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Indigoblue

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Queen Blue Sky & Golden Light
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Reply with quote  #1 

I noticed this forum has been somewhat neglected, and was wondering, life after any cancer, it's an avalanche.  I read about a few, especially triple negative disease, who survive, not without worrisome side effects, wondering if they made the right decisions.
 
It was expressed to me (by the surgeon, cancer nurse, oncologists, onco nurses, and Radiation Oncologist, as well as the Breast Cancer Radiologists), how important it is NEVER to go on-Line for help.  I made copies of every new discovery or opinion, and not one physician or nurse ever read  any of the information.  I was told never to research, and to stay off the chat, support and cancer sites.  
 

Sorry Dr. Charly, but this "mamm"  is always reading and researching; no matter what the subject, I think it's imperative to know the gudielines and all the positive outlooks unknown to the ignorant patient.  I don't want to be a doctor, I just want to play one on T.V.
 
love,
Indi

nosurrender

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Reply with quote  #2 
Indi, when I was first diagnosed I was told by my onc not to go to IN PERSON support groups because he said that I would get scared. He said I would see people in various stages of the disease and then see some not come back again and it would cause me anxiety. That is why I found the internet.

I have had docs tell me that anything I read on the internet was wrong too.
But now, as we all grow in numbers, I get docs saying to me, What have you heard? asking about the internet.

I have one answer for those docs who don't want us to get info online:
CONSTANTINE.

Can they top him?
Never.

Big hugs and shiny rocks,

Love,
g


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Naniam

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Reply with quote  #3 
I was given names of BC websites to vist.  I was encouraged to go to support groups too and to get involved in BC activities.     I wasn't ready for the BC support groups or BC activities but I did use those websites and others!!

Brenda
Karen1956

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Reply with quote  #4 
Personally, I don't remember what I was told, but I signed onto bco soon after my Dx but I think my DH found it.  But I did not go there till after I started chemo and it was a great help - there was a group of gals going through the same chemo as me and they  became a sort of support group. And of course I found the wagon circle, but I think that was after chemo as I thought it was for those done Tx because of the thread title - moving on.
I did go to one in person support group (there were signs in the cancer center) and I hated it.  The nurse who was running it - well her voice grated on my nerves - plus many of the gals had been there for a while and sort of bonded and no one was at my stage of Dx, Tx or had faced the journey I had to go down. At that particular meeting one of the participants was presenting - don't remember what she said, but then the topic turned to stress and being at a bad place in life of lack of family support etc for their cancer. It was just not a good mix for me.  I never went back and did not look for another in person group.  Just couldn't be bothered or waste my time.  Geeze - I got BC because I got BC.  Just one of the unlucky 20%. So   BCO became my support group and now NOSURRENDER is my support group.  I love it here.  Thank you Gina.  Hugs to everyone, Karen
Bren

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Reply with quote  #5 
My surgeon told me to check out BCO and ACS.  I think he regreted that later. 


csp

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Reply with quote  #6 
You know what, my docotor rolled his eyes when I told him I research on line. We got in an arguement. His point was that there is a lot of misinformation and outdated studies. I told him I was at least intellegent enough to check the date of the study or the source of the information! How outdated is a book? He shut up. 

Hgs,
Carrie

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jadesloge

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Reply with quote  #7 
I finish treatment tomorrow.
I was encouraged to go to support groups. As a matter of fact, my surgeon and oncologist are associated with two different breast clinics and in the beginning I was bombarded with calls from social workers letting me know when the groups met. I never have gone. A friend hooked me up with one of her acquaintances who was about 3 weeks ahead of me in diagnosis. We met and it turned out we have the same oncologist. We work out at the same gym together now. I am glad that I met her. As for going on line, I was not discouraged and I was given a list of helpful sites to visit. My oncologist is Internet savvy and when I bring something up I let her know I got it off the Internet. She never dismisses it, but does clarify if I have misunderstood. I have an exceptional team of doctors and they have done nothing but build my confidence in them. One of the best things about them is that they all are humble and compassionate and talk about everyday stuff with me that is going on in their lives. I have bumped into them away from their office and they know who I am and aren't afraid to chat with a patient for a few moments like regular people who know each other would do and that is cool.

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CherylG

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Reply with quote  #8 
In the beginning all my docs told me to stay away from these sites. But then as time went on and I asked more informed questions (thanks to Constantine's info) they asked if I had a medical background of some sort !!

I think we do have to be careful where we go for information and we cannot take for granted that the info applies to everyone. Every case is different and we are all at different stages ... that's what works here. No matter what stage of dx or tx you are there is always someone here who has been there or is there right now... someone to help you every step of the way.

My onc is a researcher here and she was amazed at some of the information I brought in. I found BCO late in my journey but did get good information there but NSBCH is my home. I found more than information here... I found friendship and understanding. Thanks to you GINA!! And of course thanks CONSTANTINE!!

Hugs
Cheryl

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