Monday, April 7, 2008

If You Understand This You Have Completed Breast Cancer 101

Dear Sister,

When you met with your BS did you ask him if you were going to get an SNB? Because if your SNB is positive, then you will have to get a full axillary dissection. They do them with lumps and with masts and you can have a + node with IDC or ILC or even DCIS. The more they do there the greater your risk of LE.

When are you meeting with your onc? Did he have any suggestions for a tx for you? Most of us get A/C or A/C T, but they are still giving CMF for early stage bc. I was glad I was Her- . But since I am now ER+ we are talking about an ooph and then I will start either tamox or an AI. I am a little nervous because I heard the S/Es from the AIs can be pretty tough. But if that is the best way to protect from mets then I have to do it.

Do you know if you will be doing rads?

I get my exchange next month. I am going for the high profile gummy bears. You are doing a DIEP, right?

Take care,

(If you DID understand this, Hello Sister. Did you ever think you WOULD know this when you were first dx'd?)

Thursday, April 3, 2008


This is so important I don't know how I can emphasize it enough - but I am going to try.
Cancer does not discriminate. It knows no color, creed or religion or even sex for that matter because men get it too. But there is a particularly virulent form of the disease that attacks about 20,000 - 30,000 women each year. It is known in the medical world as "Triple Negative" breast cancer.

I have spoken about it before in this blog and on the website. But I will repeat myself to explain exactly what that means. There are many types of breast cancer. Some are fed by the hormones in a woman's body and some are not. Some are given more energy to grow by certain genes, some grow in the milk ducts and some in the milk lobules.

If your breast cancer is fueled by your hormones doctors have discovered that your cancer cells have receptors on them that are sensitive to estrogen and progesterone. That led them to the next obvious conclusion which was, if we somehow turn off the estrogen and progesterone in a woman's body it will not be able to feed the cancer. They do this with drugs such as Tamoxifen, Arimidex, Femara and Aromasin. Now, women who are considered estrogen and progesterone receptor positive have protection from their cancer returning and they are living disease free for a much longer time.

But what about the women who don't have these hormone sensitive receptors? Doctors classify them as "triple negatives." It is a misleading name and should not be used, but they have been using it for a while and it stuck so we are stuck with it. What makes up the trifecta?
1. It doesn't have estrogen receptors.
2. It doesn't have progesterone receptors.
3. It does not have the oncogene known as Her2/nue.
Let me clear that last one up for you. Being Her2 positive is a bad thing. You do not want to be that. It means that your cancer has gene with a protein that promotes cancer to grow. They make a wonderful drug for it called Herceptin. But it is better to not be Her2 positive from the start. Why that is lumped in with estrogen and progesterone is a mystery. The only answer is that estrogen and progesterone receptor negative cancers are impervious to the effects of the drugs developed for their estrogen and progesterone receptor positive counterparts such as Tamoxifen and Arimidex and there is no need to administer Herceptin if the cancer does not carry that protein, so they call it "triple negative." It is a dumb name.

Semantics aside, triple negative cancers are more aggressive that their positive cousins. This means they grow faster and spread faster. It also means chemotherapy works better on this particular form of cancer because chemo attacks the rapidly dividing cells and nothing divides more rapidly than estrogen and progesterone receptor negative cancer cells. This is a very good thing.

Another positive is that the longer a woman goes disease free, the greater her chances are of her cancer NEVER returning. The positive people cannot say that because their tumors grow slowly and can show up again 10 years later. With the triple negatives, if your tumor is going to come back it will do so right away and not hang around for years. SO, if you are able to successfully rid your body of it you can beat this cancer. Forever.

Why did I start this post pleading for African American women to read it? Because you are the prime target for triple negative disease. If you are going to get breast cancer you are more likely going to get triple negative than the positive kind AND you are going to get it YOUNG.

The American Cancer Society has done great things around the world for people with all types of cancer. But they have done one very harmful thing: Telling women to get their first baseline mammogram at the age of 40. If you are African American you need to get your first baseline at 30 and be checked yearly. NO EXCUSES. Why? Because the EARLIER YOU CATCH THIS DISEASE THE GREATER YOUR CHANCES ARE OF BEATING IT. FOREVER.

I just lost my dear friend, Ferne, to this disease. She had never had a baseline done and she had a very aggressive form of the disease. It took her life in less than two years. This did not have to happen. I was diagnosed in 2001 with triple negative disease and it was found to be highly aggressive and heading for the chest wall. But because it was found early I am still here to write to tell you to learn from me. I got lucky because I have a gynecologist who insisted I get a baseline at 35. My cancer was found because of that baseline a couple of years later- BEFORE I was 40. There was a small change detected by the radiologist that was not there on the baseline and that is how they knew something not right in my breast. Had I waited until I was 40 to have my baseline like the ACS recommends, I would be in very bad shape.

Recently I was having a long talk with a 30 year old African American woman who is a physical therapist for breast cancer patients. She had never heard of triple negative disease. She had no idea what it does to African American women. She does now. And she is now getting a baseline done and is urging all her friends to as well.

Tell your friends. Tell your sisters. Tell anyone who will listen. There is an entire generation of truly wonderful women who are dying out there and we have to stop it. NOW.

There is a foundation that has dedicated its mission to Triple Negative Disease. I urge ALL of you to visit them. They are making a difference. And for women who were told they had the "bad" cancer, the "triple negative cancer," this difference is long overdue and it is a Godsend.