9/19/19: (~1 Month Post-DMX) Medical Oncologist Appointment - I Need Chemotherapy

I really like my medical oncologist. She was just the right balance of knowledge and caring. A nurse sat in on the entire meeting, and she will be the person helping me navigate upcoming appointments and procedures.

So much information to process.

I will be getting chemotherapy.

I cried a bit at this news, but actually I am on board with the recommendation; I feel my oncologist really gave my case a lot of thought, and is giving me the best treatment for my unique situation. Going into this appointment, because I was in a grey area, I was most worried that the doctor would not be able to confidently recommend a clear course of treatment. She said my case is indeed unique. Two tumors in my right breast, one tiny tumor in my left, two different types of cancer.

The two tumors on the right were ER-positive, PR-positive, and HER2-negative. The larger of these two was sent for Oncotype DX testing, which predicts the likelihood of recurrence and whether or not the patient would benefit from chemotherapy. The result came back "intermediate to low risk", which is basically another grey area with no clear recommendation in terms of chemotherapy. The actual number was 18. The above link gives this not super helpful explanation of results: "If you have a score of 16 or above and are aged 50 or under, your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy."

The tumor on the left was ER-positive, PR-positive, and HER2-positive. Usually, a HER2-positive cancer is treated with Herceptin in conjunction with chemotherapy. But since this tumor was so small (4 mm), it wasn't clear if Herceptin and chemo are still necessary.

My oncologist brought my case to 3 additional oncologists at the main hospital in the city. All 3 oncologists said that yes, I should be treated with Herceptin. Moreover, they all agreed on administering it via chemotherapy with Taxol, which interferes with the growth of cancer cells. My oncologist said their agreement is noteworthy; in a non-straightforward case like mine, it's more common to get differing opinions. I do find it very reassuring to know that even though I started in a "grey area", my course of treatment was actually recommended by 4 oncologists, including my own.

Ultimately, my age played a large factor in the decision. Because I am considered young, the likelihood of recurrence is high. Since I am healthy and have no other health issues, I should be able to handle the chemotherapy.

My medical oncologist said my regimen will be like "chemo lite". My treatment will last a year total. For 12 weeks, I will get Taxol and Herceptin once a week. Then I'll get a maintenance dose of Herceptin every 3 weeks for the rest of the year.

Before starting chemo, I need to get a baseline echocardiogram. I also need to get a port placed in my upper chest, which is how the chemo will be administered. Both these appointments will happen next week.

I will also be getting hormone therapy.

All 3 tumors were ER-positive and PR-positive, which means the cancer's growth is fueled by estrogen and progesterone. I'll be getting both Tamoxifen and Lupron. Tamoxifen is a pill that blocks the estrogen receptors in the cancer cells. Lupron is a type of ovarian suppression. It's an injection that stops estrogen production in the ovaries. I'm not entirely clear on this, but it sounds like I may need to take Tamoxifen and Lupron until menopause.

I do not need radiation.

Mainly, I think, because I had clear surgical margins and my lymph nodes were clear.

All my treatment moving forward is to prevent recurrence. Chemotherapy and hormone therapy are both systemic treatments, and as this video explains, they are needed to address any cancer cells that already escaped from the breast and may grow into cancer later.

Finally, we discussed my variants of unknown significance in my BRCA2 and PALB2 genes. BRCA2 is also linked to ovarian cancer, and PALB2 may be linked. Ovarian cancer is very difficult to detect, and tends to already be late-stage when it's found. If I had known mutations in BRCA2, an oophorectomy (removal of ovaries) would be recommended. Since my mutations aren't known to be problematic, they're not sure if there is enough reason to worry about ovarian cancer. My medical oncologist said she would confer with the genetics specialist, and I should also discuss this question with my OB/GYN. (I have an appointment in October.) There seems to be a lot of negative side effects when getting ovaries removed pre-menopause, so I hope I can avoid it.

On Monday morning Ken and I will meet with the oncology nurse to review my entire treatment plan. It'll also be a chance for us to ask questions.

Incidentally, at the start of this appointment, I had a blood draw. In retrospect, I'm sure it was to get a baseline before I start treatment.

It's all very overwhelming. I really feel like I'm just being carried along on this river. I don't know where it's going. Whatever comes up, it is what it is. I just have to do whatever I have to do.

9/13/19: (3 Weeks Post-DMX) Breast Surgeon Appointment

I had my post-operative follow-up appointment with my breast surgeon. Ken came with me. I am actually a little sad that this will probably be the last time I see this doctor. He is so calm and respectful and has a reassuring presence.

He looked at my incisions and said they are healing nicely. I asked him about the continued swelling and numbness - not visibly problematic, but I can feel them - and he said it was normal, to just give it time.

I told him I was still wearing the surgical bra and compression band at home (I didn't wear them to the appointment), and he said I could stop wearing them. Interestingly, even with no garments, my chest area still feels tight and constricted. I think it's what some people in the Facebook support groups call the "iron bra". I think the feeling is supposed to go away, though a few women have said the feeling lingers.

He asked me to raise my arms to the side, and my range of motion was limited enough that he referred me to physical therapy. I have my first appointment scheduled for next week.

I asked about getting a prescription for the contoured, custom-made prosthetics he mentioned at our first meeting. He said my NP can give me the prescription and information on how to fill it. I'm still not sure if I want them, so I'll just keep it in mind, just in case.

We also talked about my surgical pathology. As I already knew from my last NP appointment, he got clear surgical margins, and there was no evidence of cancer in my sentinel lymph nodes. I am so thankful for this man's surgical skills. He declared me tumor-free! I think this means I don't need radiation.

But, he said there was one "hiccup". My NP had already told me about the 4 mm tumor that was found in my left breast, but at the time, the HER2 status was still pending. The results came in, and this tumor was HER2-positive. Combined with being ER-positive and PR-positive, that means this cancer is triple positive. (My original two tumors were both HER2-negative.)

HER2-positive cancers are usually treated with Herceptin, which is commonly administered with chemotherapy. But, since the tumor is "tiny", chemotherapy is not clearly necessary. But, since I am considered young, that generally means the cancer was more aggressive, so chemotherapy might be recommended. Plus, being young and healthy, chemotherapy is not as risky as it would be if I were older or if I had other health issues. If I do get chemotherapy, it's possible I could get a lighter regimen. He said my case is squarely in a grey area. The tumor board will likely discuss my case next Wednesday, in time for my medical oncologist appointment on Thursday.

When my surgical pathology report came back "all clear," a lot of people assumed that was the end of my treatment. Why would I need chemotherapy, if the surgery removed all the cancer? I, too, had had this question. The answer is explained succinctly in this brief video (with transcript). Basically, cancer is a systemic disease. Tumors are localized symptoms, and surgery and radiation are localized treatment that specifically target tumors. Chemotherapy and hormone therapy are systemic, whole body treatments. Surgery is frequently just the first step of treatment.

Anyway, I'll have a 6-month follow-up appointment with my NP.

Since the surgery, I've been mostly focused on my physical recovery, and working a bit on my emotional well-being, but now I am quite anxious to know what my ongoing treatment will look like.

So, after this appointment, Ken and I went out for a really nice lunch at a new-to-us restaurant. It was my first time being flat out in public. I wore a poncho-like wrap that a good friend very thoughtfully gave me just the other day, knowing I am looking for new clothing options that will hide my flatness. As it turned out, in this wrap, I felt so comfortable in my flatness that I was more self-conscious about wearing uncharacteristically fashionable clothes. Hahaha.

7/1/19: Breast Surgeon Appointment

I feel a lot better now that we've met with the breast surgeon! My husband went with me to this appointment, and it feels good to have a plan.

We covered so much information in this appointment. Here goes.

I will be getting a double mastectomy with no reconstruction. He will also remove 2-3 sentinel lymph nodes on each side for testing. (More details on that below.) The earliest available surgery date is likely to be in mid-August, but they will put me on a wait list for an earlier date. They will call me probably next week with the surgery date.

It sounded like the surgeon got involved starting with my MRI report. He asked me to fill him in on everything up until the MRI. I dare say he expressed a bit of surprise when he learned that two mammograms and two ultrasounds did not detect either of my cancerous tumors. He said maybe the sebaceous cyst was like my guardian angel, causing me to pay more attention to my breast and leading me to an earlier diagnosis. (Incidentally, at this point, the sebaceous cyst is no longer visible, and the palpable lump is much, much smaller. I'm not even sure if what I'm feeling is the cyst, or the cancer...)

He said the biopsy of my 1st lump showed both cancer and necrotic tissue. This is the only part of the appointment I didn't quite understand. What is the significance of the necrotic tissue? He didn't seem too worried about it, and what he did say was pretty much in line with this.

He called my cancer "invasive carcinoma with ductal and lobular features." I think the 1st area (the cancer behind the sebaceous cyst) is in the lobules (milk-producing glands), and the 2nd area (the cancer near my nipple) is in the milk ducts.

He said I am HER2 negative, which is a good thing. He said HER2 is a growth factor, and the fact that I am negative means maybe I will not need chemotherapy.

I am also 90% ER+ (estrogen receptor positive), which means I should respond well to hormone therapy.

Putting it all together, he said I am stage 1. But he emphasized that much more will be known after the surgery.

The surgeon confirmed that because the cancer is multicentric, a full mastectomy of my right breast is recommended. He said at this point, the two lumps look like 2 separate tumors, but during the surgery they may be able to see if the two are actually connected (which means there was 1 tumor that spread).

Contrary to what the genetic counselor had said, he thought the "variants of unknown significance" were very important. The fact that they are "unknown" means they could, possibly, be 100% linked to breast cancer, but we just don't know that yet. Those variants, combined with the history of cancer in my family (2 paternal aunts with breast cancer), and also considering the unknown abnormality seen in the MRI of my left breast, means a double mastectomy would be a reasonable course of action. I agreed. After surgery, both breasts will be sent to the lab for testing, so ultimately we will know if there really was cancer in the left breast already.

During the surgery, it is customary to look at the lymph nodes to see if the cancer has spread. Apparently, if breast cancer spreads outside of the breasts, the only path is through the lymph nodes. The surgeon will eject a dye into each breast. The dye will travel the same path the cancer would be likely to take. The first lymph nodes to be reached by the dye are called the "sentinel" lymph nodes. (Like they are keeping guard for the rest of the body!) The surgeon will remove 2 or 3 of these sentinel lymph nodes on each side for biopsy. Even though there is no confirmation of cancer in the left breast at this point, he will remove the left sentinel lymph nodes just in case, because once the breast is removed, there will be no way to identify the sentinel lymph nodes for future biopsy (no breast tissue in which to inject the dye).

Whether or not the sentinel lymph node biopsy shows cancer may change the staging of the cancer and will determine my course of treatment, including whether or not I need chemotherapy.

After surgery, when all the lab results are in, I will meet with a medical oncologist about chemotherapy and medication, which are considered systemic treatments for cancer. (They treat the whole body, not just the location of the cancer.)

Because my cancer is ER+, the medical oncologist may prescribe an anti-estrogen pill like Tamoxifen, which is appropriate for pre-menopausal women. Ovarian suppression pills could also be used to prevent the ovaries from producing estrogen. Being 90% sensitive to estrogen, I asked if I should consider getting my ovaries removed? He said that's definitely something I should discuss with the medical oncologist and my OB/GYN. (Ovary removal surgery would be done by the OB/GYN.)

If necessary, I will be referred to a radiation oncologist. Radiation (like surgery) is considered local treatment for cancer tumors. A mastectomy removes the entire area of the tumor, which makes radiation less likely.

The breast surgeon said radiation is rare for a stage 1 cancer with double mastectomy. But radiation could be recommended if the tumor is greater than 5 cm, if the cancer has already spread to the lymph nodes, or if there are "positive margins". "Surgical margins" refers to the normal breast tissue that is removed along with the cancer. "Clear" or "negative" margins means normal tissue surrounds the removed cancer. "Positive" margins means cancer cells go right up to the end of the removed tissue (which means maybe not all the cancer was removed).

Because I am not getting reconstruction, I also spoke with the breast surgeon about wanting completely flat results, i.e., no excess skin or "dog ears". (If breast reconstruction is still a possibility, surgeons may purposely spare excess skin.) He said he understood my concern, and if there are "poor cosmetic results" after recovery, either he or a plastic surgeon could do revision surgery (a "quick nip-tuck" outpatient procedure) to fix it.

The breast surgeon offered to refer me to a plastic surgeon if I changed my mind about reconstruction. I appreciated that he was making sure I understood all my options while still respecting my decision and not pushing me in one direction or the other.

He also let me know about contoured prosthetics that are custom-made to fit an individual's chest, so they fit and look better than other prosthetics. I haven't given much thought to prosthetics yet, but that does sound appealing. He said he'd get me the information for them (maybe a prescription?) after the surgery.

Regarding the post-surgery recovery, he said I could expect 1 night in the hospital, and then I should be functional by the time I get home. I shouldn't do any cooking or cleaning or anything like that for about a week. He estimated recovery to be 3 weeks, but no heavy lifting for up to 6 weeks. He told me about "drains" that will collect fluid in the days following surgery. (They will be removed after 5-7 days.) I think I would have been more taken aback or confused by this revelation if I hadn't already learned about drains on the Facebook group for women who have had double mastectomies.

Finally, we met briefly with my biopsy nurse, who I learned is my "navigator," which means she is the person coordinating my care. She will take care of cancelling the MRI with biopsy appointment, and she'll be the one who sets up my medical oncologist appointment. I mentioned to her my uneasiness over the fact that I had taken birth control pills for so many years. She reassured me that no studies definitively link birth control pills to breast cancer; birth control pills may slightly increase the risk for breast cancer for some women, but there are many factors that may influence the results.

Now, all I can do is wait for a scheduler to call with my surgery date.

6/19/19: My NP Called Me

My NP called this morning, as promised.

Every time someone from the Breast Center calls, it's a different number. But now I know to pick up just in case.

I had prepared a list of questions in advance. The NP had me ask my questions first, but in this post, I think it makes more sense to describe important information first.

I have my appointment with the breast surgeon next Friday. I'll have my husband go with me to that appointment.

The NP said the surgeon would likely recommend a mastectomy.

She said she spoke with the surgeon about my case. The cancer being in 2 locations, in 2 quadrants of the breast, is complicating. Usually, when the cancer is in one location, they surgically remove the tumor, then treat the location with radiation to reduce the chances of recurrence. I guess the radiation is targeted to the specific location of the cancer, and it's not an option if there are 2 locations. I wasn't clear on why not, but I found this site that lists radiation as an option if the cancer is "located in one site."

Additionally, the second lump being so close to the nipple is also complicating. She said because of this location, breast-conserving surgery doesn't provide a good option cosmetically. 

She said she would also make an appointment for me with a plastic surgeon to discuss breast reconstruction surgery. We will have to drive to the main hospital in the city for that appointment. At this point, I'm not sure how I feel about breast reconstruction surgery, but I figure it makes sense to meet with the plastic surgeon to learn about the process and what my options are.

Other things we talked about during the phone call:

I asked for clarification regarding the first lump. She said the lump itself is a sebaceous cyst, and the cancer is behind it. The cancer showed up as a "shadow" on the ultrasound, so it looked like maybe the cyst had ruptured, but it turned out to be "not related." I'm still not fully clear on it, but it seems like it's just a coincidence that the cyst happened to appear in front of the cancer.

And the second lump? It's a cancerous tumor. She called my case "multifocal" because there is more than one lump, but when I Googled it, I think maybe she meant "multicentric" because she was clear that my 2 lumps are in different quadrants. I'm not sure if having multicentric cancer is automatically worse than having unifocal cancer, but it can't be better. (In Googling "multicentric breast cancer", it does appear that a mastectomy is the typical course of action.)

The NP said that when there are multiple tumors, they evaluate the cancer based on individual tumor size; they don't add up all the tumors for a total size. She referred to my tumors as "small," and she said having the 2 locations doesn't necessarily mean the cancer is more advanced. I guess that's reassuring. 

I asked if they could tell what type of cancer it is, and what stage? She said they are still waiting on the receptor testing. And they will have a much clearer picture after surgery. During surgery they will look at the lymph nodes (something about a dye, and a biopsy) because apparently if breast cancer spreads, it will spread to the lymph nodes first. She did say that my lymph nodes "looked okay" on the MRI, so that's a "good sign."

Finally, I told my NP that I had read online that it takes about 2-5 years for breast cancer to grow big enough to be palpable. So understanding that my body has already hosted this cancer for a while, is there anything I can or should be doing now that I've been diagnosed? She said the only lifestyle recommendations are regular exercise and a healthy diet.