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Bad Results and 2nd opinion advice needed Bad Results and 2nd opinion advice needed

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  #11  
Unread 01-15-2004, 09:04 AM
Bad Results and 2nd opinion advice needed

Maria--

I was very sorry to hear the news of your recurrence. If I were in your situation, I would want to be evaluated by a gynecologic oncologist who is a vaginal cancer expert. I just wanted to add two more websites to those already provided above.

These are for the Mayo Clinic's and Johns Hopkins' Gynecologic Cancer Centers:

http://www.mayoclinic.org/vaginalcancer-rst

http://womenshealth.jhmi.edu/gynonc/ptinfo/index.htm

I got a second opinion at Johns Hopkins before my treatment for endometrial cancer in 1999.

Best of luck to you in your evaluation and treatment process, and please know that you are in my thoughts and prayers.

Take care,

MoeKay
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  #12  
Unread 01-15-2004, 09:08 AM
Bad Results and 2nd opinion advice needed

Maria,

There should be no problem getting a secong opinion. Will your insurance pay for the medical costs, if not the travel?

To minimize expense and pain, the most important thing is to gather ALL of your records - treatment - surgical, pathology, chemo notes, all your scans (CT, PET WHATEVER!!) and take them with you. DO NOT MAIL (unless you use an overnight carrier that will guarantee delivery - even if not overnight) since it they are lost, you will need to get them done AGAIN

Also, ask MD Andersen about low cost lodging under your circumstances. These big centers are accustomed to this and may be able to help. I would also ask the airlines if you could get a discounted ticket, under the circumstances.


I would hand carry them on the plane.

Dorrie
  #13  
Unread 01-15-2004, 09:39 AM
thank ladies

Thanks for your input and support. You have been wonderful with coming up with some great ideas... I guess you know how it is, that at times like this, we need all the support we can get. Sometimes it seems my mind has turned off. lol

Sharon

I don't know what type of cancer I have. (it's one of the problems here, little amounts of info) all I have is the stage. Which was II. What it is now, I have no idea. Im very curious about the foley thingy. I looked it up on the net, and there do seem to be advantages. Hun, is your permanent?

I did some looking on the net about stomas. Yikes! I had no idea. My stomach just turned when I saw that. I had some ideas about stomas, but I learned more today, and saw pictures. I hope for another alternative.

Dorrie

I don't know about any thing that my insurance will cover, as it's a government insurance, very different from America. National health coverage, I think you call it. Thanks for the ideas about gathering info and taking it with me. I feel bad about doing this to my doctor here... she is nice, and thoughtful, but this is my life.... most likely I will come back to her and go ahead with things, but I know if I don't have the 2nd opinion I will never forgive myself.

All

Thanks for the web sites, I will look into them. I wish I had a good idea about the best... since I have such a rare cancer.... but I guess they are all about the same... at least the major ones.
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  #14  
Unread 01-15-2004, 09:51 AM
Thoughts and Prayers

Dearest Maria,

I just want you to know that my thoughts and prayers are with you.

What wonderful help you have received from our sisters here with all kinds of info, ideas, addresses!!

This truly is family.

nancy j
  #15  
Unread 01-15-2004, 09:54 AM
Bad Results and 2nd opinion advice needed

Hi Maria,

No the Foley was not permanent. I had it in for two weeks while my vagina healed. Stomas do seem pretty drastic. Maybe a second opinion would have ideas on avoiding the stoma. Unless they are planning on removing your bladder. Are they thinking of doing a pelvic exteneration (sp?) on you?

Do you have a copy of your pathology report? That should tell you what type of cancer you have. Different treatments work better for some cancer than others, so knowing the type is important.

Having a rare cancer like ours makes it really tough to get relevant information. It can be very frustrating. I can only imagine what it must be like in a different country and not knowing the language. Have you looked into finding a medical translator so you could communicate more easily?

You are in my thoughts. Take Care.


Sharon
  #16  
Unread 01-15-2004, 10:22 AM
So sorry to read this

I'm so sorry to read this. If you can, I'd say MD Anderson in Houston is THE place to go. Don't feel bad about going for a second opinion--it's your RIGHT and any good doctor will understand. I hope you can get there and get answers. A big and tons of prayers for you. Ellen
  #17  
Unread 01-15-2004, 10:43 AM
Bad Results and 2nd opinion advice needed

Dear Maria,
I was so sorry to hear your news. I have followed your story since you first started posting. You have always been so courageous. I wish I could step through the computer screen and give you a hug.

You might want to check out the Cancer Fund of America. They provide all sorts of services for cancer patients and their families including financial assistance. They also sponser a couple of different programs that offer free flights to treatment centers. There are often empty seats available on corporate jets!

The web site is www.cfoa.org, then click on Cancer Links, then Financial Assistance.

Good luck Maria, you deserve it. You are in my thoughts and prayers.

s
  #18  
Unread 01-15-2004, 12:34 PM
Bad Results and 2nd opinion advice needed

Maria,
I can add to the good advice you have received here, butr want yoiu to know that you are in my prayers. I did have the stroma for 10 months and once I got used to it, it truly wasn't that bad. Most of the time I hardly thought of it. I may end up with it again if we the Dr's can't fix the problems with lack of control I have had since the reversal
  #19  
Unread 01-15-2004, 01:10 PM
Bad Results and 2nd opinion advice needed

Marie,
I am SO sorry. This just totally stinks. I hate it!

I would do a little research and see which cancer facility in the US has the most experience with your kind of cancer. I don't know it that would be Anderson, Hopkins, Mayo, Farber? One of those probably has done more with vaginal cancer but I don't know which one.

Absolutely you should get a second opinion, even if the government won't pay for you to come to the US. It's worth paying for it yourself for the peace of mind that you are making the most informed decision you can make. This is your health and your life. There is nothing more important to spend money on!

You will be in my thoughts and prayers. Take it one step at a time. You can get through this.

Love and many hugs,
Janie
  #20  
Unread 01-15-2004, 01:54 PM
Maria,

I want to wish you all the best and push through this screen and give you a hug. You are certainly strong and courageous. Please keep us posted. I will put you in my prayers!
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