Sunday, January 17, 2010

How Did This Happen? Some Theories

The question, "How the hell did I get leukemia after beating a completely different cancer twice?" bounces around in my brain on a daily basis. Now that I've lived with this diagnosis for 3 months, I've settled in on a few possible explanations.

Theory No. 1
The obvious question is whether the first cancer, Adenoid Cystic Carcinoma of the Breast (ACCB) is related to the second, Acute Myeloid Leukemia (AML).

On October 13, 2009, the same day that Dr. Forte found something terribly wrong with my routine blood tests, and only 6 days before I was diagnosed with AML, I received an announcement about a huge research breakthrough from the Adenoid Cystic Carcinoma Research Foundation (ACCRF). A new cancer gene was found by researchers at the Sahlgrenska Academy in Sweden:
The gene causes an insidious form of glandular cancer usually in the head and neck and in women also in the breast. The discovery could lead to quicker and better diagnosis and more effective treatment....

The research group can now show that the gene is found in 100% of these tumours, which means that a genetic test can easily be used to make a correct diagnosis.

“Now that we know what the cancer is down to, we can also develop new and more effective treatments... says professor Göran Stenman, who heads the research group at the Lundberg Laboratory for Cancer Research at the Sahlgrenska Academy. “One possibility might be to develop a drug that quite simply turns off this gene.”

The newly discovered cancer gene is what is known as a fusion gene, created when two healthy genes join together as a result of a chromosome change.

“Previously it was thought that fusion genes pretty much only caused leukaemia, but our group can now show that this type of cancer gene is also common in glandular cancer,” says Stenman.
That last point didn't seem as relevant to me on October 13th as it was on October 19th when I was told that I have leukemia. In fact, Dr. Forte told me after my first bone marrow biopsy that my cytogenetic tests contained fused leukemia cells. Maybe it's a coincidence, but I'm willing to consider the possibility that there's a connection between two seemingly unrelated cancers that are caused by fused chromosomes.

Theory No. 2
A simple review of the ACCB literature clearly demonstrates that chemotherapy is not recommended because ACCB grows too slowly to respond to chemotherapy. My first oncologist didn't take the time to research ACCB, and relied instead on a well known "expert on breast cancer" for my treatment plan. Together, they decided to treat my cancer "like any other invasive breast cancer," regardless of the fact that this was not typical breast cancer, but rather a glandular cancer. I was given 8 rounds of CMF, a cocktail of three drugs. One of these drugs, Cytoxan, is known to cause secondary cancers, the most common of which is AML. According to the American Cancer Society,
The cancer most often linked to chemotherapy as the cause is a type of leukemia called acute myelogenous leukemia (AML).... Studies of patients treated in the 1970s and 1980s have shown an increased risk of AML after certain types of chemotherapy drugs called alkylating agents were used to treat cancers like Hodgkin disease, non-Hodgkin lymphoma (NHL), ovarian, lung, and breast cancer.

Alkylating agents known to cause leukemia include:
cyclophosphamide (Cytoxan®)....
That "expert," when questioned in 2006 about the bad advice he gave my first oncologist in 2000, predictably denied ever recommending CMF. Needless to say, I switched oncologists and started going to Dr. Forte, who understood the nature of ACCB because he made time to do the necessary research. This is an example of why it's so important that we participate in the research process and not rely on one or even two doctors to decide something as life altering as cancer treatment.

Theory No. 3
From 1957 to 1975, Motorola Inc. used the degreasing agent trichlorethylene (TCE) to clean electronic parts made in its south Scottsdale, Arizona, plant. In early 1975, a significant amount of TCE had been dumped into the area around the plant and TCE had contaminated the groundwater. The area was identified as a Superfund site in 1983. My family moved to south Scottsdale, to the middle of the Superfund site, in 1967 when I was 7 years old. I lived there till I was 18. My mother, also a cancer survivor, still lives in that house. I'm told that the number of cancer cases in that area over the last several decades is staggering. (No liability was found in either the personal injury or the property damage class action suits.)

Research shows that AML can be caused by exposure to benzene, and there are plenty of lawsuits to back that up. Benzene finds its way into many Superfund sites because it's used in the manufacturing process of so many products. Who knows if growing up in the middle of the south Scottsdale Superfund site had anything to do with either of the chromosomal fusion-based cancers I've been fighting? It certainly didn't help.

Theory No. 4
All of the above.

Theory No. 5
None of the above.

The question, "How did I get cancer?" is one that haunts all cancer survivors. We wonder if there was something we did wrong, something we should have seen earlier. The fact is, cancer is random. It doesn't discriminate. All I can do at this point is focus on Theory No. 1 -- the new gene discovery that holds the most promise, hope for future answers and possible treatments for the cancers I've been dealt. In the meantime, we are obligated, whenever possible, to share our knowledge, our mistakes, and the resources we've stumbled across in our attempt to navigate these scary waters. Such is our task, as we put aside the question "Why?" and try to discover the good that can come from something so evil.




  1. I'm constantly reminded when I read your posts of the value in being engaged when it comes to the decisions involved in treatments in our own health care. Admittedly, I put great faith in the doctors who, for a lack of a better definition, were/are deemed to be the "Gods" of our survival.

    Like so many other things in life, we were raised to believe they were the most knowledgeable and basically put all our eggs in their baskets. Much in the same way we do with our investments, our cars and our credit ratings. We blindly believe in the process. If there is anything worth learning from your decade of experiences, it is to take hold of your own destiny, ask the tough questions, be smart about your illness and be part of the process.

  2. That, my dear RT3, is my message.

  3. Maybe the radiation from mammograms and ct and pet scans. What other carcinogen has better access to cell DNA? It's the most potent carcinogen there is.

  4. First of all I would like to extend my well wishes to you. I was wondering if you have any information on the illnesses in the South scottsdale area. I grew up there and have always wondered if the health issues I've had since I was a teenager were from that drinking water. I lived there from '79-'89. We always rented so of course I have never received information regarding the issues. Of course they don't post information on resident's health in relation to that water on-line. Thank you and many many well wishes and prayers are being sent your way.

  5. Dear Anonymous: Thank you for your comment. I do have a little information about the class action suit against Motorola. I also work in the legal field, so if it would help you, I can dig around and see what Court documents I can find. My e-mail address is Not knowing your medical history, it's hard to say what that contamination caused, but I'm convinced it's a key player in my cancer history. Take care and thanks so much for contacting me.


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