Stage 3 Triple Negative Breast Cancer

Hi @kevachanel38 ,

I was diagnosed with triple negative at 38, too - I am so sorry. It was the worst. You can take friends to chemo, I definitely recommend that. Your nurses should be a really great resource. I was definitely the youngest person there for all infusions and treatments but one - there was a 26 year old guy next to me once, I about fell out of the chair when I heard a 1990s date-of-birth.

I found fasting before chemo to help with nausea and long walks to help with mental health.

Both my husband and I saw therapists during treatment, to help with feelings about the cancer journey and being new parents.

If you are part of a couple/partnership I highly recommend City of Hope's free monthly zoom group therapy for couples dealing with cancer. It's the only group I could find where both caregiver and canncer patient can get support from other pairs of caregivers and cancer patients.

Hugs.

Hello @kevachanel38 I am sure you are just a mess right now with emotions running high. I remember what it was like when I was diagnosed in my 30’s, although I am not triple negative. 💕
Since you are starting chemo, I wanted to speak to that. It is so frightening because we don’t know what to expect, I was terrified. Truthfully, it was awful but not painful and really the worst was only 3-5 days at a time, and with all of the stuff that went with it for me, it wasn’t half as bad as I feared. My biggest fear is always uncontrollable pain, and there was very little pain involved.
I took Taxol , Adriamycin, and Cytoxin so there was some nausea, a fair amount of fatigue and I was as bald as the day I was born. I am not vain, quite the opposite so the bald meant nothing to me. I can say the nausea meds have improved considerably since I took chemo.
All the chemo drugs are different, and they affect every patient differently but some things are really expected.
Do you know what drugs you will be on and what your regimen will be yet?

Hi @kevachanel38 - I’m sorry you are going through this. Getting the diagnoses and sorting through options (sometimes quickly) can seem so surreal.

This site is really helpful. The women here are generous to share their experiences, and the moderators are smart, compassionate, and experienced.

From my own experience which started with a diagnoses in sept 2024 and led to a bilateral mastectomy in Oct 2024, I learned quickly how important a support community is… whether it’s a partner, family and friends or some combination.

My next surgery is March 5, next week, for my reconstruction. And, honestly, I still think “I can’t believe this is all happening.”

You’re not alone. This platform is supportive. Also, you may want to see if there is a Gilda’s Club in your area. I attended zoom meetings after my diagnoses and those were helpful.

I am 59, btw. I did not need chemo or radiation. I have a subtype of triple negative.

I talked to a friend yesterday whose wife had been stage 4 triple negative when diagnosed originally in her 40s. That was 13 years ago and she is today cancer free, living a full life.

We are all rooting for you. 🫶

I agree with @dolphina3 when she says the fear goes away after your first treatment and you know what to expect. Each drug regimen is different and you may find that it is pretty easy. I don’t know where you live but here in Oregon it is hot in the summer and I kind of embraced my baldness.
The port is awesome, it keeps them from having to find a vein every time and helps protect your veins from damage too.
I agree with everything @dolphina3 said above, and I would add that this is 12 weeks. Three months of hardship and I pray it buys you at least the 21 years my treatments have bought me. My initial regimen was a year (the bad old days, lol) and I am still here, still doing most of the things I love. I was almost the same age as you when I started.
If you scroll up to the left and click breast cancer, then use the search engine for triple negative breast cancer it will pull up many discussions to connect with others.
Will you please come back here and share with us how you are doing?

awww thank you so much for sharing your story with me I appreciate you and everyone in this group so much ,I will definitely scroll to the left and search for the triple negative breast cancer discussion and connect with others . Of course I am going to come back and share with you all how I am doing , right now its tough but listening yo everyone's story I'm staring to feel better and I'm having a lot of hope that it will get better . Thanks again

I’m a tnbc warrior also. Stay aware and do your own research. It sounds like your treatment plan is chemo 1st then surgery……? Whatever happens for treatment is bound to be aggressive and is giving you the best shot at living.

Know your fighting foods… soy milk and walnuts are always part of my diet.

Be thankful you’ve on top of being proactive for yourself and not curling up in a corner. It’s not a battle we signed up for, but one where we’ll find a needed treasure of new friends.

@kevachanel38 - my prayers and thoughts are with you during this unexpected journey. I agree with everything already stated you'll get through this. Let me tell you about some of my journey with TNBC. I too was scared, but I'm a slow person to act so I started this journey research everything I could find from reputable websites about BC, then narrowed my research to TNBC when the type was identified - but to my amazement I'm also BRCA2+ - no one in my family has ever had BC, I'm the first.

I had chemo, then bi-lateral then radiation. I researched about the chemo drugs and side effects before starting treatment and things to do to prep for the infusions. I made myself a chemo treatment bag - this included my knitting, my iPad, my iPod, snacks, a hydration drink, a small blanket and candied ginger - I was prepared for many things to take my mind off my treatment. I started loosing my hair shortly after my first treatment so with curly hair I had my niece shave my head - it was winter so I wore lots of warm caps. I also found, for me, I needed to keep my protein up during my treatments in prep for the prep blood work to make sure it was ok for the next infusion. I had very high protein shakes every morning - I used a powdered protein with a high protein milk and fruit or I bought high protein / low sugar protein drinks to have. I think someone told me I should have 1/2 my weight in grams of protein per day. So if I had a 40 gram protein shake in the morning I could make up the rest during the day eating other things high in protein.

I was fortunate my dx was during covid so I was able to work through all my treatment from home and no one at work ever knew I had BC or that I was bald - I did all my video calls without my camera on - my boss knew and was OK with me not being on camera. Having to work at something I enjoyed was also a blessing - it kept my mind occupied; but still allowed me to research information on what my treatment would look like as I progressed to the next phase of treatment. I too had the port implant and was so thankful for that, it allowed full movement of my arms so I could knit or read or just cross my arms on my chest under a blanket so I could close my eyes. Just FYI - I still have my port and my onco says I should keep it in for the first 5 years of NED (no evidence of disease).

After chemo and it was determined it did its job of reducing the size of the lumps (Left breast and underarm); it was time to move to the next phase of having lumpectomy or bi-lateral. Surgeon suggested lumpectomy; but onco advised bi-lateral and most research I read indicated bi-lateral especially since I'm BRCA2+ - I wanted them on the same page so I made sure they talked and got in agreement before surgery. I was 68 at the time and chose to go flat - once I completed all my treatments I didn't want to have reconstruction at my age. Everything went fine with surgery - my only afterthought would be to make sure my definition of "flat" matched my surgeons. I don't have the flatness I thought I'd get - but I can live with it. By no means is it ugly, its just not what I envisioned.

After surgery I also had radiation as a precaution. That was more of a time annoyance than anything - it took me more time to get there than anything. From changing to the procedure I was probably at the place no more than 10 minutes. That included changing to the gown, having the treatment, then changing into my street clothes.

In early March will be NED for 2 years. Overall I think I weathered my treatment pretty well. But I still think about it periodically, but I try really hard not to dwell on it. Being BRCA2+ means I could pass the gene to my children. I did pass to my son, which elevates slightly his risk of certain cancers so he will need to start certain male monitoring tests earlier than others. I feel guilty about that but I didn't know I carried gene and there is nothing I do about it now. I also suggested all my siblings get tested, but I'm not sure they have.

This is one persons experience through this journey - I hope you have people to talk to and support you, know this site is here to learn from, express your concerns and fears to others that have or are following a similar path or just to vent about what your feeling and have someone tell you that's ok and I understand what you're feeling because I've had those same thoughts myself. Be strong because you can do this and even though we aren't physically with you we are here to support you with our words, thoughts and prayers.

Thank you for listening to someone remember all that I've been through and that I've come through a challenging path and am still standing and so can you.

Hi @kevachanel38 -

I can relate to most of these stories posted and will add my own here. I am just over a year out from a Stage 2b TNBC diagnosis (2/6/2024) at the age of 33. It has been a long year, but I remind myself every day how much I've been through and am so grateful to see the light at the end of the tunnel on my treatment regimen. I don't carry any sort of gene mutation or have a history of breast cancer in my family (the only link may have been my aunt, who had colon cancer at the age of 31).

I was on a research study right away that was testing a vaccine injection directly into the tumor along with immunotherapy and went through 2 of the 4 treatments for that piece before moving on to the standard of care treatment since my tumor was not shrinking. The first 12 weeks were weekly taxol/carbo plus pembrolizumab (keytruda) every 3rd week. If you haven't already, I highly suggest getting the ice pack mitts/boots to help with potential neuropathy - it's not fun, but they truly help! My tumor shrunk significantly on that treatment and I went on to the next phase of treatment which was an additional four cycles of pembrolizumab plus doxorubicin–cyclophosphamide (red devil) every 3 weeks. My tumor actually grew on that treatment and I had my surgery moved up a few weeks from when it was initially scheduled. I ended up going with a direct to implant double mastectomy (personal choice) as I was hoping to avoid radiation after.

After surgery - I found out that I did not have any sort of lymph node involvement, and they were able to get clear margins around the tumor. So I can say that I am now surgically cancer free 🙂 My tumor did have 50% residual disease, so while I didn't have to have radiation, I am currently on round 4 of 8 of a 3 week cycle of oral chemo pills 2x/day for two weeks on and one week off with immunotherapy on day 1 of each cycle.

The ups and downs of this journey are truly ones that cannot be explained to others who have not gone through this themselves. Know that you are a part of the worst club, but with the best members. Some of the best advice that I received was to take things day by day - even hour by hour. Sending all the positive vibes and virtual hugs your way.