July 12, grade 3 IDC, triple neg

Ntlw12

I have been reading the comments on this board all day. I’m only 38, I’m a high school teacher (which I love so much)…. And I’m just not ready to die. It’s all I can think about.

Since the positive biopsy, I’ve had a breast MRI, which confirmed the results, but nothing else was found.

I meet with the surgeon on Monday and I’m petrified. I read somewhere online that I might only live 13 months… I know you aren’t supposed to do that. But, I did.

I’m just scared.

LivinLife

Hi ntlw! I do not know about your cancer type, as far as prognosis and all..... There will be others who will come along who know more. I can hear the hopelessness in your post. They have come a long ways with breast cancer over the years! There are lots of folks on this site who are Stage IV and have had breast cancer for several + years.... I hope others will be able to give you factual concrete info that will provide you some hope about your particular cancer....

MSWife

I'm sorry to hear your news, but you've come to the right place!

My husband was diagnosed a few months ago and I was a wreck for 8-10 weeks. I started checking out these message boards and there are so many people with such great advice and positive stories to share.

Try not to get too ahead of things right now - it sounds like you still have a lot to find out in terms of staging and treatment options.

The other very important thing I learned early on is to stay away from survival rates on the internet - this information is often old and doesn't take into account new treatments that have been developed in the last 5-10 years. More and more people are having success with treatments, symptom management, and prolonged survival, even those with advanced disease. Check out some of the message boards of stage 3/4 people surviving (and thriving)for many, many years.

I should also mention my sister in law, who had stage 2b triple negative breast cancer 8 years ago and is doing great

I wish you good luck and please keep us updated.

Trishyla

I'm quite a bit older than you are, ntlw12. I was diagnosed nearly five years ago at age 58 with triple negative breast cancer and hormone positive breast cancer, all at the same time. Despite what looked to me at the time to be a terrible diagnosis, I'm still here. I had a bilateral mastectomy and eleven months of chemo with a big ole heaping helping of sheer terror to go with it. It's a scary thing to contemplate. Getting to this point wasn't easy, but it was doable.

I hate that you have to deal with this at such a young age. The upside to being younger is that you are very likely stronger and healthier than many of us older women. And with triple negative once you get past that five year mark, your risk of it coming back drops to nearly zero. With hormone positive cancer your risk of a reoccurance increases every year.

Take a deep breath, find something fun to do, and stay the hell away from Dr. Google. He's an idiot who doesn't even have a license to practice medicine. 😁

Come to this forum for support as often as you need. We're here for you.

Trish

Melbo

I was diagnosed last year at 41 with HER2+ cancer. It's utterly terrifying, but don't start planning your funeral yet! Triple negative is definitely a scary diagnosis, but if you spend time on these forums you will see many women who have had triple negative and have gone on to live full lives.

With triple negative you will probably have to do chemo, but it’s doable and probably won’t be as bad as you imagine.

Deep breaths. Take it one appointment at a time. Breast cancer is a marathon, not a sprint.

I found the NCCN guidelines on breast cancer to be really helpful when I first got my diagnosis and now I try to share them with all the newbies here:

https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

Bookpusher

Hi Ntlw12,

I can only share the experience of an acquaintance of mine with triple negative. She was diagnosed at 38. She is now 58!! (I am 12 years older than her) She is a registered nurse and was in the room with me for my first stereotactic biopsy about a month ago.

I understand your feelings of worry and despair, but take heart. There is hope, hold onto to that and I love what Melbo said - take it one appointment at a time. I found a good Netflix series and when I need to chill, on it goes. It has helped. Find something that will help you escape from the unrelenting pressure. It’s different for everyone, but I do hope you can find a distraction.

Sending you prayers and best wishes.

1982M

I just wanted to send you lots of love and light. I'm 39. I was recently diagnosed with triple positive breast cancer. I sometimes get really scared too. Scared I won't be there for my kids. Scared the treatments will change who I am. Scared about a lot of little and big things. Guilt, sadness, anger, frustration, all of it. I can't read about prognosis anymore bc they are just numbers and I'm more then a number. I tell myself one day at a time.

I have no real words of wisdom butI just wanted to let you know your not alone.

Ebaker4395

Hi Ntlw.. I was also diagnosed with grade 3 IDC triple negative. I'm only 44 and this was the last thing I thought I would ever be faced with. I completely understand your fears. I googled everything and by the time I met with my oncologist I was completely convinced I was going to die. His advice to me was to stay off Google, it's not always a good thing and assured me that this is completely treatable, it's not a death sentence. I'm still scared and have my occasional melt down but after talking with him, it did ease some of my fears. I am here if you would like to chat about it. I think talking about it helps a lot.

I will keep you in my prayers!

NorCalS

Ntlw12,

I was diagnosed with TNBC a little over two years ago. MO staged me at 3c/4, with main tumor over 6cm and numerous lymph node involvement. I received neoadjuvent chemo (AC-T), which shrank the tumor to a point that it was not detectable on the breast MRI right before surgery. I did not achieve PCR, but chemo did substantially reduce the tumor. TNBC tends to respond well to chemo. There are numerous ladies on this website that achieved PCR after neoadjuvent chemo, so don’t give up hope.

I also met several women (nurses) during treatment that are 10 years+ from their TNBC diagnosis. They gave me a lot of hope and tips. There are several threads on this site that deal specifically with TNBC, so hopefully, they can be of help.

Ntlw12

thank you for so many great replies. My emotional pendulum is swinging out of control.

santabarbarian

Nltw, I am another TNBC-er. There is a thread "Calling all TNs" in TNBC forum that is active with many who beat TNBC you might want to check out.

I was diagnosed 3 years ago, and I had a pathologic Complete Response to chemo. I had a 3.8cm multi focal tumor and 3-4 lymph nodes... one lymph node was 3cm. Nothing they could see elsewhere in my body. I had chemo, then lumpectomy, then rads. The surgery took 4 nodes... and there was scarring indicative of cancer, but no live cancer there or in breast.

The "silver lining" of TNBC is that it is often very responsive to chemo; more so than other breast cancers.

If you get a strong response to chemo, the survival stats for TNBC are very good. It tends to come back quickly or not at all. They say 3 years is an important milestone, and after 5 years your risk of recurrence drops to nearly zero (of course one can get a new BC that isn't a recurrence).

They tend to do chemo first so they can watch the tumor and switch chemos if it isn't shrinking.

TNBC has 4-6 subtypes (Ive seen both numbers) and they tend to respond differently to different chemos so that might be a question to ask your doctors... what subtype they think you are.

Chemo isn't a picnic but it is tolerable -- side effects much less than I feared. Never threw up .. didn't even take the antinausea my last 3 chemos. Fasting prior to chemo day helped me tolerate chemo better.

There are many supportive women who have walked this same path who can help you. It's much easier when the plan is set and underway. Right now is the worst, most anxious time. You will get a handle on this and it will get easier!

Wishing you the best.

Valsc

I was Grade 3, Triple negative, 8 positive lymph nodes with lots of vascular invasion. That was 22 years ago! Just take a deep breath. Get support from friends and families. Ask your doctor for medication if you need something to calm your nerves and help you sleep. Treatment is not easy but it will go by fast! We are here for you

Ntlw12

Hi everyone,

You were right about feeling some control after meeting with the BS. I am scheduled to meet the oncologist this Wednesday and get my port in Thursday. Chemo will start sometime next week or the week after. My surgeon was awesome today and made me feel so much stronger. My blood pressure was out of control though. For the past couple of days I feel like I was having a full-blown anxiety attack (I am on an anti-anxiety medicine from before this whole thing.) im hoping to get a good night’s sleep tonight and starting tomorrow off with a walk with a friend to boost my overall mood. Then going through the chemo page to check off things on the list as I prepare down that road. I will be having high density chemo to see how the tumor responds and then most likely surgery and radiation after. Thank you for all the good vibes and prayers.