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.

August 2008: breast cancer treatment plan and start chemotherapy

Okay, moved to Florida and getting settled in. Saw my new oncologist and the plan is a 3-drug program: start with two, A & C – Adriamycin & cytocin – four treatments every 2 weeks. Followed by Taxol, weekly, for three months. Total of 6 months of chemotherapy.

I had a port surgically implanted in my upper right chest area for the chemo; it saved my veins from having to be punctured every time with an IV.

I started chemo in September 2008. It was really horrible. It hit me every time about three hours after treatment ended and it lasted about 10 days. I felt tired, dizzy and nauseous constantly. It was horrible. And it was cumulative, even though the doctor said it would not be. It was so bad that I refused to have the 4th and final dose – I just couldn’t take it. I told the doctor that I felt as though I should be admitted to the hospital to have this chemo. It was just too much for me. I was going through this hell and had to take care of my girls, too, and it was just so hard.

Forgot to mention, my hair started to fall out on day 13, the day before my second round, so I had Chris just shave it all off right away. Why bother going through it gradually? He didn’t realize how emotional it would be for me and he just laughed. The girls took a couple of days to get used to it, but they handled it pretty well. I chose to use a scarf to cover my head; the wig that I had purchased beforehand was too itchy and hot.

While I took a few weeks off, I found a new oncologist at a breast cancer center much closer to home. I was a great place. I started Taxol there and it was like night and day compared to the A/C. I was tired on the day I received the taxol, but that was just from the Benadryl that they give you to avoid allergic reactions, but that was it. Actually, I often felt exhausted a few days later because I felt so good that I was doing too much. I kept forgetting that my body was still receiving chemo and going through a lot and I shouldn’t over-do it.

My hair started to grow back a few weeks before I finished the Taxol. A few weeks after I finished the Taxol, my eyebrows and eyelashes started to fall out!

late July, 2008: genetic test results & statistics

Two weeks after the lumpectomy surgery, I went in to see the genetic counselor for my test results. She told me that my blood test came back positive for carrying the BRCA2 gene mutation. I knew it was a possibility, but I didn’t think it would be so. I thought my cancer was just an unlucky fluke.

My first thought went to my babies – this means that they each have a 50/50 chance of also having it; what a horrible feeling to know that I did this to them. Even though I had no clue I had it, I feel so guilty. At least they’ll grow up knowing and being vigilant about it so they can remain healthy and hopefully they’ll never ever get this. My poor babies. They don’t even have a clue how serious what I have is, but I guess it’s better that way. I’ll make it though this hurdle, too.

When I saw the surgeon next she highly recommended I have a bilateral mastectomy and oopherectomy to reduce my risk or recurrence or of getting a new cancer.

Here are some facts about cancer and BRCA2 gene mutations:

For most people who get cancer, the mutations in the genes happen at random and do not run in families. This is referred to as sporadic cancer. However, in some families, mutations that increase the risk for cancer can be passed down from one generation to the next. These types of cancers are referred to as hereditary cancers. Approximately 5% to 10% of breast and ovarian cancers are associated with inherited mutations in cancer susceptibility genes.

BRCA2 mutations lead to markedly increased lifetime risks for breast and ovarian cancer. Although the exact level of risk can vary among and within families, the current estimates of cancer risk for individuals who are positive for mutations in BRCA2 are:

• Risk of breast cancer (in women) up to 34% by age 50, up to 85% by age 80

• Risk of breast cancer (in men) up to 7% by age 80

• Risk of second breast cancer in women up to 50% by age 70, up to 12% risk of primary breast cancer within 5 years of the first

• Risk of ovarian cancer up to 2% by age 50, up to 27% by age 80

• Risk of other cancers (prostate, melanoma, pancreatic) may also be increased above the general population

BRCA mutation carriers have the following management options available:

• Healthy lifestyle – a high fiber, low fat diet and regular exercise, alcohol only in moderation, no tobacco products. It’s not yet known to what effect, if any, lifestyle factors may have on hereditary breast and ovarian cancer susceptibility. However, they may benefit many aspects of a person’s overall health.

• Surveillance & screening – for breast cancer in women, mammograms, clinical breast exams and self-breast exams on a regular basis.

• For ovarian cancer – pelvic exams every 6 to 12 months, as well as transvaginal ultrasound, and annual CA-125 blood test. Currently, there is no evidence to prove that these tests are effective in reducing ovarian cancer mortality.

• For pancreatic cancer – reports indicate increased risk in families with BRCA2 mutations; however, there currently are no proven screening methods for pancreatic cancer.

• Risk reducing surgery (for breast cancer) – prophylactic mastectomy. Studies of the effect of risk reducing mastectomy in women with BRCA1 & 2 mutations report that the surgery decreases the risk of breast cancer by 90%.

• Risk reducing surgery (for ovarian cancer) – prophylactic salpingo-oopherectomy (removal of the ovaries and fallopian tubes). Studies of women with BRCA 1 & 2 mutations who underwent this procedure report a risk reduction in the range of 95% or more. This procedure performed on women before menopause would also reduce the risk of breast cancer.

• Chemoprevention (for breast cancer) – several chemotherapeutic agents such as Tamoxifen and Raloxifen may have a role in reducing risk of breast cancer in high-risk families.

• Chemoprevention (for ovarian cancer) – birth control pills reduce the risk in the general population. One study reports that this effect may also apply to carriers of BRCA 1 & 2 mutations, in whom the risk may be reduced by as much as 50%.

July 10, 2008: post lumpectomy surgery

Lumpectomy surgery was 3 days ago. It went well, I guess. Coming out of the anesthesia wasn’t fun. I was so dizzy and just felt like passing out. I couldn’t sleep while in recovery because there was so much noise in the hospital. Why do they have to be so noisy when there are so many sick people around that need to rest? I don’t remember much; I don’t even remember going into the operating room or the moment I woke up in recovery. I just remember being in a lot of pain and being very dizzy.

My surgeon visited me after the surgery to tell me that it went well, but that the sentinel node biopsy was positive for signs of cancerous cells, so she had to go ahead and do the axillary node dissection. Scary. She said that the pathology report will indicate how many nodes were removed.

I felt much better once I got home that evening. It was great to see my babies!

It took a good day and a half to get the pain medicine steadily into me, and it has not completely taken the pain away. I came home with a drain coming out from under my arm and it is so uncomfortable.

Moving my arm hurts a lot, but I can’t just let it hang down because then it pushes on the drain and that hurts, too. The back of my arm is completely numb and I keep getting sharp, burning pains inside my arm. The doctor said that it’s normal because of the nerves that she had to cut through to get to the lymph nodes.

Chris has been a wonderful nurse to me as well as a Mr. Mom. He’s lost it with the girls a couple of times, but I talk him out of it. He hasn’t once complained about making breakfast for all of us each day and doing some clean up around the house. I think he’s really worried about me but he won’t talk about it or show it at all.

I received a call from my surgeon a couple days after the surgery and she said that I need to come back in to have more tissue removed. The lumpectomy removed all the invasive cancer but there’s still a little bit of non-invasive (in situ) cancer that’s on the edge of what was removed she explained. She needs to clear out 1 edge that has a “positive margin”.

What they look for in the pathology report are negative margins, which means no cancer was found anywhere on the edges of what was removed. As for the lymph nodes, 18 were removed and only one was positive – good sign. I guess that means that it most likely hasn’t spread.

Thank you God for finally allowing me to hear some (sort of) good news!

On July 14th I’ll go back for the second surgery to take out more tissue – it will be simple and faster than the first time.

I guess with the positive lymph node I’ll have to have chemo. I still can’t believe that this isn’t just a bad cold or the flu or something. Last night I really broke down with fear because I realized, I think for the first time, that I could die from this. I’m pretty sure I won’t, but there’s no guarantee. There’s also no guarantee that an airplane won’t fly into my house right now and kill me. That’s life, I guess, and I’m going to do my damndest to change mine. I want to be healthy and damn it I want to be skinny again!!

Pathology particulars: Invasive Ductal Carcinoma, Grade 3, Stage 2, NER2 negative, Estrogen- and Progesterone-Positive.

July 1, 2008: visit with a genetics counselor

Met with the genetics counselor. Was referred due to cancer diagnosis at age 37, family history [mom was diagnosed with breast cancer in 2002] and Ashkenazi heritage – all red flags apparently.

She told me that there’s a 12% probability of me having a hereditary cancer gene, based on family history.

I went to the lab and had my blood drawn for the test; they said it would take 2 – 5 weeks for the result.

Meanwhile, my lumpectomy is scheduled for July 7th, six days from now.

June 28, 2008: first visit with breast surgeon

So today we met with the surgeon. She was nice and pretty straight forward, as you would expect a surgeon-type to be. I’m amazed at what I’ve learned in the last two days. Basically, I need to decide if I want a lumpectomy or a mastectomy. It’s stupid to even think of it this way, but a mastectomy would mean breast reconstruction, or implant – and I can’t possibly be left with one perky boob and one sagging one! But the surgeon said that I would have the choice to do both – two new perky boobs! I know this is not a priority, survival is, but might as well get something good from something bad, right?

According to the surgeon, the survivability of both mastectomy and lumpectomy is the same. Lumpectomy is easiest and quickest, with a 10% recurrence chance vs. 3% with mastectomy. Since I’m only a b-cup, a lumpectomy will probably really affect my breast’s appearance – especially when it starts caving in like the surgeon said it might after 6-12 months.

The surgeon said I will need radiation therapy if I have the lumpectomy, as well as hormone therapy (probably Tamoxifen) for 5 years. With mastectomy, no radiation is necessary, unless it turns out that there’s lymph node involvement.

I’ve been very optimistic at each step with this and have been kicked in the ass twice now, which is starting to make it hard to remain optimistic. But, as they say, the third time’s a charm – or something like that – right? I’m speaking of the lymph node involvement. I pray that my lymph nodes are all negative for the presence of cancer. This is the third huge step and it has to be a good outcome this time!

I think I’m going to go with the lumpectomy. It seems to make the most sense. I just want the surgery quickly so I can get it out of me before it grows any more. I want to finish packing and get to or new home, or what I’m hoping will be our new home. I don’t know how long short sales take, but the bank is taking its time getting back to us about our offer – c’mon, stop making us suffer!

That’s all I can handle for today.

June 27, 2008: from lump to diagnosis

About 3 weeks ago, while showering, I felt a lump in my left breast. At first I thought nothing of it because I’ve always had dense, lumpy nodules. I felt it again and thought to myself “Well, this feels different than any other lump I’ve felt before.” It was hard and round; it felt kind of like a marble and it moved around quite a bit. I suddenly felt scared. I got out of the shower and had my husband feel it. He immediately told me to call the doctor.

When I went to the breast care clinic, the nurse I saw told me that it moves too much to be a tumor and that it’s probably just a cyst. She said that many women my age (37) get cysts. She stressed the part about it moving too much to be a tumor. I felt at ease; my panic was gone. She also said that I should go ahead and schedule a mammogram, though, just to be safe.

And so I scheduled a mammogram, but for a couple weeks away since I didn’t think it was very urgent and I had to figure out who was going to babysit my daughters (1- and 2-years old at the time) while I went for the mammogram. The date came and I went in for the x-ray and they told me that they saw something questionable, so they’d like to do an ultrasound. They tried to make it sound like it was no big deal, but my heart started racing. Not at all what I expected – I was sure, based on the reassurances I had gotten from the nurse at the breast care clinic, that I was going to be told it was a cyst.

The ultrasound confirmed that there was definitely something there and it was not a cyst, and they wanted to do a biopsy. It may be a tumor, but many women my age have fibroadenomas (benign tumors) and it may just be that, since that is more common in women my age than cancer. The fear and tears came pouring out anyway. I tried to call my husband but my cell phone didn’t get any reception. This was not at all what I had expected this day to be like.

I came home feeling scared and anxious, even though I had been put at ease somewhat and truly expected to hear that it was a fibroadenoma. I just wanted to hear the results and move on. Five days later, I received the call – BAM! Invasive Ductal Carcinoma with Lobular features, grade 3 breast cancer is what I was told; that was two days ago. All I could say was “Oh my God, I’m 37 and I have cancer!”

The first couple of days I was so angry. I kept thinking that I nursed both my babies for 14 months each and that’s supposed to help prevent breast cancer, damn it! Of course, I nursed them because it was best for them, too, so I have no regrets, but dang it was I mad!

I’m better now. I’m calm. I’m strong. I will get through this. NO WAY am I leaving my girls! NO WAY! NOT AN OPTION! I feel otherwise normal; at times I feel like I should be crying but I’m not and that surprises me. I just really want to make it through this, no more bad news please. I don’t need any more on my plate right now. I have to deal with cancer on top of the move, and packing, and house buying and all the other logistical details – WHY ME?

Someone out there has a plan for me and I really hope that it soon becomes clear to me – and I hope it’s good, because this is a hell of a test I’m being put through.

We are moving across country in six weeks and I still have to pack up our house, but now I have to decide what type of surgery I want to have in a week – lumpectomy or mastectomy. How do I decide??