Next Steps Decided

It has been a busy couple of days with appointments.

Yesterday I met with a genetic counselor to discuss my family history and whether there was any need for additional genetic screening. Both of my parents have had cancer (and are living), they each have a sibling who has had cancer (passed away, but not at a young age), and that's about it. I'm the baby in my generation - youngest of all my siblings and cousins, and no one else has had cancer. Even though this makes it look unlikely that there is a genetic component to my cancer, they already have my blood sample and can easily analyze it further, so I decided to go for it. I'd rather know, even if there isn't anything I can do about it. So they will look for moderate breast cancer genes and other emerging genes, just to see if there's anything else there. It won't change my treatment, but it could change my future cancer screenings and will be good information for the rest of my family. I also agreed to join Geisinger's My Code program, so that my information can help us learn more about cancer for future generations.

Immediately after that appointment, I met with Dr. Patel, the Medical Oncologist. The genomic testing of my tumor was successful, and results showed that I have a Low Risk Prosigna Score of 28 (0-40 is considered low-risk). The probability of distant recurrence at 10 years is only 3%. This is incredible news! The purpose of chemotherapy is to reduce the chances of this cancer spreading to other areas of my body. So, since my tumor was very small, had clean margins, my sentinel lymph nodes were clear, and the genomic testing only shows a 3% chance it could spread, there is no point in doing any chemo! This is a great relief, because of all the treatments, chemo has the most impact on your life, both in the short-term and long-term.

Dr. Patel does still want me to take Tamoxifen, which is shown to reduce the risk of recurrence even locally for estrogen-positive cancers (like mine). However, he said if I don't tolerate it well, he wouldn't be too concerned about discontinuing it. Tamoxifen is a drug in the form of a pill - I'll take it for 5 years, starting after radiation has completed.

I asked whether it would be a good idea to get a full body scan to make sure I didn't have cancer elsewhere, and he said it wasn't needed. There is no indication that I have cancer anywhere else.

So, I just let him know when I'm ready for my prescription, and other than that, I don't need to see him for 6 months unless I have a problem.

Finally, this morning, I met with the other Dr. Patel, the Radiation Oncologist. I went in unsure whether radiation was really needed, but looking at stats, it is clear that this is the best way to go. In a study of over 1,000 women my age, 40% of those who only had a lumpectomy had recurrence of cancer in the same breast, compared to 20% of those who also had radiation. That's a pretty big difference. If I add in the Tamoxifen, he said I'm probably down to a 15% chance it could recur in the same breast. Considering about 12% of women will develop breast cancer at some point in their lifetime, I'd say that's a pretty good number.

I go in Friday for a CT scan to do mapping of my breast to determine the exact radiation plan. It will take about a week for that to be determined, and I'll start radiation shortly after. I'll have 36 treatments: 28 of the whole breast, 8 concentrated on the area of my lumpectomy. This will take about 15 minutes of my time every week-day for 6-7 weeks. Immediate side effects are sunburn-type issues of the skin, some fatigue, some tenderness and swelling. My heart and lungs will get some exposure to the radiation as well, but it will be minimal and hopefully won't cause any problems (but it could).

So, overall this continues to be the best case scenario for breast cancer. I am very fortunate!

Post-surgery appointment

I saw the surgeon this morning for my post-surgery check-up.  I am healing well and now have no restrictions on my activity (yay). This is especially good since my wonderful friends are trying to fatten me up with lots of great food.

She talked to the lab and they think they have enough tissue in my biopsy to run the genetic testing on it - this helps determine the chances it will return. She will know for sure in a week. I'll see her in 6 months after my next mammogram - for the next 2 years I will need to get them 2x/year.

Otherwise, my care is pretty much handed over to the oncologists, and I don't have those appointments for another 2 weeks.

I'm feeling pretty good this week. I still have discomfort, and my arm is tired at the end of the day, but it's really pretty minor. So it's back to my normal life for the next few weeks.

Cancer by the numbers

I'm an analytical person, so of course I want to keep track of cost in money, time, and needle sticks (since I don't particularly like them). This is NOT a plea for a gofundme page, just informational - especially in light of congress wanting to repeal the ACA. I am an educator at heart. 

I am so very grateful for my employer-sponsored health insurance, which gives me a $250 personal deductible and $1,000 personal limit on co-insurance per year. I am going to hit it quickly!

Here's what we have so far:

• Cancer diagnosis (total billed/my personal cost): $16,848/$283
• Surgery: $20,064/$874 (so far)
• # of appointments: 6
• # of needle sticks: 10+ (I don't know what was done while I was unconscious)

Nerves are a b*tch, and other random thoughts

So, I went to work yesterday (Wednesday), with my doctor's permission. I mean, all I do is sit at a desk, so what's the big deal, right? Well, apparently using a mouse and typing for hours is more strenuous than I thought.

Cutting into lymph nodes generally also cuts into nerves. Nerves don't like to be cut. Sitting at home, with occasional typing, only results in a little achy-ness. Typing for hours is a different story. By noon I had some significant pain, shooting from behind my shoulder down to my hand. So I left work at 1. By dinner, it wasn't much better. Thankfully, Jamaal was around to cut my food for me, since even using the fork caused pain to shoot down my arm.

By this morning it wasn't much better, so I ended up staying home to rest, and also found some exercises to try. Tonight, it feels much better (thus the typing for my blog). This is very typical when lymph nodes are removed. Wouldn't it be great if we had better diagnostic tests that could determine if cancer had spread to lymph nodes without cutting?

In other news, I now know of 6 other people who graduated from State High with me who also have cancer. I don't know what is normal, but that seems crazy for a bunch of 42 year olds.

As far as my future cancer stuff... I have a follow-up with my surgeon on the 26th, a consult with the medical oncologist on February 7, and a consult with the radiation oncologist on February 8. So,I have a nice little break before thinking about next steps.

Super clean margins

My surgeon called today with some pretty incredible news. Not only are my lymph nodes cancer-free, the tissue she removed from my breast also had no signs of cancer. Apparently the biopsy removed all of it. This means that there's a pretty good chance that I'm cancer free, but we still need to do some other things to make sure of that and prevent it from coming back.

So what's next?

To take care of any random rogue cells in my breast, I'll have radiation, which is the standard of care when receiving a lumpectomy. I'm being referred to Dr. Veeral Patel, a radiation oncologist at the hospital. This is generally done after chemo, so when I have it depends on whether I have chemo.

We also need to do what we can to prevent the cancer from returning. I will take tamoxifen, a drug that works to prevent estrogen-positive cancers from returning, and reduces that risk by 50%. This is a pill I'll have to take for 5 years, assuming I tolerate it - side effects can be difficult to deal with for some.

In addition, my cancer will be tested to learn more about its particular genetic characteristics. This will give me information on what the chances are it could return, and how much chemo would reduce those chances. One possible glitch is that we don't have a good sample of my cancer - all we have is what was in the biopsy. The surgeon has to find out if there's enough tissue in the biopsy to do this analysis. If not, other characteristics of my cancer, my health, age, and family history will be used to estimate the chance of recurrence, which isn't as accurate. I am being referred to a medical oncologist, Dr. Nilesh Patel, who will discuss these chances with me, and then I will need to decide if the harm of chemo is worth the decrease in risk. I have received positive feedback about Dr. Patel from multiple sources, including my surgeon, so feel good about taking his guidance. Ultimately, though, I'll need to make the decision on what is best for me with the information I have.

So, referrals are being sent, the genetic testing on the cancer should be done in a week (if done at all), and I'm heading back to work tomorrow.

I have to say this week has been quite relaxing, and I've been thoroughly spoiled. I have had lots of great meals, and have started a nice collection of frozen leftovers to help me through radiation and chemo. I am feeling extremely fortunate and blessed.

One more thing - my cancer was caught using a 3D mammogram, which is pretty new technology. If you or someone you know has dense breasts, request a 3D mammogram. I really doubt it would have been caught this early with a traditional mammogram.

Surgery is done

Yesterday was surgery day, and was perfectly uneventful. It was done at the new surgery center at Geisinger Grays Woods, which is a very nice facility. We arrived at 8:15, and I was home by 1:45.

Before surgery, I had to go to radiology and have a wire inserted to guide the surgeon to the cancer. Everything was numb so I hardly felt a thing. My breast was also injected with radioactive material, which traveled up the lymph system into the lymph nodes. The surgeon could then use a Geiger counter to help determine where the first lymph nodes are that drain from my breast. While not overly pleasant, it really wasn't bad at all.

Everything moved pretty quickly after that. I was prepped for surgery - the IV was really the worst part of the whole experience... just uncomfortable. Various people came in to tell me what was going to happen, including the surgeon. She also told me that the genetic testing results came in that morning, and everything was negative. This means I made the right decision to move forward with surgery and I won't need a bilateral mastectomy.

My sister, Carol, and boyfriend, Jamaal, were there with me until I was taken to the OR. I remember chatting with the nurses in the OR, took a few deep breaths, and the next thing I knew, I was waking up in recovery. I had no nausea or any problems waking up, and was munching on crackers pretty quickly. I was taken back to my room, got dressed, and headed home.

Many people have mentioned that the incision for the lymph node biopsy is the worst part, because it's in your armpit. I lucked out and my incision is below the armpit, so I won't have that discomfort. The lidocaine they used on me yesterday lasted all day, so I am really feeling my first pain today, and it's not horrible. I can move my arm easily. I also think I'm still pretty even, so I doubt I'll need any reconstructive surgery (good news/bad news - no new perky boobs for me!). The weirdest post-surgery experience has to do with the blue dye she injected to help her identify the lymph nodes. It made my pee bright blue/teal! She had warned me that it may make my skin slightly purple, but that didn't happen - just a little pale.

Next steps will be determined after I get the pathology results from the surgery. They look at the tissue to make sure there's a good margin of healthy cells around the cancer cells that were removed. If not, I have to go back in to have more tissue removed - that happens about 20% of the time. They will also look to see if there's any cancer in the 2 lymph nodes they removed, which would indicate that some of the cells could have left my breast and moved into my body. If so, I'll definitely need chemotherapy - if not, I may still get it, but that will be determined by the oncologist.

So, all in all, good progress. I've heard from so many of you and really appreciate your love and support!

Surgery is tomorrow

Surgery is tomorrow, and I am beyond ready, thanks to amazing friends and family. I hope to be home by 2:30 or 3, and will provide an update when I can.

Thank you all again for the texts, emails, cards, and comments of support. I feel incredibly fortunate to have all of you in my life.

Let's go get this !@#%&* out of there!

Meal Train

Some people have asked how they can help. My friend, Julia, set up this site so that those who want to help can sign up to bring a meal. Things I can freeze for later would be helpful, too - I imagine they could be useful when going through chemo or radiation.  Thanks! I appreciate everyone's love and support in whatever form so very much.

Deja Vu

When my mom was pregnant with me, at the "advanced maternal age" of 41, her obstetrician suggested they try this new test to make sure I didn't have any abnormalities. So, my mom was the first (or at least one of the first) to have an amniocentesis in our tiny town. This was also done without the aid of an ultrasound... I blame this for my severe needle-phobia as a child.  ;)

The sample was sent off to the prestigious University of Pennsylvania in Philadelphia (or some similarly prestigious place). Then, silence. My dad wrote multiple letters asking for the results, and did finally receive them... after I was born. Thankfully I didn't have any abnormalities (despite what you may think!).

So, when my surgeon told me they were going to try a new process to see if they could get my genetic results faster, my parents were immediately skeptical and I think may have even chuckled. 

Yep, the blood I had drawn on December 22 hasn't even made it to the lab yet. My surgeon called to see what was going on, and found out that the results won't come in for another 2 weeks - a week after my scheduled lumpectomy. This matters because if I have the breast cancer gene mutation, the recommended treatment would change to a bilateral mastectomy.

So, the surgeon gave me 3 choices:

1. Cancel the surgery on the 11th to wait for the results. If positive, she would recommend a double mastectomy. Scheduling for that would take about 6 weeks - so that would mean waiting 8 weeks to get the cancer out.
2. Cancel the surgery on the 11th to wait for the results. If negative, we would reschedule the lumpectomy, which would take 3 weeks. So that would mean waiting 5 weeks to get the cancer out.
3. Go ahead with the lumpectomy on the 11th. If the results are negative, then great. If positive, I could take my time in scheduling a double mastectomy sometime in the next few months.

I'm choosing #3. It's a risk that I'll have to have 2 surgeries, but considering my family history, I think the risk is small and I don't want this cancer to keep growing for another 1-2 months. Plus, I can then take my time to decide on when and where I want to have my mastectomy and reconstruction.

So, surgery is still on for a week from today.