best medical institutions in the world. Hopefully things will turn out to be less bleak than they seem now. Hugs for you.

  • katg
    katg Member Posts: 217
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    I joined the Mayo clinic boards as there is so much info and experience shared. I feel for you with this diagnosis. Dang. I say clairanaz needs a basket of hope and a message from the next doctor that they have a plan and there is hope. No matter what, that the message be delivered with a kind voice full of knowledge, experience and faith. A dozen hugs to you.💓

  • claireinaz
    claireinaz Member Posts: 681
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    Thank you, katg. I figure if Mayo can't give me a few more years maybe no one could.

    I am on the Mayo boards, but for information regarding my husband's prostate cancer. Not ready to join the Mayo breast cancer boards yet, but I just feel it's coming.

  • claireinaz
    claireinaz Member Posts: 681
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    So I had the PET scan yesterday. I meet with the oncologist at the Breast Cancer Center, Mayo, this Friday who will go over my CA 27-29 test and the PET. She is the head of the department and specializes in breast cancer, especially those that are on the move and has experience in gyno cancers too. I feel she's very qualified and I hope I like her because I'll probably be seeing her a lot.

    I should know more one way or the other but I think that a biopsy is the definitive diagnosis, so I expect that will be next.

    PTSD is raging now. Hypervigilance and catastrophic thinking, could not sleep last night post PET scan. I kept thinking how many places would light up.

    Claire in AZ

  • elainetherese
    elainetherese Member Posts: 1,628
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    I hate not being able to sleep so I empathize with you, Claire. I'm glad to hear that you have a good doctor lined up who can answer any question you have. Hoping you get some sleep soon. ((Hugs))

  • claireinaz
    claireinaz Member Posts: 681
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    I'm over on the Stg. IV boards now, ladies. I appreciate your encouragement a lot.