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Newly diagnosed with triple negative breast cancer

Posts: 1
Joined: Apr 2013

I just found out that I have triple negative breast cancer. They are saying it's stage 1A and it's not in the lymph nodes. I am 44 years old. I've opted for a double mastectomy with reconstruction. I have to do chemo. Has anyone had a similar situation? I'd love to hear about it. I'm scared of the recovery. I don't want to be in pain or lose my hair.

Posts: 186
Joined: Mar 2013

I bad a bilateral mastectomy due to bilateral IDC, I had chemo.  They are both scary but you can do it:)  I had very long thick hair and lost it all.  I am 45.  It has been growing back now for three months  is almost two inches long.  On the bright side I didnt have to shave my legs or underarms for 4 months.  I didnt have reconstruction, so I cant help with that recovery but others here have and I'm sure they will help you:)

Welcome to the pink club, so sorry you are a member.  Stay strong and positive and you will see these fellow pinks on here are wonderful and so supportive!

Hugs, Patti

Pink Rose
Posts: 493
Joined: Nov 2012

Did you have your surgery?  If so, how are you doing now?  We are always open and ready to help in anyway.

Hugs, Rose

terrilynn2013's picture
Posts: 7
Joined: Apr 2013

I to was just recently diagnosed with TNBC, I am having surgery, sentinel node biopsy and port put in for chemo on the 30th. I am 43 and like you scared of what we are facing but the ladies that have gone through this has gives hope and encouragement. I am sorry you are going through this, your not alone and have lots of support.


take care,




jessiesmom1's picture
Posts: 869
Joined: Jun 2010

Hi coocoo. I was diagnosed with tnbc in Dec. 2009 when I was 51 years old - Stage IIa, grade 3. I had a right mastectomy followed by 4 rounds of A/C chemo and 12 rounds of Taxotere chemo. I have had 2 reconstruction surgeries, also. It is a sad fact that most of us who undergo chemo lose our hair to one extent or another. It does, however, grow back. It was about 6 months after my last round of chemo that I was comfortable going out in public without my wig or some sort of head covering (ex. scarf, hat). It is not just the hair on the  head that can disappear either. Hair loss can include your eyebrows, eyelashes, in your nose, underarms, arm, legs and pubic area.

As to recovery (and anything else really) everyone is different. The pain was not at all what I expected for such a significant surgery - it was LESS. It is  emotionally draining though. It is difficult to look at yourself for a while without a breast(s). I cannot stress enough how important it is to do the arm exercises your doctor or physical therapist gives you. You could end up with big problems with your range of motion as I did. I ended up needing to have shoulder surgery! You will, of course, come home after a double mastectomy with surgical drains. They are uncomfortable but an unfortunate necessity. I had mine in for about 2 week post-surgery. Your surgeon will give you instructions on how to drain and care for them.

I am sure you will have many questions as this journey continues. Please post here often. Someone  here is bound to have some experience with your issue and will be glad to let you know what their experience was. Good luck.


Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

We all were scared when first diagnosed.  And I imagine, we all were mad and upset.  I think it goes hand in hand with hearing those 3 crappy words, you have cancer.

I want to say hi and to wish you good luck on your journey.  Looks like you've got some good replies already.

Keep us posted,


Posts: 66
Joined: Jan 2013

your prognosis seems to be good. I opted for double mastectomy with immediate reconstruction. Visually results are fantastic better than I expected. I had nipple and skin sparring mastectomy. 95% of patients who go trough this procedure  do not have any feeling at breast or nipple after this type of mastectomy. If you think feeling in the breasts are important to you, you may leave the healthy breast intact, you are young and have a long life infront of you.

Visually the results are very good.

You are going to loose your hair, eye brows, lashes, pubic hair, body hair and hair in your nose. No way around it. They will grow back after you are done with chemo.

Manage your constipation well with chemo, usually instructions to avoid constipation is insufficient, keep MOM, magnesim citrate, senna at home, do not allow to go without a BM more than one day.

Ask your oncologist  to protect your bladder with mesna or Acetyl cysteine, cyclophosphamide burns the bladder, may casue immediate or long lasting problems, off course drink plenty of water to flush it out of you. In my case plenty of water was not sufficient , my bladder was quiet damaged.

Ask MetaNX prescribtion to prevent neuropathy with TAxol. This is another side effect not well managed by physicians, they tell you if you develop neuropathy they will give you gabapentin or cymbalta , but once it is developped you can not cure it just numb it with those medications. If you take MetaNX during taxol ( start one week before and continue one month after taxol is done) you will not develop neuropathy, it will protect your nerves. It is strengthened form of folic aicd and B vitamins so has no harm.

Ask for a surgeon who could do skin and nipple sparing mastectomy

Good thing about triple negative isthat you will not need hormone therapy afterwards.

Posts: 24
Joined: Jun 2010

Hi Coocoo!

You will be OK....it's a scary thing to be diagnosed with TNBC!  I was diagnosed in Oct. 2009....I had a double mastectomy, A/C Taxol ...I was stage 1 grade 3 no nodes.....I'm doing really well today.  It was my grandma, mom, aunt, sister and me.... I had reconstruction, with tatoos and nipples.....you can barely tell what I have been through!  I wish you well and hope you have faith in your Oncologist......really important!  Hugs and the very best to you!


Lynne P
Posts: 165
Joined: May 2013

It's very scary to be told you have TNBC, so, you are not alone in feeling like that.  I am wishing you good luck.

Treecy1106's picture
Posts: 159
Joined: Apr 2011

Welcome to the club no one wants to join!!! A lot of pink sisters here to help. I also had TNBC stage 2A grade 3 no node involvement in March of 2011.

They found IDC in the left breast tumors but I opted to have both removed because nothing showed on the mammo or ultrasound. I found my cancer.

AFter my BMX they also found cancer in the right breast. TNBC is nothing to fool around with so I am very happy I decided on having a BMX. I also had reconstruction during the same surgery. I recovered well sKin saving too.

Eat right take vitamins that the Dr. will allow (D3 and Bcomplex) and drink a lot of water. I had about 2 liters of water a day.

Losing my hair was by far the worse thing for me. I had real long dark hair.

I just started to let it grow back and its at that funny stage right now so sometimes I just pull it back with bobby pins and clip on a hair piece and i'm ok with that.

If you need anything jump on the chat....I am usually in there.

Google "WHat To DO When You Are DIagnosed" by Patrice Sarnatora. It might help!!!



Alexis F's picture
Alexis F
Posts: 3602
Joined: May 2009

I am so sorry and want to welcome you to a great support group of pink sisters.  I wish you the best!

Hugs, Lex

Posts: 382
Joined: Nov 2012

I am so sorry you had to hear those three horrible words, 'you have cancer', but you already have a few good things going for you. They they found it early, it's not in the lymph nodes and you found this site.  I had ILC, Stage 1, no lymph node involvement at 43.  I also had DCIS at 40.  For DCIS I had a lumpectomy and for the ILC I had bilateral mastectomy with immediate reconstruction.  For me, the surgery, expanders and reconstruction went extremely well. I had no issues with pain.  Mostly discomfort, but very manageable.  My problem came after because I had a choice whether to do chemo because my oncotype score was low.  This sent me into a mental nightmare which I truly believe I would not have had if I had found the wonderful people on this site.  I had so many questions about decisions I had to make and I didn't know where to turn.  I wish I would have turned here.  The best answers come from people who have been through it.  You can do this and the pink sisters and brothers will be here to help.

Breast cancer is a very scary journey, but one day you will turn around and the surgeries and treatments will be over.  Then you will  pass on your experiences to the next person who hears they have breast cancer and make them know that they can get through it just like you did.

Hugs and positive thoughts coming your way,


Posts: 1
Joined: Dec 2010

Sorry you received the cancer diagnosis...but out of the gate, be thankful for early detection.  Sadly, the research for treatment of  triple negative bc subtype has not progressed to anything more than lumpectomy/radiation/chemo or mastectomy/chemo.  I was first diagnosed in 2003 at age 53 and again in 2010 (no bc family history).    Equipped with faith, family,and  understanding co-workers in a small business office...I took the cancer journey.  The quick realization I found to be is that you are not alone...and only have to look beside you in an oncologist's office or at  infusion center and you'll witness so much courage & hope of many people.  Unfortunately the cancer community is populated.  There will be some physical discomfort or inconvenience in the months ahead,  everyone's treatment/recovery is individual...but the mindset that you can do this will be of tremendous help! 

I'm new to this networking...but can readily see how it can be support and encouragement both big & small.  Hope your decisions become clear and you endure to stand proudly at the other side of this setback.



Posts: 579
Joined: Dec 2010

Hello ladies.  This is all fresh, new and scarey for you both and we feel for you.  There is nothing to do but go forward now and get well and back to your lives.  If you have ANY questions please ask.  Many hints from us ladies will make life much more comfortable, especially through chemo and mastectomies.  Sentinlal node is not pleasant just a heads up on that, but over in seconds.  Someone told me and glad they did.  I truly found the GIVING of chemo was nothing, where as exhaustion is something to just go with, the drains are also not pleasant.  I could basically only eat yogurt during chemo.  Mastectomies were just painless operations, but later pain will come but covered with good painkillers, piles of rest.  We hate hair loss, I found some lovely hats on line.  It is a knack finding the style which suites you, return the ones that don't.   Even one made for going to the gym. One person actually told me I looked too glamorous in a simple hat with a pretty (quietly pretty) scarf tied round.  I do not like bright colors and yet they looked good.  You can buy ons in linen if you have hot weaforever.  Please keep messaging us and good luck to you both.

Posts: 4376
Joined: Jun 2009

I always hate to see new names on here as it means that more women are being diagnosed with bc.  However, we all welcome you and offer you any and all support that you may need.  Keep posting, asking questions and we'll do our best to help.

Hugs, Jan

DebbyB's picture
Posts: 86
Joined: Nov 2011

I had a double mastectomy with no recontruction.  For the neuroapathy you may get from the Taxol, I take active lopiec acid.  For the nausea I used two drops of pure peppermint oil on the back of my neck. The peppermint also helps with the hot flashes. (My temp would spike about 7pm every night) Once the Dr said I could I started water aerobics and it helped a lot with the neuropathy, too. Make sure you have a pair of shoes at least a half size too big or big soft slippers on hand.

I didn't have a lot of side effects from the A/C, hair loss and weight gain. I wasn't aware of how bad the pain can be from the Taxol. I would have chemo Friday morning and about 10am Sunday, I would be in pain. I used pain meds. I didn't have them on hand before the first Taxol and wish I would have.

I forgot to add with the Taxol I also lost my thumbnails and nails on my big toes. They did grow back in okay.  But it was a shock.  So need to add I still have some short term memory issues (chemo brain).  :)

Hugs, Deb

TNBC, Stage 2B, 20 months since last chemo.

June Bugs
Posts: 169
Joined: May 2013

Wishing you a fast recovery!


kmenurse's picture
Posts: 223
Joined: Apr 2013

I had a bilaterial Mastectomy for IDC with 2 pos. nodes. on 4-26-13.  I also had the reconstruction done at the same time.   The PS that did my surgery put a Salus Pain Pump in at that time as well.  I believe that this made a huge differance in the amount of pain I had the first 2 weeks... After that was removed I was controlled well with oral pain meds.  Your insurance may not pay for it though but you can pay for it out of pocket.  Also go to the medical supply office just before surgery and get a Tank/Camisal... A pink sister told me about this and it was a big help with the drains... You will probbly need a Script from your doctor for it... My insurance paid for this as well.... I wish you a speedy recovery..

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