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Trying to learn the ropes

gami43
Posts: 281
Joined: Jul 2011

I am a newbie, but wish I had found this site when I was first dx. What a group of special people you are. I don't want to post in the wrong place or break any rules so I need your help to guide me. I did a reply on the "what is your dx" site because I saw a post with my same dx (the first lady I have found in the nine months since I was dx); and it showed up in the middle of the discussion. I hope Judy sees it as I would love to communicate with her. I was dx with triple negative matrix producing carcinoma ( a metaplastic tumor) in October, 2010; had bilateral mastectomy with immediate reconstruction in November, 2010 and started chemorx January, 2011. I finiashed up on April 19. My first checkup and labs will be July 28th. I am so happy to find this group and support from those who are going through or have already made it through the same path I am walking. Thank you for being there. Because my tumor is rare with a high recurrance rate, I have this little nagging in my head about how best to deal with this; but recurrance,I realize, is a fear for all of us. Should I ask for scans at followup (my onc does not do them routinely) or just go with the checkups and labs? I appreciate any insights or knowledge you can impart. I value your experience and knowledge. I have rambled on enough. Looking forward to being a part of this group. Thank you.

Teresa

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1654
Joined: Jan 2011

Hi Teresa -- I don't have the same type as you, but I wanted to welcome you. Many ladies from here will be able to help answer your questions.

grams2jc's picture
grams2jc
Posts: 756
Joined: May 2011

But glad you have found us. Anytime you reply you can just click on the reply of the original posting to have your comments show at the bottom of the thread, or you can click reply on the post you are answering, if it's in the middle of the thread... sometimes those are hard to find.

If you saw a person you would like to contact privately you can e-mail them by going to your CSN Email on the left hand side of your screen and type their screen name in as the recipient and send a message, when you log in the system will let you know if you have any private messages.

You are right, we all worry about having to fight this battle again, but you will see that there are some really strong, brave, Pink Warriors who post on this site who are truly inspirational.

Glad you found us,

Jennifer

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Teresa,
I don't have the same type of CA you have but as far as the follow up, you should go with your gut. We know ourselves better than the docs. If you feel you need more, ask.
It's it great that you found this site. There is a wealth of support and knowledge here you will have a hard time finding anywhere else.
All the best,
Cindy

gami43
Posts: 281
Joined: Jul 2011

Thanks ladies. I appreciate your replies and welcome! I'm so glad to have found you and this site. I did, with your help learn how to e-mail a private message. I guess I'll soon be on my way to "learning the ropes"
Thanks, Teresa

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

I think what happened was when you read the first or second response in that thread you then hit the reply button. If you want your message to be the last one on the bottom of the page you need to go all the way to the final post and then hit reply and leave your message. If you only read say the first three and hit the reply button on the third one, your message will then become message number four. Does that make sense?

As for your cancer, I am so glad you found us. I like you joined later in my cancer journey, but I can't believe how much I have learned about my cancer and my spirit since being here. Welcome pink sister... welcome.

Lorrie

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I would like to say hi and to welcome you also Teresa!

Sue :)

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I am tripple negative but don't seem to have the rare kind you are speaking of. I have done a lot of research on TNBC but if you are not the kind that can think of it in a clinical manner (factual, like it is not you suffering from it) it can be really scary. Some of the professional journals have update articles regarding some of these issues not just the larger issues involved in treatment. I read the articles because I figure that not all professionals have the time to keep up with the research. I want them to know I am on the ball and not just someone who can be overlooked.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I am not TNBC but I have a rarer form of lobular. Welcome to the group. We are a caring group of people, we laugh cry and have fun. You will find much support and someone usually has an answer!

poplolly's picture
poplolly
Posts: 346
Joined: Apr 2011

Hi Teresa. I have triple-negative, metaplastic breast cancer. I've had chemo and radiation. I am now on the "cancer recurrence" watch and it is driving me crazy. I know I'm over-reacting, but I haven't yet learned how to live with the idea that you have cancer and that once it's gone, it may come back. I am very glad to meet you.

Judy

Maya Madden
Posts: 1
Joined: Jul 2011

I too have been DX with matrix producing metaplastic carcinoma, Stage 1 grade 2. I have had lumpectomy and rexision and niple excision, and am now undergoing radiation. I have not found much info on this type of cancer. I did join a facebook group for metaplastic breast cancer, but have only fou d 2 others with matrix producing. My Doctors do not seem to diccuss much about this other than the usual course of treatment. I was surprised to learn that my onc won't wznt to see me for amother 4 months after 8I finish radiation. I am also triple negative, no node involvement. I would love to know what follow up you receive. I am being treated at UW Madison Hospital in WI. Thank you!

jklr
Posts: 3
Joined: Jul 2011

I ALSO WISH I HAD FOUND THIS SITE EARLIER. 2/22/11 WAS THE DAY I WAS TOLD THAT I HAVE CANCER. NOW I'M ON THE DOWN HILLSIDE OF CHEMO & STILL FEEL KIND OF LOST. WITH A MILLON + QUESTIONS. ALL OF THESE COMMENTS ARE REALLY GREAT THAT I'VE READ. VERY HELPFUL.

arkansasgirl's picture
arkansasgirl
Posts: 84
Joined: May 2009

Hi

If you are still on here - I was dx with triple negative and matrix producing carcinoma... And yes its very rare. Would love to talk with you. DX IN MARCH 2009  AND A RECURRENCE TO MY LEFT ADRENAL GLAND IN JUNE 2012.

Arkansasgirl

gami43
Posts: 281
Joined: Jul 2011

Arkansasgirl - sending private message.

disneyfan2008
Posts: 5385
Joined: Oct 2010

I too wish I found this site earlier...but better late then never right?

 

Denise

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