Just diagnosed with Triple Neg Breast Cancer - I'm scared

Susan05 - I'm so sorry you find yourself here. The truth is that right now is the worst time - you don't have the answers you want, you've found out that not only do you have Breast cancer but TN and you just want to get it gone!

Staying away from Dr Google is wise - it is a wormhole of terrifying misinformation that you can get lost in for hours - I know!

Please ask for Ativan or a similar medication to help you with sleep and anxiety - it really does help.

Yes, TN is scary, but remember that the vast majority of us will beat it. You're definitely on the right track and you'll get through the treatments anD find so much support on these threads - you are not alone.

And yes, chemo can make the tumor smaller or disappear altogether and it is to mop up any cells that may have left the breast.

Hugs and know I am thinking of you.

Vanessa

Hi Susan,

Come join us over here: https://community.breastcancer.org/forum/72/topics...

You will find lots of support!!

Hugs from NYC!

Hi Susan,

Hugs, TN is very scary but they are making improvements to treatment all the time, so I am holding onto that and you should too.

Here are the things that I wish I had known at the start.

1) It really is best if you can get treatment at a teaching hospital. Or at least get some second opinions at one. If you have one near you should consider it. They will have treatments and ways of doing things that other facilities don't. I wish I had started out at a teaching facility. The care I received at my community hospital was good but had I started at a teaching facility I most likely would have gotten immunotherapy up front, which I now won't be getting. I will always question "what if". Because the cancer field is rapidly moving and Triple Negative is particularly being looked at more closely than ever right now, teaching facilities will have the latest and greatest information and treatments.

2) Demand genomic testing of your tumor. This is different than genetic testing. It is specifically testing your tumor for characteristics of YOUR cancer. Everyone's cancer is slightly different. This testing is not generally covered by insurance, but in many cases the companies that do the testing will write it off for you. I got mine for free after negotiating with the testing company.

3) When you have surgery, make sure they are retesting the tumor for the receptor status. It can change over time and that would change your treatments. They will probably be doing this as a matter of course, but just make sure.

4) Know that post surgery your tumor will be saved somewhere. The reason why this is important is that you may want to get into a clinical trial or have more information about your tumor that requires testing the tissue. Tissue is KEY.

5) Don't be afraid to get second opinions. You MUST advocate for yourself. No one cares about you as much as YOU care about you. This was hard for me in the beginning because I'm very shy, but my fear was stronger than my shyness and I forced myself to PUSH when I needed to go in a particular direction and i was getting resistance from my doctor.

6) Make sure you get reports of ALL your treatments. Read them. Understand them. Ask questions. Keep them in a binder for future reference.

Hugs. It will get easier. You are in the scariest part right now. Once you start getting chemo you will most likely actually start feeling a little better mentally because at least you are doing something. Reach out with ANY questions. We are here for you.

Rebekah

WinningSoFar, I am so glad to hear you are doing well! I know a couple of other TN Stage 4 ladies that are doing well too. One is NED now after an immunotherapy trial. I am holding onto hope that we are on the brink of some BIG breakthroughs.

Rebekah

I don't post much, nor do I read a lot...……..so please if you want to talk (anyone here) e-mail me so that I will see it.   

I just wanted to say that I am still cancer free at 7 years after  the 1st diagnosis and 5 years after the 2nd.    Thank God.  

Susan05, it's so good to read your posts as I'm in a similar place as you. I have a 4.1cm lymph node of TNBC. Results from my MRI came early this morning and there are 2other places in my right breast recommended for biopsies. I can't tell from the lingo if they see something in my left breast or not. Tomorrow I'm going for 3 scans: CT scan, NM scan, Echocardiogram. I had a wonderful weekend with lots of laughter and friends camping. Hopefully, I can start chemo Thurs as planned, but I haven't had a call about getting a port yet. I'm just so ready to get this show on the road.

I, too, think my lymph node is growing. There were no signs of a large node per mammogram from Jan '18. I love learning what you're going through as it seems like I'm going to fall in line.

viewfinder - sorry for your sister. Oncotype does not apply to TN - it is only for hormone positive.

TN is aggressive and the only weapons in the arsenal are surgery, radiation and chemo. Chemo is usually advised even at stage 1. Do you have her stats?

Hi everyone. I too am triple negative, diagnosed in june. Started chemo Taxol in august did 12 rounds, now on my third a/c. One more to go. My lump was small when found 8 mm, in a moth before treatment started it went to 1 cm and spread to 1 lump node.

I was so elated to start chemo it gave me a sense of control. Now 16 weeks later and 2 more to go I am terrified. Every ache I feel I worry it is spreading. I question if all this chemo worked. I have been having a tough few weeks, I am crying everyday and so scared chemo is not working. After chemo is surgery and 6 weeks radiation .

I handled chemo pretty well, just now at end of it I am more tired. No eyebrows or lashes ot hair, which was hard

I have TNBC. I have had an excellent response to chemo (so far; just had my last one!) and I will know in a few weeks if there is any residual cancer or not... hopefully not! My tumor was about the same size as yours and it melted away. I had a 3 cm lymph node- it also melted. I hope your melts too!!

I have been very proactive with diet and complimentary therapies alongside chemo. Knowing my best shot is kill this cancer right now, I decided to throw the book at it. I have been using the fasting mimicking diet just prior to chemo day, followed a mostly ketogenic diet-- very low carbs -- and also eating way less animal products. I am taking a raft of supplements. There are things like melatonin and metformin which have shown anti-metastatic activity -- I have added them too. I do nutritional IVs, high dose C IV and hyperbaric oxygen. It's a full time job!

In addition to the teaching hospital advice (smart) I strongly recommend you find a naturopathic or integrative medicine physician who can guide you to the supports that will help you. Some help kill cancer and some help your body tolerate the chemo. Oncologists do not necessarily know this stuff. Their job is kill cancer. Naturopath's job is build your system to be unfriendly to cancer. Those are different jobs. There is a cancer clinic in Chicago run by Dr Keith Block-- he is very experienced with complimentary therapies done alongside chemo. He has a book, "Life Over Cancer," that contains a wealth of info. You can get a consult w him as well.

Wishing you the best!