I was Given the Wrong Cancer Diagnosis: I KNEW Something was Wrong | Natalia's MPN Story
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- Опубликовано: 9 апр 2023
- Natalia A. knew something was wrong when she started having trouble breathing. She was told to then see a hematologist and booked an appointment with a specific doctor, who specialized in blood cancers. She was then diagnosed with polycythemia vera and started getting blood drawn every two weeks. But after becoming extremely weak and being rushed to the ER, a doctor told her she needed a blood transfusion. She then learned her doctor miscalculated her numbers and was given the wrong diagnosis.
In this conversation, she shares how she processed the devastation of the wrong diagnosis, the impact it had on her life and the message she now has for other patients.
The interview has only been edited for clarity.
Thank you to AbbVie for its support of our patient education program!
Full story & transcript → www.thepatientstory.com/patie...
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Our medical system is really questionable. It is scary. It is important to have smart friends.
I found a fast growing breast lump , my own doctor sent me to the breast centre at our local hospital ,had a mammogram, was examined by a specialist breast nurse who go me in to see the consultant immediately, he examined me & said he thought it was fibrous tissue , but sent me for an immediate ultrasound, they too thought it was fibroses & sent me back to the specialist nurse ( so I’d had all the examinations done in that one day , amazing ) she told me that I was over reacting & it was in fact fibrosis & not cancer, she then said how often are you feeling the ‘lump’ I said laughing about every hour , breasts don’t like been felt so much & to stop feeling it , i said BUT ITS RAPIDLY GROWING ! I then lost all faith in the system at that point , I went straight back to the ultrasound room luckily there was a female breast consultant in their & I told her that I was a senior sister on intensive care & even though I’d no idea about breast tissue fibrosis or breast cancer , but one thing I did know that this lump was rapidly growing I new how easy it was to do a liver biopsy so please can you take a punch biopsy now , she was nice & said they had time to do it before the next patient was due in , I’ve never got undressed so quickly & up on the table in my life , even though I was in a wheelchair ( that’s another story) the biopsy was uncomfortable but quick , the ‘specialist nurse then shot in & said when I walked out on her she had gone to see the male consultant to see if I could be asked to come back to have a biopsy done , don’t know if this was true or not , but I politely but firmly told her I had had it done ! TWO weeks later I got an appointment for a PET SCAN , Then i rapidly got to see the consultant, IT WAS CANCER & WAS LEVEL TWO BECAUSE IT HAD ALREADY SPREAD TO MY AXILLA LYMPH NODES. A week later I had a mastectomy & axilla clearance , luckily I haven’t had lymphoedema in my arm , I had a course of radiotherapy & now happily in my 3rd yr of no recurrence. IF YOUR NOT HAPPY WITH WHAT YOU ARE BEING TOLD , NICELY PUT YOUR FOOT DOWN !
Didn't you get chemo?????? You all never mention chemo so how you get rid of your cancer, you get a biopsy and weeeee, it's all gone? I don't think so!
@@angelfirelite if you had read to the end of my experience with breast cancer was when I wrote about the results from the pet scan , I then had a total mastectomy , they had removed all breast tissue & had got good boarders all around the tissue so I had several rounds of radiotherapy so NO CHEMOTHERAPY WAS WARRANTED !
@@angelfirelite how dare you be so disrespectful, NOT EVERYONE REQUIRES CHEMOTHERAPY! I HAD THREE MASSIVE OPERATIONS , MASTECTOMY , AXILLA CLEARANCE & FINALY RECONSTRUCTION , 7 ROUNDS OF RADIOTHERAPY TO MOP UP ANY OTHER CANCER CELLS , UNFORTUNATELY THAT AFFECTED THE BREAST IMPLANT , SO ANOTHER OPERATION TO REMOVE IT & SILICONE IMPLANT YET AGAIN ! …….. OK NOW HAVE YOU GOT THE PICTURE ?
Another example of how desperately important it is to advocate for oneself. And thank God you did so!
I’d definitely be suing them. There’s no way you should let them get away with this 😡😡😡
suing them would have made her rich - you can not let them go like this
It’s really scary to not be able to trust healthcare.
Call a malpractice lawyer to sue the doctor. Glad you ok now.
What an experience. I am so sorry you went through this terrifying time. Not to mention trying to work and have a family life. I sincerely hope you are doing better.
Thank you for sharing your story. I’m so sorry for the difficult journey to a correct diagnosis. I was recently diagnosed with post-essential thrombocythemia myelofibrosis. I had to leave my local hem/onc and go to a well-recognized cancer center to find out why I was getting worse. When you’re so ill, it’s difficult to make big medical decisions. But you have to in order to find out what’s wrong and get the best possible care. Best wishes for you in your treatment.
When a doctor says "autoimmune" it's code for "I don't know what the heck is causing your problems"
Such a very sad story. I’m so sorry you had to go through such an ordeal.
I’m stunned!!! First off… when my doctor told me I had PV she said the exact same thing to me that if I had to have cancer this was a good one to get. Maybe it’s the same doctor - what a stupid thing to say!!!
Regarding what they did to you… this is pure negligence. I had to be tested before each Phlebotomy. Thankfully my Doctor’s office has a lab on premises. Here you are fighting to keep working with this dreaded disease that makes you feel terrible. I commend you so much for trying so hard. With the numbers you had-Hematocrit of 59!!! The highest mine went to was 50 and I felt like I was going to explode. You are an “Overcomer”! You are an inspiration to me! Thank you for sharing your story. All the best to you and your family 😊
Wow! How irresponsible of the first doctor and not even call you back? That's awful! You have a lawsuit, I hope you know that. She put you at risk by doing Phlebotomy and not be knowledgeable about the symptoms of your condition. I hope things are under control now and that you are ok.
No words. I am shocked. Hugs
What an massively stressful situation. I hope the new haematology team will get you the best treatment & maintenance plan possible. Continue to advocate for yourself ❤
Doctors make educated diagnoses, but wouldn’t it be wonderful if they didn’t ignore test results?
In Canada it is impossible to sue a doctor. It is why doctors do not care if they make surgical errors or misdiagnosis. My MS Neurologist refused to refer me to a Spinal Surgeon. I told her my symptoms gait and spinal collapse is not MS gait. If I knew how incompetent doctors were I would have gotten every brain and spinal MRI as well as any other tests and scans. I requested copies of every scan since 2013 and was shocked to read I have severe spinal stenosis, myelomalcia, scoliosis, etc etc. I cannot walk now from not getting spine surgery to stop spinal compression.
Wow i live in Ontario, I didnt know u cant sue for malpractice
So informative, thank you so much ❤I hope you are doing better and thriving.
Its awesome your friend Melanie is with you!!!!! I love you sooooo much Jenny. You and your Family are an inspiration to me !!!!!!!!
So sorry for u
Living with an incurable disease is so hard, but you just have to live life day by day as it goes by (Cancer sucks)...
it is never the end of the world, i had HIV but when a friend of mine recommended a healer and caster for me, and she helped me out and i am NEGATIVE now, i was tested twice and i am free now
@@DavidVelasquez9 wow, how can i get in touch with her? this healer, does she cure other sickness
@@peterwilliams6361 yes, her name is SHELLY RENEE WHITE, you can look her up online.
@@DavidVelasquez9 wow, found her website, thank you very much for this.
My grandfather lived with polycythemia Vera happily for 30 years. I could tell they did something wrong when you described how you felt after each treatment. He felt great after his treatments. He felt better after, than before. So there is no way they had that right. He died of colon cancer at age 83, but until colon cancer took over her life he lived well even with polycythemia Vera. I'm so so sorry they had this so wrong 😢
Unfortunatelly she didn't have Polycitemia vera, she had Myelofibrosis.With PV you can live a long life, but misdiagnosing PV instead of MF can lead to a treatment (phlebotomy) that put your life at risk, as she explained in the video.
@@dan9723 That's why I shared what I did. My comment said I knew they had it wrong when she said she felt worse from treatment. It was obvious she didn't have polycythemia Vera. I know what she actually had...I did watch the video. I was sharing because it was obvious to someone who actually knows what PCV is actually like, that they got it wrong.
What did she say she didn't want to try @18:40? It really wasn't clear.
I'm not surprised at all all my medical records were lost I thought my cancer had gone but my records were list I went for a appontment they didn't even know what I was thrir for that was years ago this time I got sent for to get a breathing test even though I'm a larangectomy and breath through my neck they didn't even have me down as having my voice box removed this time I'm not getting treatment could not go through it again they do the best they can but mistakes are made they are not God
suing them would have made you rich
Its not a new story…
What kind of cancer did you have? I'm sorry I missed it if you said it in the video
Primary Myelofibrosis instead of Polycythemia Vera. These are part of the MPN type of blood cancers and rare.
I had TNBC took chemo and it shrunk thank God, what I don't understand is she had no chemo for the blood diagnosis, at least she didn't lose her hair. With chemo, you are very sick from the infusions, very weak and tired so I think she did pretty good as she could go on vacation and move around without being stuck at home and always in bed!
She seems to have had Plebothomies and in the video mentioned that she did not go ahead with the Hydrea (maybe she has by now?).
PMF is only curable by allogeneic haematopoietic stem cell transplantation at this stage - which gets trickier the older a person gets.
IMO the cardiologist should have been the one to be pro-active.