Thursday, March 24, 2011

A Test of Patience: My Very Personal Journey Through Triple Negative Breast Cancer

From everything you have heard about breast cancer, from the risk factors to treatment to prognosis, you are probably not getting the complete picture. There are many different types of breast cancer, and most women are lucky (well, if you could call anyone with cancer lucky) to get the most common form, estrogen positive breast cancer. This most common form coincides with all the typical risk factors, such as early menses, late childbirth, late menopause, hormone replacement, or anything that would increase your lifetime exposure to estrogen. Prognosis is good if caught relatively early (Stage 1 or 2) and there are all sorts of treatments available because it is easy (well, again, easy in the scope of breast cancer treatments) to reduce estrogen in the body.

With triple negative cancer, everything you thought was true now isn’t. This cancer has no hormone receptors, which means that we have no clue how it grows. We have only known about this cancer for a few years, but researchers are working frantically on trying to understand what exactly makes it grow and what risk factors are causing it. There are a few groups who have a tendency to get triple negative breast cancer: African Americans, Hispanics, Ashkenazi Jews, and young pre-menopausal women with positive BRCA mutations. Obesity has found to be something that triggers it, along with a high fat diet. A recent study was just published saying that those who have had no children have the lowest risk of developing triple negative breast cancer, while those who have had more than 3 children are at the highest risk. Pregnancy seems to spark the growth of this type of cancer. African American women have the highest death rates from breast cancer because they are getting more triple negative cancer, and since most African American women are less likely to get their yearly mammograms, their cancer is found too late, usually when a lump is found and at this point, it is much too late. It is a very sad fact for some women that they don’t have access to health care and must be made to suffer for it.

The main difference between triple negative and estrogen positive breast cancer is that triple negative is highly aggressive and is much more likely to metastasize, and it metastasizes fast, usually 1-3 years after diagnosis. Once it does metastasize, the patient is usually given only 9 months to live because it usually goes right to the bones. Estrogen positive breast cancers are less aggressive and take longer to metastasize, therefore most tumors would not need chemotherapy unless very large. Also, there is a drug called tamoxifen to hold it at bay. For triple negative breast cancer, there is no such drug. So, for those with tumors greater than 5 mm., chemotherapy would be considered in that chance that those metastasizing cells would take route somewhere far from the breast. Even so, chemotherapy is more effective in triple negative cancers, but not 100%. There are those who fall through the cracks, trying everything and ending up dying anyhow.

Good news is that there is a tidal wave of research being done right now on different markers, enzymes, and inhibitors that might play a role in its growth. Adding this to the increased emphasis on yearly mammograms and genetic testing, these tumors are found sooner, like in my case. Another good thing is that they are less likely to recur after 5 years, unlike its estrogen positive counterpart. So, once it is killed the first time, you are unlikely to see it ever again.

In my case, my tumor was found accidentally. When I had my yearly mammogram in December, they found some calcifications which are a warning sign of DCIS (Ductal Carcinoma In Situ), a form of breast cancer completely confined by the duct and not able to go anywhere else. I had my first lumpectomy in January to remove the area of DCIS and within this area, they found a 3 mm tumor. This never happens. Triple negative tumors are very rarely found this small because they would not be felt or seen on mammogram. I am so, so lucky and have found that there are not many women like me in the world (I’ve been going onto breast cancer discussion boards to reach out to anyone out there and have only found a handful). Plus, what is even more puzzling is that I am not Black, Hispanic, Jewish, and I did not test positive for genetic testing. The only risk factor I had was obesity. Since cancer is a great motivator, I have lost 30 pounds so far. My doctor wants me to get down to the bottom of my weight range, so I have at least 30 more to go-my own personal form of chemo.  also, my diet should be no more than 20% fat, which is even harder ot accomplish than weight loss.
Well, the day I received my pathology results was the day I got on the worst rollercoaster ride in the world (and I usually love rollercoasters!). I went from having a Stage 0 breast cancer to a Stage 1a triple negative breast cancer. At first, I thought I would need chemo and mastectomy. I ordered up my wigs and hats and got ready. Then I was sent for a second opinion at a large cancer institute and found that chemo isn’t considered until the tumor is 6 mm, and they said I shouldn’t need a mastectomy. I quickly cancelled my surgery date, then had a third opinion to be sure.

So, here I am today. A week after my re-excision (which was completely pain free, by the way) and I am happy to say that my second pathology report says that there were no abnormal cells found! My surgeon explained to me that my body killed all the cancer cells that were left in the process of healing and inflammation from the surgery. So, I get to keep my breast and will be starting 7 weeks and 1 day radiation next week. I am getting off this crazy rollercoaster and am ready to get on with my life. My only hope is that I never have to look breast cancer in the eye again because if I do and it is triple negative breast cancer, it won’t be so easy the second time. That said, I will be welcoming my radiation treatments with open arms. I will rejoice in all of it, the burning, blistering, and fatigue and anything else that comes up, because I will know that those little bastards will burn, and burn, and burn. So, bring it on! I am ready.

By the way, there are all kinds of journeys and most are exciting and new.  This is one journey I did not want to be on.

Sincerely yours,
The Wingchair Traveller

p.s. Just a note to those of you who are visiting my blog for the first time and are on your own journey through breast cancer. Please peruse my recent posts because there may be some things that I have written that will touch and inspire you as you go through all the emotion and turmoil that only cancer can bring us. Also, don't be afraid to comment on any of my posts to share your own stories. I'd love to hear them!

4 comments:

Avid Reader said...

You aren't kidding about that being a roller coaster ride. I'm so happy for you that they were able to catch it early and that you won't have to have chemo or a masectomy. I'll be praying for you and I hope this is something that you never have to deal with again. It is wonderful that you've been reaching out to others. I'm sure that's been really encouraging to them. Thanks for sharing your story!

TheWingchairTraveller said...

Hi Again, Avid Reader! I wanted to post something before I jump right back into blogging. I've really missed it and missed reading others' blogs as well. I feel that i need to "take the torch" so to speak and get the word out in some way. another issue that I am finding important and very related to cancer is the state of our food system, so stay tuned for a book/film review coming up.

Ellie said...

Wow, that is an amazing story of life. Thank you for sharing that with us. I am glad you are fine. Those days of not know must have been so difficult. Thank good we have such a wonderful hospital in this area. I have spent my fair share of time there :)

TheWingchairTraveller said...

Thank you so much, Ellie. It has been a rough journey, but almost through the worst of it :)