Pending Testing Results Are All Back
Well, I had my third chemo treatment this afternoon. The movie of choice today was "Soapdish", a comedy from the early 90's that neither Bo nor I had seen before. It was a parody on soap operas, and it appealed to my sense of humor, and Bo enjoyed it too. Three stars.
I actually had an appointment with the oncologist today, so she came into my treatment room for the exam. The genetic test results had come back. About 10% of breast (and ovarian) cancers are hereditary which means that a person has inherited a mutated gene from one or both parents. (Actually half of all women who have the mutation inherited the risk from their fathers, which sounds surprising, but from a genetics perspective makes total sense since half of the genetic material comes from the father.) It doesn't mean that the person has inherited cancer, it means the person has inherited a higher risk of developing that particular type of cancer. (Women with a BRCA mutation have a 33 - 50% risk of developing breast cancer by age 50 and a 56 - 87% risk by age 70.) Testing negative doesn't mean there is no risk, just that there is no increased risk, based on family history. A simple blood test analyzes two specific genes, BRCA1 and BRCA2 for the genetic changes or mutations. These two genes are known to help prevent breast and ovarian cancers by suppressing abnormal cell growth, and the mutation inhibits the genes from doing their intended duties.
I must pause here and give credit to the pamphlet "Beyond Risk to Options" published by Myriad Genetic Laborotories for the information contained in the above paragraph.
In my case, my grandmother and mother were diagnosed with breast cancer at the age of 40. I had just turned 41. We all had cancer in our right breasts. In a way, I had always thought of breast cancer as my fate. (The metaphysical implications of all this are quite intriguing...) So, I was stunned to learn today that I did not have the known genetic marker for either the BRAC1 or BRAC2 genes. Whoa! Wait! What? You mean? Huh?????
Okay, so what does that mean? Well, from a treatment standpoint, I now have a decision to make. Had the test come back positive, the recommended course of action would have been a double mastectomy and ovary removal. Now, it is more ambiguous. I will follow up with my doctors and will research data myself to better understand risk of recurrence in the other breast and the probability of ovarian cancer following a pre-menopausal breast cancer diagnosis. As my friend, Angelia, put it tonight, "The good news is that at least you have a decision now." Ahhh, yes, but I don't like making decisions. Decisions can be soooo hard to make sometimes. Just ask Bo what Friday nights at our house are like when we are trying to decide where to go out to eat!
The other good news is that I can stop beating myself up for not being proactive and having the genetic testing done earlier when preventative action (prophylactic breast removal) could have been taken prior to getting cancer. I have done a really good job of not looking back and instead focusing on the present and what needs to be done to ensure a healthy future. Nonetheless, I am human, and I have put some blame on myself for not having been more of an advocate for my own health when it came to breast cancer. And as my yoga instructor, Joy, pointed out this evening, tongue-in cheek, of course, "Why miss a good chance to flog yourself?" My thoughts exactly! You will be happy to know I stopped flogging myself on that particular issue at 3:30 p.m. today. (Ever since this experience began, I have really done a good job of reducing the self-flagellation in general, too.) Had I had the genetic testing, it would have shown I didn't have the mutations, so I would not have had my breasts removed, and I would still be where I am today (metaphysics aside). It may have even given me a false sense of security about it that may have reduced my own vigilance.
Now what is very interesting is that I did test positive for an unidentified mutation on the BRCA2 gene that has only been found in 19 other families among all the people tested by Myriad Labs. I am an anomoly! I am special. I am a special anomoly. (Dr. P. asked me if I had any mystery ancestry in my genes because 48% of those 19 families were of Latin American or Caribbean descent... Since I am from Massachusetts with French Canadian ancestry, I doubt the possibility of skeletons in this family closet.) Dr. P. couldn't offer any other information on this, but did say it doesn't necessarily mean that I was at an increased risk for breast or ovarian cancer; they just don't know what the relevance is at this point. For that reason, the mutation is being studied, and Myriad offered to test my Dad for free, if he was willing, so they would have more data. I spoke to Dad tonight, and he is going to have it done. The Myriad pamphlet states, "It is also important to note that while BRCA mutations are associated with most hereditary breast and ovarian cancers, there are other genetic causes of these cancers, too. Some are known, some have yet to be discovered." So I guess I will research the other genetic links and use what I learn to help me when I am at the point of making the DECISION.
The second test we had been awaiting results was the FSH (fish) test which indicates whether or not the cancer is the aggressive type or not. An initial test came back earlier which showed I did not have the aggressive type, but Dr. P. wanted to confirm that result with a more accurate test. The outcome of the test determines if the patient is placed on Herceptin, a drug that has shown very promising results in women with the aggressive form of cancer. The great news is that I again tested negative for the aggressive form. Woo hoo!
The next piece of positive news came when Dr. P. actually felt the tumor. She believes it feels softer and is shrinking. I thought so too, but I have been feeling it every day, so the changes are less obvious to me. I had told Bo I thought it was smaller and softer, but I wasn't sure if that was wishful thinking on my part or not. Some women respond so well to the chemo that the tumor actually disappears. It would appear that mine is responding well after the first two treatments, and Dr. P. said the surgical outcome is much better when this occurs. Big sigh of relief. She is going to schedule me for more imaging (either ultrasound or MRI) following the next treatment. If those results confirm that the tumor is shrinking, then I will continue with chemo for four more treatments before I have surgery.
So there you have it. Since the time of initial diagnosis when the lack of information painted a potentially grim picture, everything has come back very positive. I attribute that to a few things, but especially to all of the love, prayers, healing thoughts, and positive energy that is coming my way from all over the country from family, friends, clients, and complete strangers in churches and prayer circles from Florida to Massachusetts. My friend, Linda, has advised me that she has her entire church in Georgia praying for me, and knowing Linda's, ahhh... persuasiveness, I believe this. My friend, Judy, has also assured me I now have the Jewish connection taken care of. Thank you for all helping me heal, and in in ways beyond just the physical. But those reflections are best saved for another posting.
I actually had an appointment with the oncologist today, so she came into my treatment room for the exam. The genetic test results had come back. About 10% of breast (and ovarian) cancers are hereditary which means that a person has inherited a mutated gene from one or both parents. (Actually half of all women who have the mutation inherited the risk from their fathers, which sounds surprising, but from a genetics perspective makes total sense since half of the genetic material comes from the father.) It doesn't mean that the person has inherited cancer, it means the person has inherited a higher risk of developing that particular type of cancer. (Women with a BRCA mutation have a 33 - 50% risk of developing breast cancer by age 50 and a 56 - 87% risk by age 70.) Testing negative doesn't mean there is no risk, just that there is no increased risk, based on family history. A simple blood test analyzes two specific genes, BRCA1 and BRCA2 for the genetic changes or mutations. These two genes are known to help prevent breast and ovarian cancers by suppressing abnormal cell growth, and the mutation inhibits the genes from doing their intended duties.
I must pause here and give credit to the pamphlet "Beyond Risk to Options" published by Myriad Genetic Laborotories for the information contained in the above paragraph.
In my case, my grandmother and mother were diagnosed with breast cancer at the age of 40. I had just turned 41. We all had cancer in our right breasts. In a way, I had always thought of breast cancer as my fate. (The metaphysical implications of all this are quite intriguing...) So, I was stunned to learn today that I did not have the known genetic marker for either the BRAC1 or BRAC2 genes. Whoa! Wait! What? You mean? Huh?????
Okay, so what does that mean? Well, from a treatment standpoint, I now have a decision to make. Had the test come back positive, the recommended course of action would have been a double mastectomy and ovary removal. Now, it is more ambiguous. I will follow up with my doctors and will research data myself to better understand risk of recurrence in the other breast and the probability of ovarian cancer following a pre-menopausal breast cancer diagnosis. As my friend, Angelia, put it tonight, "The good news is that at least you have a decision now." Ahhh, yes, but I don't like making decisions. Decisions can be soooo hard to make sometimes. Just ask Bo what Friday nights at our house are like when we are trying to decide where to go out to eat!
The other good news is that I can stop beating myself up for not being proactive and having the genetic testing done earlier when preventative action (prophylactic breast removal) could have been taken prior to getting cancer. I have done a really good job of not looking back and instead focusing on the present and what needs to be done to ensure a healthy future. Nonetheless, I am human, and I have put some blame on myself for not having been more of an advocate for my own health when it came to breast cancer. And as my yoga instructor, Joy, pointed out this evening, tongue-in cheek, of course, "Why miss a good chance to flog yourself?" My thoughts exactly! You will be happy to know I stopped flogging myself on that particular issue at 3:30 p.m. today. (Ever since this experience began, I have really done a good job of reducing the self-flagellation in general, too.) Had I had the genetic testing, it would have shown I didn't have the mutations, so I would not have had my breasts removed, and I would still be where I am today (metaphysics aside). It may have even given me a false sense of security about it that may have reduced my own vigilance.
Now what is very interesting is that I did test positive for an unidentified mutation on the BRCA2 gene that has only been found in 19 other families among all the people tested by Myriad Labs. I am an anomoly! I am special. I am a special anomoly. (Dr. P. asked me if I had any mystery ancestry in my genes because 48% of those 19 families were of Latin American or Caribbean descent... Since I am from Massachusetts with French Canadian ancestry, I doubt the possibility of skeletons in this family closet.) Dr. P. couldn't offer any other information on this, but did say it doesn't necessarily mean that I was at an increased risk for breast or ovarian cancer; they just don't know what the relevance is at this point. For that reason, the mutation is being studied, and Myriad offered to test my Dad for free, if he was willing, so they would have more data. I spoke to Dad tonight, and he is going to have it done. The Myriad pamphlet states, "It is also important to note that while BRCA mutations are associated with most hereditary breast and ovarian cancers, there are other genetic causes of these cancers, too. Some are known, some have yet to be discovered." So I guess I will research the other genetic links and use what I learn to help me when I am at the point of making the DECISION.
The second test we had been awaiting results was the FSH (fish) test which indicates whether or not the cancer is the aggressive type or not. An initial test came back earlier which showed I did not have the aggressive type, but Dr. P. wanted to confirm that result with a more accurate test. The outcome of the test determines if the patient is placed on Herceptin, a drug that has shown very promising results in women with the aggressive form of cancer. The great news is that I again tested negative for the aggressive form. Woo hoo!
The next piece of positive news came when Dr. P. actually felt the tumor. She believes it feels softer and is shrinking. I thought so too, but I have been feeling it every day, so the changes are less obvious to me. I had told Bo I thought it was smaller and softer, but I wasn't sure if that was wishful thinking on my part or not. Some women respond so well to the chemo that the tumor actually disappears. It would appear that mine is responding well after the first two treatments, and Dr. P. said the surgical outcome is much better when this occurs. Big sigh of relief. She is going to schedule me for more imaging (either ultrasound or MRI) following the next treatment. If those results confirm that the tumor is shrinking, then I will continue with chemo for four more treatments before I have surgery.
So there you have it. Since the time of initial diagnosis when the lack of information painted a potentially grim picture, everything has come back very positive. I attribute that to a few things, but especially to all of the love, prayers, healing thoughts, and positive energy that is coming my way from all over the country from family, friends, clients, and complete strangers in churches and prayer circles from Florida to Massachusetts. My friend, Linda, has advised me that she has her entire church in Georgia praying for me, and knowing Linda's, ahhh... persuasiveness, I believe this. My friend, Judy, has also assured me I now have the Jewish connection taken care of. Thank you for all helping me heal, and in in ways beyond just the physical. But those reflections are best saved for another posting.
posted by Mary @ 8:55 PM
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