Friend just diagnosed last Friday 10/06/06

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alliebridge
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Date Joined Mar 2006
Total Posts : 67
   Posted 10/10/2006 12:13 AM (GMT -7)   
Hi everyone,
 
I am hoping you can help me. My friend was just diagnosed with breast cancer and it seems her PCP isn't very helpful. She will be needing a referral from him (HMO)to get treated for the cancer. He basically said it's up to her and mentioned one patient he had that did a particular treatment for her cancer. Well, she can't really make an informed decision without the proper information in front of her, right? The womens center where she had the biopsy and ultrasound were no help as well. I am really shocked by this!
 
My question is, where does she go from here? How does she get the right information to make an informed decision? What did everyone here do? She lives a few hours from a major city with many breast cancer centers. Should we just call around to these hospitals? I feel that we need to have a plan--take action quickly. She's just in limbo right now. We definitely need some advice.
 
Thank you!

gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 10/10/2006 5:09 AM (GMT -7)   
What is the major city? Perhaps here you can find someone who has actually had treatment in the area. Some doctors are very knowledgeable about breast cancer and others........well they leave a lot to be desired. How was she diagnosed? She has the right to get a copy of the pathology of her biopsy. That can also help in making a decision about a doctor or what method of treatment. I, too, find it hard to believe she was not advised about choices. Give us more info and perhaps we can help better. Hugs MK


alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 10/10/2006 6:38 AM (GMT -7)   
Thanks for your reply.
 
She will be calling her PCP, GYN, and Inmed Diagnostic Women's Imaging Center today to get all records and slides. Inmed called with the diagnosis last Friday and that's it--no information. Her PCP mentioned one patient of his, what she did, and that's it. She lives on Cape Cod, a few hours from both Boston and Providence.
 
She is especially looking for a place that uses immune support in their cancer treatments, as she has Lyme Disease, other tick-borne and immuno-compromised illnesses at the same time. So, it's not like she's healthy other than the cancer. She definitely needs to build her immune system and perhaps try treatments that are not quite so harsh on the body. We are investigating cutting edge alternative treatments such as QXCI right now.

MNlady13
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Date Joined Jul 2003
Total Posts : 2044
   Posted 10/10/2006 7:27 AM (GMT -7)   
She needs a referral to an oncologist to set up an appropriate course of treatment. That's the first place to start. Lauri
"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 10/10/2006 8:17 AM (GMT -7)   
Whew a compromised immune system is bad enough. Dana Farber is one of the best in the nation. Boston is one of the best cities in the nation to find good care for most everything. I live in TX but I went to Boston for nurse's training a hundred years ago, it seems. It was the best for medical schools then and I am sure it still is. I don't think we have anyone here on the board right now who goes to Dana Farber, but we have had in the past. Hugs MK




alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 10/10/2006 12:52 PM (GMT -7)   

Hi Everyone,

Thanks so much for all your replies! I did mention Dana Farber to my friend, stating that this is where Sheryl Crow went etc., and she said that she had heard that they don't work with supporting the immune system there at all.  sad

It's very important that we find a cancer center that works with building a person's immune system in order to be strong enough to fight the cancer. 

If anyone knows of a really good oncologist in the Boston area please let me know. It would be great to get a recommendation rather than just drawing a name from a hat.

Thanks again, everyone!


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 10/12/2006 9:11 AM (GMT -7)   
You mentioned that your friend "heard that they don't work with suporting the immune system there at all." Has she called and spoken to someone? She really should call an oncologist and at least start with a first opinion. Let her doctor worry about the immune system. She should go for a consult and then consider a second opinion. If she is looking for a specialty provider, it may be a little harder. She should start somewhere.


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 10/12/2006 9:36 PM (GMT -7)   
Hi! I am glad that you found our group and have asked questions. Your friend is very lucky to have you.
 
As the others have said, Dana Farber is one of the best treatment centers in the US. I feel quite certain, with the reputation that they have, that they are up-to-date on almost every type of treatment. Your friend needs to contact them. She can talk to a social worker or chemo nurse (I am sure that they have individuals on staff that deal w/ this type of information). She needs to make an appt w/ an oncologist asap. She can request male or female. But she needs to realize that there may be one oncologist that deals w/ the immune system and chemo.
 
Please get her a notebook and tape recorder. Have her write down any and all questions that she wants answered. No matter how silly they may seem. Then take those to the appt w/ her. A good physician will answer each and every question and use terms and words that she can understand. She also will need to take a one or two people w/ her to the appt. She will be given so much info that she will not retain most of it. Having another person there to listen and also write down the answers to the questions is a great help once she leaves the office. Also, record what is said. If a physician doesn't want her to use a tape recorder, then get up and walk out. She also needs to remember that she can interview as many onco as necessary until she finds one that she is comfortable with. Having faith in her medical team is half the battle.
 
We know how frightened she is and how overwhelmed she is feeling right now. Please encourage her to come here and post. We will do everything that we can to help her on this journey.
 
Hugs..Deb
 


alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 10/13/2006 2:17 PM (GMT -7)   
Thanks so much for all of your replies. I forwarded them to my friend. Hopefully she'll be posting on here soon.
 
:-)  

alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 10/20/2006 4:45 AM (GMT -7)   
My friend lives on Cape Cod, Massachusetts.
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