Triple Negative BC

ssmith37

I met with my surgeon today to discuss the MRI results and other things. Had another ultrasound to see the additional "suspicious mass". He did see it on the ultrasound, but he is not too concerned about it because its edges are well-rounded and smooth. So that's probably good news. However, he is conferencing with my insurance company today over their denial of the PEM scan. He feels there is even more need to have it done now that the second mass was found. I don't know if I mentioned it previously, but my insurance company denied the PEM scan because a "review" of their records indicated I am being treated for "bladder cancer" and there is no evidence to suggest having a PEM scan will affect treatment options. Stupid insurance companies. They didn't "review" their records at all! Anyway, hopefully that will get approved. Another thing we found out today is that my breast cancer is triple negative. We were hoping I could avoid going through chemo, but it is highly unlikely that I can now. He said surgery will likely be in one to two weeks, depending on the PEM scan results and whether or not I will need a biopsy of the other mass. Anyone else out there triple negative IDC who hasn't undergone treatment yet?

1acme

I am Triple Neg BC
Hi

I am also Triple Negative BC diagnosed this year.
I am 37 y/o who never smoke, drink, did narcotics, no family history and I was medication free till my surgery.

January - Diagnosed as well with DCIS @ 37 y/o
February - Lumpectomy (4.5cm), Centennial note (2cm) and 14 Lymph notes removed from Right side
May - Chemo 4x A/C and 4x Taxol (16 weeks in total - 2 weeks a part) plus Neupogen daily injection
After chemo I have to go back to see my surgeon for another re-incision (provably September)
and I am also opting out for Double Mastectomy to reduce risk of reoccurrence, provably in late Fall.

Prior to operation I had done Mammograph, Ultrasound, Biopsy, MRI, Bone & PET Scan. (I do not know what is PEM scan)

Triple Negative is very aggressive type of BC and reoccurrence is VERY high.
My tumour was grooving about 1cm PER MONTH (between Mammo and Biopsy) so I ended up with 4.5cm tumour and Grade 3.
Unfortunately, I do not think that Triple Negative BC could be treated without chemo.
But certainly I wish you good luck.
Have a nice day

Helen

jessiesmom1

TNBC also
I have also had TNBC. It was a difficult diagnostic workup since no cancer was found in my breast tissue at all. Malignancy was found only in my right axillary lymph nodes. Diagnostics consisted of mammograms, breast ultrasound, breast MRI, PET/CT scan, excision biopsy and an EGD procedure. Btw, PET = Positron Emission Tomography; CT = Computed Tomography; MRI = Magnetic Resonance Imaging. I had a complete axillary dissection and 2 of 22 lymph nodes were positive. A right mastectomy followed. After that came 4 rounds of A/C (Adriamycin and Cytoxan) and 12 rounds of Taxotere. No radiation. No hormones due to being triple negative. Hopefully the rest of your diagnostics will go smoothly and you get the treatment you need. This Board is a wealth of information and support. Good luck.

IRENE

roseann4

jessiesmom1 said:

TNBC also
I have also had TNBC. It was a difficult diagnostic workup since no cancer was found in my breast tissue at all. Malignancy was found only in my right axillary lymph nodes. Diagnostics consisted of mammograms, breast ultrasound, breast MRI, PET/CT scan, excision biopsy and an EGD procedure. Btw, PET = Positron Emission Tomography; CT = Computed Tomography; MRI = Magnetic Resonance Imaging. I had a complete axillary dissection and 2 of 22 lymph nodes were positive. A right mastectomy followed. After that came 4 rounds of A/C (Adriamycin and Cytoxan) and 12 rounds of Taxotere. No radiation. No hormones due to being triple negative. Hopefully the rest of your diagnostics will go smoothly and you get the treatment you need. This Board is a wealth of information and support. Good luck.

IRENE

Robin Roberts had triple negative bc.
Mine was estrogen receptive. I asked my onc about triple negative and she said that sometimes estrogen receptive can be even more difficult. She did not feel that any particular type was more difficult that another because there are so many variables. My friend had triple neg bc and has been Ned for 7 years. Keep the faith....we're here for you!

Roseann

poplolly

I have triple negative. Had
I have triple negative. Had mastectomy, 5.6cm tumor--I also think that chemo is a given if it's triple-negative. At least, my oncologist said so. I also had trouble with my insurance company. They refused to pay for one of my medications because they determined I did not need it. It was a preventive medication. That just burned me up!

mimivac

TNBC
I had triple negative BC 2.5 years ago, and I'm doing great. The treatment is aggressive, but TN responds very well to chemo and the prognosis is not necessarily anything to be afraid of. In fact, after a few years out, your chances of recurrence drop dramatically and are lower than for those with ER positive cancers. Plus, you don't have to take anti-hormonals. I had lumpectomy, 6 treatments of TAC, and radiation. Good luck!

ssmith37

1acme said:

I am Triple Neg BC
Hi

I am also Triple Negative BC diagnosed this year.
I am 37 y/o who never smoke, drink, did narcotics, no family history and I was medication free till my surgery.

January - Diagnosed as well with DCIS @ 37 y/o
February - Lumpectomy (4.5cm), Centennial note (2cm) and 14 Lymph notes removed from Right side
May - Chemo 4x A/C and 4x Taxol (16 weeks in total - 2 weeks a part) plus Neupogen daily injection
After chemo I have to go back to see my surgeon for another re-incision (provably September)
and I am also opting out for Double Mastectomy to reduce risk of reoccurrence, provably in late Fall.

Prior to operation I had done Mammograph, Ultrasound, Biopsy, MRI, Bone & PET Scan. (I do not know what is PEM scan)

Triple Negative is very aggressive type of BC and reoccurrence is VERY high.
My tumour was grooving about 1cm PER MONTH (between Mammo and Biopsy) so I ended up with 4.5cm tumour and Grade 3.
Unfortunately, I do not think that Triple Negative BC could be treated without chemo.
But certainly I wish you good luck.
Have a nice day

Helen

Helen, thank you so much for
Helen, thank you so much for your response. I was diagnosed at 37 as well with IDC this April. It seems to me like it is taking FOREVER to get this thing out! But I guess it's best to get all the tests done that we can while we can. I keep reading that breast cancer doesn't cause pain. Uh...mine does. I keep having sharp pains, and the lump itself has been so sore since the biopsy! Anyway, I don't know what made me write all of that! Lol! I really appreciate your post and time line. How are you doing on the chemo?

ssmith37

jessiesmom1 said:

TNBC also
I have also had TNBC. It was a difficult diagnostic workup since no cancer was found in my breast tissue at all. Malignancy was found only in my right axillary lymph nodes. Diagnostics consisted of mammograms, breast ultrasound, breast MRI, PET/CT scan, excision biopsy and an EGD procedure. Btw, PET = Positron Emission Tomography; CT = Computed Tomography; MRI = Magnetic Resonance Imaging. I had a complete axillary dissection and 2 of 22 lymph nodes were positive. A right mastectomy followed. After that came 4 rounds of A/C (Adriamycin and Cytoxan) and 12 rounds of Taxotere. No radiation. No hormones due to being triple negative. Hopefully the rest of your diagnostics will go smoothly and you get the treatment you need. This Board is a wealth of information and support. Good luck.

IRENE

Thanks for the response,
Thanks for the response, Irene. I hope you're doing well now. When were you diagnosed? How was the chemo?

ssmith37

poplolly said:

I have triple negative. Had
I have triple negative. Had mastectomy, 5.6cm tumor--I also think that chemo is a given if it's triple-negative. At least, my oncologist said so. I also had trouble with my insurance company. They refused to pay for one of my medications because they determined I did not need it. It was a preventive medication. That just burned me up!

Hi poplolly! I can't
Hi poplolly! I can't believe the insurance companies! They're more worried about saving a dollar than saving a life! Did you fight for and get your medication? How are you doing now?

ssmith37

mimivac said:

TNBC
I had triple negative BC 2.5 years ago, and I'm doing great. The treatment is aggressive, but TN responds very well to chemo and the prognosis is not necessarily anything to be afraid of. In fact, after a few years out, your chances of recurrence drop dramatically and are lower than for those with ER positive cancers. Plus, you don't have to take anti-hormonals. I had lumpectomy, 6 treatments of TAC, and radiation. Good luck!

I'm glad to hear you're
I'm glad to hear you're doing great, and so thankful for the positive post!

wendymh11

ssmith37 said:

Helen, thank you so much for
Helen, thank you so much for your response. I was diagnosed at 37 as well with IDC this April. It seems to me like it is taking FOREVER to get this thing out! But I guess it's best to get all the tests done that we can while we can. I keep reading that breast cancer doesn't cause pain. Uh...mine does. I keep having sharp pains, and the lump itself has been so sore since the biopsy! Anyway, I don't know what made me write all of that! Lol! I really appreciate your post and time line. How are you doing on the chemo?

I also have TNBC
Hello, I am 46 and was diagnosed with IDC TNBC Feb 14th. I had a mastectomy March 29th. I found my lump due to pain, and after my biopsy continued to have pain. Tumor was 4.5cm, clear margins, lymph nodes clear. I had an expander placed at time of surgery. Still waiting to start chemo, due to some complications with healing. Hoping to start June 1st. I'm still processing everything. Its alot to take in, I have supportive family and friends, that is half the battle. I hope you are well.

Wendy

kenr

TNBC
My wife has triple negative, only 3mm IDC tumors, yet several oncologists recommended chemo. TN is very aggressive. The chemo is insurance. Imagine how you will feel if you dont do it, and in a year, it has metastasized? How will you feel? If you do the chemo, at least you will know you did everything possible. My wife did a mastectomy and 4X TC/AC. She kept working (she is a lawyer), had to take Neulesta shots because her WBC fell precipitously, but had no nausea and little bone pain. She took the advice of the many posts to drink tons, take all the anti-nausea meds, take Claritin and Aleve to mitigate Neulesta, etc. She had an allergic reaction to the TC (blisters on hands and feet, not pleasant) and switched to AC. No problems other than major fatigue, but she keeps working. She is my hero and my inspiration, and I am lucky to have her.

kenr

TNBC
My wife has triple negative, only 3mm IDC tumors, yet several oncologists recommended chemo. TN is very aggressive. The chemo is insurance. Imagine how you will feel if you dont do it, and in a year, it has metastasized? How will you feel? If you do the chemo, at least you will know you did everything possible. My wife did a mastectomy and 4X TC/AC. She kept working (she is a lawyer), had to take Neulesta shots because her WBC fell precipitously, but had no nausea and little bone pain. She took the advice of the many posts to drink tons, take all the anti-nausea meds, take Claritin and Aleve to mitigate Neulesta, etc. She had an allergic reaction to the TC (blisters on hands and feet, not pleasant) and switched to AC. No problems other than major fatigue, but she keeps working. She is my hero and my inspiration, and I am lucky to have her.

ssmith37

kenr said:

TNBC
My wife has triple negative, only 3mm IDC tumors, yet several oncologists recommended chemo. TN is very aggressive. The chemo is insurance. Imagine how you will feel if you dont do it, and in a year, it has metastasized? How will you feel? If you do the chemo, at least you will know you did everything possible. My wife did a mastectomy and 4X TC/AC. She kept working (she is a lawyer), had to take Neulesta shots because her WBC fell precipitously, but had no nausea and little bone pain. She took the advice of the many posts to drink tons, take all the anti-nausea meds, take Claritin and Aleve to mitigate Neulesta, etc. She had an allergic reaction to the TC (blisters on hands and feet, not pleasant) and switched to AC. No problems other than major fatigue, but she keeps working. She is my hero and my inspiration, and I am lucky to have her.

That is such a beautiful
That is such a beautiful response, Ken. Thank you so much. And your wife is a lucky lady.