Radiation Oncology Appointment

Had a video call today with my radiation oncologist, Dr. Salem, and her staff. Because I had a positive lymph node when first diagnosed, I will receive five weeks of daily radiation. If my shoulder is doing well, I could start radiation in two weeks.

I don't know if my shoulder is frozen again. The incision under my arm hurts when I raise my arm. I'm getting a referral for physical therapy just in case. If I can't raise my arm, radiation will have to be delayed.

A major concern for me is radiation burns. I was told that with my skin color, my skin may just turn dark and not burn. I don't remember Ma getting burns from radiation, and her skin was lighter than mine.

But to make sure, I will apply unscented moisturizer 3x a day as recommended. In this article, the ones used most often are Aquaphor, Eucerin and Mometasone. I have a jar of Aquaphor but don't like it. It feels like petroleum jelly. I'll try Eucerin. Mometasone is a steroid cream. Some studies show it works better than moisturizers. I've asked if I can have a prescription. A few women in my support group recommended Miaderm, but it's too expensive and may not work any better than other moisturizers.

Surgical Follow-Up

Saw my surgeon this morning. The surgical resident who assisted her was also there. My incisions are healing well. But there was fluid in my breast that had to be aspirated. I asked, "Aspirated? Does that mean needle?" She replied, "Don't look."

I didn't feel the needle go in because part of my breast is numb. Don't know if the numbness is temporary. There was a tiny bit of pain as the fluid was drawn out. After the fluid was drained, the lower half of my breast collapsed like a balloon. That's going to be the permanent shape of my breast. But I think my breast has filled with fluid again already because it's back to its post-surgical shape. My body will eventually absorb the fluid, then I'll have a partially collapsed breast again because so much breast tissue had to be removed.

One thing I learned at my appointment is that even though cancer cells were found in the excised breast tissue, it's in only 1% of the area. Because it's almost zero, it's possible my oncologist will not change my drug treatment. I have an appointment with her on May 7.

Pathology Result

They found residual cancer cells in my lumpectomy tissue. 😕 I'm disappointed. I was hoping for pCR (pathologic complete response, meaning no cancer cells left) even though I knew the odds were low. At least all six lymph nodes were negative for cancer. 

If I understood the report correctly, I don't need additional surgery. I have a follow-up appointment with my surgeon on Monday. I see my radiologist on Wednesday. She will probably recommend five weeks of radiation. 

I see my oncologist on May 7. She will probably discontinue Herceptin and Perjeta and will put me on T-DM1 (Kadcyla) which is a combination of Herceptin and a chemo drug called emtansine. I hope the side effects are not as bad as regular chemo. One woman in my support group was getting very bad peripheral neuropathy from T-DM1 and had to switch back to Herceptin and Perjeta.

Post-Op

I haven't had much pain, much to my surprise. I've been taking Tylenol in the morning and before bed anyway, just to bring the pain level down to zero.

Yesterday I removed the clear film (Tegaderm?) over my incisions. The steri strips are still there. The incision under my arm has started hurting a bit more after the film was removed. The incisions are longer than I expected, maybe two inches. I don't like looking at them.

One thing I have to do is wear a supportive bra 24 hours a day for the first 7 days. I believe the idea is to keep my breast from moving. They put a breast binder on me at the hospital. I've been switching between that and sports bras I bought for the surgery. Neither one is particularly comfortable.

The MyHealth app that Stanford uses has been updated with the surgeon's notes. In the description it says that five sentinel lymph nodes were removed. But the list at the end of the notes says six were taken out. The surgeon's note says I had a sentinel lymph node biopsy. But the resident doctor who assisted her lists both sentinel lymph node biopsy and axillary lymph node dissection. I assume I got a biopsy. Six nodes is higher than average for a biopsy, but it's also lower than average for a dissection.

Another confusing item is that it says I'm ER negative. I thought I was ER positive. I've sent a message to my surgeon's office for clarification.

If I read the note correctly, it says that the lumpectomy left a rather large hole in my breast and they had to move some breast tissue around to fill the cavity. To be clear, there was no tumor in my breast. Chemo got rid of it. But there were calcifications left behind that may or may not turn into cancer, and there may be microscopic cancer cells lurking in my breast that tests are not sensitive enough to detect. The lumpectomy was to remove most of the calcifications and the area where the tumor used to be.

A 2 x 2 cm device called a BioZorb was placed in my breast. It's supposed to help in targeting radiation later. I don't know if it also helps with the breast shape, but it gets absorbed within two years. I'll have to ask my surgeon if my breast shape will change over the years as the BioZorb shrinks.

Surgery

Had my dreaded surgery yesterday. Got up at 3:30 am to apply EMLA cream to my port. Was able to go back to sleep for 35 minutes before getting up again. Friend Sindhu picked me up at 5:00 am. Arrived at 5:30. Surgery was at the Cancer Center building which has an Ambulatory Surgery Center, not at the main hospital building.

They were able to use my port instead of my arm for an IV. 3:30 am is not an ideal time to apply EMLA cream. I must have applied it in the wrong location because the needle was very painful when it was inserted. They may have also used a larger needle. 

I was given Emend tablets for nausea and a Tylenol tablet pre-op.

The anesthesiologist stopped by and understood that I wanted no pain and no nausea. She said she would use a simple airway on me after she learned I have issues with acid reflux. I told her I wanted to count down from 10 before losing consciousness, but my last memory was being wheeled into OR and seeing an awful lot of people.

I don't know if it started on time, but my surgery was scheduled for 7:15 am. My first conscious memory post-op was at 10:40 am. I don't know what time surgery ended, but the surgeon estimated it would last 1.5 hours. 

I was so drowsy and kept falling asleep and also had nausea. It wasn't till 2:40 that I was alert enough to go home. I had to pee first, and discovered I have blue pee. The surgeon injected me with a blue dye to help locate my sentinel nodes. I still had nausea, but the nurse said I had already been given two doses of anti-nausea meds. They did send me home with a barf bag, crackers, ginger ale, and an alcohol swab to inhale.

Cousin Nancy gave me a ride home. We arrived at 3:45 pm. My friends George and Diane from Pismo Beach had arrived and were waiting for me at home. They're staying with me till Sunday. I spent the rest of the day with nausea and vomiting. I took one Tylenol capsule for pain and promptly threw it up. So I had no painkillers last night, but it wasn't too bad.

I took it easy this morning. Went downstairs for lunch. We went for a drive in the afternoon and bought some groceries at Trader Joe's. George made tacos for dinner. It was excellent. He used taco seasoning from Trader Joe's. I'll have to buy some later.

Not much pain today. I took one Tylenol this morning and took another tonight just in case. I'm wearing the same breast binder they put on me yesterday. My instructions say to wear a sports bra 24 hours a day for 7 days.

The only thing I know about my surgery was that 6 sentinel nodes were taken out. I thought there would be only 2 or 3. I didn't ask about the lumpectomy. I have two incisions, one on the lower right of the breast and another under my arm. I won't know the pathology results till my follow-up appointment on April 26.

Pre-op Procedures

The day did not start well. I woke up to news that my aunt wasn't doing well, and she died soon after. She was my mom's last remaining sibling. RIP Tita Med.

I had two pre-op procedures today. They're usually done the day of surgery, but because I'll be the first surgery of the day, the procedures were scheduled early to save time in the morning. Despite that, I still have to show up at 5:30 am tomorrow for surgery at 7:15.

The first procedure was to place a Savi Scout reflector in my breast. It's supposed to allow better accuracy in locating the tumor during surgery. In my case, because the tumor is gone, it's used to pinpoint the calcification that's left behind. The surgeon will then use a radar device to detect the reflector.

What I didn't know till I arrived for the procedure was that two reflectors would be placed to mark the edges of the calcification. There were two radiologists for the procedure. I think one doctor was training the other. 

A mammography machine was used for imaging. First my breast was compressed between two paddles. While it wasn't as bad as getting a mammogram, it was occasionally painful. I had warned the doctor before that my earlier breast biopsy was extremely painful. So I was given two shots of lidocaine. The first reflector was inserted, but the needle was left in my breast in case the reflector position needs adjustment. It hurt when the needle went deep, so I was given a third shot of lidocaine. Then the second reflector was inserted. Again it hurt, and I got a fourth shot of lidocaine.

Several images were taken while the two needles were sticking out of my breast. The position of one reflector had to be adjusted several times. Then the needles were finally removed. The whole procedure took about 35 minutes with my breast compressed the whole time. Brutal.

Next procedure was an injection of radioactive tracer to locate my sentinel lymph nodes during surgery. I was told the injection would feel like a bee sting, as if it's nothing. I've only been stung once in my life, and it was extremely painful and felt like an electric shock. Thank goodness for the four shots of lidocaine in my earlier appointment. I still felt the injection, but it wasn't as painful as it could have been.

The procedure took 20 minutes. I then had to kill time for 1 hour 40 minutes to allow the tracer to work its way to my lymph nodes. I was told to go for a walk to help the tracer. When I returned later for my imaging appointment, a gamma camera was used to detect the tracer. It didn't take long, maybe 15 minutes.

My breast started to feel sore on my drive home. Tylenol helped.

Second Covid Shot; Update on Side Effects

I got my second covid shot yesterday. The only side effect I've experienced so far is a sore arm. I forgot to bring my vaccination card, but it was no biggie. They gave me a new card and marked it for the second shot. Now I can get a free donut from Krispy Kreme. 🍩

This morning I got my every three weeks infusion. The pharmacy got my drugs ready early, and my infusion ended an hour earlier than usual. It took just a little over two hours.

Next stop was a covid test. It's required before I can have surgery. The test is so unpleasant. They insert the swab very deep into your nose. Even though the test is not painful, it's so awful that I'd rather get an injection. When I drove away from the drive-thru site, I pulled over for a while and cried. I think I got overwhelmed by everything that's going on. This was the first time I cried over my illness. It's been six months since I discovered my tumor. Not bad.

My last chemo session was on Feb. 22. My eyelashes and eyebrows started falling out after that. I didn't lose them all, and more fell out of one side than the other. I lost all the eyelashes on the right and a lot of the right eyebrow. But now new eyelashes are already growing out, and my eyebrows are starting to fill in. 

My hair is also starting to grow out. It's still quite short, less than 1/8", but it's long enough to make my scalp look dark.

Other improvements: 

• My skin is not so dry anymore. I'm not shedding skin all over the place like I used to.
• I've gained weight. My appetite is back, food tastes good again, and I'm eating way more than I should. This morning I weighed 105 at my appointment.
• My fatigue went away about 10 days after my last chemo. It disappeared as quickly as it appeared. I thought it would go away gradually, but no.
• I've had a runny nose since my first chemo. I've gone through several boxes of tissues. Sometimes I'd be blowing my nose nonstop for several minutes. My nose was bloody too. It finally stopped a month after my chemo ended.

What hasn't gone away is the off-and-on diarrhea. It's a side effect of Perjeta. I'm afraid I'll be experiencing diarrhea till December. My potassium was low again this morning. I was given 40 mEq of potassium. It was in powder form this time, orange flavor and very salty. I was given apple juice to mix it with. I'm glad they didn't give me the humongous tablets that I had trouble swallowing.

Tomorrow I have two pre-op procedures scheduled. Surgery is on Wednesday. I was stressing out over the procedures and surgery. Now that I've got my questions answered, I'm feeling more calm. I just wish it hadn't taken such a long time to get them answered.