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.

August 2009: radiation therapy and shingles

I should never have had radiation. Toward the end of my chemotherapy, I went to see a radiation oncologist for an initial consultation. We discussed my cancer and the genetic attributes. I told him I was planning on undergoing an oopherectomy and bilateral mastectomy. He explained that my case was not clear-cut, due to the fact that I had only one lymph node involvement. Had no nodes been affected, I would not need radiation, period. If there were three or more positive nodes, I would definitely need radiation. One node was not so clear. He told me that his opinion was that I don’t need radiation because of the surgeries that I was about to have; he felt that I was being very aggressive with my treatment and that that was enough. I was so relieved – that’s what I wanted to hear.

Well, my oncologist wasn’t exactly thrilled with that answer. She wanted to take my case to the “tumor board” and get more opinions. She did and then told me that out of 5 radiation oncologists there, 3 said yes and 2 said no – it caused some controversy apparently. She asked me to go to another radiation oncologist for a second opinion and so I did. This time, I was told that, although it’s borderline, I should just do it because I’m young and I have young kids and I should do everything in my power to improve my chances of survival and minimize potential for recurrence.

My Oncologist agreed that I should do everything I could to improve my chances, too. Soooo…reluctantly, I agreed to do it only because I couldn’t think of a good enough reason NOT to. I was to receive 28 sessions of radiation.

The radiation itself was easy, but going 5 days a week was a pain in the ass. Toward the end I was quite sore and raw in a few places in my armpit area. The sore spots in my armpit began to welt but I thought it was just my wounds healing – so did my Oncologist. It started to spread down my inner arm to my elbow and it itched like MAD! I thought I had bed bugs or scabies! A week and a half later I saw my radiation oncologist for a follow up and she took one look at the rash and told me I have Shingles. Apparently no one bothered to tell me that cancer patients sometimes develop shingles from their weakened immune systems. Had I known this, I would have sought treatment sooner for this rash – as it turns out, I found out that shingles is best treated when the medicine is started within 72 hours of the rash showing up. I was well beyond that.

The medicine I was given did not help at all. It itched beyond anything I could even try and explain. After 4 weeks of having this rash, I woke up one morning in serious pain all over and I had swelling in my armpit the size of a tennis ball. I went to the ER and ended up confined in the hospital for a week with a bad Staph infection!! 

When I left the hospital, the rash and itching was not better. The infection was better, but I had to go home with a drain coming out of my armpit; it came out a few days later.

After 8 weeks of suffering, I went to see my Oncologist for a follow-up visit and she, like me, had had enough of this rash! She sent me to see her husband, who happens to be an Infectious Disease doctor, that day. He told me that it looks a lot like Shingles, but he’s never seen nor heard of shingles appearing on the radiation site like the rash I had. He thought it may just be an allergic reaction to the radiation!

He sent me to a dermatologist for a skin biopsy. The dermatologist agreed. She told me that although Shingles can last for several months, it’s the persistent nerve pain that lasts and not the actual rash. This was the first time I had heard that! So she took the skin biopsy and the results came back a week later indicating no sign of shingles, but there was a bacterial infection.

She gave me a topical steroid cream to help the rash and itch (finally something to help the itch!), another topical ointment for the bacterial infection and an oral antibiotic – Amoxicillin. After just two days, the rash started to go away and the itching dissipated! Hallelujah!

I truly believe that the radiation therapy was ‘the straw that broke the camel’s back’ and that had I not done the radiation, none of this shingles/staph infection/allergic reaction crap would be going on – I know I can’t do anything about it now, but I’m really pissed that I decided to go through with the radiation even though I really didn’t feel it was necessary!