New to triple negative

CaNatalie

Hi everyone,

I am 27 years old and was just dx with IDC triple negative, my tumor is 2.1 cm and grade 2. My husband and I were getting ready to start our family, we had just bought our first house...this was not the news we were expecting. So much of the information on triple negative out there can be depressing. I found this forum for us triple negatives and found so much comfort in not being alone. I try to take one day at a time, but that is so much easier said than done! I feel like I am on a horrible roller coaster that I cannot get off of. My bone scan came back clean but my CT showed two small lesions on my lungs. They said many (non cancer) people have these so it could be nothing, but because of my dx I have pet scan scheduled for Monday. I am so scared of met.

I am glad I found this site and thank all the ladies for sharing, it helps to read others stories.

Natalie

joykeeperorg

Hi Natalie my name is Chantal. Im 23 yrs old, 3.5 cm tumor, 4 out of the 34 nodes were positive, negative margins on breast tissue, and going thru dose dense AC & T.  Im also in the triple negavtive club. I love this site it helps a lot because you can find people who can relate to you. I havent had at CT yet so im nervous about that. Everything will be okay.

CaNatalie

Hi Chantal. Thank you so much for replying. When did you get dx? Did you have surgery yet? Sorry for all the questions. I am just so curious to read how others are doing with similar situations and how they cope. That is great to hear they have clean margins. I hope your CT goes well, I will be sending you lots of warm thoughts and prayers.

Take care,

Natalie

CaNatalie

P.S. Here is my direct email should you ever want to talk:

nrw8680@yahoo.com



Natalie

CalGal

Hi Natalie & Chantal -

Another trip neg here, and although quite a bit older than both of you, I was young enough to be a 1st time newlywed (4 mos) wanting kids when I was dx'd in 9/04.

As one who not only had to fight bc, but also my HMO, I would strongly encourage two things that will help you make better decisions:

1) BRCA test (for those who are dx'd with bc younger); and

2) CT scan.

My tumor was 2 cm on the invasive side (I also had DCIS on the other side).  I had bi-lat lumpectomies and borderline for chemo, I passed on it when my SNB came back clear (since I wanted kids and chemo can put you in temporary chemopause or permanent menopause).  Although, the younger you are, the less likely for that ...  Look into your options!   Among others, these options include fertilizing eggs, hormones to put you into menopause BEFORE chemo (they think this protects your ovaries), etc.

One thing I was never told is that bc can spread thru the blood, not just the lymph nodes.  So, I had a false sense of security when my SNB was all clear.  I asked for a MRI, but was denied.  I asked for a CT scan, but was denied ... I also asked to see my post-lumpectomy mamm's ... and when I pushed, they were lost.  As I suspected, they were misread and had showed a lump ... so it wasn't found until I found it myself, 2 mos later.

Fortunately, I was able to change insurance and now have a PPO! 

Hope for the best, but do your own research! 

Unfortunately, I'm positive for the BRCA1 mutation (only 5-10% of all bc is due to BRCA).  However, of BRCA1's, 80% are trip neg.  Note, the percentages do NOT go the other way.

Two other websites you might find helpful are www.tnbc.foundation.org and the Young Survival Coalition.

Take Care,

CalGal 

CaNatalie

Hi CalGal,

I take it your a California girl like myself? Thanks for the info. I am awaiting my genetic testing. The genetic counselors think that there is a 80-90% chance I will be BRCA1.  I am also in the process of harvesting my eggs. I will be finished just in time to start my first chemo (Carboplatinum and Taxotere). It sounds like you had some uphill battle with your insurance and wrong info, yuck to an already yucky situation! Thanks for sharing your tips, I feel so less alone.

Natalie

CalGal

Hi Natalie -

Yes, I'm a CA girl like you!   Born in the SF Bay Area and I live in LA now.  If you're in LA (I'd be curious as to where you're being treated) or if you have more personal questions, you can pm me.

Good for you that you're harvesting eggs! 

I also did Carbo & Taxotere (after dose dense AC).  Let me mention this up front ... I did NOT have any swelling (fluid retention) until after I flew cross-country.  If you're going to do any flying while on this combo, I highly rec'd a prescribed diuretic and special compression stockings from your pharmacy.

If you turn out positive for BRCA1, FORCE (www.facingourrisk.org) is a great site.  

I've been quite pleased since I switched to a PPO ...  

Best wishes,

CalGal 

suzyb855

Hi Ladies

I just found out I'm a member of the triple negative club.  I had a modified radical mastectomy of my left breast on Aug 20.  My Sentinal node was the only one out of 11 to test positive.  My margins were clear.  the tumor was 3.2cm and a grade 3 I'm a stage IIB.  My chemo will start Oct. 2

Thank God for this forum.  this is the only  positive stuff I have read since I got the news last Thursday!  Everything I've read about triple negative is so scary.

HollyHopes

Hello Women of Courage - I'm a triple neg (51yrs old).  Got through the lumpectomy, dose dense AC/T and 31 rads.  Feeling great, back at work full-time and also in Los Angeles.

Let me know if I can help in anyway....

CaNatalie

Hi Suzy and Holly,

Thanks for the response. It is so encouraging to be around other ladies with similar challenges and concerns. This forum is such a blessing. I received my pet results today and it came back clean. I felt like I could finally breath a little easier. I have my lymph biopsy this Friday. I have been reading that some people get AC/T while others start with Carbo/Tax, does anyone know the difference or if one way has been proven to be more effective?

Thanks for sharing.

Take Care,

Natalie

Renairis

Hi Natalie

I agree wih you that this thread offers so much support. When I started reading more about triple negative I felt it was a Godsend that I found this site. I searched google on triple negative and joined.

I appreciate all the information and support.I am triple negative brca 1 positive and have just completed 8 rounds of taxol carboplain and avastin.The chemo has done wonders even though I am stage 4 and the cancer spread to the lngs and chest wall. I am so much better now. It  does take time to recuperate from 8 rounds of chemo but the end results are well worth it!

The meds today are very promising and the women on this site have really given me such useful information and support, so I am gald you have found this very special site, where you truly aren't alone!

Rena

Traci-----TripNeg

Hi Natalie, Chantel, Suzy....

I am so sorry that you guys have been dx with this awful disease at such a young age. Gawd..................that just makes me so mad.

My sister was 29 when she was dx, I was 40.

I am glad though that you found this site. I can't tell you what it has done for me. Having said that, this site is not for profit. If anyone can, please donate to keep it up and running.

When you go to your appointments, take a pen and paper. Write down questions that you have. I believe in my heart that some of the women on this site know more than most doctors do. And combined, forget about it!!!

Everything.......you are about to face has been done by someone on this board. Keep coming back for support.

Hugs, Traci

Cherlilly

Just diagnosed too.  It is so good to be in good company with all of you.  I had my lumpectomy and SNB on August 28th.  Will be meeting with my oncologist next week to get chemo plan in action and then will be following up with radiation.  A long road ahead, but ready for the fight!!!!!!!  I am a 51 yr. old grandma who loves my family so much and as well, just feel for the younger ones on here.  Bless your hearts! 

Natalie......you can do this!  We are in this together!  Think good thoughts and so many have posted such wonderful things above.  I hope it has encouraged you.

Cheryl

joannnc

To all my triple negative sisters:

The following is a copy of a post that I wrote on Jan. 1, 2004.  I want you all to know that I am now 4 1/2 years cancer free.  Logs of Hugs and Warm Wishes to you all. 

 *******

HAPPY NEW YEAR. My name is JoAnn. I was DX on 3/17/03 with IDC. 3.5 centimeter tumor at the 10:00 position in the right breast.
ER negative, PR negative, Her2/Neu negative. Grade 3. Age at diagnosis: 54. No family history. Married with no children.

Treatment: 8 treatments of dose dense chemo every other week starting on March 28. 4 AC and 4 taxol.

Tumor shrank by about 50%.

August 8 - had lumpectomy and axillary node disection. Clear Margins and 1/22 nodes microscopically positive.

September - November - 31 treatments of radiation including 8 boosts.

I am happy to be alive and feeling better every day. Go for first follow up visit the end of this month.

___________________________________

Cherlilly

JoAnnc,

Congratulations on being cancer free for 41/2  years!  Love to hear the successes! 

So, did it just come back again and you are doing radiation right now through November??

Cheryl

joannnc

Thanks for asking, Cheryl.  No I finished all treatment in November, 2003.  What I posted I had written on Jan. 1, 2004.  I wrote my treatment history.  I was going through radiation four years ago at this time.  I am fine now. 

JoAnn 

imstillstandin

Hi natalie and everyone.

i am new to this board but triple negative 33 and found out i had breast cancer 3 months after my father passed away! I didnt want to take any chances i had bilateral double masectomy 3.5 was the tumor size no nodes THANK GOD!!! now i am in process of chemotherapy..A C T but individually so its 12x equals 6 months.. my oncologist wanted me to get individual cocktails as he monitors my blood ct .. I am exhausted mentally and physically!!

although they said the surgery got the whole thing since i had both breasts removed.. before surgery i had a bone scan all clear and ct skan which LIKE U NATALIE SHOWED 2 SMALL LESIONS IN THE LUNG.. THE ONCOLOGIST AND BREAST DR ASSURE ME ITS SCAR TISSUE (FIRST TIME I HAD A CT SKAN) AND SEEM MORE SURE AS  NO LYMPH INVOLVEMENT  I WANT TO BE positive

imstillstandin

oops sorry didnt finish my msg.. anyway I WANT to be optimistic that its scar tissue on lung.. but scared.. i lost my mom at 14 and recently my dad (march of this yr) i have amazing friends.. but i can really use some good news about the lung lesion... heard its somewhat normal to have them maybe i had bronchitis as a kid etc?? anyway natalie i identify with your story and want to know if u got the results ? did they think the lesions were cancerous.. Does anyone know how it affects prognosis.. I am stage 2 by the way invasive ductal..i am thankful to have found this board.. have not done any support groups!! my prayers are with u all... please if anyone has any info let me know

carrie from ny )

CaNatalie

Hi ladies,

Everytime I come on here my heart feels a little lighter. Thank you for sharing your own progress (yeah JoannC for 4 1/2 years) and support. Lately my life just seem like a big whirl wind. CARRIE- my pet came back normal, so nothing showed in my lungs. I have a friend who is 31 and nine months into this process. While she is not triple negative, she to had something show up on her lungs with the CT. After chemo a second CT showed they were exactly the same size, thus unrelated to her cancer. As a precautionary measure they will continue to monitor mine on later CT's. I know how un-nerving this can be. My MD's also assure me it is probably just scar tissue and not related. The radiologist even came out to talk to me because I was so upset. He said A LOT of people have similar lesions on their lungs and that it most likely nothing, just because of our dx it becomes "suspicious". How did your bilateral go? Mine will be in January. Any advice? I start chemo Oct 15, a little nervous but also excited to kill those nasty cancer cells! In the mean time I am getting nightly injections of fertility meds to harvest my eggs in two weeks, so my tummy is sore. But those little embryos will keep me focused later when it gets tough!

Thanks again everyone for your responses. Words cannot express my gratitude for you all and this sight.

Take care,

Natalie

susieloutoo

Hi! I am triple Negative too...still trying to understand it. I am 37, DX 4/11/07 Stage 2 grade 3 - Harvested my eggs 5/6/07 (my 12th wedding anniversary) 4 AC 4 TX and will have Bilateral Mast 10/16/07. I was invlved in a couple atricles about BC and egg harvesting - take a look 

http://www.iparenting.com/channels/news/index.php?newsid=4569&channel=1

http://www.suntimes.com/lifestyles/health/391814,CST-NWS-contro18.article

Take Care all

Susielou

CaNatalie

Hi all,

Susie-thanks for sharing those articles! They were very informative and that is very cool that you could help educate other women like that. It sounds like you are about five months ahead of me in this. Like you, I will start my chemo followed by bilateral mast in January. Not the way I imagined starting off the new year, but now I am learning to just appreciate being able to celebrate the things I had taken for granted prior. What choices have you made on your bilateral? There are so many choices, it can be overwhelming.

Take care,

Natalie

imstillstandin

natalie my bilateral was really fine as i was unconscious the whole time,, i am glad to hear your pet scan was clear... u can always email me at swcany@aol.com

today i took and got results of ctskan.. one lung nodule shrank but one mm and but one came up on right side of lung .. doesnt look like it was there before... i am not sure if this is normal or cancer i am freaking out.. dr said it looks like scar tissue but they are all cm too small to biopsy... maybe i should get a PET skan.. noone mentioned this to me??? does anyone  know if scar just shows up on lungs... all my lymph nodes came back clear i know it can also travel through blood so i am really nervous re;; lungs .. dr said i will follow up in 3 more months on lungs.. dont know how to learn to live waiting pd.. any similar stories info would help thanks so much

Carrie

mat64

My wife is 40 and has been diagnosed with "triple Negative" stage 2b, 5cm tumor.  She has completed 4/6 chemo treatments but tumor has not shrunk.  She has a reddish/purplish color on her affected breast around the nipple and on the side.  Doctor has no idea what is causing this (so he says).  Has anyone had this type of side effect from the chemo or from the "triple negative" cancer? 

watergirl

mat64,

I hope the doctors are going to change the type of chemo (or do surgery) soon if the tumor doesn't strink with the next dosage at the latest.  A good combo to request if she hasn't already had it is the Carboplatinum and Taxotere mentioned in earlier posts.  As for the red/purple color on your wife's breast there are probably lots of benign things it can be, but for peace of mind you might want to rule out skin mets or IBC.  Ask your doctor to do  a biopsy.  If he refuses to, its time to visit another doctor (in my opinion).

If your not going to, or have not had a second opinion at a large research hospital with a breast center it might be a good idea to do this too.

My best wishes to you both.

joykeeperorg

Sorry it has taken me so long to respond Natalie Im in the air force and just moved to Texas. I have had surgery. I was dx on Aug 2 2007. I am doing well just had chemo last week. Im on a dose dense treatment. If you have any question or wanna email me my email address crc0214@yahoo.com take care!

mat64

Watergirl,

Thanks for the reply.  My wife's oncologist has now stated that the chemo is not working (TAC once every three weeks). He feels that her tumors are becoming more dense.  We are meeting with the breast surgeon on 10/10 to see if he can remove the tumors.  In the beginning, the doctors stated that they did not want to do the surgery first because of the size of the tumors.....Maybe they were wrong?? The other option is to change the chemo treatment to a chemo pill (not sure of the name of the drug).  I guess we will find out what can be done as far as surgery goes on Wednesday. 

Shirlann

Hi Mat, if you feel that things are not going well, get a second opinion.  This is not that hard.  You can collect your/her original slides, original mammo's, copies of her records.  Contact Sloan-Kettering or Dana Farber, one of the super duper cancer centers.  Check prices, FedEx the whole lot to them, and they will do a new path report with treatment recommendations.  If everybody agrees, great, if not, for not a lot of money, you will have the best advice available on the planet.

Hugs, Shirlann

(I am a 9 year Triple Negative survivor)

sriley2603

I am a triple negative survivor, two and a half years out of treatment.  I had lumpectomy, mastectomy and dose dense chemo.  I keep my fingers crossed that I stay in remission for a long time.

Meggy

I just want to mention that there is something called inflamatory breast cancer (IBC) that can turn the breast red or purple.  I have no idea if it is common to be triple negative and have IBC.  Just want to offer that information just in case.  Google it and you will have a lot to read...try not to get too stressed but check it out.

Robyn1982

Hello ladies

Please have a look at my diagnoses  and let me know if anyone is in a similar boat and my age

Diagnosed 25 March 2009, locally advanced infiltrating ductal carcinoma, main tumor 6cm, stage 3B, grade 3 triple negative.

This news was worst birthday present when I received it on my 27th birthday in March this year.  I am 27 with no family history of breast cancer.  I am caucasian and have the smallest breasts out of all the women in my family...they will both be removed shortly after chemo.  Have been on 5 cycles of AC and am on my 2nd of 4 Taxol cycles.  The first two cycles of chemo worked amazingly, shrunk my main tumor from 6cm to 1cm, but ever since then through two types of chemo it seems to be growing back.  In my opinion it's about 3cm now.  Another strange things is that the chemo hasn't affected my menstruation in any way. 

Please let me know if any of you can relate to my situation.

Stay strong. 

From another triple negative.

Great community site!

Robyn1982

Hello ladies

Please have a look at my diagnoses  and let me know if anyone is in a similar boat and my age

Diagnosed 25 March 2009, locally advanced infiltrating ductal carcinoma, main tumor 6cm, stage 3B, grade 3 triple negative.

This news was worst birthday present when I received it on my 27th birthday in March this year.  I am 27 with no family history of breast cancer.  I am caucasian and have the smallest breasts out of all the women in my family...they will both be removed shortly after chemo.  Have been on 5 cycles of AC and am on my 2nd of 4 Taxol cycles.  The first two cycles of chemo worked amazingly, shrunk my main tumor from 6cm to 1cm, but ever since then through two types of chemo it seems to be growing back.  In my opinion it's about 3cm now.  Another strange things is that the chemo hasn't affected my menstruation in any way. 

Please let me know if any of you can relate to my situation.

Stay strong. 

From another triple negative.

Great community site!