They Said It Was Allergies-It Was CANCER! - Laurie | Stage 4 Follicular Lymphoma | The Patient Story

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  • Опубликовано: 3 янв 2025

Комментарии • 87

  • @4BarbaraJ
    @4BarbaraJ 5 дней назад +53

    Thank you for sharing your story. It’s amazing how many women are dismissed by doctors. My daughter was misdiagnosed and finally told to seek a mental evaluation with her symptoms. She had a golf ball sized tumor on her brain stem. All her symptoms were caused by that.
    I wonder how many of these patients go back to confront the doctors that dismissed them?

    • @RustyShakleford1
      @RustyShakleford1 5 дней назад

      Sue them

    • @ThePatientStory
      @ThePatientStory  3 дня назад +1

      WOW- glad she kept pushing for answers!

    • @barbshields9958
      @barbshields9958 3 дня назад +1

      @@4BarbaraJ I hope she is doing ok now. That’s terrible how she was dismissed. 🙏❤️

  • @janereinhardt4715
    @janereinhardt4715 5 дней назад +37

    When i had bladder cancer in 2009, my bloodwork was perfect too. Bloodwork does not tell all.

    • @cipriandobrea7369
      @cipriandobrea7369 5 дней назад +1

      How was it detected?

    • @emmachristiestyles3219
      @emmachristiestyles3219 5 дней назад +3

      I'm waiting for biopsies from my bladder at the moment... I'm convinced my issue is in my right kidney but they won't listen... because my bloods are OK. I know something is wrong but they keep fobbing me off. Three years of uti treatment with no rest in between... now they say anti biotics aren't working. My legs and feet swell the pain in my groin and right flank is 10/10 but still they don't seem to be listening 😢

    • @jessicawilson2772
      @jessicawilson2772 5 дней назад +4

      You're right... blood work doesn't detect it for so many cases, and/or for so many cancers.

    • @PollyWood67
      @PollyWood67 4 дня назад

      @@janereinhardt4715 Blood work can detect blood cancers like leukemia but, except for certain specialized tests like CA125, it's not used to detect solid tumors.

    • @ThePatientStory
      @ThePatientStory  3 дня назад +2

      sadly that is true

  • @reinabrowne
    @reinabrowne 5 дней назад +23

    Thank you so much for sharing. You give the rest of us more courage to fight for ourselves.

  • @suzannebrutsche1944
    @suzannebrutsche1944 5 дней назад +9

    Glad to hear you are helping others help themselves through such a scary time. Love your heart and your story.

  • @jimhenderson387
    @jimhenderson387 4 дня назад +6

    Thank you for sharing your story. It's wonderful to get hopeful cancer news. I hope you continue being in remission and living a long, healthy life!

  • @kittyfarkas
    @kittyfarkas 5 дней назад +17

    Very interesting. I have chronic lymphocytic leukemia a cousin to follicular lymphoma. I had chemo in 2018. It just came back Dec 2024. Just started on Brukinsa tabs targeted Therapy. I pray it works. I live near NIH. Thanks for all info. Best wishes.

    • @megb9700
      @megb9700 4 дня назад

      🙏🏿 Best to you!

    • @laurieadami4111
      @laurieadami4111 4 дня назад

      @@kittyfarkas I wish you the best with your new treatment. I know many patients who take Brukinsa and the later variants of it and they are many years out on it and doing well. You are also lucky you are near NIH, what a place!

    • @ThePatientStory
      @ThePatientStory  3 дня назад

      we are wishing you the best in your treatment plan!

    • @CezanneJones-kf2ve
      @CezanneJones-kf2ve 12 часов назад

      All the best to you with your new treatment

  • @Flippy_808
    @Flippy_808 5 дней назад +9

    Laurie is so intelligent and luckily she was her own best advocate! I am so tired of people being dismissed by their doctors.
    I had a friend/coworker who suddenly had pain in her legs and she became so tired; these symptoms lasted for many months. She went to so many doctors, each dismissed her symptoms and one doctor even told her maybe she should see a psychologist. My friend cried as she told me this, it absolutely infuriated me! She ended up in the emergency room and finally found out she had bone cancer.
    She died TWO days later 😢

    • @selecttravelvacations7472
      @selecttravelvacations7472 4 дня назад +3

      I had to literally call an Oncologist myself without a referral. Thankfully I have a PPO plan and can get by with that. Not all can but if I’d have had to pay out of pocket for that visit i was going for a consult. I have a bone marrow biopsy this week that should confirm multiple myeloma. Not sure which subcategory yet until biopsy. I won’t go into it all here but I plan on telling my story one day too and the Drs that dismissed me will be named. There are some serious issues that need to be addressed within our current healthcare system. I’m so sorry you lost a friend to this kind of negligence.

    • @Flippy_808
      @Flippy_808 3 дня назад

      @ I pray you get the care that you need 🙏

    • @ThePatientStory
      @ThePatientStory  3 дня назад +1

      OMG- we are so sorry to hear of her passing :(

    • @Flippy_808
      @Flippy_808 3 дня назад

      @@ThePatientStory 🙏

    • @laurieadami4111
      @laurieadami4111 День назад

      @@selecttravelvacations7472I wish you the best. Both LLS and the Multiple Myeloma Research Foundations are excellent organizations for you to reach out to for support.

  • @SeamsLikeAGoodIdea
    @SeamsLikeAGoodIdea 5 дней назад +15

    This is an amazing story of perseverance. What an amazing person.

  • @breezeh1127
    @breezeh1127 5 дней назад +47

    It is so sadly common how often people are dismissed. Especially if they are female 😢

  • @joystone5793
    @joystone5793 5 дней назад +14

    What a blessing for others for you to have shared your story. I especially found the information about the Leukemia-Lymphoma Society priceless, as now there is a place i can refer others for help. May you continue to be blessed. Thank you.

  • @valerijohnson2839
    @valerijohnson2839 День назад +1

    Thank you for being such an advocate!

  • @PollyWood67
    @PollyWood67 5 дней назад +4

    Thank you for sharing all of this valuable information with other leukemia and lymphoma patients. You're an amazing woman. I'm a 33 year breast cancer survivor because I refused to listen to my primary care doctor who insisted that the rash on my breast was eczema and that my mammogram was normal. I took myself to a major cancer center where a biopsy showed that I had breast cancer.

  • @kiwipics
    @kiwipics 5 дней назад +17

    Being dismissed isn't just a thing that happens to females of a certain age, as men have exactly the same thing and I find it's the same whether or not the health care professionals are in the private or public healthcare sectors. It's not surprising that most cancers are found so late. I'm fed up with having to fight for professional help ...

    • @elydiaalvarez4796
      @elydiaalvarez4796 5 дней назад

      Those are the Drs. That kill Woman...you are lucky to be alive ! I have had Ovarian Colon, and now I have Stage 4 Breast Cancer ! I am starting Chemotherapy tomorrow. prayers for me please 🥺🙏

    • @barbiegirlthrifter6841
      @barbiegirlthrifter6841 4 дня назад +1

      I think it has more to do with arrogant doctors who can’t figure out that just because they don’t know doesn’t mean they offer you a psychological evaluation instead.

    • @selecttravelvacations7472
      @selecttravelvacations7472 4 дня назад

      Here’s a factoid i just saw printed and it was a pharmaceutical journal, sorry I can’t recall which one but it says that the “cancer market” is supposed to double in 10 years across every cancer sector. Other fact sites say cancer isn’t really on the rise, it just look that way. (Para) But the market is preparing for a major doubling of profits.

    • @ThePatientStory
      @ThePatientStory  3 дня назад

      never stop pushing for answers!

  • @Katie-vy5rd
    @Katie-vy5rd 5 дней назад +13

    So amazing you choose to help others on their journeys! I loved hearing your story. Thank you xo

  • @barbshields9958
    @barbshields9958 5 дней назад +7

    Thank goodness you advocated for yourself and did research on the trials. Wishing you good health. Thanks for sharing your story.

  • @TransConBrilliance
    @TransConBrilliance 5 дней назад +2

    Thankfully I had a great primary care doctor at Stanford. He listened to me when we spent months trying to figure out a digestion issue. After 3 months trying different things I had a feeling something was bad and my doctor believed me. That was all I had, a feeling. He ordered a CT scan and found my cancer. That was 13 years ago. Life has been good since. And I'm so grateful to my primary care doctor.

    • @ThePatientStory
      @ThePatientStory  3 дня назад

      having a solid relationship with a primary can make all the difference :)

  • @gingerjoy5836
    @gingerjoy5836 5 дней назад +6

    Thank God you are ok!🙌🏼🩷 You are a wealth of information to help others. Thank you for all you do!🙏🏼💜

  • @joanneajetunmobi6874
    @joanneajetunmobi6874 4 дня назад +2

    I’m so happy for you. You really persevered and it paid off.

  • @Pulse2AM
    @Pulse2AM 3 дня назад +1

    Laurie is the strongest person I know! When I think about being down I just need to remember her story.

  • @cathytauscher6760
    @cathytauscher6760 5 дней назад +5

    Amazing story of resiliency and success! Very brave forging the way for what is now a standard of care treatment for DLBCL.

  • @Dublin1008
    @Dublin1008 2 дня назад +1

    So happy for you! I wish you the very best ❤

  • @stephsserenity7290
    @stephsserenity7290 4 дня назад +5

    Your bloodwork doesn’t always prove a problem. My friend was just diagnosed with a GIST and her bloodwork was fine, my dad has been sick for a while but all normal bloodwork was fine until they specifically tested for Hep C, which he has and clearly has had for a long time by his load. Everyone, always advocate for yourself, you know your body better than ANY doctor.

  • @carolinemonaher2515
    @carolinemonaher2515 2 дня назад +1

    Thank you so much for sharing .. I knew also there was something wrong with me for nearly a year i was back and forth to my doctor only to be constantly told it’s your diet! Get excericse ! Loose weight ! Until one morning I really felt awful went to the doctors and thank god there was a junior doctor on who saw me and listened to me my blood pressure was so high she rang me threw to the hospital as suspected stoke and she told to push to get an ultrasound - and thank god the nurse I was dealing with also listened to me and got me the ultrasound - they found 10cm cyst on my ovaries which led to 3 CT scans where they picked up large lymph nodes - the doctor told me I had ovarian cancer - it took 4 weeks to get in to see my oncologist only to be told I don’t have ovarian cancer - they did mamagram and biopsy of 2 nodes to be told then I have non hogkins follicular lymphoma .... such a roll a coaster meeting hemotolgist next week for staging - you really have to push & fight to be heard or seen ! But once in the system the care is amazing ....... good luck guys 💖

  • @lauriemozo5057
    @lauriemozo5057 4 дня назад +1

    Laurie, I live how you presented this information. I pray for your health healing.

  • @selecttravelvacations7472
    @selecttravelvacations7472 4 дня назад +1

    You are a huge inspiration to me! Thank you for accepting the challenge with such determination and resolution! I just got home from the hospital and yours was the first vid I saw pop up. Very timely! Do you have a blog? Or Vlog?

  • @marciamurphy9068
    @marciamurphy9068 2 дня назад +1

    Thanks for telling your story. I've had chronic severe pain and weakness in both lower limbs and back for about 8-9 years and neurologists won't provide a diagnosis or do any follow-up care. Other departments refuse to see me, including Mayo and other facilities in other towns. I believe this is due to me being female and having a psychiatric diagnosis. I can't get any help. I use forearm crutches and a wheelchair. Mobility is an issue, and I don't have an accessible home.

  • @Karenfree2202
    @Karenfree2202 5 дней назад +4

    Amazing!!!❤🎉

  • @jrpacer6355
    @jrpacer6355 5 дней назад +14

    Welcome to the health care system in the United States

  • @candacekerr4139
    @candacekerr4139 3 дня назад +2

    I’m so disappointed in the medical community. The stories I hear are heartbreaking. We really have to be our own advocates.

  • @cipriandobrea7369
    @cipriandobrea7369 5 дней назад +10

    How does it take 3 years to get a simple CT scan In LA of all places?

    • @laurieadami4111
      @laurieadami4111 5 дней назад +6

      It's absolutely unreal what I experienced, but I know many many others have as well. It's a function of the doctors you see, whether they take you seriously and also what insurance you have or are stuck with. I wrote letters to the doctors who had dismissed me in the hopes that the next time a patient came in expressing fears that they would listen. Many of the doctors I saw initially had massive egos and at times I felt I couldn't even fit in the examining rooms as their egos were so large. These docs didn't seem to want to hear my concerns. Scary. Too many patients perceive doctors are all knowing (I have even had patients tell me their doctor is God...) but I learned the hard way that is not at all the case.

    • @carriegarman3334
      @carriegarman3334 5 дней назад

      SHAME ON LA!!!! What a joke

    • @laurieadami4111
      @laurieadami4111 4 дня назад +2

      @@carriegarman3334 It's everywhere not just LA. There is just a lack of awareness of the obstacles patient's face.

  • @paularodger8779
    @paularodger8779 5 дней назад +7

    Hello I am so glad you were eventually heard.
    I wanted to ask you if you could reply please, and tell me about your sinus issue.
    My nose runs for no reason, for example when I laugh, when I cry, when I eat, when I bend down, I also have a hernia in my lower abdomen that they said was just a hernia, I have felt quite unwell and very very tired.
    I am 52 years old next week, I can't drink alcohol, I am slim and eat healthy.
    I can't understand why I feel so unwell and exhausted.
    Can you tell me more about your sinus issues please

    • @cavelleardiel
      @cavelleardiel 5 дней назад +5

      That can be exposure to fungus, mold which can cause cancer. If you can afford a PET scan that would be beneficial. Bloodwork does not always catch things. I am curious if you can pay for tumour marker blood tests.

    • @laurieadami4111
      @laurieadami4111 4 дня назад

      @@paularodger8779 I had never had sinus infections before and suddenly they were continuous. Coughing up and blowing funny colored mucus; headaches in my face and forehead; just felt lousy. I was given repeated courses of antibiotics and while they would go away temporarily, they just kept coming back. I was tested for allergies and nothing was found. I had recently moved my company to a new location in Santa Monica. One doctor suggested the building might be causing my condition. Of course, once I was diagnosed and received a PET CT of my whole body they discovered I had enlarged lymph nodes in my head and neck which were causing my sinuses to be blocked which led to infection as my sinus cavities couldn't drain. The dry eye was caused by a lymphoma tumor in my lacrimal gland (aka tear duct). It was all the lymphoma the entire time. It's weird your story sounds like mine. Where do you live and do you have a PPO insurance plan? Do you have friends and family you could ask to get a physician referral? I would go to an internist and relate your issues. Hope you can get to someone who listens to you.

  • @berglettemom6045
    @berglettemom6045 5 дней назад +11

    I’m furious on your behalf how little you were listened to or believed. It sounds like you had to do all the research and work yourself. I can’t imagine how lonely you must have felt.

  • @IamParalegal
    @IamParalegal 5 дней назад +4

    Maybe naming these doctors and agencies might make them listen and be more attentive.

    • @RustyShakleford1
      @RustyShakleford1 5 дней назад +1

      Yep we wanna know who to stay away from and who wants to help

    • @laurieadami4111
      @laurieadami4111 4 дня назад

      @@IamParalegal I wrote them each letters but naming these guys publicly is not something I will do. I did write reviews on their web ratings pages so hopefully others read those and avoid.

    • @sunidais1751
      @sunidais1751 2 дня назад

      Some of these types of stories are driven by insurance companies as well. Doctors are dictated to as to what they can do within insurance company parameters. I so miss my former GP (who retired) because she would go out of her way to find work arounds to be able to better treat her patients rather than let insurance companies dictate what tests she could order for her patients. Of course you can work outside of insurance if you can afford it, but not many people can. Also doesn't help so many medical facilities are now run as corporations instead of health care facilities. Money is now the main goal instead of healing.

  • @ivanjones8144
    @ivanjones8144 5 часов назад

    I wouldn't put past insurance companies to give incentives to dismiss some Patients concerns

  • @jessicawilson2772
    @jessicawilson2772 5 дней назад +2

    Please, please, please disclose who the doctor was that believed you enough to take the additional steps to diagnose you (to those in your area). I know that doctor will save more lives if given the opportunities.

    • @RustyShakleford1
      @RustyShakleford1 5 дней назад +1

      I agree we need to know good doctors

    • @laurieadami4111
      @laurieadami4111 4 дня назад

      @@jessicawilson2772 his name was Dr. Soram Khalsa. He practiced in Beverly Hills and was an MD Internist. He also was trained in eastern modalities. He was very smart, very kind and spent over an hour with me at the first visit listening to me. All the doctors I had seen to date were treating each issue as a separate problem. The dry eye was hormones, the sinus infections were due to allergies, the lump in my abdomen was a hernia. He was the first doctor to point out that the body is not partitioned into sections but works together. I recently read his obituary in the LA Times. A great loss.

  • @zeldadesantiago7250
    @zeldadesantiago7250 5 дней назад +3

    Wow

  • @tabnmota
    @tabnmota 4 дня назад +1

    It's literally so easy to request a scan! I will never understand why Drs fight you on it 😢

    • @laurieadami4111
      @laurieadami4111 4 дня назад

      @@tabnmota it's the money it costs, in the US scans are expensive.

  • @awesome_comment
    @awesome_comment 2 дня назад +2

    Dismissing because you were female and blonde is little unrealistic but I'm glad you are better and surviving.

  • @Maya-Alexdog
    @Maya-Alexdog 4 дня назад +2

    Story after story of quacks dismissing patients. I hate that "blood work is fine"

  • @vcat7347
    @vcat7347 4 дня назад

    Pituitary tumour?