Just found out triple neg - help pls.

I was a young 58 when diagnosed in September of 2007. I was not even aware of triple-negative and when I my  BS said it was neg for estrogen, progesteren and HER2, I said "Great, I like negative!"  He was very quite and just told me to call his office the next week to make an appointment. He knew I was driving somewhere in the mountains alone returning from a business trip and didn't want to tell me. This was on a Friday. On Tuesday I was exploring the web and not sure what to do or who I wanted to treat me and found the triple negative. Up to that time (about 1.5 weeks) I had not even been concerned about this as I had heard most early stage BC was being cured.  I[I had put off talking with a doctor to go on a business trip that could have waited. I just didn't get it].

 

When I found out about TN,I felt just like you and I was devastated.  I was sort of out of it for a while and not able to cry or anything as I explained to my family that I had a different kind but it was okay. The hard part is most people don't know about these cancers and just brush it off by saying "oh they cure most breast cancers now". I would feel kind of out there by myself! [But I wasn't and neither are you!]

 

I interviewed many doctors and most  were straight about the difficulty but noted that chemotherapy is often very effective with these cancers if gotten early. [Except one onc at Duke told me she "might not even treat it".]

I had a mastectomy after finding out that it was TN. My surgeon said I was a "candidate" for a lumpectomy, but that it was my choice. When they performed the surgery, they found an additional 7 mm cancer that had grown in 5 weeks between my biopsy and surgery so I was glad about the mastectomy. TN grows so fast.  My limp nodes were clear. I was told that even though my lymph nodes were clear, I might have a few cells that got into my blood and were busy producing in  my liver, lungs, brain, or bones. So, chemo was required, but not radiation because of the breast tissue being removed and I had clear margins. 

 

The bad thing is that they cannot target any particular chemo especially for TN. I had taxatere and cytoxen and am doing fine. I finished my chemo January 19th 2008. Some residual side effects are noticable by me but not by anyone else. Now, a little over a year later many new treatments are being discovered and that gives me real hope for newly diagnosed patients and for my future if it were to metastasize.

 

You will get through this. Get a doctor that will talk to you and explain the treatment and her reasons. Ask questions, and take someone with you. I too thought about a double mastectomy...my daughter who is an attorney really wanted me to do this. One of her young friends had done so after being diagnosed at age 30.  I was assured that even though it may mean that I am at greater risk for other cancer in the other breast, this is not necessarily going to happen.

 

Hang in there and it will be over soon. I was amazed at how I managed to handle the pain and all the other stuff and you will be too.  A positive attitude is very important. I also read a lot of books on

 

It is good to see you are feeling better.

 

I saw the word "sister".  I am not sure if you have been told about genetic testing but I hope you will consider getting this done if we haven't mentioned it yet.  http://www.facingourrisk.org

Please consider genetic counseling, many triple negs although not all have a brca 1/2 mutation and if positive the family needs to know so that they can be tested.  Also your sister should be vamping up her vigilence with your diagnosis and sharing this info with her doctor.

 

You bet you have alot to live for and alot to do so you are doing the right thing, prepare for the upcoming surgery, line up some help, I hope you have good support around you.

 

We look forward to hearing from you afterwards to see how you are doing and you have our prayers for a quick recovery.

 

 

What wonderful news to read about your friend, finally having a good PET!

I am so happy for her!!

 

No I was not tested for MRSA, this was in 2007 and they may do it now.

I did learn recently my file now has a red flag with letters proclaiming to all in red I've had MRSA so they'll see me coming if I ever have to go back in there, sure hope not.

 

You are right, it is very difficult to tell your family you have cancer.   It isn't ever easy for anyone to have to share this news with their loved ones.

When you have had alot of cancer in the family it even gets more complex if that makes sense, the last thing you want to do is say is it's here, it's back and we certainly don't want to hear it.  I so hate this disease.

 

I just learned a couple of months ago that my only sibling, my sister has been diagnosed with CMK Leukemia.  I am the oldest then her than our children.  Our family has been demolished.

 

Let's hope and pray in our lifetime and especially even more so in our children's lifetime that they find an end to this horrible disease.

 

 

 

You are so right. The surgeon "god complex" Let's see now...breast cancer....oncology....oncology....breast cancer. I do believe they go hand in hand. Looks like a no brainer to me

 

You should have a choice as to who you want to see first. If the oncologist is the one you will be seeing for many years after, she/he is the one I would choose. The surgeon...yeah she/he better get it right and get clean margins, but that onc is the one who will be determining which chemo will save your life.

 

Lori saw the breast surgeon for the mastectomy, and then she had a plastic surgeon, one who does reconstruction for women who had breast cancer. The med and rad onc...ongoing relationship for many years.

 

Lori's onc told a friend that the women should be having mastectomies, as he was seeing many return who had had lumpectomies.

 

As to the MRSA. A friend's father died a few months ago. He had knee replacement, 92 years old. Contracted MRSA when in the local hospital. That was not the cause of death, he had a heart attack. But...about a month ago she received a letter apologizing for the fact that her father had contracted MRSA while a patient in their hopital. Gee, they are finally admitting that they do not practice good infection control? What other revelations will we hear?

 

We know that Pam contracted MRSA while in the hospital. There is not another more germ/bacteria laden place to aquire it than in a hospital.

 

Ok....enough..hugs,

Nancy

 

 

 

 

 

To my friend Caroline fro The Netherlands...I am Nanny 3.5 years from dx....whooppeeee!! That is music to our ears!! Nanny, I was under the impression that there were good cancer treatment centers in CA. Not?

 

I am sure you would not have relocated if you thought they were. I just sent a private message to AC and JC, husband posting for his wife, and told them that I thought CA had good treatments.We have a few members who live in Houston, and the surrounding area. Txhart...another Linda is one.

 

So glad that you have joined and now one more knowledgeable/intelligent/articulate TN gal to cheer all the new gals on.

 

Welcome and please post often

Hugs,

Nancy

 

You are so right also about the support all of the way around.  Also lots of help from family and friends can make a big difference.