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.
On Monday, I had my monthly appointment with my oncologist. As usual, my vitals were taken, and my blood was drawn for my regular blood panel, which is a CBC w/differential. A CBC w/ differential measures the number of red blood cells, white blood cells, and platelets in the blood, including the different types of white blood cells (neutrophils, lymphocytes, monocytes, basophils, and eosinophils). The amount of hemoglobin (a substance in the blood that carries oxygen) and hematocrit (the amount of whole blood that is made up of red blood cells) are also measured. A CBC with differential is used to help diagnose and monitor many different conditions, including anemia and infection.
When my doctor came into the exam room, he handed me my blood panel results and told me that my blood looked good this month! My white blood cell count went up from last month to 3.9, which is only .1 from the low end of normal, and my ANC went up to 1.7, which is .2 into the acceptable range, which is the highest it has been since I started my medication in March. WBC count, RBC count, and ANC are the primary three levels that my oncologist looks at. My red blood cell count is lower, so it needs to be watched because if it lowers any more, I could develop Anemia. I take Iron every day, and I have been getting my B12 shots, so I am hoping that in the next month, my RBC count will improve.
Once we were done discussing my results, my oncologist said that he felt I was doing well and that I had adjusted well to my medications, so there was no need to change my treatment. We discussed the frequency of PET scans, and we agreed that I would have my next PET scan in early March, four months after my last one.
Yesterday I was not feeling well, which is not uncommon after starting to take the iBrance again after a week off and getting my Faslodex injections. Today I am in quite a bit of pain, primarily overall body pain, mainly from the Injections. Faslodex, for me, is very unpredictable. Some months I can barely tell I have had the injections, sometimes, I get terrible headaches and injection site pain, and sometimes, my whole body hurts like it does today. Generally, any discomfort or pain goes away with Tylenol and only lasts for a day or two if I have any at all.
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 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:
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:
Head and neck
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.
PET scans can be used to evaluate certain brain disorders, such as tumors, Alzheimer’s disease and seizures.
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.
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! 💕
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.
A few days ago, I had a CT Guided Biopsy of my 8th rib on the left side, on my back. Everything went well; I am in a little bit of pain, but nothing that Tylenol can’t help. The doctor instructed me to rest for the rest of the day on Thursday, remove my bandage on Friday, and resume my normal activities.
After finishing my paperwork in the hospital registration office, I went to the lab to have my blood drawn for a few panels; among a few other things, they had to check my kidney function before doing the CT, and after that, I went to radiology to wait to be taken to the pre-op area.
Once my nurse was done prepping me for my procedure, my anesthesiologist came to get me and take me to the CT room. He explained that he would only give me enough medication to make me relaxed and a little sleepy but not entirely out. He said that if I did get sleepy not fight it and let myself fall asleep. I did fall asleep for some of the procedure, but I don’t think it was for very long because the process only took about 30 minutes.
When I walked into the CT room, they had me lay on my stomach on the CT table. I was shocked to find out that the lesion is actually on my 8th rib on the left side of my back, not in the front, and it is very close to my spine, so that has me a bit concerned. The rib that I fractured some 18 years ago, that I was thinking was what was showing up in my scans, was a few ribs down from where the lesion is located, so it has nothing to do with the lesion at all. So with that said, I don’t know what to expect when I meet with my oncologist next Tuesday to get my biopsy results.
I have had many people ask me what I think of all of this, how I am feeling, and what my gut is telling me. I can’t help but see the similarities to the first time I went through cancer three years ago. With every appointment, things get worse and worse, more scans, more biopsies, etc. As before, I want to know what type of cancer I have to fight against, and I want to get started on whatever treatment plan my doctors and I agree on as soon as possible so I can get this over with and move on.
I am feeling OK so far. Even if the lesion on my rib is positive for cancer, it appears to be localized like the tumors in my neck, so it is not as aggressive as it was in 2019, and because of that, I have been feeling much better physically this time around so far. Mentally I am up and down; the stress is unreal because this is the moment as a cancer survivor that I have been fearful of, having to deal with recurrence.
Lastly, what is my gut telling me? I will be shocked if the lesion on my rib is negative for cancer. After reading the PET scan report and looking up a few medical terms that I had not seen before, I immediately thought that it would be a bad result once the biopsy results came in. I, of course, hope that I am wrong, and in a few days, I will know for sure.
I met with my oncologist this past Tuesday to discuss the results of my PET Scan. I was shocked to hear that I have two tumors in my neck, not just one. I found them early, so they are small, 0.9 x 0.5 cm and 0.5 x 0.5 cm. So small, under 1 cm, that they usually wouldn’t have done a biopsy on them, but I had already gone to my surgeon to have the initial ultrasound and biopsy done and had received the results already. I am happy that I took that initiative and went to see my surgeon as soon as I found the tumors so that I found out sooner rather than later that my cancer had returned.
The spot on my rib is still causing concern; it has been determined that it is a lesion that was not on my previous PET Scan in 4/2019. So with the fact that it was not on the last PET Scan and the combination of findings from the recent PET Scan, they are concerned that it is a solitary bone metastasis. My oncologist ended up ordering a biopsy of my rib after our discussion. So next Thursday, I am going to the hospital to have a biopsy of the lesion done. I will have both a local drug and anesthesia for the procedure. The procedure will take about an hour, and I will be in recovery for about 2 hours as they want to keep a close eye on me for bleeding and excessive pain. Unfortunately, I have to go through this biopsy to know if the lesion is cancer or not because it could change my treatment plan if it is positive for cancer, and I then have two different locations on my body with cancer.
Because I am having the biopsy done this coming week, I cannot continue planning with my radiation oncologist at this time. It is good that she now has the images she needed to determine my scope of treatment and if it is possible to treat the tumors in my neck, but the biopsy results could change everything. The lesion on my rib is on my 8th rib, right under my left breast, so as far as I know, it is located in the previous scope of treatment done in 2019/2020.
So my oncologist and I discussed what would happen if I couldn’t have radiation treatment. As far as my neck is concerned, he doesn’t want me to have to undergo surgery, but it is a possibility that I may have to go that route. When it comes to my rib, he didn’t want to speculate on it much. I asked him if it is common for there to be one tumor in one location when it comes to bone cancer, and he said it is unusual but not impossible.
Yesterday my husband remembered that I had pain in my rib several months ago. While we were discussing it, I remembered that I mentioned it to my surgeon when I saw him for a follow-up appointment in September. I pointed to the location of the pain and told him that I felt a bump there as well. When he felt the spot that was hurting me, he said, “that is your rib,” and I told him that I didn’t realize it was my rib because I had never been able to feel my rib so easily when I weighed much more than I do now. He asked if I remembered bumping into something or hurting it somehow, and I couldn’t recall doing anything like that. So I felt it yesterday, and when I pressed on it, it still hurt, and the bump was slightly more significant. So now that I remember that conversation with my surgeon, I am very anxious to get the biopsy done and meet with my oncologist to discuss the results and what will happen next.
I know this might not be common, but it seems that my body will cause me random pain, and then I find a tumor one to two weeks later. It has happened to me three times in a row, so I can say without a doubt that I will never, ever ignore any pain I might have in the future, especially if it is around my bones. My experiences are listed below; I don’t believe that this is a coincidence anymore.
Pain in my lower neck, to shoulder, to the shoulder blade = breast cancer
Pain from my outer ear, up the side of my head, to the top of my head = breast cancer in the lymph nodes in my neck
Pain in the 8th rib under my breast = most likely more cancer, not sure of the type due to location
I will update again next Thursday, depending on how much pain I am in, or Friday about my biopsy. Thank you for being here!