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Old 04-10-2009, 01:03 AM   #1
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Bill for young adults with cancer.

Here is a bill I thought some of ya'll might like to sign and support. I hope it's ok to post it here. I thought it would be ok since it's not really a debatable article. At least I wouldn't think it would be.

Here is the link

Here is basically what the Bill is for.

1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
4. The right to be informed about available clinical trials and given reasonable access to them.
5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
7. The right to “generationally applicable” psychosocial support.
8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.
I thought this might be something some of ya'll would want to support. The first part of this bill hits home with me. As I have said before I was misdiagnosed with a sinus infection/bronchitis for several months before I finally went to 2 different doctors other than my PCP. I went about 7 months coughing and being sick, losing weight night sweats and the worse itching ever, and several rounds of antibiotics. The PCP never once did a exray. I was even told by the second doctor that "I was young and healthy and that they don't even give antibiotics to people my age". Finally I went to another doctor who I feel God led me too. The first thing he did was a xray and then a ct and within a week of seeing him after 7 months of having a cough I couldn't get rid of I was diagnosed with Lymphoma. I was only 28 yrs old. I know doctors can get stuck in thinking that they know exactly what is wrong but if you have doubts at all please don't hesitate to get a second opinion. My cancer had started in my chest and by the time it was found it had moved into my neck. One thing we didn't know but extreme itching that is so bad you scratch and scratch and still feel like you haven't scratched enough is a classic sign of cancer. I did this for several months. All these signs that most doctors would get were missed because of my age. I know I have rambled and I am sorry but I just feel like if maybe by me telling my story will make someone who is having the same symptoms as I did or similar will think about it and go to the doctor and maybe help them find their cancer sooner. Cause early diagnosis is the key. It seems like cancer is affecting so many these days. I hope I haven't overstepped by sharing my story. But if you can please help with the Bill above.
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Old 04-10-2009, 01:58 AM   #2
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I hope this Bill of Rights for young folks is a roaring success.

I hope something similar comes about for the elderly and all other ages....and no more stereotypes re: age. We are being put in cubby holes, and they ''think'' people are what they are because of age, ethnicity, and financial status...we need to be treated seriously and thoughtfully, no matter who we are.
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Old 04-10-2009, 05:52 AM   #3
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Thanks for sharing your story Mandy. I didn't know about the severe itching part of your story. We all can learn from other people about things that happen. I am glad you had that other doctor and he did the xray. You have had a rough time with all this.
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Old 04-10-2009, 06:32 PM   #4
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I have now signed it Mandy!
I did not know what exactly to write
in the "message" box
so I just put I support the bill.

Thank you for pointing this out
and I will pass it on.
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Old 04-10-2009, 09:11 PM   #5
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Every person, regardless their age should have the right to everything in the bill above.

I am, and always will be a firm believer in the right to not be blown off - but to have the doctor take the patient serious - and I feel like if the doctor a person is seeing does not know what is causing the s/s the patient has, HE/SHE should be obligated to send the patient on to see someone else. As a patient, a person should never hesitate to ask for another doctor if they feel that their s/s are not being heard, or that they are being misdiagnosed. If you don't agree with, or trust your doctors diagnosis, you as the patient has the right to persue a disgnosis from another doctor.
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Old 04-11-2009, 12:31 AM   #6
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Yes, itching is something that most people don't relate to cancer. But I used everything under the sun. I took benadryl, oatmeal baths everything that you have ever heard of for dry itchy skin. But this itch is the deepest itch you have ever felt. I kept a brush handy and my arms and legs look like I had been attacked. Once it starts you cannot get it to stop. I don't remember the exact terminalogy maybe GGH can help here but the itching is caused by the cancer cells dieing. At least I think that is the way the doctor explained it. He put me on Zyrtec and it stopped immediatly.
I agree with everything everyone wrote. Everyone does deserve the same treatment. But I was totally blown away when I was finally diagnosed with cancer because to my other doctors nothing serious was wrong. And I think if it happened to me it's happening to others. Hodgkins is a disease that more and more younger adults are getting. It is also something that until recently not many doctors seen alot. So I think that is why my pcp didn't catch it. If I saw any other bills for others I would sign it too. I appreciate those of you who signed the bill. I hope that someday its better for everyone. But please everyone if you have any concerns at all see your doctor and don't stop questioning till you are sure you agree with the doctor. And then even then maybe get a second opinion. I was told that of any cancer to get Hodgkins is the one to get. Well I prefer noone to get any of them. Because if Hodgkins is soposed to be easier to treat it still was so hard to go thru. I went thru 11 chemo and about 24 radiation treatments. I know there are some that have been on chemo for years. My heart goes out to them to have to endure that for so long.

I guess the short of my story is this. I just wanted to share my story so if anyone reading might have just one of the symptoms I talked about they would see a doctor. Hope everyone has a good weekend
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Old 04-11-2009, 06:18 AM   #7
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Mandy, thank you for sharing your story.
None of us ever know when it cold strike us or a member of our family.
And as we read here, has already done so with many of our members.
I signed it last night and will send it on to family members and friends.
Thank you for making us aware of this Bill!
Continued prayers for your recovery!
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Old 04-12-2009, 12:39 AM   #8
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Originally Posted by Blaze2 View Post
Mandy, thank you for sharing your story.
None of us ever know when it cold strike us or a member of our family.
And as we read here, has already done so with many of our members.
I signed it last night and will send it on to family members and friends.
Thank you for making us aware of this Bill!
Continued prayers for your recovery!
Thank you for the prayers and for signing this and passing it on. It means alot ot me.

Hope you all have a HAPPY EASTER!
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