Getting Diagnosed with a Rare Cancer: Myelofibrosis | Mary’s Story | The Patient Story
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- Опубликовано: 9 июл 2024
- Mary L. is a retired career nurse who now works as a CEO for a non-profit. The last few years of her life have changed course, and it all began with symptoms of something that remained undiagnosed for months and months. Her first red flags were fatigue and dizziness, both of which were extreme.
In this segment, Mary shares more about what finally got her to her diagnosis of myelofibrosis, including misdiagnoses of other myeloproliferative neoplasms (MPNs) like essential thrombocythemia and polycythemia vera. She also talks about having to be her best advocate, switching doctors when she felt it was important.
Thank you for sharing your story, Mary!
In this Series: Our 3-part series with Mary covers everything from getting diagnosed with a rare cancer (this video), the ups and downs of going through myelofibrosis treatment, including Pegasys and hydroxyurea, and the impact of living with a rare cancer.
Videos:
Getting diagnosed with a rare cancer (this video)
Myelofibrosis Treatment & Side Effects (Pegasys, Hydroxyurea) : • How I Got Through Canc...
Living with a rare cancer (myelofibrosis): • Living with a Rare Can...
Full story & transcript → Updated Soon at www.ThePatientStory.com
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The interview has only been edited for clarity.
Contents of this video:
00:00 - Intro
00:45 - TITLE: Mary's Introduction
02:32 - TITLE: The 1st symptoms
05:05 - TITLE: Feeling Vertigo
07:12 - TITLE: Waiting for results
09:04 - TITLE: Dealing with the wait to start treatment
14:51 - TITLE: Seeking a second opinion
16:50 - TITLE: Guidance on the path to diagnosis and treatment
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#thepatientstory #myelofibrosis #rarecancers #patientstories #cancerstories #cancerpatient #cancersurvivor #MPN #myeloproliferativeneoplasms #MF #ET #PV #bloodcancer
I almost died b/c a doctor wasn’t listening to me. Sometimes you have to demand they test you for x, y, & z. It’s important to be your own doctor & not take no for an answer if you know somethings wrong. Our bodies tell us when somethings off & we have to be advocates for our own health.
I've been treated for colon cancer in 2009 and cervical cancer in 2915 here in the UK. Both times the possibility of malignancy was discussed at the testing stage and I was told quickly both times that I had cancer - and the treatment options.
The NHS gets a lot of flack bury here and around the world, but my own experience has been excellent- I do find our service amazing for both cancer and emergency services.
My daughter on the other hand- optic neuritis, MS, interstitial cystitis ( which diagnosis we are currently questioning but meeting blank resistance )has been the polar opposite.
It's so frustrating and I question whether the right people are actually entering the profession.
Drs dont listen when you re them fatigue. At BEST, theyll run a test or 2. We must advocate for ourselves!
Wow! What a horrible experience. I had ET, which was discovered by labs done in a yearly physical. I was sent to a hematologist who confirmed the diagnosis. He said it was treatable, but not curable, with a normal lifespan. I did well on the medication (hydroxyurea) for about 7 years, but he checked my blood every 6 months, he noticed some abnormalities and scheduled me for a bone marrow biopsy. That showed that my ET had morphed into myelofibrosis, which apparently only happens in about 5 percent of ET cases. I later had a successful stem cell transplant and am now doing well except for fatigue due to low hemoglobin, and I have lots of blood transfusions. Turns out the fibrosis scarred my marrow, so until that heals, it will have trouble making healthy blood cells. It’s been quite a journey, but I find it ironic that getting myelofibrosis, my “incurable” ET is now gone!
My mothers doctors were afraid to tell here anything and happy to gloss over things. Sigh. Need capacity and strength - both are required.
I truly appreciate you sharing this experience! Advocating for ourselves is key and I am relieved that your physician didn't continue dismissing your symptoms.
Thanks for sharing your story with us.
Being a PV patient I totally understand.
Do you have splenomegaly as symptom? Hope you feel better. Always pray for a cure.
I really really appreciate you sharing this story.
Rachael, so glad it resonated with you ❤️🙏. -Stephanie
Sweet Mary
A very gracious Lady
Thanks for sharing
Thank you, Elizabeth! Happy new year! -Stephanie
My first oncologist did the same thing. I have Polycythemia Vera. I switched to Dr Ruben Mesa at UT San Antonio. Prayers for you.
Kathleen, thank you for kind note to Mary. And we are big fans of Dr. Mesa- so glad you’re in his care! Would you be interested in sharing your story? If so, please email me Stephanie@thepatientstory.com. Thank you so much 🙏
Who does that to a person , make them wait for answers , the Anxiety is tremendous, where do you turn? I myself have a lump growing on my upper left arm I had an Ultrasound of the lump and here it is January 3rd and I am grasping for answers and getting no where , I make phone calls, leave messages and still nothing.
I am so sorry to hear what you're going through - the waiting is one of the toughest times, if not the toughest. Thinking of you. -Stephanie
Where is video 2?
What a patronizing (if well-meaning) oncologist!
It sounds like she was well-meaning, but it would be great to have doctors who listen when patients speak up. Thanks for your support of Mary!
Wow, what a horrible doctor and staff. Even the hem/onc fussing about on the C word. I'm glad she fired them. Totally inappropriate. These days you do have to be your own advocate or get another family member or friend to help you.
Could not agree more about the self-advocacy!
How can I contact a doctor bcz I'm also suffering from myelofibrosis
I’m fatigue all the time, I have nights sweats , my white blood test are abnormal, I had vertigo twice it was really weird, I have headaches, but whatever!
Hi there, if you are experiencing symptoms that are concerning you, please seek professional medical care. It's important that we get the answers especially when it comes to our health. -Stephanie
I had the same but high red blood cells. Taking HU a medication to help.
@@ThePatientStory well I kept telling my doctor that I had symptoms of cancer for 2 years then when I couldn’t swollen not her but another doctor sent me to imaging then to biopsy it was cancer so had she listen to me
exact symptoms as me!
also had stomach pain for a while
My first oncologist also did something similar. Which made me decide to get a second opinion. I have Lupus so my Oncologist blamed my symptoms on lupus. But when I got a second opinion, from a new oncologist, which blood work showed that I have a Jake 2 mutation. I have ET which is a blood cancer and Lupus. Now my oncologist requested for me to have a bone marrow biopsy because he thinks I may have MF.
First, I am sorry you had to go through bouncing back and forth. This is something we hear a lot about, and especially when you have such a rare diagnosis like MPNs. If you want to share your story, please ping me - stephanie@thepatientstory.com. Thank you!
I would have fired that doctor too! I get what she was trying to do, but she wasn’t treating you like an adult even when you clearly stated your needs.
At minute 11:30 when the nurse-Mary with the primary myelofibrosis discusses the attempted infantilization of her as a patient, in spite of her education and training as a nurse, you can see very quickly why large subsets of the population avoid the doctor's office. The use of " 'C' word" is a red flag in a hospital setting, someone isn't a grown-up and it might not be you but the dude with 10 years of specialized education. Find an adult who will talk to you like an adult and is willing to be the bearer of bad news.
Another great video! Stephanie will you share updates to your own journey too?
Yes Stephanie we hope you are doing well too!
Georgina, thank you so much for your kindness! I am happy to report I'm still in remission - I need to update everything soon, don't want people worrying about me. Appreciate you very much! ❤️ Stephanie
Thank you so much! Grateful to be feeling good. -Stephanie
@@ThePatientStory very happy to hear that!! Thanks for the update and Happy New Year!
Mary you live full life as like others don't worry, MF is different for each individual. Myelofibrosis should be categorized according to the favorable and unfavorable mutations and they shouldn't put favorable one in cancer group. I am 45 years, I was told I am diagnosed with MF with a favorable mutation ,but I have no symptoms at all but they put me in Cancer group what a awful isn't it ? I was also told that I might be having this from last 5 years or more !!!!The MF is not doing to me any way but this medical system and WHO does the loss.. Now I can't buy a house and my life and my family is ended here because I won't get loans or insurance etc., with this diagnosis. thanks to WHO and medical system. I was told I don't need any treatment as I have no symptoms. WHO please change the criteria for MF. Remove the C from MF.
Chandra, thank you so much for taking the time to share your perspective - it is very helpful to understand.
Wow shouldn’t a blood test have been the first most simple test done , and it wasn’t done til months later?
Wow, she had a terrible doctor. I think at the very least he broke some laws sending her blood for DNA analysis without her permission.
Docotors awlays abandonn and cancel appointments when they misdiagnise you
What a patronizing oncologist!
Seriously from one medical health professional to another , how patronising. I agree, I would look for some one more professional.
Rashes hives fatigue and acid reflux chest pain tool me to a and e had x-ray then they said wanted to do cat scan head neck I came home few days later heamotoligist rang said bloods show pottasium up and growth in left side neck Monday having biopsy ultrasound MRI and see gadtrional specialist
It sounds to me the nurses get thrown with the crappy job of letting the patient know that they have cancer. Seems pretty chicken 💩 for doctors to not do this. And I’m sure there are some patients who are too terrified to really grasp what disease they really have. I think I may have had the same reaction. I would want someone to be real with me but be able to be compassionate and patient as I grasped the reality. I’m sure it’s prettt difficult.
Doctors are cowards they hide and run away when they misdiagnosed you and leave you hanging
Nothing like a woke oncologist when you might be dying. Dear god what has this world come to. That doctor sounded like a 12 year old. She was worse than the GI doctor I had to fight with knowing I didn’t have a colon problem. As it turned out I had stage 4b ovarian cancer.
That’s not woke !