Comments by "Survivor" (@CopingwithGrattitude) on "The Patient Story" channel.

  1. You are only still here because of your own advocacy. I am impressed and you rock! I hope you continue to encourage others who are meek to follow through and question everything! Doctors do not know everything-a rare presentation really throws them. A lot of cancers mimic so many other illnesses and at a young age-lung cancer, colon cancer, etc…it isn’t even on their radar. You go girl. Hugs from another cancer survivor.
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  2. “If we are kind, that is what matters most” …what a wonderful legacy to leave for your children. I wish you well and to be pain free, whatever your journey.
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  3. I had cancer during COVID; I took every COVID shot to protect myself because I was immunocompromised. I also took the shingles shot during that time. Grateful I made it through.
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  4. I am so sorry the doctors allowed you to hear their argument outside your hospital door. Highly unprofessional and something hospitals have had to address, unfortunately with policies to protect privacy and patients. I am an experienced Medical Technologist (laboratory) and it is extremely difficult to differentiate Mononucleosis and Leukemia. I worked in a clinic on campus and seen it missed by experienced technologists. I happened to work in Pediatric cancer prior to my campus job and looked at the slide the next time a patient just like you presented and knew it wasn’t Mono. I could definitely see WHY it was missed-that age group always has positive Mono and their cells look all kind of crazy. Sometimes their platelet counts even drop (mimicking a common leukemia symptom). I knew the difference by scanning the entire slide and also by the symptoms that not only platelets were dropping but also hemoglobin and hematocrit (red blood cells) that it was not Mono. Leukemia blasts (the cancer cells) look different than the reactive cells seen on a slide from a Mono patient but the difference is subtle, a difference only techs that have seen hundreds of cancer cells might detect. The other issue is that childhood cancer is so extremely rare it throws off caregivers as an initial diagnostic possibility. I am so sorry for your experience at diagnosis. Hopefully that scenario wouldn’t still happen today but I still suspect it happens.
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  5. Something’s not right. Get a second opinion or get a referral to Infectious Disease, Rheumatology or Hematology/Oncology. If they haven’t found abnormal labs you may need scans or at least further bloodwork. It could be something autoimmune. It could be Mono, it could be thyroid or other hormone related disorders, it may even could be cancer but get a second opinion.
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  6. I also agree-all hormonal affiliated symptoms. Usually those integrative medical doctors run a ton of hormone tests. I worked for a general practice and it wasn’t that uncommon for our docs to run a 24 hour urine test on patients. Hard to understand how she was not diagnosed sooner.
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  7. Good luck on your journey and I hope you can share your story someday. Unfathomable at just 28yrs old.😞
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  8. Ms.Cheryl, no one is sticking a contaminated tube up your rear end. Hopefully your comment was in jest, all medical procedures have a researched and specific standard of care. When possible devices that are disposable are used. When not they are scrubbed and sanitized, then sterilized. There are controls used to verify sterility is achieved. This includes surgical and dental instruments.
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  9. I have heard physicians over the years as I’ve worked say those same words “if you don’t hear from us, then it was all normal” or whatever. Out of earshot of the doc, I always told the patient to get a copy of their results-and an understanding of them. It is THEIR property, they are paying for it. Even with the amazing medical record keeping systems we have today, calls to patients sometimes get missed. Everyone is stressed in medicine because the undercutting of staff and time allotted per patient. You absolutely must be your own advocate. I am a medical technologist by trade and often patients don’t even know what tests we are doing on them. I have been told NOT to tell the patient what is being collected. Not okay! If the patient is being charged (or their insurance) then they should ALWAYS be informed regarding what is being drawn. I have had docs send people to the lab for DRUG TESTING and not tell the patient what is being drawn. They are going to sure as hell ask-especially without insurance. Not all labs are covered by insurance, sometimes even standard every day ones-depending on when it was done last. Coding is also extremely complicated. As a lab tech that is the one rule I continuously broke-I read off each lab and what it was for as I screened the patient for identity and told them if they didn’t hear back from us to CALL until they get the results. I can also state for a fact that the providers do not review your medical records prior to your appointment. There is no time for that and with 15 minutes to interact with you they may only glance at it if you are lucky. I am not faulting them but that is standard of care. You need to blurt out whatever significant history you have during your appt. One might assume all that detailed information you are asked to provide is carefully analyzed by your healthcare provider. It isn’t.😢
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  10. She should talk about how her eating habits had to change with no stomach. I would like to know what types of food can be consumed.
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  11. You do have lucious, beautiful hair!!! I would have struggled too…but it is just hair. Hair is not life. I had gorgeous thick long brunette hair and I went bald within about 14 days! Didn’t love it but I got through it. The hardest part was others reactions…not being recognized. I shaved it completely bald at work surrounded by coworkers. I had cut my hair shorter in stages prior to chemo but nothing really prepares you for the gobs of hair just slipping off.🤢
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  12. You are quite the survivor! Cancer does become a part of your identity; you do deal with a life long of side effects.
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  13. Yes, you have to request anesthesia; they usually do not offer it. You may have to pay out of pocket but most people would versus enduring the marrow aspirate. It is standard of care for pediatric cancer., thank goodness! The first bone marrow is the worst because the marrow is packed with tumor cells.😢
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  14. Yes, high white blood cell count; and distribution of the types of white cells, and the cells on the slide look abnormal. Often red blood cells and platelets are also decreased.
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  15. @ Shots protected me great.👍🏼 No COVID and NO shingles! Modern Medicine!🙌
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  16. Be sure you advocate for yourself.
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  17.  @Roethles Thank you for having clarity in this mess. Cancer is due to multiple causes, genetic tendencies, environmental, lifestyle, diet, etc…a “random” mutation that starts rapidly dividing. It is theorized our body is likely fighting off cancer all the time…we have an amazing immunize system! Many health conscious people get cancer! Star athletes can develop cancer. Cancer knows no boundaries.
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  18.  @jq5843 not necessarily environmental factors, previous illness, stress levels, loneliness, there are many contributing factors. There are athletes with clean diets whom also get cancer. Having a clean diet and regular exercise is a great idea but not at all 100% preventative. Your genetics plays a huge role-but even that is no guarantee one way or another.
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  19.  @perseveranceofkeisha8792 change doctors if you ever get that impression
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  20.  @rohinihyde4766  Vaccines have saved millions of lives, our immune system is amazing but not fool proof. I have had all of the COVID vaccines and a booster yearly and grateful they were available.
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