Newly diagnosed with triple negative breast cancer

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

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.

IRENE

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!

cj

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,

Ginny

jessiesmom1 said:

My TNBC Experience

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.

IRENE

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,

Megan

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.

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.

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..

Patti1967 said:

I bad a bilateral mastectomy

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

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

Hugs, Rose