I live in Frederick, Maryland!

Wendy2

 

I LIVE IN NORTHERN NY ALMOST TO THE CANADIAN BORDER AND IM INTERESTED IN A GROUP AS FAR AS I KNOW THERE ARE NO GROUUPS UP HERE

THANKS

GAYLE

 

 

Oklahoma

 

I work in Frederick, MD, at Frederick Community College where a BC support group is held the second Thursday of the month. It is lead by my supervisor who is a 4 year BC survivor, triple neg....call the Allied Health Department for more info.

 

Kathy

 

Beth Anne

I!m from South Tx. Living in Brownsville and Houston

Reyna.

I am in Phoenix.  I asked this several months ago because I too would like to get a local support group going for triple neg. I thought a city of this size I would have come across someone else.  I have come across many with bc but none with trip neg.

 

Send me a PM and see if we can meet up for lunch, coffee, whatever.

 

Nancy

Nancy,

YEA!  I AM SO EXCITED!!  I sent you a pm! 

 

Everyone!    This does works girls!  Good Luck in finding someone in your area.

 

Sandra

Katie

 

I'm in Austin and have been treated here in Austin.

 

I'm also here:  http://www.fightingmycancer.blogspot.com - www.fightingmycancer.blogspot.com

Happy July 4th!

 

I am not new to BC but new to this site.  I think its AWESOME and am very thankful to have found it.  Sometimes as a TN you feel very alone and scared that there isn't more research/info available.  At least I have found a bunch of new sisters to walk through this roadbump of life with.  Thank you all for your kind words and support you so freely give to anyone in need.  I hope to be a good addition to the group as well.   

 

Blessings to all,

Traci

I am not new to BC but new to this site.  I think its AWESOME and am very thankful to have found it.  Sometimes as a TN you feel very alone and scared that there isn't more research/info available.  At least I have found a bunch of new sisters to walk through this roadbump of life with.  Thank you all for your kind words and support you so freely give to anyone in need.  I hope to be a good addition to the group as well.   

 

p.s. I live in Clermont, FL just west of Orlando, the happiest place on earth! 

 

Blessings to all,

Traci

My permanent residence is in Brownsville,Tx. Howevwer, because of my husband job we are living in Katy,Tx. (5 min, from Katy Mills Outlets), like 40 min. before Houston.

Huges and Kisses !

Reyna

 

Welcome to the site

 

I am Nancy and my daughter is Lori (46) dx June 13, 2007. When were you dx? We have some ladies from Florida on the site.

 

We think this is an AWESOME site also!! I am sure that you too will have much to add to the questions of others. Nothing like "been there..done that" to help others just starting their journey.

 

Hugs,

Nancy

I'm from San Antonio, Texas and have lived here for 30 years.

 

Any others from here? I am scheduled for my 4th (and last) tx on Wednesday, July 9, PTL! No rads, thank goodness.

 

Genie

 

DX 3/11/08; TNBC, Stage 1, Grade 3, Lymph nodes negative, bi-lateral mastectomy 4/1/08; Tx- TC X 4.

Thanks for the warm welcome.  I was dx 5/25/07 and finished ALL treatment on 12/31/07!  Was certainly a good New Year's for me. 

 

Traci

 

It's good all treatments are finished and now you can recover and look forward to a much better year.

 

You have found a good place to be, this is a wonderful group of caring and supportive women.

 

Let us know how you are doing,

I'm your neighbor in Bethesda, MD.  I have a dear friend who also has TNBC and have heard of others in the area who have it -- we're an older group - mid-50's and are not considered "typical" for having this type of bc.  Would love to share info if you're interested - drugs, stage, coping, treatment facility, etc.   Paricia

 

Welcome to the site

 

Incredible women here and now you are one of them. I'm sure you will have many suugestions for the ladies just starting their journey.

 

I am Nancy and my daughter Lori was dx June 13,2007. Just had recon in June.

 

Hugs,

Nancy

 

Welcome to the site. We are also glad that you found us

 

There are so many wonderful women on this site. Some are just beginning their journey with bc, some are part way through and some have finished. At any stage in the journey, there are always questions, and once you find this site...they will be answered. Now that you are aboard, I am sure you too will be helping someone.

 

I am Nancy, and my daughter Lori was dx June 13, 2007. She finished all treatments...chemo and rads, in January.

 

Please post often, and check the forums, and I know you will find that you will become addicted to the site

 

Hugs,

Nancy

if you are still interested in getting group together or just meeting up I could use a few new friends.

 

 

Mirror*3

DX 9/2

IDC T3-N0-mX

Triple neg

Lumpectomy 9/15 - TBD - Treatment 1st onc appt this week.

 

I'm so bad at checking this site.

I'm interested in maybe having lunch or something - I'll come to Beth. You have more gals there interested?  Set it up and let me know - Love to share - my first onc. was in Beth.

Wendy

And Hi to you Paula, I have some great memories of visiting folks in Regina.

MyJourney - Vashon is such a beautiful island but then the whole state seems to be just throwing out all it's Fall beauty today!

Beth Ann - the company I wrk for is in Snohomish, small world. I just saw (I'm behind the times) that Paul Newman's Hole in the Wall Gang had bought last year the old Carnation Farm to be one of his retreats for seriously ill kids. Gonna miss that guy.

 

 

I am from Brooklyn, NY.  Anyone local?

 

By the way....Paula, you have been in remission since Feb 2004?  Awesome!

 

I am new to posting (although not new to this site).  I live in Gold Canyon, Arizona and am happy to see some ladies that live nearby here in the forum.

 

Would love to hear from you!

 

Diane

 

 

Seeing one's Onc always requires tummy butterflies but once we hear the good news it feels so good to walk out of there and let those butterflies go! 

 

Well the best part is that we are being watched so reckon we'll have to deal with those butterflies.  Maybe taking a friend along to help distract you might help?

 

Have you recently been diagnosed or have you finished treatments?

 

We'd love to hear your story.

 

This is a great group of support and love so I hope that you will feel comfortable.

 

If you have questions ask away and we'll try to help you.

 

I was diagnosed August 2007 with Stage 1 (1.4 cm), Grade 3 TNBC in my right breast.  I had a lumpectomy in September 2007 and completed Mammosite radiation in October 2007.  I then had six chemo treatments (3 FEC and 3 Taxotere) at three-week intervals, from November 2007 through the first part of February 2008.  In February 2008, I had some spotting (I am post menopausal) and went to my GYN, who discovered a cyst on my right ovary.  Because it did not go away, I was scheduled for surgery to remove both ovaries in June 2008.  I had a CA-125 test in May before the surgery which was normal.  During my surgery, endometriosis was discovered and I woke up with a complete hysterecomy.  My GYN told me that the cyst was an endometrioma and benign.  However, during the post-operative biopsy, a Stage 1a, 1.4 cm ovarian cancer was discovered in my right ovary.  It was totally encapsulated and had not spread.  I had a PET scan in August 2008 which was normal.  My one-year tests for my breast cancer were normal, although a small 6 mm seroma was discovered in my right breast at the site of the lumpectomy.  So I think I'm doing pretty good and feel that I have had two miracles to have both cancers discovered so early.

 

Cancer is a scary thing, but having loving friends and family, as well as support groups like this, has been great.  Bless you all!

 

Diane

 

I start my note taking atleast a month in advance of any questions I have for my Onc.  Only getting to see them occasionally we want to make the best of the 15 minutes they give us for the price! Ask about the results of your bloodwork if they did that the week before and ask for a copy for your records.  I sometimes forget that one, grr.

 

I also run copies of any scans I've previously had since last check-up in case he didn't get his copy.  He usually doesn't as I get scans, tests in another town and they don't pay attention when I tell them to mail the results to my Onc!

 

I want to know from him what his follow-up plan is for me.  Sometimes atleast with my Onc I feel better renewing my info quickly since he is overloaded in our clinic.  Triple neg, brca 1+, heavy family history, bc twice, what will you do to watch me, any plans?  How often will you see the Onc?

 

Gather up your notes during the week before, yes I write on sticky notes so usually have several, lol, and make a single note so you don't scare the poor guy to death and also take any copies of anything newsworthy you've seen and want to ask about.

 

Any other tips anyone?

 

Good luck Eileen!

 It is great that your 1 year test were good. I hope to follow in your footsteps. Congtratulations and continues health to you. Eileen

P.S. I am leaving my husband home this time because he thinks this is a social visit and doesn't really want to hear the questions I want answers to!

 

 

Thank heavens the cancers were found early, what a blessing that was.

 

That is so good to hear that you are doing well after what must have been quite a traumatic year.  And you are so right, loving family, friends and a good support group make alot of difference.

 

Yes you can leave hubby at home, mine doesn't go now that I am thru w/treatments.

 

You should ask your Onc if she has any scans planned for you.  Write that down.  Some of them don't scan on a regular basis but wait until you come in with what might be a sign of something serious.

 

Your talking sessions should include a physical check-up by your Onc also.

 

Specific bloodwork I am not sure of, someone else might be able to help here.  I am just tested for what they require.  It might also depend on your age and history too so you might write that one down and let the doc answer it.

 

We feel like we are sorta hanging out there with no more "scan" help but "they" claim too many are not cost effecient and cause stress for patients.

 

On recurrence I don't think they can know.  Make sure she examines you, you stay vigilant at home and call her office with anything that concerns you or symptoms that linger "they" say 2 weeks.

 

 

I did get a CT/Bone scan in July this and he is scheduling me a PET in January.  He didn't tell me this, I learned about it after stepping out of the exam room via the nurse.

 

What he did tell me was to get off the internet, right like I'm gonna do that!  What a beanbrain!

 

When I was finished with treatments in 03 I did not have any scans, just mammo's and check-ups.

 

Your BC dx was really similar to mine. We had different chemo and radiation though. I wanted to ask you how they found the seroma in your breast? Did it make your breast hurt? Do they just let it absorb back into the body or did they drain it?

 

I`m so glad you are doing well!! It sounds like you had top notch tx !

 

 Terri

 

 Everyone gave you good advice. I always write down all my questions and make them answer them all until I understand everything.

 

 Pam is right if you can bring a second set of ears to catch what you might miss and for loving support.

 

Good luck and

 

Terri

 

Yes let us know.  If there is any question that comes across your mind do not hesitate to ask your Onc, it is their JOB.

 

Of course I usually walk out with a question I wish I had asked or a comment I wish I had made but reckon that is human nature.

 

Hugs

 

My seroma was found during my mammogram/ultrasound.  My radiation onc said it was nothing and "I'll see you in six months."  My regular onc said, "It's nothing but let's do an MRI."  I'm still waiting to hear about the MRI.  Because it's not diagnostic, my insurance might not pay for it.  The seroma doesn't bother me at all.  In fact, I was surprised it was even there. My onc doesn't want to drain it, because (in his words) "it would mess up your scans for some months after it is done." Afterwards, I read up on seromas and apparently they are very common after breast surgery, and particularly common in women who have had the Mammosite radiation.  I'm hoping the little guy will get reabsorbed and not bother me in the future.  I've heard that some women have chronic problems with seromas.

Hi Diane,

 

Thanks for all the info!  I am asking because I had a mammo/ultrasound on monday & it showed something near my sx site. My breast has been hurting there for a couple of months. Going for mri on thurs and will discuss findings with onc surgeon next tues. When I saw your post I thought maybe that could be what I have!! Wishful thinking!

 

Terri

 

I guess seromas are pretty common things to have after all we've been through.  The way my onc explained it, that area has been irradiated and a seroma is just like a blister when you touch something hot, filling up with fluid.  And because there's this wonderful empty space where your lump used to be, your body just naturally wants to fill it with something.

 

Has anyone else had a seroma?  Did you have symptoms (pain, swelling) if you did?

 

I'll send up a prayer for you, Terri and a big Zen Hug (which are hugs I would give if I were there).

 

Diane

Would anyone else in northern California like to get a group together?

 

I was hoping you would post! How was the Rhine and did you eat those delicious brotchens with gobs of butter? Germany has fabulous treatments for the gals for after chemo!

Hugs,

Nancy

 

I live in Key Largo, also in South Florida.  I hope this site brings you much comfort and reassurance.

 

 

I am from Melbourne, Australia

 

P.S not that computer savy... heeeelp whats the popup control thing

at the start of my post LOL ???

    I recently was at the Komen walk in Houston,Texas.My grand daughter is the team captain.I have to tell you a little about my grand daughter.She is around 24 or 25 ,to many to remember the exact date,But late last year she found a lump in her breast and it was not cancer.Thank the lord.Sne was asked if she would like for it to stay or be removed and she chose to have it removed(Another reason that I am so proud of her)It scared her so badly that she decided that it was important for her to start this group.

   My question is this?on our t shirts,since she is not familiar with Triple Negative ,nor does she know much about it.When I was there at the walk,I did not see any reference to the subtype Triple Negative.

   Since you have a wonderful little group called the Zeltoids ,and you have been diagnosed as triple negative ,do they in any way give reccognision to the subtype triple negative?When I went I saw nothing representing the different subtypes.Is there some sort of ruling againt that by the Komen foundation?

    I and some of the other ladies feel very stongly that this subtype needs reccognision .It is wonderful what you are doing for the BC research to help raise monies.Please let us know if there is a rule against this for the Komen walk foundation.

    

    Happy you have found us ,and Lots and Lots Of HuGGGSSSS    Billie 

 

becca

 

I am from the Boston area.  I had my treatment at Dana Farber.

    The first thing that I need to do that I did not do on my last post to you, is to congradulate you on your 2 1/2 years from diagnosis.All of us get so excited to read that any of you beautiful ladies stay cancer free from the original diagnosis.And yes, you definately belong with the triple negative ladies,if on your path report where the 3 receptors are listed,if to the side of them is a negative.That is I am sure where the name for this subtype came from.So congrats Zellie.Just wonderful news.

    What I meant about the recognision for triple negative  is this.No one that I ask has even heard of triple negative including my primary care dr. and even the lady who did my mammogram.It could be due to the fact that the name triple negative was just recently given to it.I do not know what it was originally called.

    When I was at the Komen walk(30thousand strong in Houston,Texas)I did not see one t shirt that had on it triple negative,but I also did not see any other subtypes on any ones t shirt.So,I was wondering if there was some rule for the Komen walks, that stated that no individual sub types can be (can't think  of a specific word)seperated from other Breast Cancers.I know that my grand daughter designed their cute little catchy saying t shirt.So I was wondering if groups of ladies with the diagnosis of triple negative could get together ,specifying on their t shirts that they are walking for triple negative Breast Cancer.Triple negative sells their own t shirts with the 3 pink ribbons.The triple negative women sometimes talk about the fact that they do not seem to fit in to the Breast cancer group meetings that some women have started.Lets face it,triple negative,and its treatment is vary different .So we need to try to get the information out there.It is to my understanding that even if they find something like tomaxafin to treat triple negative,it is still about 5 years out there before treatment begins.

      So again congradulations on your 2 1/2 years out from treatment.Lots and Lots of Hugggggsssss     Billie

 

Welcome to the site. Why don't you tell us a little bit about yourself. The gals here are a very welcoming and  caring group of gals. I am Nancy and my daughter Lori was dx TNBC June of 2007. She is doing well, and was finished with all her treatments in January.

 

We look forward to hearing from you every day!

 

Hugs,

Nancy

 

Thank you for sharing your wonderful story....many starting treatment will hope for your experience.

 

Please come here and read the different posts and possibly if you have some time cast your vote in the polls.

 

Cyber hugs and a warm welcome.

 

Connie