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

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Comments

  • Springflowers
    Springflowers Member Posts: 66
    edited February 2019

    Awesome news and no reason to feel silly! All the best.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2019

    wonderful news Kassy.

    Keep on trucking girl.Happy


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

    kassy-happy for your good news. There isn't anything wrong with being an advocate for yourself.

  • KBeee
    KBeee Member Posts: 695
    edited February 2019

    Great news!

  • Springflowers
    Springflowers Member Posts: 66
    edited February 2019

    I had ultra sound on the lump that has been being monitored ( which actually wasnt) and the radiologist says it looks like nothing concerning, i am so relieved and happy. Now to get biopsy over with :). I know the silly feeling, i felt that way pushing for the ultrasound but my new family doc is great and on top of things. I am happy i got it now, cant believe how stressed i was about it.

  • KBeee
    KBeee Member Posts: 695
    edited February 2019

    Great news Nan!

  • Kassy54
    Kassy54 Member Posts: 47
    edited March 2019

    Hi, Ladies. 

    Don't know if you will see this but just in case I wanted to tell you about the weird diagnosis I just got. It's Human Monocytic Ehrlichiosis. It's a rare tick-transmitted illness from a bacteria that moves into a person's white cells and lives in the vacuoles. If it is not diagnosed right away (which mine obviously wasn't) it damages the lymph nodes and can cause permanent changes to the immune system. There are only about a 1000 cases a year in the United States. 

    So, it wasn't cancer. But it sure involved my lymph nodes as I kept insisting! I am on a very specific antibiotic to kill the infection, but I am heading to the Mayo Clinic to see if I have any long-term damage and what can be done.

    I want to thank you all for your support. You may have saved my life; I would have given up. Untreated, it can progress to neurological damage and organ failure.

    Please take care!

    Thank you all.

    --Kassie 

  • KBeee
    KBeee Member Posts: 695
    edited March 2019

    I am glad you got answers. Hoping they caught it before permanent damage could occur. Kudos to you for pushing for answers. You knew your body, and knew something was not right.

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

    kassy- fantastic news you were finally correctly diagnosed. Good job in being relentless in your pursuit of a correct diagnosis. You know your body best. Hopefully treatment will begin very soon and you will be on your way to recovery.

  • Astrid
    Astrid Member Posts: 1,033
    edited March 2019

    wow!

    Dr Gregory house would be impressed with this.

    You weren't nuts. You have good instincts.

    Yes, let's hope there is no permanent damage.

    Smile

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

    Astrid- I'm in shock. I'm actually familiar with Dr Gregory House from the TV series. We all have to stay proactive and persistent in our care.

  • Astrid
    Astrid Member Posts: 1,033
    edited March 2019

    absolutely.

    Smile

  • Kassy54
    Kassy54 Member Posts: 47
    edited July 2019

    Update

    I do hope the women who were so kind and supportive of my endless search for answers are all well. I think of you often.

    After my local hospital misread my abdominal ultrasound twice, I ended up at Mayo Clinic in Florida. After three trips down here, they confirmed that I likely (they say 90%) have kidney cancer (the radiologist says it looks like Renal Cell Carcinoma, and less likely to be metastasis of breast cancer, but the can’t rule it out yet.) if it is kidney cancer, it is probably stage 1, but won’t know until after surgery next week. If it is a metastasis, well will deal with that later.

    The Mayo Clinic has been amazing—I wish everyone could have this kind of care. And the staff at the breast center is consistently kind, compassionate and their approach is extremely thorough! I would encourage anyone who can’t get answers to go if they can.

    I may have been mistaken about the cause, but my body has been telling me that something is wrong. And you ladies were right to tell me to listen.

    If you get a chance to let me know how you are, I would love to hear.

    —Kassie




  • KBeee
    KBeee Member Posts: 695
    edited August 2019

    I am glad you are finally getting good care. Keep us posted on what they find. Sorry you're dealing with this.

  • Astrid
    Astrid Member Posts: 1,033
    edited August 2019

    me too.

    kassie, lovely to hear from you.

    really sorry to hear this news.

    doing ok thanks for asking.

    Heartkeep us in the loop.

  • MoonRabbit
    MoonRabbit Member Posts: 2
    edited August 2019

    I just read your whole thread. I haven’t been on this board since you first posted.

    First, I’m so sorry you have had to deal with so many medical problems. Second, I am so angry at the lack of proper care your doctors have given you. And all the waiting in between specialists and the stress that causes. Third, you are a trooper! I hope for the best outcome for you.

    I feel for you not getting answers and being made to feel like you are difficult patient. I have had worsening hip pain for over 2 years and am being shuttled from specialist to specialist, test to test. After switching GPs, I had the physical from hell because I wanted to address my hip pain issue, and was told I needed to make an appointment outside the physical. What?!?! You can’t address my medical problems during a physical?!? The whole thing was rushed, I was told to be quiet so he could type his notes. I was finally given my MRI results at the physical, which were literally thrown at me as he said he didn’t know why I had hip pain and should go back to the orthopedic surgeon (for the third time?). He ordered more imaging because I was too fat for him to examine my uterus (yes he said that) which also would address the hips. I complained to the staff because my notes didn’t even include the hip pain, and was called back by the doctor and chewed out, I left crying. Haven’t gone back even tho I need cholesterol drugs.

    Now hip pain is worse, and I’m back on this board.

    Another funny but concerning happening: I read the first response on this thread about the oncologist hugging his patient and going to a cancer center for comprehensive treatment, and thought that’s just like me!! Then I saw my username and realized it WAS me. My memory is going. No really.

    Glad to hear about Mayo and how they have helped you, but so sorry for the diagnosis and how long it took to get it


  • OnTarget
    OnTarget Member Posts: 124
    edited August 2019

    This is a great post and I think everyone should see how important it is to be a consistent self-advocate! Thanks for sharing!

  • Kassy54
    Kassy54 Member Posts: 47
    edited August 2019

    moon rabbit, I am really sorry that this whole process added “insult to injury” to your struggle. Take care—advocate for your self like you would for your best friend! You are worth it!!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited August 2019

    Kassie, how are you doing? Have you had your surgery yet? I hope you’re getting some answers and that they are encouraging rather than otherwise

  • smc123
    smc123 Member Posts: 30
    edited December 2019

    I am bumping this thread because I found this caption really intriguing. I too have struggled with various symptoms and no new diagnosis. I go to my regularly scheduled check ups and I watch the women in the waiting room getting ready to be called into their chemo treatments and I pray...please God do not let me go through that again. I do not want to be sick and I’m relieved when my MO tells me your blood work is perfect and all looks well...see you in 6 months. But, what I can’t find relief from is the odd shoulder blade pain or the burning feeling of my lungs after a walk. I’ve had chest X-rays, bone scan and MRIs..no explanations for the pain. I have read over and over again to be your own advocate and I am curious as to reading more stories of not giving up. Does anyone else have a story of persistence that paid off

  • Kassy54
    Kassy54 Member Posts: 47
    edited December 2019

    Hi, I was VERY out of commission in August after my partial nephrectomy and didn’t realize any one had posted until I just saw this. Thanks for checking on me!!!

    The surgery was perfect, but I haven’t bounced back like I thought I would, and am back to wondering if there is something else going on that would cause me to be so tired still. There is a possibility that my thyroid nodule is thyroid cancer, and that could do it, and can be relatively easily treated. I will go back to Mayo in February for follow up, which is reassuring.

    But what I wanted to let you ladies know is... while I was down there I met with a doctor in their breast clinic, and she was awesome. She stressed their “survivorship program.” In 2010, when I had my bc, once you were finished with treatment, you were just done. They had saved your life and then you were on your own. But now there is a start of a different approach. I just want to encourage everyone who is worried about a recurrence to find a survivorship program where they will understand your anxiety and not fault you for it, and take your symptoms seriously and not blow you off. Had I been in one, they might have found my renal cell carcinoma when it was small enough to simply be ablated, and not have had to go through major surgery. And the stats do indicate that if we are vulnerable to one type of cancer, we are more vulnerable to some others (ie kidney cancer!). So even if it’s not a recurrence, they can help you check out any disturbing symptoms.

    To SMC, I totally get how scary and frustrating this is. Find a good survivorship program! Find people who will listen. And, when hopefully, they find a benign source of your symptom you will be comfortable that you have done everything you need to do. And won’t have had to experience any more dismissive, belittling experiences in the process.

    I would love to hear how everyone who has helped me along the way is doing. I will let you know about the thyroid!