Tuesday, August 20, 2019

BCI ( breast cancer index) test- why it is important to me, and why it may be important to other breast cancer survivors

In this blog, I combine two topics: thyroid cancer and breast cancer. I am a " survivor" of both types of cancer, but I usually write many more blogs relating to thyroid cancer than breast cancer. The reason for this, is that I feel that  thyroid cancer is still under- reported, you might say, especially in comparison to breast cancer.

During my nine month check up for breast cancer this year, my oncologist brought up the subject of: "So, how long do you want to take your Letrozole?" For the blissfully uninformed, Letrozole is classified as a aromatase inhibitor type drug, which is used in postmenopausal women who had the hormone receptor positive type of breast cancer. It can be given to premenopausal women who have taken a few years of Tamoxifen, or prescribed as a first line of therapy for postmenopausal women. These types of drugs, Anastrozole and Letrozole, ( aromatase inhibitors) as well as Tamoxifen, are estrogen blocking drugs. They are given to lessen the chance of a recurrence of breast cancer. Sounds great, right? As with any medication given, the benefits versus the side effects for the patient  need to be taken into consideration.

The benefit of Letrozole is that it is very effective( 98.9% in a study cited by the British Journal of Cancer )  in preventing a DR ( distant recurrence- in other words, cancer in another part of the body). When I looked up the drug profile for Letrozole, I found that there are THREE pages of side effects! Sure, some of them are  "minor", and when I was working as a pharmacist, I always told people that in the side effects profile sheet  that now accompanies each drug dispensed, the drug companies have to list every side effect- from major to extremely minor( or rare ,statistically.) I have personally experienced a lot of side effects from this drug. My doctor first prescribed Anastrozole, which I had to stop due to extreme muscle and bone pain. He switched to the Letrozole. Although both drugs are in the same class of drugs, some people have less side effects with one or the other. I do indeed have less bone and muscle pain with the Letrozole. It is still bothersome, but I can tolerate it.

The side effect that is troubling me, is the fact that the aromatase inhibitor drugs, in lowering the amount of estrogen in the body, cause  a negative effect on bone cells. This  can lead to osteoporosis and broken bones. Before I started taking the estrogen blocking drugs, my bone density was great. Now, however, I am considered to have osteopenia, which is just a step behind osteoporosis. I am seeing my endocrinologist in a couple of weeks for my big thyroid cancer check up. She has scheduled a bone density test so that we can see if I am still in the osteopenia stage, or have moved up to full blown osteoporosis. I am doing all that I can myself to try to prevent osteoporosis. I can not take calcium supplements ( I had a kidney stone caused by calcium supplements, and I sure do not want to go there again!) I do take a prescription strength of Vitamin D, once or twice weekly- depending on how much sunlight I am getting. I also try to eat calcium rich foods. I read an interesting study on kidney stones, which I will not report in depth here, but the gist of the study said that the calcium that one gets in foods does not seem to cause kidney stones. Also, I try to walk every day. Weight bearing exercises are good for the bones- think lifting 5-10 pound weights a few times a week.

At my last visit with my oncologist, when he asked me how long I wanted to be on the Letrozole, I honestly did not know what to say. I am four years out from breast cancer. At my next 9 month visit, I will be almost 5 years out and need to make a decision. Quality of life is important. And I am not just talking possible osteoporosis here. I will not mention all of the side effects that I have from this drug, but they are significant to me and do affect the quality of my life. My oncologist suggested a test that may help us determine how long that I could  benefit from being on the estrogen blocking drug. The test is called the BCI( breast cancer index) test and will be performed on a sample of my cancerous breast(s) tissue. I like to think that I am well informed, but I did not know that I had frozen cancerous tissue in a lab somewhere. I am thankful for this, just unaware until now. The test results will take six weeks to get back to the doctor. I asked the nurse for a copy of my report, and she said that it will be mailed out to me. However, the nurse said that my oncologist would also call me on the phone to talk to me about the results. There is a numerical scale that predicts one's chances of DR ( distant recurrence). Tumor size, staging of the cancer  as well as other factors also should factor in on the decision to continue taking an estrogen blocking drug for more than five years, or stop after five years.

The BCI test is fairly new, but has been studied and reported in various well known and prestigious professional journals.( one example is the " Journal of Clinical Oncology 36, abstract," published June 1st, 2018.)  I wanted to write this blog to make others aware of this test. I was not aware of the test until this month. I think that it is good information to have when making a decision concerning how long a person should be on the estrogen blocking drugs. One must work closely with their physician, of course, but ultimately, the decision rests on the cancer patient. Having a test like the BCI can help the patient make a more informed decision. I hate the side effects of the Letrozole, but i certainly do not want a recurrence of my cancer. I had two areas of cancer- three tumors were "stacked" on each other in one area, and there was another area of cancerous cells not related to those tumors. My staging was IIb, according to my oncologist. My oncologist did not recommend radiation, but I had three months of aggressive chemotherapy.  I will consider these factors when I make my decision, as well as my results from the BCI test. I urge breast cancer patients to inquire about this test, if you have not already. It can be another weapon in our arsenal in fighting breast cancer. 


Monday, August 5, 2019

" Well, I won't back down, no I won't back down. You can stand me up at the gates of Hell, but I won't back down.....Hey, baby. There ain't no easy way out. I will stand my ground, and I won't back down" lyrics from Tom Petty's, " I Won't Back Down."

I am afraid that this year, I hit the jackpot of doctor's visits. A couple of weeks ago, I had my yearly pap,etc. test- which was fine.( good results)  Then I had my yearly dermatology ( skin cancer check) because in the past,  I have had a basal cell carcinoma removed from my face, and a squamous cell carcinoma removed from my leg. I used to have to go every six months, but I have "graduated" to yearly visits now. ( also fine- just a few keratoses frozen off).

Tomorrow, I have the dreaded colonoscopy test. Well, I dread it anyway. There is a history of colon cancer in my family, so I have to get a colonoscopy  every five years instead of ten. I honestly and seriously considered skipping this test. But a good friend of my sister's died this year from colon cancer. That gave me pause.... While I am not having any " problems", I also thought about a colleague of mine who went in for a screening colonoscopy at age 50, was not having any symptoms of colon cancer, but in fact did have colon cancer. She had to have surgery and chemotherapy, and is doing fine now, partly because the cancer was diagnosed early. Early diagnosis and treatment is essential to having a good outcome in just about every type of cancer, I think. So, I started fasting yesterday afternoon, and am on clear liquids today. Later this afternoon, I start the dreaded prep- which is probably the worst part of this whole process. My physician will administer Propofol to me during the test, so I will be out for the actual procedure. Interestingly enough, I have had two previous colonoscopies, from a different physician, using the " conscious sedation" method. Remember when Katie Couric  had  her colonoscopy  done live on national TV? I can say that it did not hurt- the doctor gives you a couple of things to relax you, but I was able to watch as the doctor did the procedure on the big screen TV. The main problem with this, and why my current physician will not use the  conscious sedation technique, is that if the patient coughs or sneezes, the intestines can be perforated, and will have to have surgery. No thank you.

On Thursday, yes, this Thursday, I have my big checkup and blood work for my breast cancer. This is the test that makes me panic. I can still  recall the smell of the antiseptic soap as I entered the waiting room and almost get physically sick. I had a tremendous amount of nausea and vomiting during the three months, and a month or two beyond, that I had to have chemotherapy. Strong smells made me so nauseous, and for some reason, the smell of the hand soap in the office was a real trigger for me. I think perhaps it was nausea by association, or whatever, but four years later, I still get sick just thinking about it. I have to take a type of chemotherapy drug to prevent a breast cancer recurrence. This drug has a lot of side effects, and I am not sure if I will get to stop this drug in five years, or if the oncologist will want me to continue it for ten years. The last time that I had my check up, the oncologist said that he would let me know " later" as to how long that I would have to be on this medication. I suppose that I will hear his recommendation on Thursday? I will have to say, that I may decide on my own that five years will be enough( It has been four years so far). One has to consider the quality of life versus the possible benefits. Yes, I listen to my oncologist and his recommendations. But he listens to my side of the story, too.I know that he has a lot of experience and knowledge in this field ( or I would not be a patient of his), but there is, like I mentioned, the " quality of life" issue that must be considered,too.

If I am still around after Thursday, hahahahaha, I have my big thyroid cancer check up on September 5th. I still have these thyroid check ups every six months because, as I have said in previous blogs, I had papillary thyroid cancer with follicular variant, stage 3, two of my parathyroids were cancerous and had to be removed, and although there were no lymph nodes involved per se, both of my main tumors were unencapsulated and diffusely infiltrative. That just means that the tumors had ruptured, and the cancerous contents had spilled out in my neck bed area. Yuck.

I generally do not mind this checkup. I really like my endocrinologist, and she really listens to how I am feeling, and does not just look at the lab work numbers. For three and a half years, my thyroglobulin was elevated, which meant that there was thyroid cancer present in my body somewhere. I got a really big dose of the radioactive I-131 ( 155 milicuries) and my doctor said that sometimes it just took a while for the thyroglobulins to go away. I am very thankful that I did not have to get a second dose of the I-131, because, surprise, it has some pretty nasty side effects, too.

When I was looking over my calendar of events, so to speak, I became rather anxious. I decided that I needed to take these tests one test at a time. I could not think about them all at the same time- it was just too much. Yes, I am thankful for good medical care. I am appreciative of all of the skill and concern that my doctors have so that I can be healthy, and well, just be HERE  for my family and friends. I do practice gratitude on a daily basis. However, sometimes, the testing  feels overwhelming to me. Sometimes it takes every bit of courage and energy that I have just to walk into the doctor's office. ( Any of my doctors' offices. Just pick one..). But as Tom Petty so eloquently put it, " You can stand me up at the gates of Hell, and I won't back down." I have a new granddaughter who was  born at the end of May. I am now a Mimi to four wonderful grandchildren. I love all of my family and I want to be here for them. I need to take care of myself by having these tests done and trying to have a good lifestyle. But as Tom Petty also said, " there ain't no easy way out." I will summon my courage, and have these tests done- for my family as well as for  myself.