2nd Time Diagnosis - New Primary - Triple Negative This Time

Hi Curlylocks,

I too am on my second time around.  Diagnosed at the age of 44 in 2005 with Ductal Carcinoma Stage 2 no lymp node involvement in left breast - had left breast lumpectomy with chemo and radiation - didn't have the taxotere back then but some other chemo concoction. In From January 2013 to April 2013, I had a mammogram, ultrasound, breast mri, biopsy without a definitive find.  There was something there but they just couldn't tell what it was. I decided to go for the double mastectomy with trans flap reconstruction.  Was told going into this I didn't have to go through chemo but having the mastectomy was a precaution because I had cancer before.  The pathology report said I had TNBC so I was told chemo was necessary.  They gave me the Taxotere with the Neoplasta shot the day after.  I was allergic to the Taxotere and had to be desensitized to it.  My only choice was to take the taxotere as a necessity.    I am not sure what lies ahead but I am trying to stay strong and be positive and I hope you are doing the same.  It is difficult to get any answers on our diagnosis.  I was told there is only a 7-9 % chance this may come back - I am holding on hope at the 91-93% chance it won't come back.

Michele - I had a PBM and a surprise IDC was found. Honey - it really really really sucks. Anyway my BS did a SN biopsy three weeks later. I've since learned that there is some controversy about being able to do this. But I'm sticking w the story that he did it. If you want I can give you my BS's name and number he might talk to your BS, just PM me.

So so sorry about that nasty bugger. My BS and my Onco both said independently that things start to get picked up about 1 cm. Do you think the AI caused it to switch status?

Gentle hug. 

Hi,

I just joined the forum today. I have been reading different articles on here for a few weeks. I was diagnosed with triple negative breast cancer in November 2013. Mammogram picked it up in right breast. It was small, not feelable yet. Tumor was right under the breast at the bottom of it like where it lays on the chest. Since then, my life has been turned upside down, as you all know.

I am a 23 year breast cancer survivor. In 1990 I had a medullary breast cancer, left breast. I had a lumpectomy in 1990. Tumor was big - I found that one because it hurt. Mammograms, ultrasound, needle aspiration did not show cancer. When I went into surgery, I was going in for a 'simple cyst removal'. Well it turned out it wasn't so simple after all. It was cancer. I had 7 weeks of radiation and 6 mos. of chemo; cytoxen, 5fu and methotrexate. I did not lose my hair, I felt pretty good through most of it. There was only one time that my white count was too low to get the treatment. My surgeon did remove most of the lymph nodes in my left arm at the time of the lumpectomy, and I have lymphedema in the arm now. It's swelled pretty good. It started swelling when I got pregnant.

This time around, I have been told so many different things! First, my surgeon who did the biopsy told me when he got the results back, that it was triple negative, aggressive. Okay.... that scared me pretty bad. Good news is that we caught it early, its very small, etc...  I had the tumor removed on Dec. 11, 2013, and he also removed 3 nodes.  He said there was 'microscopic' pieces in the first node, so chemo would be necessary. No surprise there!! I went to talk to my old chemo doc on Dec. 26th. In reading the pathology reports, she told me that the tumor DID respond to estrogen, though weakly. So she said she would not call this a triple negative, which is a good thing! Once again, all seems to be in my favor - caught early, very small, responded to estrogen. So she said to go ahead and get my surgeries. I want a double mastectomy and a DIEP flap reconstruction.  She also was going to have an Oncotype test done on the tumor to gauge my recurrence chances. She said she figured I would test high. That's a surprise to who, lol?  Anyhow....  I have been visiting plastic surgeons and reading and researching DIEP flap reconstruction. Pretty focused on that. Or at least I was until I got the dreaded call that she wanted to see me.

On that visit 2 weeks ago, she informed me that I tested a 45 on the Oncotype test. In the high range. So in a matter of 15 minutes I'm being set up for a port surgery, chemo class, and chemo to start on Jan. 28th! I asked her "didn't you just tell me 3 weeks ago that all was good and I could have my surgeries"??  Well I have a high recurrence rate, yadda yadda yadda. She says that now, from whoever did the pathology on the tumor this time, that it DID NOT respond to estrogen so it's back to being triple negative again. My head is spinning!!!!! 3 pathologists or whoever have looked at this tumor and 3 different answers have been given! The tests are only as good as the people inputting the information. If they move a decimal point off one place or something, it throws the whole test outcome off. I don't know. All the doctors can do are read the reports that these other people type up for them.

Now, she wants to give me Taxotere and Cytoxen. 6 months of the crap. I have been reading on this site from other women who have undergone this cocktail of drugs and I don't mind telling you that I don't want it! I don't want the bone pain. I can live with losing my hair this time around, I'm now 55 years old and vanity isn't as important as it was when I was 31, lol. I don't want the bone pain I'm reading about. My back hurts all the time anyhow. I don't want black/purple fingernails. There wasn't one good thing I read about this drug combo. Not one. I also have A-fib, and I know these drugs are hard on the heart and every other organ in the body. I think she said that with chemo my chances of NOT having a recurrence in 10 years is only like 3%. That's not much....

I'm not as young and healthy as I was 23 years ago. I tolerated everything well back then. Got tired the first 3 days after treatment. I also think I got through it so good because I could look in the mirror and still see a pretty woman with hair! I didn't look or feel like a cancer patient. This time I will.  I have to work. I can't afford to be off pay, and I only have 7 sick days and 10 vacation days for the YEAR. My husband can't afford to pay all the bills, my car payment, my credit card bill, etc.. all by himself. He has his own bills. And when I have my surgeries later in the fall (I hope) I will be off work for several weeks. I can't have debilitating bone pain that keeps me home, now. I'm soooooo angry!!!!!! My insurance deductible is $1500 and my out of pocket is $3500. I'm trying to make monthly payments on the bills rolling in from December now. My God it's all so depressing. I have excellent credit and I don't want to lose that. I ended up filing bankruptcy back in 1995 just from the 20% I owed on the medical bills from the cancer back then. I couldn't pay them. I just can't afford to be off work. I am so worried about this! 

I have to have genetic testing on the 28th, which I really don't want because I'm sure I'll end up having to have a hysterectomy or ovary removal too, and I'm already tired of being cut on, poked and jabbed.   I'm already aware that cancer and heart disease runs in our family. I really don't care to know why I'm the one who ended up with it instead of any of my 6 siblings. Not that I would wish it on them. It's so unfair that I have to go through this twice in my lifetime. So unfair.  But I will go through this for my 21 year old daughter. If I have the mutation, then she has some decisions to make at such a young age. That breaks my heart.

I had the port put in this past Tuesday. It's still very sore - especially in my neck. Chest isn't too sore, just 3 shades of greens and yellows, lol. I missed my chemo class because after the port procedure, I was waiting in the chemo docs office for the teacher nurse to come talk to me about it, and I went into Bradycardia with my heart. I was taken over to the ER. I've been sooooooo stressed over all this and the head games - first it's good, then it's not, then it's good, then it's not -  its a wonder I haven't had a heart attack yet! I called her office Friday and left a message for the chemo class teacher nurse person to call me because I have questions, and no one called me back.

I've made up my mind that I'm calling tomorrow and canceling the chemo on Tuesday until I can talk to someone about these drugs and the awfulness of them. I'm already aware that they won't tell me the truth, I'll get the standard "everyone is different and is affected differently" answers like I did 23 years ago when I asked questions. Some things never change!! Their standard answers never change. I don't think the women on this site who have been through this crap would lie about how they felt. Do I think these doctors and nurses would lie? You betcha! Of course it's called 'giving me compassion' not lying, lol. Having been through cancer already, I kind of know what to expect.

Anyhow, thank you all for listening to me rant, and thank you to all you brave souls for sharing your experiences. It does help! I'd rather hear honesty. Not "well it could" or "it's possible".  I'm told that I read too much and believe too much. But I'd rather have some kind of education than to go into something blind. They don't like it when you kind of know what to ask and you want answers. We're supposed to just go along with whatever they say and keep quiet. Doctors are not Gods, and they are only as good as the materials supplied to them by others! 

God bless us all and keep the faith! Mine is being tried right now, lol, but I'm trying to remain positive. Failing miserably though, I think! Have a great day all.