Suspicious Lymph Node Found; Chemo Postponed

I was supposed to see the breast surgeon today, followed by an ultrasound, but the surgeon was running late. So I got the ultrasound before seeing the surgeon. This turned out to be a good thing.

The surgeon ordered an ultrasound of my left axilla (underarm) even though I've already had a breast mammogram, breast ultrasound, and MRI that supposedly covered the lymph nodes. Today's test was very targeted. Unfortunately it showed one enlarged node. The report says this:

In the left axilla at 1:00, 12 cm from the nipple, there is an abnormal-appearing lymph node measuring 1.2 x 0.5 cm (long by short axis) with an eccentrically thickened cortex measuring 0.4 cm.

This website defines a normal lymph node as: A normal sized lymph node is less than 10 mm with a thin cortex of less than 3 mm. In comparison, my lymph node is 12 mm long and 4 mm thick.

Four doctors had examined my lymph nodes before and didn't feel any enlarged ones. The first ultrasound and MRI also didn't show anything suspicious, although the surgeon today explained that lymph nodes can hide and not be visible in tests. She also said that she felt the enlarged node. I've always been suspicious that my lymph nodes were not involved, so today's finding is not a surprise. There's a possibility that the node is benign. But my gut feeling is it's positive. If so, my cancer stage will be IIB instead of IIA with a worse prognosis. Oh well.

Anyway, for the study I'm joining, they need a baseline and will have to do an ultrasound-guided lymph node needle biopsy (not a sentinel node biopsy) before I can start chemo. I'm waiting to see if they can squeeze me in tomorrow or Wednesday. The study coordinator wants to move my chemo to Friday, but I want to wait till Monday because I will have to restart my fasting. More on my fasting later.

At the appointment with the doctor, I learned a few new things. One is that if the chemo shrinks my tumor significantly, I might be eligible for a lumpectomy instead of a mastectomy. But if I get a lumpectomy, I will need radiation which comes with its own side effects. I will see the surgeon again after my last chemo.

Another thing I learned had to do with sentinel node biopsies and lumpectomies. The dye and/or radioactive tracer they inject to find the lymph nodes is extremely painful. There is a study where they use LYMPHOSEEK, and it's supposed to be a lot less painful. I might be able to join the study.

For lumpectomies, if they don't get a clear margin (no sign of cancer in the excised breast tissue), they will have to do a second lumpectomy, and this occurs at least 20% of the time. I thought the surgeon said LYMPHOSEEK will also improve the chance of getting a clear margin, but perhaps I misunderstood. I don't see lumpectomies described on the LYMPHOSEEK page. However, I saw this site that mentions MarginProbe that reduces the risk of a second lumpectomy by 61%. It also says that second lumpectomies happen 25-50% of the time. That sounds extremely high. I will have to ask the doctor about it. 

Another thing I was concerned about was the risk of getting breast cancer in my other breast if I don't get a prophylactic mastectomy of my healthy breast. What I had heard was the risk was 1% per year, and it was cumulative. So in 20 years, I would have a 20% chance of getting cancer in my other breast. But the surgeon said that info was from earlier studies, and she thinks the risk is 3-4% in 10 years. What's more concerning is that there's a higher risk of recurrence in the breast that does have cancer. Nevertheless 3-4% sounds too high. However, mastectomies come with their own complications and can affect quality of life. But so does worrying about whether you'll get cancer again.

I had asked the oncologist before whether I should be concerned about delays in my chemo treatment. I also asked the surgeon's nurse today. Both say that breast cancer is slow-growing compared to other cancers (perhaps with the exception of inflammatory breast cancer), and another week's delay won't make much difference.

I'm glad I switched to Stanford though. They're more thorough than PAMF, and their doctors are more specialized. They're not just general oncologists for all types of cancers and general surgeons for all types of surgery but breast oncologists and breast surgeons. They even have separate buildings for their Women's Cancer Center that offers advanced treatments for breast and gynecologic cancers.

Prepping for Chemo

I've decided to join the study at Stanford. This morning I got a call that they require a urine pregnancy test for the study even though it's been 1.5 years since my last period and I've done nothing to get pregnant!

My first chemo is set for Tuesday, Dec. 1. On Monday I have an appointment with a breast surgeon at Stanford followed by an ultrasound of my axilla. I hope they don't find any swollen lymph nodes. 

Tuesday I start off with a blood test, an exam by an oncologist, then chemo infusion. The infusion appointment is for 7 hours. I hope it doesn't take that long. The blood test and exam add another two hours. It's going to be a very long day.

This afternoon I had a long phone call with the nurse coordinator about what to expect from my chemo. There are so many drugs I have to take aside from the chemo. Here's a partial list.

Dexamethasone Take two 4 mg tablets the day before, day of, and day after chemo. This is for nausea and allergic reactions to the chemo.

Zofran Take 8 mg every 8 hours for nausea, starting the day after chemo and continuing for 3 days.

Compazine Also for nausea. Take as needed if Zofran doesn't work.

Ativan Take 1 mg at bedtime the day of and day after chemo and continuing as needed. For nausea and anxiety and to help me sleep because dexamethasone can cause insomnia.

I've purchased a lot of over-the-counter meds and other stuff for the side effects I'm expecting. I'll list the brand names, but I bought generics for most of them.

Constipation
Colace stool softener
Senokot laxative
Prunes

Diarrhea
Imodium
Bidet spray (yay!)

Mouth sores
L-Lysine
Lip balm
Baking soda
Salt
Dry mouth lozenges
Milk of Magnesia

Nausea
Mints
Pepcid AC
Aromatherapy inhaler for nausea
Barf bags

Fever
Thermometer

Pain
Tylenol
Advil
Aleve
Claritin (for bone pain due to Neulasta)
Emla (for the port)

Hair loss
Hairnet
Beanies

I think I'm ready. Maybe I should buy more toilet paper.

Port Surgery Follow-Up

I had a follow-up video call with the radiologist's PA about my port. It's healing but the glue is still there, and I was concerned about whether I could use the numbing cream on it when I go for my infusion. No problem, I was told. The cream can be applied over the glued area.

I also asked what drugs I was given during my procedure. It was 1 mg Versed and 50 mcg Fentanyl. I don't remember speaking during surgery and don't recall hearing any voices, but apparently I said ouch at one point, and they gave me another 1 mg Versed and 50 mcg Fentanyl.

Versed can cause nausea, and that's why I requested anti-nausea medication beforehand. I wasn't nauseated when I woke up, but as I said earlier, I got motion sickness from being transported from the OR to the recovery room and had to be given more Zofran.

I really hope I don't get nausea from the chemo. I read that people who are prone to motion sickness are more likely to experience nausea. I get airsick, seasick, and carsick. Ugh.

Chemo Port

I had my port placement done yesterday. Arrived at El Camino Hospital at 9:30. Surgery was supposed to be at 11:30 but didn't happen till 1:00 or later. The procedure was done by Dr. Fabio Komlos, an interventional radiologist at PAMF.

The IV was inserted around 10:40. It hurt for hours! The catheter was near my wrist. First the nurse tried a warm blanket around my arm to relieve the pain, but it didn't help. The ice pack was a little better, but it kept hurting until I got up to use the restroom. The pain went away for a while. When it came back, it didn't hurt as badly as before and was intermittent.

While waiting for the surgery, I had a long chat with one of the nurses. I thought I would have two incisions, but the nurse said the doctor does only one incision. The nurse gave the procedure a name -- the Fabio Maneuver. When Dr. Fabio Komlos came in briefly before the surgery and explained what he would do, I asked about the incision. The nurse piped up, "What's it called?" I answered, "The Fabio Maneuver." Laughter ensued.

I assume I was out during the procedure but felt brief pain twice, presumably when I got a numbing shot in my chest and when the doctor made the incision. They gave me oxygen and placed a sheet over my head. I didn't hear anyone talking, and when they removed the sheet after the procedure, there were only two people left in the room.

I had to stay in the OR for a while waiting for a recovery room. When the incision started to hurt, they gave me Tylenol. As they were about to wheel me out, the radiologist stopped by briefly, presumably to check on me, but all I remember him asking was, "Are you really 60?" 😄

When they wheeled me to the recovery room, I think I got motion sickness. They had given me 4 mg Zofran before the procedure and had to give me another 4 mg. The nausea was mild, but I didn't feel completely better till about two hours later. The Tylenol also didn't help with the pain, and they gave me 15 mg Toradol IV, an anti-inflammatory equivalent to 600 mg Advil. That helped.

I didn't get home till 5pm. It was a long day. My friend Sindhu dropped me off at the hospital and picked me up later. She made soup and brought spaghetti (it was so good) and stayed overnight with me. We played a board game, and I won twice, a rarity with Sindhu. I was in bed by 10pm, another rarity.

This morning I took Advil, but the incision started to hurt, so I also took Tylenol also. Even though the port should be lightweight, I feel its weight whenever I get up from bed. I suppose I'll get used to it.

They used glue over the incision. I should be able to take a shower. My discharge paper says no heavy lifting (>10 lbs) for two weeks.

Second Mammogram and Ultrasound

Stanford managed to squeeze me in for a diagnostic mammogram and ultrasound of my right breast. The radiologist said the tumor is ~1 cm with smooth edges. She thinks she can vaguely see it in my mammogram two years ago and that it's likely just another fibroadenoma. No biopsy is required at this time. She recommends another ultrasound in 6 months. I'm so relieved.

Addendum 11/20/2020

The radiologist at PAMF reviewed my MRI again and added this note to my test result. I think they thought the nodules at 1:00 and 10:00 were a single tumor.

A 1.5 x 1.2 x 1.3 cm nodule is noted at 1:00 right breast, 6 cm from the nipple, with T2 hyperintensity and imaging characteristics consistent with a fibroadenoma.  This was initially thought to represent the biopsy-proven fibroadenoma. However, on further review of older mammograms, specifically 12/31/2014, 2 masses are noted in the upper right breast on MLO view.  The more anterior mass is at 10:00 and represents fibroadenoma, biopsy proven on  2/11/2015 and with subsequent ability artifact from the biopsy clip on magnetic resonance imaging.  The more posterior nodule is at 1:00 and represents the enhancing nodule seen on breast magnetic resonance imaging, stable in size since 2014.  The mammographic stability and the MR imaging appearance are consistent with fibroadenoma.  If pathology confirmation is necessary, then ultrasound-guided biopsy of this nodule can be performed.

Gene and Covid Tests

I had my blood drawn today for the BRCA gene testing. The result will take about two weeks. As I mentioned before, Ma was triple negative, which is common in those with the BRCA mutation. Because I'm not triple negative myself, I doubt that I'll be positive for the BRCA gene, but it will definitely influence whether I should get a double mastectomy.

My port placement surgery is scheduled for Thursday, and the hospital requires a covid test three days prior. I was apprehensive about the test, thinking it might be painful. The nurse was reassuring, and the procedure was quick though unpleasant. I'm glad I survived it. 😝

Today I let Stanford know that I want them to handle my care. However, the earliest date I could get for a mammogram and ultrasound of my right breast is Dec. 4. This will further delay my chemo. The nurse coordinator will try to expedite the tests, but I'm not holding my breath.

I'm still undecided about whether to join the study. Chemo is so toxic that the fewer drugs, the better. But using fewer drugs and doing only 4 rounds instead of 6 runs the risk that the cancer cells won't be completely eliminated from my body.

Second Opinion

Went to Stanford today for a second opinion. The oncologist was Dr. Jennifer Caswell. I found out two things:

1. My tumor is Grade 3 (poorly differentiated), not Grade 2 (moderately differentiated).
2. My MRI shows a tumor in my other breast that was not caught by the radiologist at PAMF (my current provider).

My right breast has a fibroadenoma diagnosed in 2015 in the 1:00 position. Stanford says there's a second tumor in the 10:00 position. It's possible it's related to the fibroadenoma, or it could be another fibroadenoma, or it could be malignant. They want to do another diagnostic mammogram of my right breast and also an ultrasound. My previous ultrasound was for the left breast only, something that did not make sense to me. A biopsy might also be necessary. These tests will be done at Stanford, possibly next week.

I mentioned before that 6 cycles of TCHP was the treatment recommended to me. There is a study that Stanford wants me to consider that's 4 cycles of THP (no C for carboplatin). 

While I like the idea of having fewer drugs and fewer cycles with THP, it may not be as effective as TCHP. This study shows that the pCR for TCHP is 63% compared to only 55% for THP. pCR is pathologic complete response, the lack of all signs of cancer in tissue samples removed during surgery after treatment.

Another reason I don't want carboplatin is that it can cause leukemia. Dr. Caswell said it's less than 1 in 100, but that sounds too risky to me.

I could join the study, and if my tumor doesn't disappear completely, I can drop out of the study and get additional cycles of THP with or without carboplatin. I would still need a mastectomy, and if the pathology still shows cancer cells, I will need additional chemo. T-DM1 (Kadcyla) was the drug mentioned.

I have to decide if I should:

1. Transfer my care to Stanford, and
2. Join the study.

Due to miscellaneous problems I've had with PAMF (e.g., the missed tumor), I'm pretty sure I want to transfer to Stanford. I just have to decide about the study.

Mediport and Chemo Scheduled

I decided to stay with the new surgeon for the port placement because he'll be doing it under conscious sedation. My original surgeon uses general anesthesia, which seems like overkill for a minor surgical procedure. 

The surgery is scheduled for Thursday next week, Nov. 19. I will talk to the surgeon's nurse assistant on Tuesday and get my questions about the procedure answered.

My first chemo is scheduled for Tuesday the week after the port is inserted, Nov. 24. I'm so scared. 😢

Chemo Teach

I had a session today with my oncologist's nurse to teach me what to expect from my chemo. I will be given Zofran and dexamethasone followed by TCHP -- taxotere, carboplatin, Herceptin, and Perjeta. The nurse said the first infusion will take 5 hours, but it wouldn't surprise me if it's closer to 7 hours.

Based on my notes and the binder the nurse gave me, I have a long list of things to buy before chemo. Among the most important items are Imodium, stool softener, senna (laxative), Tylenol, a thermometer, and baking soda for rinsing my mouth.

Fasting During Chemo

A friend mentioned that fasting can help chemo work better. I started googling and found out that fasting can also minimize side effects such as nausea and mouth sores. Here are some anecdotes where patients who fasted before chemo reported a reduction in fatigue, weakness, and gastrointestinal side effects. 

A paragraph from this article explains what they think happens when you fast during chemo infusion.

It’s thought that fasting can help in cancer treatment because it signals healthy cells that it’s time to conserve energy as there’s low levels of nutrients around. In doing so, they switch to a quiet, maintenance mode. But cancer cells don’t listen to the body’s signals and so they continue to divide quickly, making them a prime target for chemotherapy. In this way, fasting can help protect healthy cells from the side effects of chemo while making cancer cells more vulnerable.

That same article says fasting had a similar effect as taking dexamethasone for nausea. Patients who fasted also had better response to chemotherapy. Here's the study.

Looks like I'll need to fast at least 48 hours before chemo infusion, then maybe 24 hours afterward. The study mentions fasting mimicking diet (FMD). Here's what I could find about FMD -- low carbs and protein, high fat. Calories at 40% of normal intake. Here's a sample plan, but I think it's for someone who consumes 2000/day. I'll have to make adjustments for someone who consumes ~1400 calories/day.

I suppose I should mention to my oncologist what I plan to do.

Frozen Shoulder

Back in June I woke up in the middle of the night with a lot of pain in my left shoulder. The pain continued and two weeks later, I realized my shoulder was frozen. Due to a previous bad experience with physical therapy, I decided not to do anything about it. Besides, I had a frozen shoulder before, and it resolved itself in one year without therapy.

But this time, because having a mastectomy can also give me a frozen shoulder, my surgeon said I'm starting off at a disadvantage. So he referred me for physical therapy, and I had the first session today. I don't know what caused the pain in my shoulder, but the therapist says it's not a rotator cuff injury. She evaluated my shoulder, took some measurements, and gave me exercises to do at home. I will see her at least three more times in person, then we'll switch to video calls. I'm not sure how I'll manage to mix my future appointments with my chemo, not knowing how I'll feel from the side effects of the chemo.

Oh, one more thing. Because it's my left shoulder that's frozen, and my tumor is in my left breast, and I've been doing too much googling, I started to ask my surgeon if it's possible the cancer has metastasized to my shoulder. Before I could even finish asking my question, he said no. 😛

Annoyed with PAMF

I'm being treated at PAMF (Palo Alto Medical Foundation), part of Sutter Health. Yesterday the oncologist's nurse called to set me up with an appointment to learn about my chemo treatment. But she also set my first chemo infusion for this Friday, Nov. 13, without checking with me. There are at least three problems here:

1. My appointment with Stanford for a second opinion is the same day.
2. I don't have the Mediport installed in my chest yet, and this is important because I blew a vein. You don't want the potential for another blown vein when receiving toxic chemo.
3. They require an echocardiogram before starting chemo, and my appointment for the echocardiogram is also this Friday.

My onocologist told his staff that he wants me to get started on chemo ASAP. So today they canceled my appointment for the Mediport on Nov. 20, my appointment with the surgeon to discuss the Mediport procedure, and the my covid test required before the surgical procedure. I had to talk to a nurse in a another department to have a different surgeon install the Mediport. But because I didn't want to do the procedure till after I talk to Stanford and then do a follow-up with my oncologist on Nov. 17, the first appointment I could get with the surgeon is Nov. 19, just one day earlier than my original surgery date. They put me through all this hassle to get the procedure done just one day earlier.

I called the nurse navigator to see if I can get my original surgery date back. I also need to clarify if I'm getting general anesthesia or conscious sedation. It doesn't make sense that I'll get general anesthesia for a minor procedure. If I can't get the original surgeon back, I want to at least meet the new surgeon before the procedure.

Haircut

I've been overdue for a haircut due to covid. My hair got pretty long, almost down to my waist. But since it would be messy when I lose my hair in clumps after I start chemo, I decided to get a very short haircut. Family friend Auring cut my hair and refused payment.

I haven't had hair this short since I was a child. I hate it!!! I'll be wearing a hat from now on until my treatment is over and my hair grows out again. It could take over a year.

Breast MRI

The breast MRI was done with and without contrast (Gadavist). I was worried about the injection -- actually an IV -- and was told by at least three people that it wouldn't hurt. Liars!!! The dye was a bit painful going in, then it got very, very painful. Turns out my vein exploded. The pain eased up but didn't go away entirely until the tech removed the IV.

When I got home, I got a call from the tech asking me to come back. I thought he would have to redo the test but no, he just wanted a doctor to check my arm. Doc said it was fine. I had only a small bruise. I also had a slight headache the rest of the day. Tylenol didn't help.

I got the MRI report that evening. The tumor is bigger than the ultrasound indicated -- 4.5 x 3.7 x 3.5 cm. I'm not surprised. I thought the tumor would be 5 cm.

But the good news is that the report says no suspicious axillary lymphadenopathy.

Signs of Stress

Lately I've been biting the inside of my mouth while I sleep. The backs of my hands also got very dry and scaly. I've since discovered it's eczema. Both the biting and eczema started right after my biopsy. I guess the painful procedure traumatized me a bit.

I went to the dentist to see what could be done about the biting. Because I wear a mouth guard, I haven't broken the skin in my mouth, but I'd like it to stop before I develop mouth sores. My dentist thinks maybe I open my mouth slightly before waking up and then bite down on the side of my mouth. She gave me mouth tape to keep my mouth shut while sleeping. Didn't know those things existed. Unfortunately they didn't help.

I decided to buy over-the-counter mouth guards for my upper teeth. I wore my regular mouth guard on my lower teeth. The combo seems to have helped.

The eczema is getting better. I'm using coconut oil and lavender essential oil on the backs of my hands. They don't feel as scaly as they used to.

Recommended treatment

My oncologist, Dr. Nguyen, recommended neoadjuvant chemotherapy, meaning chemo before surgery. Doing so will reduce the tumor size before surgery. He said that for most of his patients, the tumor disappears. I should notice a reduction in size as soon as the second cycle. But surgery is still required because cancer cells could still be lurking in the breast tissue.

Dr. Nguyen recommended TCHP, an aggressive treatment for my type of tumor because I'm still -- and I quote him here -- young. I guess compared to his older patients, I'm still young. These are the drugs:

T – Taxotere (docetaxel)
C – Carboplatin
H – Herceptin (trastuzumab)
P – Perjeta (Pertuzumab)

Taxotere and carboplatin are chemo drugs. Herceptin and Perjeta are targeted therapy drugs specifically for HER2+ tumors. I will get six cycles of the drugs given every three weeks. 

After the chemo, I will be scheduled for a mastectomy. I haven't decided yet if I should get a unilateral or bilateral mastectomy. After surgery, I will continue with Herceptin and Perjeta for a total of one year. Then I switch to an aromatase inhibitor because my tumor ER+. It's a daily pill taken for 5 years.

Painful Biopsy

I had a biopsy before and had very little pain. I was expecting the same thing for this biopsy, but that wasn't the case. It was a vacuum-assisted biopsy. The lidocaine was delivered by the device and stung a bit. The first few core sample didn't hurt too badly. But when the radiologist went deeper, I yelled in pain. She gave me more lidocaine and tried again. It still hurt! She said she'd given me twice the amount of lidocaine she usually gives patients and has never had it hurt like that before. I think she gave me even more lidocaine after that because I remember her trying again, and it still hurt.

She said she might have to cancel the procedure. I did not want to go through that again. Fortunately she switched to a manual device, and my pain level dropped from 9/10 to 3/10. I read somewhere that those vacuum-assisted devices are more painful. Also the tumor is in the more sensitive nipple area.

I was so sore afterwards. Fortunately cousin Nancy insisted on coming with me and drove me home

Aggressive Tumor

Ma had triple negative breast cancer (TNBC), an aggressive subtype. Fortunately, my cancer is not triple negative, something that had worried me, but I will get BRCA testing anyway because breast cancer patients with the BRCA1 mutation are more likely to have TNBC, and BRCA is heritable.

I was initially told I was PR+, but after I pointed out what looked like a mistake in the biopsy report, the lab retested my biopsy sample and corrected the report to say PR-. But the PR status doesn't affect my treatment.

ER+, PR-, HER2+ (estrogen receptor -- positive, progesterone receptor -- negative, human epidermal growth factor receptor 2 gene -- positive)
Grade 2 ((moderately differentiated)
Ki-67 30%
Size: 4.5 x 3.7 x 3.5 cm (MRI),  3.5 x 1.5 x 3.5 cm (ultrasound)
No palpable lymph nodes. MRI report said No suspicious axillary lymphadenopathy.

Just because the lymph nodes aren't bigger than normal doesn't mean they don't have cancer cells. Chemo should take care of that. 

HER2+ and a Ki-67 oof 30% makes my cancer aggressive. I'm surprised it's only Grade 2 instead of Grade 3. Maybe that's another mistake.

The biopsy report shows how they came up with Grade 2: The invasive component is organized in nests with minimal gland formation (<10%, Tubular formation - score 3). Tumor cells have oval to round nuclei with dispersed chromatin, inconspicuous nucleoli and eosinophilic to amphiphilic cytoplasm (Nuclear - score 2). Several mitotic figures are seen (Mitoses - score 2, 12 in 10 hpf). The overall provisional Nottingham grade is 2 (7 of 9). Lymphovascular invasion is absent. The in-situ component is solid with areas of necrosis and micro calcifications. The in-situ component is grade 2.

Staging is usually done after surgery. But based on the size of my tumor, I'm Stage II. If there truly is no lymph node involvement, then I'm Stage IIA instead of Stage IIB. Stage II is still considered early stage.

It's My Turn

 I figured that since Ma didn't get breast cancer till she was 82, I wouldn't get cancer till I was in my 80s. I was wrong. Here I am, age 60, diagnosed with breast cancer. Unofficially it's Stage II.

10/10    Discovered large lump in left breast.
10/13    Appt. with doctor.
10/21    Diagnostic mammogram.
10/22    Ultrasound. Radiologist said it was "very concerning." I saw the image and knew it was cancer.
10/23    Biopsy. Very painful.
10/27    Partial biopsy report said invasive and in-situ ductal carcinoma, grade 2.
10/28    The rest of the biopsy report said ER+, PR-, HER2+, Ki-67 30%.
10/29    Flu shot. Started process of 2nd opinion at Stanford.
10/30    Consulted with surgeon. Mastectomy required. Got CBC, liver panel, EKG tests, pneumonia & shingles vaccines.
11/3      Met with oncologist. Will get chemo before surgery. TCHP chemo regimen suggested.
11/6      Dentist. Breast MRI.
11/9      Optometrist, genetics counseling.

I will get a second opinion from Stanford on Friday, 11/13. A Mediport will be placed in my chest on 11/20. Chemo will start soon after that.