Monday, October 4, 2010

Breast Cancer Awareness Month - And I Have a Rant...

Why does everyone think that just because I survived breast cancer, I can do just about anything? “My goodness, you have overcome so many other challenges – this should be a piece of cake for you” is what I hear. All. The. Time. Just because I was unlucky enough to have breast cancer and have to go through the treatment to get rid of it does not mean that I’m strong, or that I have will-power, or that I can do anything that needs to be done. Seriously?!

Sure, I do consider myself to be a strong person – cancer has nothing to do with that. Some days I still have a hard time comprehending the fact that I had breast cancer. Don’t get me wrong, it was devastating news to hear at thirty seven years old, but it almost didn’t seem real. I did a lot of crying and I did a lot of suffering, but in hindsight it seems like it was just a really bad cold or flu. I didn’t ask for it, but I got it. All I could do was fight it and wait and eventually it went away. Chemotherapy drugs are a bit stronger than most cold medicines and the many surgeries I had were quite extreme; radiation therapy was like several long days at the beach that left me burned, tired and with a permanent mystery rash called “radiation recall” which, it seems, may just want to stick around for the rest of my life! It was all part of the treatment plan to get rid of the cancer, not really a choice I actively made.

When I was diagnosed, my daughters were 18 months- and 3 years-old. The way I saw it, I had no choice but to go through whatever I needed to go through in order to beat it and be able to watch my daughters grow up. I. Had. No. Choice.

So when I’m trying to “accomplish” something like losing weight, which is a choice that takes a lot of work and a lot of commitment and a lot of patience, don’t tell me that it should be a piece of cake after everything I’ve accomplished! It’s not! I survived cancer. It was hard and life sucked really badly for over a year. I did it because I had to. I didn’t have a choice except to live or die and that’s not the same. In some ways, the battle to lose weight is - and may continue to be – harder than cancer! Cancer was in a way easy to fight because I did not have a choice if I wanted to live. It was hard, but it wasn’t a lot of work (like trying to lose weight is.) I’m tired of people thinking that I can accomplish anything because of what I’ve accomplished by battling cancer.

Saturday, August 7, 2010

my cancer saved my mom's life, even though it almost killed her!

My cancer saved my mom’s life, even though it almost killed her. That’s how she feels, anyway. She does, however, have a valid point.

She was first diagnosed in 2002, at 52 years of age. No one talked about genetic testing then. No one talked about red flags. Because she was diagnosed after 50, it was just thought to be a sporadic cancer, especially since there was no family history; she was the first.

There are a few factors that could possibly point to hereditary cancer, they are: multiple family members with cancer; early age of onset; multiple cancers in the same individual; occurrence of rare cancers; and Ashkenazi (Eastern European) Jewish heritage. My mom and dad are both of Ashkenazi descent.

No one told any of these factors. No one told us that there was a genetic test available. When I told my OB-GYN that my mom had been diagnosed with breast cancer, she said I didn’t need to worry about getting mammograms until age 40.

When I was diagnosed, I was 37. That, in and of itself, was a red flag. Add to that the fact that I had the family history, and the Ashkenazi heritage – no one hesitated to discuss genetic counseling and testing with me. Why must they wait until someone already HAS cancer!

Of course I chose to be tested and the result was positive for a BRCA2 mutation – the “Jewish Panel” they call it. I’ll get into what this means shortly, so keep reading.

Genetic testing isn’t cheap; it costs around $3,000-$5,000. Most insurance companies will not pay for it unless there are those significant red flags. Even though my mom had one red flag, given her age at diagnosis and lack of family history, her insurance company would most likely not have paid for a genetic test.

My mom went to her Oncologist with my results and she was scheduled immediately for genetic counseling and testing. Once I was diagnosed, however, her insurance company agreed to pay for the test without a problem. Her results were positive for a BRCA2 mutation – surprise! Also, she was scheduled for a breast MRI to have a baseline. That MRI showed a 3mm mass that was of slight concern, but the doctors told her they’d recheck it in a few months.

We both chose risk-reducing surgery. We both decided to undergo a bilateral mastectomy with reconstruction and a bilateral salpingo oopherectomy, or removal of ovaries and fallopian tubes. The removal of the ovaries and tubes was a no-brainer for both of us. Ovarian cancer is known as the “silent killer” because it often goes undetected until it is too late.

My mom had her oopherectomy surgery right away as I started chemotherapy. I then had my bilateral mastectomy and reconstruction, while she waited so she could help take care of me. Once my recovery was manageable, she was ready to have hers.

So about six months after that baseline MRI, she was ready for surgery and was sent for a pre-op MRI. The mass had grown to 9mm. The doctor said that nothing good grows from 3mm to 9mm in only 6 months. We knew it was bad news, but were also relieved that at least she was already scheduled for the surgery and that the tumor will be coming out. By the time she had the surgery, the tumor had grown to 1.2 cm. It was malignant and was a different kind of cancer than what she had had the first time. She’s currently going through chemotherapy.

Three weeks ago, I had my ovaries and tubes removed. I am in remission. My mom will be a two-time survivor.

The moral here is that if my mom had received the genetic test when she was first diagnosed with breast cancer in 2002, this may have turned out very differently. Had she had the test, it would have showed the mutation, then my sister and I would have had the test and I would have known way before I ever got cancer that I was at risk (by the way, my sister was tested and does not have the mutation). My mom and I would then have discussed risk-reducing surgery, and if we chose to do that, it could have prevented me from ever getting cancer and my mom from getting cancer a second time. However, that’s not the way it happened and it ultimately took my getting cancer to trigger the genetic testing. Without that, my mom may not have found that new tumor until it was too late. Therefore, even though it nearly killed my mom to find out that her daughter had cancer, it saved her life.

My mom’s doctor never even talked to her about genetic testing. Doctors need to be more aware and open to all possibilities with the care of their patients. And insurance companies need to be more willing to pay for testing when there’s the potential to save hundreds of thousands of dollars for cancer treatment.

September 20, 2009: PET scan led to diagnosis of hypothyroidism - or - yay, another disease!

Four weeks ago I had a PET/CT scan done. It was ordered by my radiation oncologist, standard procedure at the end of treatment. A PET scan, basically, looks for cancer in the body – from the neck down.

It showed some “activity” with my thyroid. No masses anywhere, though – good news! But what the heck is going on with my thyroid now, I wondered. Something else to worry about. Cancer?

I saw my oncologist a week later and she said it’s not cancer, but it’s something, so let’s do a thyroid function test (a blood test) and see. She also told me that thyroid problems have been known to occur from radiation. Just my luck!

She called me a couple of days later and said that the blood test confirmed that I have hypothyroidism. She suggested I schedule an appointment to see an endocrinologist, and so I did. She said that hypothyroidism could be transient, but it could also be a lifelong problem, and is most often associated with fatigue and weight gain – GREAT!

Thyroid function tests looks at three thyroid hormones: T3, T4 and TSH. While my T3 and T4 are within normal limits, the TSH is high. The normal range is 0.40 – 4.50 and I mine is 16.99.

Now I’m being told that I have something else wrong with me – because apparently breast cancer and all the other crap I’ve had to go through just wasn’t enough on my plate!

I’m trying really hard not to dwell on it, but I was given the choice of whether or not to get radiation therapy because my case was borderline and the doctors were torn. I chose to do it even though I didn’t want to because I could not think of a good enough reason not to do it. I should have gone with my gut! Everything that’s happened to me since completing radiation therapy is my reason to say no to the choice of radiation or no radiation – too bad I didn’t know this before I made my decision.

September 2009: finally had my oopherectomy - hellooo hot flashes!

Finally had my oopherectomy. My ovaries and tubes are gone. My risk of getting ovarian cancer now is greatly decreased. The surgery and recovery were a piece of cake compared to my mastectomy surgery. This surgery was laparoscopic and outpatient. I arrived at the hospital at 5:45 am and I was home by 3:00 pm. No nausea from the anesthesia. All went smoothly and only a couple small pieces of surgical tape on my belly from the tiny incisions, which he made right on the scar from my TRAM reconstruction surgery. Not that I care anymore about scars, I have so many now!

Hello menopause! The only side effect I’ve been feeling since the surgery is an increase in quantity and severity of hot flashes. Since I started chemotherapy I had been having hot flashes (chemo can sometimes send you into menopause, or as some call it, “chemopause”, but it can be temporary) and I kind of started getting used to them, but they had been getting less and less frequent.

The hot flashes that I experience now are worse – hotter and longer lasting. Pretty annoying, but not impossible to live with. Hopefully they will eventually go away.