So…I have not posted in awhile.  The same thing happened to me when first diagnosed.  The phone calls the visits…I was like - hmmmmm….what is going on.  What was going on was love.  My crew researched as well.  Honestly, we all did and then we just started with the one day at a time view of it all.

This site saved me.  Donna and Steve are an amazing resource for us all.  I still read the posts everyday.  I have not posted in awhile because of technology and constantly forgetting my sign on info and that is not because of treatment…🤨I have had a bad memory for years.

As I enter my fourth year since being diagnosed, stage one, no nodes and grade three.  I slowly realize all the things in the beginning that I thought I would never see…I have seen and then some.  I am filled with gratitude every single day.

Stay strong and soak in all that love that surrounds you…let them continue to go that extra mile.  Sounds like a long running good family♥️

As ever, Marymom

EvilTina,

I was diagnosed of TNBC in October 2020.  In Nov., I had a roller coaster of diagnostic tests-MRIs, ultrasounds, PET-scan, node biopsy then port placement.  In April, I finished chemo and in May I had double mastectomy.  I am still recovering from all that.  Initially, its hard but it gets better! You will get through this!  Hope you have a good team of doctors.  And I agree with the previous post that this site is a great resource, especially, Donna and Steve! 

Best,

Amrit

 I don't come on the site often and post even less. I was dx 20 years ago when my daughters were 9 & 13. I was rather lucky....TN hadn't been named yet so there wasn't the big fear/scare factor that there is now. the beginning time of the unknown is the worst. I would stay up after the kids went to bed reading Susan Love's Breast Book cover to cover trying to garner any knowledge possible. The best advice given to me was to allow myself 15 minutes daily for a cry/pity party, whatever. Having that permission to not always be strong truly helped. 

EvilTina,

I was given 4xAC followed by 12xT.  During AC, I couldn't work in the week of treatment but I could do some work in the following week. I worked from home during my chemo.  I am a teacher in a university, so my work involved teaching and research. However, during 12xT treatments, I was quite active but sometimes needed a short nap in the afternoon.

I did not use the cooling cap. All the best for your treatment!

EvilTina wrote: hi you ladies are using abbreviations that I’m not familiar with yet. AC, etc. please advise.

There is a really good thread providing many of the abbreviations used on the forum:

https://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html" rel="nofollow - https://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html

Steve

Steve

The fact that your lymph node size has decreased is a great thing! So it's great that means your body is reacting to your treatment. Try to keep your mind busy, read, exercise, meditate use whatever outlet feels good to you. 

There are many times scans can be inconclusive and need additional imaging. It is easy to let your mind go crazy with different scenarios. There are some things that are best seen on MRI, Ultrasound etc. and need a different way of looking at it to best determine what it is. It doesn't necessarily mean it's something malignant.

Yes and please read the success stories! Also on the forum of breastcancer.org there are numerous categories and one is success stories. We are all here for you and understand how hard it can be to sort through all these emotions! Hugs and best wishes.

Andrea   

My 31-yr old daughter just diagnosed with Stage 2 TNBC. I am heart-broken. 

As a parent whose daughter was diagnosed with TNBC when she was 36 I understand your "broken heart." Mine was broken, too, but hopefully yours can heal too, as mine has, as my daughter is approaching 18 years of being NED (No Evidence of Diesease), in my opinion, the nicest acronym in the English language.

I am not a medical professional but I think your daughter, if she hasn't already, should consider seeing a Certified Genetic Counselor, and get tested to see if she has a gene mutation that caused her to have a pre-disposition to getting breast cancer at such a young age. Even if there is no history of breast or ovarian cancer on the maternal side of your family she may have inherited a gene mutation from her dad and dad may never 
have had cancer but passed the mutation on to your daughter.

That is what happened with my daughter. I inherited the BRCA gene mutation from my mother and she from her mother. And, even though I have not had cancer, I passed the mutation to my daughter.

It can be very important for your daughter to know if she has a mutation that is deleterious. It may affect her treatment/surgery plan.

If you have any questions you can send me a PM or and email to

info@sagepatientadvocates.org and we can talk. I am not a medical professional and will not give you medical advice but I will try my best to be a good resource for you and your daughter and there are no charges.

warmly,

Steve

I had BC back in 2006, it was called double negative. Tests showed no BRCA mutation. I had 4 rounds of TAC, then chemno triggered a bad Heptitis B, almost died from liver failure. Thank God I survived. Had 20+ radiation. 

All clear. I regained my health and everything. Until April of 2021. I was diagnosed with ovarian cancer. REdid genetic testing. BRCA 1 came back positive. 

I had my daughter tested in september of 2021. She has BRCA 1 mutation as well. She has been working 70 80 hours week for 4 + years. Then last week, she was dignosed with Stage 2 TNBC. 

This hit me so much harder than my own cancer. I didn't cry much at all through both of my encounters with cancer. But I have been crying every day this week...

I pray to God and know she will be fine. But I just couldn't help crying. ..

Sorry, I don't think I answered your question about my daughters age. She was 36 when she was diagnosed with TNBC and will be 54 in May. And she is NED and healthy.

The part that, somehow, is not talked about as much as breast cancer and BRCA carriers is the risk of ovarian cancer if you have the BRCA mutation. BRCA is short for breast cancer and indeed, we were told that, my daughter has a mutation that conferred an 85% risk that she would have breast cancer in her life time and a separate almost 50% risk to contract ovarian cancer. I think the better acronym would be HBOC Hereditary Breast and Ovarian Cancer because ovarian cancer is so hard to detect in an early Stage. I believe 80% of women are Stage III or IV at the time of original diagnosis. 

Incredibly, I have been at consults where the oncologist didn't even mention the risk of ovarian cancer but just spoke about the BRCA+ patient's breast cancer even though the woman was over 65 and clearly finished with having children. And I understand that there are risks and potential problems with gynecologic surgeries but I feel a balanced conversation is better than no conversation. 

Suzy, I deeply admire your offering to Joy to have her daughter speak with you. I think that is what I love the most about this forum. So many are so kind and caring and willing to share their experiences.  

warmly,

Steve