I am sorry that I haven’t updated in a while. I have had a lot going on, and at times, it has been overwhelming. I realized this morning that a year ago today, I was diagnosed with stage 4 metastatic breast cancer. This past year has been up and down for me. A year after being diagnosed, the two small tumors that I found on the side of my neck are gone. The tumor on my rib on the left side of my back has shrunk but is still there.
For the last two months, my blood has been on the decline. My white blood cell count and red blood cell count have been low, which is normal for me, but my white blood cell count has been dropping and getting close to anemia levels. My ANC, which is the Absolute Neutrophil Count, is also falling. The low end in the range is 1.5, but my oncologist says I can go as low as 1.0, but anything lower than that is serious. At my last appointment at the end of January, my ANC had dropped to 1.1. “ANC is an estimate of the number of infection-fighting white blood cells in your blood. Knowing your ANC can help you and your doctor assess your risk of infection.”
So what does this mean for me and my treatment plan? It means that my cancer meds are wearing my body down. I rarely get enough rest to prevent me from feeling tired, so I am having more bad days than good. On the bad days, I feel like I am much older than I am. I have days where my entire body hurts, and when it’s really bad, I have to take pain meds to get some relief. My next appointment is on the 27th, and I have a feeling that my oncologist is going to lower me to 75mg because it feels like my system is not handling the medication very well anymore. I could be wrong, but I’m not sure. I trust my doctor and will, of course, do whatever he suggests. He reminds me often that the goal is to keep my quality of life as good as possible and to kill my tumor so I will go into remission. I will, of course, update you all after my appointment. Also, my next PET scan is coming up, it isn’t scheduled yet, but it will be in the first week of March.
OK, I do have some good news! I went to the eye doctor for my check-up, my last one was before Covid in 2019, and my prescription changed dramatically. Recently I have felt like my vision hasn’t been as clear as it was before, so I thought that it might have gotten worse. But the doctor told me that I needed my prescription to be lowered, not raised. She asked me when I was diagnosed with diabetes and what my last A1c was. I am very close to being prediabetic, and because of that, my contacts have been too strong for my eyes, hence the blurry issue. She asked me what I had changed, if anything, and I said I had mostly been eating a Keto diet. So Keto has been perfect for me; it has helped me lose a little weight and has made a big difference in my A1c and, therefore, my eyesight. My doctor has told me to keep doing what I am doing because I could possibly eliminate my diabetes which would be wonderful!
I will update again after my next appointment with my oncologist; hopefully, I will have good news concerning my blood labs.
I had my second PET scan on Friday since starting iBrance and Faslodex. I wasn’t nervous about the scan; that part is relatively easy; it’s the uncertainty and having to wait to see my oncologist for the results that is the most difficult part. I also deal with pain during my scan because ever since my first surgery in April 2019, I have had pain when raising my arms over my head, which can become very uncomfortable when I have to stay still in that position for more than a few minutes.
Unfortunately, PET Scans are not as quick and easy as getting X-rays. From checking in to registering, going through the scan process to leaving, I was there for 3 hours. I go alone to the appointments because my husband can’t go back with me while I am being scanned, so it doesn’t make sense for him to be there. He goes with me to my oncologist appointment after my scan, so he will be with me when I get my results. I never know what to expect, so it is comforting to have him with me, no matter what the results turn out to be.
Until I faced breast cancer in 2019, I had never had surgery, a biopsy, a CT Scan, a Bone Scan – Nuclear Medicine, or a PET Scan. I have learned so much in the last three years and eight months about things I wish I had never had to experience. I share as much information as I can with my readers because I want you to not only understand what I have been through and what I am going through now as a stage 4 metastatic breast cancer patient but also to help those who are going through the same journey. It is terrifying when you don’t know what to expect, and you are overwhelmed with information. I try to make it a little easier for those interested in getting the information needed to help themselves through whatever they may be facing or helping a friend or loved one through a difficult time.
What is a PET Scan?
A positron emission tomography (PET) scan is an imaging test that can help reveal the metabolic or biochemical function of your tissues and organs. The PET scan uses a radioactive drug (tracer) to show both normal and abnormal metabolic activity. A PET scan can often detect the abnormal metabolism of the tracer in diseases before the disease shows up on other imaging tests, such as computerized tomography (CT) and magnetic resonance imaging (MRI).
The tracer is most often injected into a vein within your hand or arm. The tracer will then collect into areas of your body that have higher levels of metabolic or biochemical activity, which often pinpoints the location of the disease.
Why it’s done
A PET scan is an effective way to help identify a variety of conditions, including cancer, heart disease and brain disorders. Your doctor can use this information to help diagnose, monitor or treat your condition.
Cancer
Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells. PET scans may be useful in:
Detecting cancer
Revealing whether your cancer has spread
Checking whether a cancer treatment is working
Finding a cancer recurrence
PET scans must be interpreted carefully because noncancerous conditions can look like cancer, and some cancers do not appear on PET scans. Many types of solid tumors can be detected by PET-CT and PET-MRI scans, including:
Brain
Breast
Cervical
Colorectal
Esophageal
Head and neck
Lung
Lymphatic system
Pancreatic
Prostate
Skin
Thyroid
Heart disease
PET scans can reveal areas of decreased blood flow in the heart. This information can help you and your doctor decide, for example, whether you might benefit from a procedure to open clogged heart arteries (angioplasty) or coronary artery bypass surgery.
Brain disorders
PET scans can be used to evaluate certain brain disorders, such as tumors, Alzheimer’s disease and seizures.
Risks
For your PET scan, a radioactive drug (tracer) will be injected into a vein. Because the amount of radiation you’re exposed to in the tracer is small, the risk of negative effects from the radiation is low. But the tracer might:
Expose your unborn baby to radiation if you are pregnant
Expose your child to radiation if you are breastfeeding
Cause an allergic reaction, although this is rare
Talk with your doctor about the benefits and risks of a PET scan.
How you prepare
Tell your doctor:
If you’ve ever had a bad allergic reaction
If you’ve been sick recently or you have another medical condition, such as diabetes
If you’re taking any medications, vitamins or herbal supplements
If you’re pregnant or you think you might be pregnant
If you’re breastfeeding
If you’re afraid of enclosed spaces (claustrophobic)
Your doctor will give you detailed instructions on how to prepare for your scan. A general rule is to avoid strenuous exercise for a couple of days before the scan and to only drink water after midnight before the day of the scan.
What you can expect
The PET-CT or PET-MRI scanner is a large machine that looks a little like a giant doughnut standing upright, similar to CT or MRI scanners.
From start to finish, the procedure takes about two hours to complete and typically does not require an overnight hospital stay. When you arrive for your scan, you may be asked to:
Change into a hospital gown
Empty your bladder
A member of your health care team injects the radioactive drug (tracer) into a vein in your arm or hand. You may briefly feel a cold sensation moving up your arm. You rest and remain silent in a reclining chair for 30 to 60 minutes while the tracer is absorbed by your body.
During the procedure
When you are ready, you lie on a narrow, padded table that slides into the part of the scanner that looks like a doughnut hole. During the scan you must be very still so that the images aren’t blurred. It takes about 30 minutes to complete a PET-CT scan and 45 minutes for a PET-MRI scan. The machine makes buzzing and clicking sounds.
The test is painless. If you’re afraid of enclosed spaces, you may feel some anxiety while in the scanner. Be sure to tell the nurse or technologist about any anxiety causing you discomfort. He or she may give you a drug to help you relax.
After the procedure
After the test you can carry on with your day as usual, unless your doctor tells you otherwise. You’ll need to drink plenty of fluids to help flush the tracer from your body.
Results
A doctor specially trained to interpret scan images (radiologist) will report the findings to your doctor.
The radiologist may compare your PET images with images from other tests you’ve undergone recently, such as MRI or CT. Or the PET images may be combined to provide more detail about your condition.
I hope this explanation of PET scans helps you to understand what is involved and what cancer patients go through as a regular part of their care. Depending on the type of cancer and the treatment plan, most cancer patients are scanned every three to six months. I am scanned every four months because my cancer, in both 2019 and currently, has proven to be aggressive, so my oncologist feels that every three months is too often, but every six months is too long between scans, making both him and me nervous.
I will post again once I have my results, but in the meantime, if you have any questions, don’t hesitate to get in touch with me. Thank you for being here! 💕
Many people have asked me to explain what Metastatic Breast Cancer is and what it means for my future. There are a lot of misconceptions out there as to what a stage 4 MBC diagnosis means. The information below is an excellent explanation, that is clear and easy to understand. I previously posted an article specifically about the Myths and Misconceptions About Metastatic Breast Cancer which highlighted many of the questions that I have been asked since being diagnosed back in March.
Metastatic breast cancer {also called stage IV} is breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body. Although metastatic breast cancer has spread to another part of the body, it’s still breast cancer and treated as breast cancer.
The most common breast cancer metastasis sites are the bones, the lungs, the brain, and the liver. The symptoms of metastatic breast cancer can be very different depending on the location of the cancer cells.
Bone Metastasis: Symptoms and Diagnosis The most common symptom of breast cancer that has spread to the bone is a sudden, noticeable new pain. Breast cancer can spread to any bone, but most often spreads to the ribs, spine, pelvis, or the long bones in the arms and legs.
Lung Metastasis: Symptoms and Diagnosis When breast cancer moves into the lung, it often doesn’t cause symptoms. If a lung metastasis does cause symptoms, they may include pain or discomfort in the lung, shortness of breath, persistent cough, and others.
Brain Metastasis: Symptoms and Diagnosis Symptoms of breast cancer that has spread to the brain can include headache, changes in speech or vision, memory problems, and others.
Liver Metastasis: Symptoms and Diagnosis When breast cancer spreads to the liver, it often doesn’t cause symptoms. If a liver metastasis does cause symptoms, they can include pain or discomfort in the mid-section, fatigue, and weakness, weight loss or poor appetite, fever, and others.
Cancer cells can break away from the original tumor in the breast and travel to other parts of the body through the bloodstream or the lymphatic system, which is a large network of nodes and vessels that works to remove bacteria, viruses, and cellular waste products.
Breast cancer can come back in another part of the body months or years after the original diagnosis and treatment. Nearly 30% of women diagnosed with early-stage breast cancer will develop metastatic disease.
Some people have metastatic breast cancer when they are first diagnosed with breast cancer (called “de novo metastatic”). This means that the cancer in the breast wasn’t detected before it spread to another part of the body.
A metastatic tumor in a different part of the body is made up of cells from the breast cancer. So if breast cancer spreads to the bone, the metastatic tumor in the bone is made up of breast cancer cells, not bone cells.
Being diagnosed with metastatic breast cancer can be overwhelming. You may feel angry, scared, stressed, outraged, and depressed. Some people may question the treatments they had or may be mad at their doctors or themselves for not being able to beat the disease. Others may deal with the diagnosis of metastatic breast cancer in a matter-of-fact way. There is no right or wrong way to come to terms with the diagnosis. You need to do and feel what is best for you and your situation.
Keep in mind that metastatic disease is NOT hopeless. Many people continue to live long, productive lives with breast cancer in this stage. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.
While metastatic breast cancer may not go away completely, treatment may control it for a number of years. If one treatment stops working, there usually is another one you can try. Cancer can be active sometimes and then go into remission at other times. Many different treatments alone, in combination, or in sequence are often used. Taking breaks in treatment when the disease is under control and you are feeling good can make a big difference in your quality of life.
Yesterday I had my first three-month PET Scan to see if the iBrance and Faslodex have made any progress in shrinking my tumors and preventing them from spreading. I was not nervous about having the scan done; unfortunately, I have had two of them before now. I am, however, anxious about the results, which I will get on the 18th when we meet with my oncologist. I need to see that they have shrunk or, at the very least, haven’t grown or spread. Seeing progress is everything to me right now because it is so hard to look forward to the future when I don’t know how I am doing.
I haven’t been writing much lately, and I am sorry about that for both my readers and me. Writing in my blog can be very therapeutic, but things have been difficult since I was diagnosed with stage 4 metastatic breast cancer. My moods can vary so much daily, and that, of course, affects everything during my day. Some days I am very optimistic, so I think about future travel and plans, and on others, I worry about my husband and what will happen when I am gone.
I can’t find the words to elaborate on anything more as I am not feeling well. I will write more on Monday or Tuesday next week once I have the results from the PET scan.
I was pretty wiped out when I got home from my appointment on Monday, so that’s why I am just now updating you. Each appointment is usually about 2 hours long, from checking in to leaving, and depending on how I am feeling on that particular day, it can take a lot out of me. Below is an explanation of what happened during those two hours.
When I check in, I fill out a short form with my name, arrival time, if I have been recently hospitalized and if I have changed my insurance. I give the staff my name, birth date, and the short form. The staff person goes into a drawer and pulls a file with two more forms for me to fill out, hands me a clipboard, and they put a hospital bracelet on me. I sit in the waiting room, which is almost always pretty full, so about 16 to 18 people, both patients, and caregivers. The first form is a general form asking about any recent side effects, hospital stays, surgeries, medications, allergies, and what questions I have for my doctor. The second form is a suicide form with a few questions about self-harm and caregiver abuse. It is sad that such a form exists, but it is a reality for cancer patients, especially older patients. I fill out both forms, keep the forms with me and return the clipboard to the check-in area. This process is done every time I have an appointment.
Next, I am called back to the lab area, where I hand the tech my completed and signed forms. They weigh me, take my temperature, blood pressure, and oxygen. The tech then asks me about my pain level and if I am constipated, both common issues while undergoing cancer treatment. Last, the tech draws two vials of blood, puts them in the machine for processing, and walks me to the exam room. To give you an idea of how big this office is, there are eight doctors and twelve exam rooms.
Everything is very efficient, so I rarely have to wait longer than five minutes before my Oncologist’s PA comes in and hands me the results of my blood panels. I see his PA almost every time I have an appointment, and every other time I am there, I see both my Oncologist and his PA. On Monday, the PA said that everything looks good considering the treatment plan I am on. My white and red blood cell counts are a little low, but nothing to be overly concerned about. My ANC is low again but not too low, so hopefully, it will stabilize as I continue my treatment.
The last part of my appointment is when I go back to the chemo treatment room to get my injections. This is generally the longest part of my appointment because the medicine for my injections isn’t ordered from the pharmacy (which is in-house) until my Oncologist or PA has seen me and approved for me to get my injections, which is determined by my blood panel results. Once my nurse gets the injections from the pharmacy, she warms them because the medication is so thick, so this adds on extra time for me to wait, but it is an important step. Once the injections are sufficiently warmed, I am taken into “The Shot Room,” and I am given my injections which take several minutes due to the amount of medication. I mentioned on Monday that I have a lot less pain and discomfort after my injections if they massage the area after taking the needle out. By massaging the site of the injection, they help the medication disperse quicker. My nurse thanked me for letting her know that info and said she would pass the word on to the other nurses. Patients are often scared to speak up about even a minor issue, and it doesn’t need to be that way. I have learned to be very open no matter how embarrassed I might be because I know that after coming to see my oncologist and his staff for over three years, they want me to be open, honest, and, most importantly, not to suffer in silence if something is causing me issues. So please remember, you are your best advocate when it comes to our healthcare system!
So what is next? I started back on iBrance on Monday after having a much easier time on the lower dose. On July 11th, I will have my PET scan to check the size of my tumors. Hopefully, they will be smaller, which means that the medications are working. On July 18th, I will go back to my oncologist’s office for my monthly appointment and get the results of my PET scan. My husband will go with me on the 18th but not on the 11th. Unfortunately, I am used to PET scans now, so he does not need to go with me.
I had an appointment with my oncologist on Monday to run my blood panels, talk about my side effects and get my third round of Faslodex injections. I spoke with the PA first about the medications I had picked up at the pharmacy over the last week for nausea and heartburn. I assured her that both were working great, so I was finally getting some relief.
My oncologist came into the exam room and handed me my blood panel results, and it was not what I expected. I knew that certain levels would be off but for them to be where they are after only three weeks on iBrance was a shock. My white and red blood cell counts are low, not dangerously low, but lower than we would like, and my ANC is low. ANC, Absolute Neutrophil Count, is the “infection-fighting” count. My count is .8, and the low end of normal is 1.25, so I am at high risk for infection. I need to stay away from crowds, busy restaurants, and people who have a cold or the flu because I could end up in the hospital with an infection and become severely ill.
After taking in the initial shock of this news, my doctor said he was very concerned, so he told me to stop taking iBrance for the next month. The break in taking the medication should give my system a chance to get back to normal levels. I had already received this next round of drugs from Pfizer because I was scheduled to start back on it after a week off a few days ago on Monday. We did discuss dropping my dose from 125mg to 100mg, but we will only do that if my bloodwork doesn’t improve. So, for now, he told me to hold on to the meds, so I will have them to take again starting on May 23rd.
Once I was done discussing everything with my doctor, I went back to the infusion room to get my Faslodex injections. Have I said how much I hate injections? I absolutely hate injections, but that is the only way this particular drug is administered, so I don’t have a choice. It seems that each time I have the injections, I have different side effects from them. Generally, I deal with headaches, bone pain in my hips, and, as with this last time, pain from the medicine itself. I have a small area on the left side near the injection site that is causing me some pain, but it has improved each day. Some good news is that I am done with the initial three doses, so now I will have the injections monthly instead of every two weeks.
During my next appointment on May 23rd, I will see my oncologist, have my blood panels run, and get my Faslodex injections. This will be my regular schedule moving forward every month for an indefinite period of time.
