Note-(1 IN 4 WOMEN HAVE BREAST CANCER.) THESE TUMORS ARE SOMEWHAT A NEW FIELD OF MEDICINE. Or is it Really! I'm not so convinced right now. I'D NEVER HEARD OF THEM BEFORE, BUT THEY ARE NOT TO BE PLAYED AROUND WITH ANYMORE THAN BREAST CANCER. 99.9% OF THEM ARE NON CANCEROUS, BUT COULD THERE BE A LINK BETWEEN THESE TWO??? HARMONES AFFECT EVERY PART OF YOUR BODY.
IF 1 IN 5 PEOPLE HAVE THESE TUMORS, WHY HAVE WE NEVER HEARD OF THEM? THIS HAS BEEN PROVEN THROUGH AUTOPSYS. DOCTORS `
SUPPOSEDLY`ARE NOT TAUGHT ABOUT THEM FOR THE MOST PART.
I'VE BEEN IN 3 STATES LOOKING FOR THE RIGHT KIND OF HELP. IT LOOKS LIKE DUKE HAS A THUMBS UP ON THIS. THEY DIAGNOSED MY FIRST TUMOR AROUND 2004.
PINK RIBBON IS TO BREAST CANCER.
IF YOU HAVE THYROID PROBLEMS. GET AN MRI!YOU WIL FIND SYMPTOMS AT `THE PITUITARY NETWORK ASSOCIATION` WEBSITE LINK BELOW.
ASK THEM TO KEEP IT GOING UNTIL PITUITARY TUMORS ARE RECOGNIZED AS SERIOUS OF A DANGER TO YOUR LIFE AS BREAST CANCER IS.
***Think about this. After a certian age women are told to have a mamagram every year. Now i'm considering 1 in every 4 women have breast cancer and this is why. That being the case, should not everyone at Least by 35 or 40 have an MRI every 2 years until menapause??? It just makes good common sense to me!***
Please feel free to contact me.
I am just about positive i will know this week what kind of treatment will be used and if i have to fly to NC. This blog is also where i'll post my treatment,so check back when you can! I love getting messages :). I did re-read this and edit as best i could. My writing ability for someone to be able to follow is greatly lacking right now. Just overlook what dosent make sense and know i tried :)
With Love,`Cj
pituitarytumor_awareness@yahoo.com
2 comments:
Been waiting for this blog entry to get finished.
Love the pick using silver for pt. awareness. Problem is until there is a non profit that would actually support patients dealing with this then I would personally withhold promoting this even tho, I have a family member dealing with this issue. There are fantastic research organizations earnestly devoted to research. They truly deserve the support they get. PTNA is one fine organization. With competing health care dollars today, this puts places like PTNA against pits patients. irony.... Sometimes these tumors or their secondary effects for a variety of reasons are resistent to treatment. Macroadenomas long term are 50-60% resistent. Insurance caps already exceeded the daily essentials fall away. Let patients decide and direct funding, not the pharmacies, not just the physicians, PT patients typically get diagnosed after 10 yrs of hard persistence, their expertise has to be part of the research process. It's not!
Your just now entering the post diagnosis phase of this and Congratulations on obtaining a dx, that in itself is huge, your perserverance got you there. I pray your treatments bring you perfect healing.
For the patients whose disorders are resistent, precious health dollars that could save their life are spent of further research. It's wrong. Patients first then research. 10+ yrs into this closer to 20 now. every dollar has been long spent. Resistant P.tumors are one of the most expensive disorders in the books. Medications can run 4-20 thousand a month for a lifetime. Let's find a balanced approach, research gets what they need and patients also receivr the treatments they need. The medications alone can be outrageous I don't understand it, with the Orphan Drug act already funding the pharmacies and still these drugs cost this much for not so rare medications. 1 in 5 20% not so rare. It is true the same pharms producing these drugs qualify for this funding. HOW????
Im not a mathmetician, but guidelines for Orphan Drug funding I think I read fewer than 20,000 people affected. But then it gets muddy. is that incidence or prevelance?
Balance the dollars for this disorder, Doing this I believe will not only help P. tumor patients today, in the end countless patients with endocrine problems will benefit from what is learned by treating/supporting resistent p. tumor patients today.
I agree in theory with your suggestion of including screening of some sort as frequent as breast or prostate cancer screenings are done. I would look for other methods. MRI in themselves don't emit low level radiation but often this is injected into blood streams to enhance tumor images. Arguments have been made and suggested low level radiation may trigger these inactive tumors to become active. So ironically the very tool to dx this may trigger it.
Last month VARI (a distinguished research facility) identified a gene mutation that is definately associated with pituitary tumors. I think I blogged about it, if not I'll come back and write about that in my blog. So maybe blood tests, gene testing would be a venue to filter out those at risk. Maybe other blood tests could also be done first to que up some patients presenting with 3,5 or 7 positive values for p.tumors, those then get MRI.
Best thing of all is for all of us to keep talking and learning.
I give you Gold Stars for a great article. Thank you for all you do to promote awareness. That's what it's all about. Together we will all find our answers.
I totally agree with you! I've been researching this and menapause for 3 years,and to be totally honest i'm so sick of it.If i can inform One person and it may keep them from going years with wrong diagnosis and eventually like some of the precious people i've read their posts here,what little i can do to bring awareness will be worth it.
I also support the PNA, it has been a lifeline! Even with all my research it took an interested doctor who knew nothing about these tumors to do some research of his own. He came back to me with the PNA! Thank God for the few drs who are willing to learn! Paitence first, what an odd concept with the greed of our society. When patients have some knowledge and power over their own healthcare, they dont just take anything a doctor tells them at face value.I'm tired of doing the job the specialist is supposed to be doing, dont mind informing doctors outside this field, but this goes so far beyound even common sense its rediculous! Blues Post, all that medication and what its cost HIM to say the least! the insurance etc, i think its a crock! Drs have been leading me down that same road! I know my body,if it had not been for a duke dr finding the first one in 04-05 from the mamagram that nearly caused me to pass out,(that is the First time i have Ever seen that) and the woman said, that happens alot,don't worry about it. So what does that tell you! But the dr picked up on it right away. I'm probabbly repeating myself, an hour or so on a computer and i feel like running! :o). FYI... had to talk to the ins. lady yesteday, spent an hour iforming her about this. I kept telling her i knew she was busy and i would go, but she wanted to hear more. Next thing i know she is at pituitary.org telling me what she's reading. That was worth an hour to me. Thank you so much for your message, i only wish those who need to hear it could.(well,more like-Would). I'm off of here and getting out of the house!
`cj
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