I arrived at the hospital at 9am. A friend had flown down from NYC to sit with me during the first chemo infusion. They took my blood at the lab through my arms, but next time they will take it through the port. I met with the doctor briefly. He gave me prescriptions for steroids, nausea and antibiotics in case I needed them after I left the hospital. I paid my $40 co-pay and then was ushered into the treatment area. Mount Sinai has both small rooms with beds and cubicles. I was assigned to a room. At first I was not sure that I wanted a bed, but the extra privacy, including a private bathroom, convinced me otherwise. The bed can be cranked up to a sitting position.
The oncology nurse, Alex, came in and told me what was on the menu – first, some pre-infusion drugs to help combat nausea and prevent an allergic reaction. One of the drugs was benadryl, not sure what the other was. He hooked my port up to the IV – I could not watch. I did not realize this, but the port is actually buried pretty deep. The scars on my upper chest and neck is where they made the incisions, but the device is reached by a needle. This cuts down on infections. It took the nurse about 5 minutes to hook me up. The pre-chemo drugs took about an hour. Then each of the chemo drugs are given serially, one after the other. First Taxotere, which is the most toxic. That took about an hour. Then Perjeta, which took another hour, and finally Herceptin, which took about 2 hours. I was done around 3pm.
I did not have any bad side effects from the drugs while I was at the hospital. I became a little tired. A volunteer brought me and my friend a tuna sandwich around noon, which we devoured. When the chemo was complete, we went home.
Week 1 Side Effects – What Side Effects?
I was told that the side effects would kick in around day 3 after chemo. The pre-infusion drugs wore off after about three days, and the doctor had me take a steroid for two days after my infusion. I was warned that nausea, diarrhea, constipation were all potential side effects. I had none of these. The first couple of days I had some very brief intimations of nausea, but they lasted just for a second (thank you pre-chemo drugs). I had neither constipation nor diarrhea, although I drank a lot of water and made sure to eat high-fiber foods, so that may have helped. My skin got a little splotchy in some places. I went for a jog on the treadmill two days afterwards, and my little toes got blistery (which they don’t usually do), so that might be something. I feel my hair ready to fall out – it just sits a little funny on my scalp. I have brief bouts of cramps. I do well at the beginning of the day, but I get a little tired early afternoon.
My doctors scheduled me for a PET-CT, which is apparently the most common test known to cancer patients. The PET-CT is used to spot tumor activity throughout the body. You are given an injection of glucose bonded with some kind of radioactive element. Based on what I have read, cancer cells react to sugar (it makes them active), and they become visible to the PET-CT imaging. A PET-CT scan will see tumors and potential tumors where an MRI and other imaging technologies will not. Doctors use PET-CT to diagnose cancer stages and to see how effective cancer treatments are in stopping or eliminating tumors. People who are in remission will still have periodic PET-CT scans to make sure the cancer is not coming back. For this reason, the PET-CT
I was not given any advance notice about what to do to prepare for the PET-CT. I called the clinic, and they told me not to eat anything for six hours. Further, they said “don’t eat any carbs!” My friend and I were having pasta for dinner, so the climic staffer on the phone suggested that I stop eating 12 hours before my appointment, which is what I did.
We arrived at the clinic. The technician took me quickly. The first part of the procedure is to get an IV injection of the glucose and the radioactive tracer. The nurse gave me the injection, and then I had to sit quietly for an hour while the stuff made its way through my system. The second part is to lay quietly in the PET-CT donut while it takes pictures of your insides from the base of the skull to mid-thigh. The PET-CT machine is similar to an MRI, except the PET-CT is open on both ends, the hole that you travel through is much larger, and the barrel of the PET-CT is much shorter. Oh, and the PET-CT does not make any noise. Only part of your body is inside the PET-CT donut at a time. I am very claustrophobic, and I had planned to take Valium for this visit. The technician said I probably would not need it. I took a look at the contraption, and thought I would try it without Valium.
On the PET-CT table you lay on your back. You start with your arms over your head, but the technician can come in about two-thirds of the way through and let you lower your arms if you are uncomfortable. It takes about 35 minutes to get a skull-to-thigh scan. First the machine slides you through the donut three times while lasers flash around you so that the machine can get an idea of your dimensions in the donut. Then you go into the donut head first, and the machine scans segments of you, five minutes at a time. When the machine finishes with one area it pushes you further through the donut and out the other side, so that after the second go-round your head is probably completely out of the donut. This was helpful for me, because of claustrophobia. I got a good look at the outside of the donut as the machine pushed me along.
I was fine in the PET-CT machine without Valium. I had a couple of high anxiety moments at the very beginning, while my head was still in the donut, but it was pretty easy to calm down. I listened to a podcast on my phone while I was undergoing the PET-CT. You can also wear your street clothes inside the PET-CT, although you have to remove any metal.
I had no reactions to the PET-CT. The most nerve-wracking aspect of the test is that it will show tumors and potential tumor activity throughout your body, so waiting for the results is a little scary.
My first surgery experience ever was the installation of a chemo port (a Power Port) . A port is a semi-permanent (it will be removed eventually) access to your venous system to make it easier for the doctors to administer chemotherapy, and to make it easier for your veins to accept chemotherapy because the doctors do not have to search for a vein to insert the IV each time. In his office, the surgeon told me the port surgery was “minor,” would take about 30 minutes, and was given outpatient under sedation (not general anesthetic). In reality,while it is outpatient surgery, it’s a step or two above minor surgery. I was very anxious leading up to the procedure, but everyone was nice and I don’t remember anything after they started to roll me into the operating room, and I had no problem waking up. The experience was not terrible, and having gone through it I feel more confident about the mastectomy/lumpectomy to come in September.
I was asked to arrive at the hospital two hours before the procedure was scheduled. (I think the scheduled time corresponds to the surgeon’s schedule.) I got there around 10:30 for a 12:30 procedure. A friend came with me to drive me home. I was first processed through administration, then we waited for a nurse to process me in another location. My friend was able to come along. The nurse asked a lot of medical history questions, outlined the process (how I would get from the waiting room to pre-op, to the operating room, to the recovery room to discharge), and answered any questions. I am a very anxious person, and I was stressed out. She did her best to reassure me. I had to give blood for a CBC and also take a pregnancy test (!) which is a requirement in the State of Florida. Fortunately, I was not pregnant.
After meeting with the nurse, we went into a big waiting room and waited for about two hours. There is a big waiting room, and a smaller waiting room where friends and family who are accompanying surgery patients can wait. A screen with an ID number shows where each patient is in the process, and there are snacks in the smaller waiting room. We stayed in the big waiting room, where I paced for about two hours. Some of the volunteers tried to reassure me, which was nice, but when i am anxious I do better by pacing than by sitting still. Around 1:30pm an orderly came to fetch me. My friend and I went to another area where I changed into the surgical gown and jumped into a rolling bed. My friend walked with me and the orderly to pre-op, where she had to go back to the waiting room.
In pre-op, all of the nurses and anesthesiologists and others who would be assisting the surgeon in the OR introduced themselves to me and explained their role. I was still very nervous. One of the doctors distracted me while the nurse put in the IV for the anesthetic. They could not give me Versed – the anti-anxiety med – until after I met with the surgeon and he explained to me the procedure and I was able to give consent. He was running late, so the nurses were kind enough to sit with me and talk to me. The pre-op area was very crowded with beds, doctors and nurses. Around 2:30 my surgeon arrived to speak with me. A few minutes later, the nurse gave me the Versed, which made me forget my anxiety. I chatted freely with the nurses. Probably just before 3pm they gave me the MAC sedative – I think it was propophol. The nurse told me she was giving it to me, I felt the bed being wheeled into the operating room, I asked the nurse something about it, and that’s all I remember.
When I woke up, I was being wheeled out of the recovery room and into the discharge room. As soon as I was aware of waking up I was fully awake. I had a little pain, and the anesthetic nurse pushed some pain meds through the IV. They then had me sit in the discharge room for about half an hour before I could leave. They brought my friend in. It was 5pm when we left the hospital. Even though the procedure probably took about an hour, my friend and I were at the hospital for about seven hours. When the surgery was over, and I was in recovery, the surgeon came out to talk to my friend to let her know how it went.
An Aside About Anesthesia
So, apparently the propophol made me “agitated,” which I was told was a possible side effect. As a result, the anesthesiologist switched to a general anesthetic, delivered as a gas (I was wearing an oxygen mask, so I was not intubated). They made me sign a release ahead of time allowing them to use both sedation and general anesthesia – just in case the sedation did not work, the nurses said. I was relieved that they were not going to use general anesthesia, but as it turned out I had zero ill effects from it, so I would do it again.
The port was a little red and swollen at first, and then dulled to a bruise after about 48 hours. They gave me the painkiller ultracet, which is a less narcotic form of percocet. This made the pain go away, and made me feel just a little mellow. Nothing like the peaceful well-being of Valium or Versed. I stopped taking it the next morning so I could drink some wine with dinner, and I was OK. The place where the port was implanted is a little tender, and my throat is a little scratchy. According to the Internets, this is perfectly normal. I may take an ultracet before bed for a few days to help me sleep without worrying about the scratchiness of the port.
My surgeon at Mount Sinai got me a next-day appointment with a medical oncologist. I was so overwhelmed with the amount of information I received from my meeting with the surgeon that I hyperventilated nonstop in-between appointments. Fortunately, my meeting with the medical oncologist and his staff set me more at ease, and I stopped hyperventilating. They answered a bunch of questions I had about the timeline, the side effects and dietary restrictions. Before I left, they set up my first chemo appointment (the day after my port implant).They also explained to me how the chemotherapy worked and introduced me to Dr. Lisa, a psychologist who works on the treatment ward. I felt ready to tell my family and my boss about my diagnosis once I left.
Details of My Case
The medical oncologist assured me that the initial chemo I would receive was extremely effective at reducing and sometimes eradicating the kind of breast cancer I have. He said that some people had been cured, thanks to Herceptin, the monoclonal antibody that had been developed for HER-2. The second drug, given only before surgery, was a new combination that increased the effectiveness. He said that, even if the tumors were eradicated, the surgeon would still remove the affected tissue, and that I would probably have a mastectomy on my right breast. Fortunately, the MRI showed that the chest wall as not involved in the tumor (although the PET-CT could, potentially, show something), so I would probably be out only for a couple of weeks after surgery. After surgery I can expect radiation, followed by probably six months of some kind of modified chemo. With the exception of the surgery, all of the treatment is outpatient. I will be able to work through it all, although I will be out for probably two weeks for surgery.
After the MRI and the biopsy results were in, I met with my surgeon at Mount Sinai. I knew that the results were positive, but I did not know what kind of breast cancer I had, and what type it was. My surgeon at Mount Sinai here in Miami is a very high-energy, positive individual. But there was so much information to digest that it was just overwhelming, and I broke down. Most of what he said was hopeful. However, the realization of what was ahead of me was just too much. I then got in my car, attended a meeting at work, and then drove an hour in the opposite direction to get a second opinion from the Cleveland Clinic in Weston. The good news is that the second surgeon recommended the same treatment that my Mount Sinai surgeon recommended. She gave me a little more information, too. But it was really TMI for one day, and I spent the next 24 hours hyperventilating. Thank goodness, my Mount Sinai surgeon scheduled a meeting with the medical oncologist for the next day. That meeting was much better, in part because I had an evening to get used to the idea. See the next post for the details of this meeting.
Even though you may go into this meeting already knowing that you have cancer, I think it is a good idea to take someone with you for this visit. While I was able to drive myself home, I was just overwhelmed with the information and completely freaked out.
I have invasive ductal carcinoma that is HER-2 positive. The are going to treat it with a monoclonal antibody called Herceptin combined with a new drug called Perjeta along with chemotherapy for four months before surgery. After surgery there will be radiation followed by a modified chemo. I go for a PET-CT Scan on Saturday, followed by an echo cardiogram on Tuesday (it’s an ultrasound of the heart – no big deal), followed by the installation of a chemo port on Thursday and the first dose of chemotherapy on Friday. So a lot in just a one-week period. One of my best friends is flying down from Philadelphia to hold my hand during the installation of the port and the first dose of chemo.
I took 10mg of valium – which was too much because I had not eaten for more than 6 hours. Eat before you take valium. About 5 minutes later the nurses put the IV in my arm. They then took me to the MRI chamber. For a breast MRI, you lay face-down on the table with your breasts in a metal container that separates them so the MRI can see both clearly. For people who are claustrophobic like me, this was a much easier MRI experience than laying on my back. The technicians spoke to me in between pictures and let me know how long each sequence was going to be. This also helped and I did not have any problems.
1. Take valium 20 minutes before. 5mg-10mg, depending on your weight. I took 10mg because I am claustrophobic. It was a little too much. I should have taken 7 mg.
2. Use the earplugs and the headphones. The machine makes a racket.
3. Remember that the MRI does not hurt. It makes an awful racket, however. To help me through this (and again to ease my claustrophobia), I listened to a YouTube video called Sounds of the MRI a couple of times before my appointment. It helped a lot.
My doctor ordered a breast MRI with and without contrast. To do this they had to give me an IV so that they could see contrast in the breast tissue.
TMI – Don’t Read if Squeamish
The MRI was a scary proposition for me because of my claustrophobia and because I never had an IV before. I took 10mg of Valium instead of my usual 7mg because of this, and I took it on an empty stomach. This was a bad idea. When the technician came to put in the IV – I turned my head and said “I can’t look.” But I was so tense waiting for the IV to go in that I overdid it – the Valium, the empty stomach, the extreme anxiety of anticipation. When the nurse put the IV in, I felt dizzy. The technician looked at me and started to talk to me. I forced myself to respond. They brought the nurse in. I had a vasovegal response, which is a condition that is triggered by an event or a series of events (in my case, no food, lots of Valium, extreme anxious anticipation) and often results in fainting. I did not faint, but I felt dizzy. The nurse brought me a glass of apple juice. I drank it slowly and after a few minutes felt better and we went into the MRI room. The MRI itself was not a problem for me.
Slightly uncomfortable, but not painful. They biopsied two areas – a lump in my breast and another in a lymph node under my arm. It took about 30 minutes. I had a core biopsy, which is larger than a needle aspiration biopsy.
1. Take valium 20 minutes before. 5mg-10mg, depending on your weight. I took 7mg.
2. Encourage the doctor to use extra local anesthetic
3. I squeezed on one of those hand-held stressballs. It helped.
I have a lump in my breast and, most likely, a lump in my lymph nodes. My primary care physician got me an emergency consult with a cancer surgeon. The cancer surgeon prescribed the biopsy to be followed by an MRI. I was particularly anxious about the biopsy because a friend of mine, who had a different kind of cancer, had a very bad experience during her biopsy.
TMI – Don’t Read if Squeamish
When it was over, and because I did not experience any pain, I asked the doctor to show me the length of the needle…. It was quite long.