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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2008 at 3:44pm
Hi there sicknurse,
 
Welcome to the site. You will make many new friends here, and I know that you too will have much advice to give to the new gals just starting on this journey. 
 
My daughter Lori was dx TNBC June, 2007, and these women helped me help Lori through all of her treatments.
 
Pam (trip2) posts new articles/news daily here on the site, and perhaps there will be something of interest to you there. The forum is "TNBC News, Resources and Tips" forum. There are also Chemo and Rad tips and after sugery tips on that forum and they are on the last page. If you have a chance to read them and there are any that you would like to add, that are not already there, please let me know and I will add them.
 
I wish you would have found us sooner, and possibly you could have had more support during your treatments. If you look at the bottom of my post you will see her stats.
 
Lori teaches second grade, but she is also a nurse. We live in Altoona, PA and may I ask where you live?
 
Please post anytime and give these gals any advice you can.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sicknurse Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2008 at 4:03pm
Hi, Nancy! Thanks for welcoming me. I live in Fresno, California. How old was Lori when she was diagnosed? How is she doing now? Just from viewing the site, seems like more women under 40 are triple negative. I wish I found the site sooner too, just so I could've been more informed about this type of cancer and know what's out there for us. I've pretty much completed my journey as far as treatment and look forward to my 2nd chance at life. I believe that having a faith in God has helped me through this battle so far as well as the continued love and support of all my friends and family. Staying positive helps too! I will try and share my experience so far with others starting or even continuing their journey. I'm sure I'll learn a few things myself!

Edited by sicknurse - Oct 28 2008 at 5:13pm
sicknurse
dx: 12/07 Left breast St.II,TNBC,BRCA neg
1/08-5/08 ACT chemo
7/28/08 Lumpectomy,3 nodes - NO CANCER!
9/08-10/08 Radiation
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2008 at 4:47pm
sicknurse,
 
Lori was 45 when dx last June, 2007. She is doing well, and I beleive that she did well through chemo and rads due to her excellent physical condition before dx. She runs, walks or bikes daily and works out at least 3 times a week. Has been doing this for over 25 years now. Never smoked, drank...not even coffee. Yeah! The perfect candidate for cancer! NOT!!!
 
Yesterday she took her son for swimming practice at 5:30 am, and then worked out at the gym before getting ready to go to school. Are you a nurse?
 
Lori knows a young gal in her early 30's, who was dx while pregnant, but apparently she is not TNBC. I am going to suggest that this gal have the FISH test. That young....?
 
Lori's faith in G-d is very strong. She also had a very supportive and loving family and some friends who really rallied around her. Others.....well...they are not friends anymore. I think that happens to everyone dx with cancer.
 
This site is unlike any other bc site that you will find. Someone is always asking questions...and Pam....is always finding the answer....if there is one!Wink All the gals are constantly looking to help each other.
 
Staying positive helps to keep you happy, but as Lance Armstrong said that doesn't keep you from getting cancer, or beating it. Lori has a very positive outlook and is now trying to help others who have been dx. That's called..."paying it forward". That is what you are now doing by being here for the new gals.
 
Hugs,
Nancy 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2008 at 2:43pm
Hi there sicknurse and a warm welcome to you.Smile
 
Congratulations on being cancer-free and by now you will be done with your rads!Clap  That is fabulous.
 
I would like to echo Nancy and hope you will stay around to encourage and support those just beginning their journey.  This is a fantastic forum with many supportavive and loving women and caregivers.  It is like my extended family!!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sicknurse Quote  Post ReplyReply Direct Link To This Post Posted: Oct 30 2008 at 9:54pm
Hi, all!
Just joining in now. Thanks, Pam for welcoming me, too. Just wanted to share a couple of websites with everyone. Since so many of us TNBCers are under the age of 40, check out www.youngsurvival.org. It's another bc website for those diagnosed under the age of 40. Lots of info there, too. Also, I belong to a support group called the Sisterhood of Survivors or SOS here in Fresno. The website is www.sisterhoodofsurvivors.org. It's a support group of women of all ages and quite a few are survivors of 20 years or more! Never give up hope! What's nice is that we have a program where we put together these wonderful totes filled with bc info and "girly goodies" (lotions, chapstik, nail files, etc) and a survivor comes out to your house and delivers it to those that are newly diagnosed! I heard they've even mailed them out to Florida and other places! These women are wonderful! Our group is still about a year new, but we are very active. We had a booth and walked as a team in our Komen Race for the Cure last Saturday. We had a tote on display and many came to visit us. You can actually request a tote online. Remember, we all become survivors the day we are diagnosed!
Live, laugh, love,
sicknurse Hug
sicknurse
dx: 12/07 Left breast St.II,TNBC,BRCA neg
1/08-5/08 ACT chemo
7/28/08 Lumpectomy,3 nodes - NO CANCER!
9/08-10/08 Radiation
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Post Options Post Options   Thanks (0) Thanks(0)   Quote booboo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 2:00am

Hey everyone,

It has certainly been a long time since I posted but I read all the time on the site.  I have a quick question. I have had my second of 4 chemo treatments and doing well enough. Bad bone pain, bad taste in my mouth, lots of fatigue. I have a very sensitive mouth with certain foods, carbonated drinks, toothpaste and mouth wash...but I have mouth sores and tongue sores as well...is there something easy to do to ease the discomfort of the mouth/tongue sores other than mouth wash that burns terribly?  I am also doing the clinical research study with Avastin and do get the Avastin with my chemo treatments which will continue on after my fourth and final treatment of Adriamycin and Cytoxin. If anyone is doing the clinical research with Avastin, have you had any side affects with that alone? I am wondering what to expect with just the Avastin treatment?  Thanks in advance for any word of wisdom!
Hugs to all,
Barb
(booboo)
Fondly,
Barb
Age: 48, dx 8/08 (at 46) trip neg , dbl mast 8/08 w/recon, stage 2, 2 cm, grade 3, 14 nodes (-), chemo 9/08-12-08 (Adriamycin/Cytoxin/Avastin)x4, Avastin trial cont.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote booboo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 2:02am
Sorry I wrote so big on the last post....did not mean to!!!!
 
Barb
Booboo
Fondly,
Barb
Age: 48, dx 8/08 (at 46) trip neg , dbl mast 8/08 w/recon, stage 2, 2 cm, grade 3, 14 nodes (-), chemo 9/08-12-08 (Adriamycin/Cytoxin/Avastin)x4, Avastin trial cont.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SteadyState Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 3:54am
Barb, I have been using a mouth wash I found at Target in the Pharmacy area. It is called Biotene. It is specifically for dry mouth and has bio-active enzymes that help restore your saliva's natural defense system It seems to be working for me. - Hope this helps

SteadyState
SteadyState
------------
Stage 3 TNBC dx 4/06,
Chemo ACT 24 weekly tx, mast 11/07, 8 weeks rads 1/08,
dx mets 8/08 tx , Gemcitabine/Carboplatin
tx, 10/08 Abraxane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DeeDee Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 4:41pm
Barb -- I used the Biotene mouthwash and they also have a toothpaste which I used. I think that I also found them at Target. I got a lot of helpful ideas from a friend who had been through chemo. Although, I have to say that one of her "comfort foods" that she ate during the weeks of chemo -- I tried, and may never eat again.    We are all so different.   Good luck.
dx Nov.7, 2007
Lumpectomy Nov 15, 2007
1.05cm. stage 1 grade 2
sentinel lymph nodes neg.
chemo AC 4 treatments
30 rads ended April 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 4:50pm
Hey Barb,
 
It has been a while since you posted.Wink
 
Did you ever get a script from your onc for the "Magic Mouthwash"? They say it works wonders. Lori had emailed Sandra Jean to get that and she said it was a miracle.
 
The other gals who have had the Avastin will have to respond to that. So good to hear from youSmile
 
Love and hugs,
Nancy
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Colleen2008 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 5:41pm

Hi everyone,

I haven't posted for a while and have good news, but first.... Barb ask your oncologist for the mouthwash, it works.  Mine called it magic swizzle.  It is Lidicaine, Benadryl and Malox your pharmacist will mix it for you and it is very inexpensive. I am in the B-40 Clinicial Trial.  The only side effects I have from the Avastin is a runny nose and watery eyes.  I wasn't prepared for the fatigue.  I learned to tell the onco my side effects even if minor.  There is something for every symptom except maybe the fatigue.  As for the fatigue I couldn't figure out what was wrong with me until I finally read in a book....you can be sitting in a chair with the remote on your lap and not have the energy to pick it up to change the channel.  That was exactly how I felt.
 
Now for the good news---I finished the chemo Aug 22, surgery Sept 22.  Lumpectomy plus reduction.  Pathology report states no residual cancer. It's gone all of it and my tumor was 4cm. Stage 3a, Grade 3. Yipeeeee!!!!!!!!!!!  I still need the radiation and another 10 cycles of Avastin.  My oncologist is so happy and excited.  He said I had massive doses of chemo and something worked.  My prognosis wasn't that great back in February, but he says it is so much better now.  He wonders whether it was the Taxotere, GEMZAR, AC, or Avastin or the combination of all of them, but something worked.  He told me he had just gotten another triple negative and hoped my results would help her.  I am having some minor problems, the left breast that had the cancer had a staph infection 2 1/2 weeks out of surgery and the right had some fat necrosis. I knew there was risk of that happenning.  My dear husband has to pack "the girls" 2x a day with guaze.  I have to wait until I'm healed to start radiation and the Avastin.  Hopefully soon. I finally went back to work this week after being off since Feb.
 
Hugs,
Colleen
 
 
Stg3aIDC Gd3 TN 4cm DX2/08 4cyl Taxotere GEMZAR Avastin every 21 days GEMZAR also day8 4 cycles AC Avastin 21 days lumpectomy&bilreduction 50 rads over 25 days+8 booster Avastin 21 days until6/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2008 at 9:17pm

Thank you for sharing that wonderful news...the reason your oncologist was so excited was because of the CPR (complete pathologic response) - the chemo just killed those cancer cells!

I am sending gentle cyber hugs because I am sure you are still painful.

I bet your oncologist was feeling pretty darn good about himself - and he should be for treating you so aggressively. No sling shot for him...the man got out the big guns.
 
Hooray for you.
 
Love,
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2008 at 8:56am
Congratulations Colleen that is wonderful news!Clap
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote prissy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2008 at 5:37pm
BOOBOO,
I HAD THE BAD BONE PAIN AND THE SAME DRUGS YOU DID: CYTOXIN/AVASTIN, TAXETERE, THEN ADRIMYCIN W/O AVASTIN, 8 CHEMOS EVERY 3 WEEKS. I HAD HAD HORRIBLE BONE PAIN AND MY DOCS KEPT SAYING THEY COULDN'T IMAGINE WHY. MAKE ME FEEL LIKE A REAL COMPLAINER.
HAD THE SORES, EXTRA STRENGTH BABY ORAL GEL HELPED SOME. AFTER MY 4TH CHEMO I GOT A HIGH FEVER, NEUTROPENIC AND GOT TO SPEND 12 DAYS IN THE HOSPITAL. THAT WAS THE WORST. THOUGHT I WOULD NOT MAKE IT.
BUT I DID. THEN HAD THE DBL MAST IN JUNE 08.  NEXT TIME I HAD THE AVASTIN ONLY INFUSION I HAD A TERRIBLE BONE PAIN REACTION SO THEY TOOK ME OFF THE STUDY.  I WAS DISAPPOINTED, BUT MY DOC ASSURED ME THAT I GOT THE MOST IMP. PART.  MY TUMOR WAS GONE WHEN I WENT IN FOR SURGERY!
HANG IN THERE GIRL--YOU WILLL MAKE IT THRU--HOPEFULLY THE WORST IS OVER
I GET RECONSTRUCTION THIS SUMMER WHILE I AM OUT OF SCHOOL(I TEACH HIGH SCHOOL)
SHOUT BACK IF I CAN BE OF MORE HELP.Smile

PRISSY
PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503
Remarried 7/11

LAST CHEM 5/08 DBL/MAS 6/08
2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lola37 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2008 at 5:39am
Hello everyone, I am excited to be able to read stories from other women who are going through the same thing as me. I am Lola, a 37yr old African American women, and I was diagnosed in 12/07 with breast cancer, stage 3.  My tumor was so large under my right arm that they immediately started my chemo, after the needle biopsy showed cancer. I had chemo until 06/08. Now my scans show a significant shrinkage, and I have finished chemo. I thought everything was "all good" and I could go back to my regular routines. To my surprise, it was surgery time. I put off even thinking about it all summer, and just a month ago, I went to seek a second opinion and this doctor informed me that I have TNBC.  I have two choices, a lumpectomy or bi-lateral mastectomy. I am very scared, I keep dreaming about the doctors cutting my boobs off and how I will look after reconstruction. And I also heard from other women that had a lumpectomy, they ended up having a mastectomy a few years later. So I am leaning more toward the mastectomy now versus later. What do you all think ?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Okie Girl Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2008 at 6:03am

Hi Lola,

I have been in your shoes and I know what you are feeling about Mastectomy.  My tumor was on the outside part of my left breast (about 2 o'clock position)  I had a bilateral mastectomy - my choice.  For me it was an easy choice because first of all my mother died from breast cancer and secondly, I know ME and I would worry or freak out every time I felt a lump, bump, twinge, etc. in my breasts if I had a lumpectomy.  My husband was very supportive and encouraged the mastectomy.  My thought was "I can live without boobs for a while"  I have completed my breast reconstruction with expanders and I'm having my implant exchange surgery in February. HOWEVER - I know tons of women who have done the lumpectomy and are doing great (no recurrence) and were fine with their decision.  It is a personal choice - one that you should discuss with your doctor and family.  Bottom line - it's your body and your life.  I will post under this a surgery decision evaluation that I received.  It may help you.  You are in my prayers!Big%20smile

 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lola37 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2008 at 6:16am
Thanks for responding. I feel the mastectomy will be the best for me. My husband and family are very supportive, so I know that I am blessed.  How long was it before you returned to normal activity after surgery? 
Lola M.
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THIS WAS GIVEN TO ME AS A GUIDE FOR SURGERY DECISION.  REMEMBER EVERYONE'S SITUATION IS DIFFERENT AND UNIQUE TO THEIR LIFESTYLE.
 
Choose either A or B in each pair of statements.
 
A  I would resent losing my breast.
B  I would accept losing my breast.
 
A  My breasts are very important as to how I feel about my looks
B  My breasts are not that imp. as to how I feel about myself
 
A  My goal is to preserve my body image if possible
B  My goal is to reduce my chances of local recurrence to lowest level
 
A  I don't want to lose my breast and wear prostheseis or have reconstr.
B  I would rather lose my breast to ensure best chance of cancer not returning to my breast
 
A  I would perform breast SE or go for clinical exams on remaining breast without increased anxiety
B  I would worry about the cancer coming back in my remaining breast tissue after lumpectomy
 
A  I am not a worrier, I would see my doctor as needed
B  I would worry about recurrence in my remaining breast tissue
 
A  I would agree to go to radiation therapy 5 days a week for up to 7 weeks to save my breast
B  I would rather not travel back and forth for radiation therapy
 
A  I don't mind going to radiation therapy for several weeks to keep my breast
B  I don't have time to keep going back.  I want this over.
 
A  To keep my breast, I would accept changes to my breast after radiation like, increased lumpiness, decrease in size
B  I would be anxious about monitoring a breast that had changes after radiation
 
A  The changes after radiation are minor compared to not having my breast
B  It would overwhelm me to feel and examine my breast after having cancer in it
 
A  I feel my breast is important to me for my sexuality and self esteem, without my breast I would feel less sexually attractive
B  My partner does not care if I have a breast or not - our relationship would not change if I lost my breast
 
A  I don't think I would feel sexy again without my breast
B  My mate would probably say "I didn't marry you for your breasts"
 
*ADD THE NUMBER OF A'S AND NUMBER OF  B'S YOU CHOSE.  MOSTLY A'S YOU ARE PROBABLY MORE INCLINED TO LUMPECTOMY.  MOSTLY B'S MASTECTOMY. 
THIS IS ONLY A GUIDE, NOT THE ANSWER AS TO YOUR INCLINATION TOWARD SURGICAL OPTIONS.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Okie Girl Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2008 at 6:42am
I was up walking around the hospital the night after my surgery.  My doctor is very avid about exercise.  You will have drain tubes hanging from under your arms for about a week to 10 days (they don't hurt, just annoying)  After the drain tubes come out you will feel like a new person.  It was probably about 2  to 3 weeks post surgery before I felt comfortable driving and doing all normal things.  You shouldn't lift anything too heavy (including children) until your doctor says ok.  Your doctor will probably recommend physical therapy or stretches to help with your range of motion.  I highly recommend this.  Excercises and stretching will get you back to normal faster.  I lead a fairly active life.  I walked daily (even with drain tubes in) and I do believe that helped me.  I'm fortunate that I didn't have to work outside the home during that time.  We have a business and I run the office from home.  But if you work in an office or a job that doesn't require too much physically, you will be back to work in no time. Your attitude is 99.9% of your healing.  Yes, it's weird at first to look at yourself without boobs.  But you soon get used to that like everything else that is new.  If you have a supportive husband and family you will do great! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2008 at 7:12am
Lola,
 
Welcome to the site. I wish you would have found us sooner, but now that you have, I want you to know that there are discussions every day on the site as to lumpectomy vs. mastectomy. The latest topic is ..."One year later", and it is on the TNBC TALK forum. Please be sure to read all the posts from that topic. Perhaps that will give you the information you need to make a more informed decision.
 
If there is any history of cancer in your family, you should also go for the BRCA genetic testing. This is a genetic mutation, which, if you have this is passed on to your children.
 
My daughter Lori who was dx TNBC, June, 2007 just recently had the test and she is BRCA negative. I want to direct you to the FORCE site, which I know will prove useful to you. The link to that is
 
The people on this site have a history of cancer in their families. They say that approximately 85% of women who are BRCA1+ are TNBC.
 
We are all concerned that the doctors are not telling the women they are TNBC before surgery and treatments, as this can alter the way they treat your bc.
 
We also have many article for you to read which are located on the forum..."TNBC News, Resources and Tips". I do not want to overwhelm you woth too much information, however, the gals on this site will tell you that there is no such thing as too much information. Knowledge is power, and power is what the TNBC Foundation site is all about.
 
You need to have your D levels checked also. That is very important. I will find those links for you.
 
Lori's stats are at the bottom of my post.
 
Many hugs Lola,
and we will be here for you every day...that's a promiseWink
Nancy
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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