August PET Scan Results

I apologize for not writing a post sooner. Up until a week ago Monday, not much has been going on. All of my blood panels have been looking normal, well, for me anyway, with the typical rise and fall of my white and red blood counts and my ANC.

On July 10th after I went in for my regular monthly appointment with my oncologist I was feeling so good and energetic that I went home and worked out for the first time in ages. Now it is a month later and I am still working out and other than some intense fatigue last week, I have been feeling well and like I have completely recovered from the radiation treatments.

On July 31st, I had my PET Scan to see if the radiation treatments effectively treated the lesion on my rib in my back. I had the scan a month later than usual to give my body time to heal from radiation. I saw my medical oncologist on Monday this week for my regular appointment and to get the results of my PET Scan. The results are not the worst news, but not the best news either, but something in between, so I will do my best to explain what the results are and what they mean. {oddly enough, the doctor that read my scan and wrote the report is the wife of my medical oncologist}

As far as the lesion on my rib in my back is concerned, the report said that “there is increased sclerosis of the left eighth posterior rib with decreased FDG {fluorodeoxyglucose} uptake, SUV 2.0, previous SUV 4.2. Findings suggest favorable treatment response, with reported interval radiation therapy.” So, the lesion is still there, but its activity is less than half of what it was in the March PET scan. Increased sclerosis is a sclerotic lesion that is an unusual hardening or thickening of your bone. They can affect any bone and be benign or malignant. In general, they’re slow-growing.

I have never had any mention of my lungs until now. I have a “new ground-glass opacity in the posterior lower left lobe that measures 3.0 x 1.9cm and is adjacent to the left eighth rib metastasis. Given the interval development and radiation therapy, this is favored to reflect radiation pneumonitis/fibrosis.” Pneumonitis/fibrosis refers to the signs and symptoms of soft tissue injury resulting from radiation therapy. All soft tissues within the radiation field can be affected, including skin, connective tissue, muscles, nerves, and blood vessels. At this time, it is believed that this is just scarring from the radiation therapy, but my doctor will keep an eye on it. The activity SUV of this spot is 2.6, which is within the range of where my body runs, so hopefully, it will stay that way.

Now for one of the more serious findings from my PET scan. “Subtle new FDG avid lesions in the T8 spinous process, SUV is 2.1 and left S2 segment, SUV is 2.2; worrisome for new osseous metastases.” S2 is located at the level of the posterior superior iliac spine. S2 covers the back of the thighs. What does osseous metastasis mean? Bone metastasis occurs when cancer cells spread from their original site to a bone. Nearly all types of cancer can spread (metastasize) to the bones. But some types of cancer are particularly likely to spread to bone, including breast and prostate cancer. The good news with this finding is that the SUV in both areas is below where my body runs, so just as with the spot on my lung, they will keep a close eye on both sites and see if the activity increases.

The last finding in the report is “Increased FDG uptake within a left supraclavicular lymph node measuring 8 x 15mm. SUV 2.9, previously 2.2.” FDG uptake reflects the tissue glucose metabolism and is usually high in high-grade tumors and relatively low in low-grade tumors. Supraclavicular lymph nodes are lymph nodes found above the clavicle, which is where I had the first two small masses in my neck in February 2022. My understanding was that after my first month on iBrance, both tumors were dead and gone leaving a little bit of scar tissue behind, which I can’t even feel anymore. So this is another area that will be watched closely in the coming months.

I know that this was a lot of information and it certainly was not what I expected to see when my oncologist handed the report to me. We talked about possible changes in my treatment and that there are other drugs that he could put me on should my next PET scan show any increase in activity in the areas that we are watching. He would change my medication because an increase would indicate that iBrance and Faslodex are no longer working. He reminded me that eventually my body will adjust to the current medications and that we will have to make changes. For now I am continuing forward with iBrance and Faslodex until my next PET scan which will be in November.

I wish I had more positive news from this last scan but as I have said many times in the last 4 years, cancer is tricky and in my case it is aggressive, so my doctors and I have to be just as aggressive with my treatment. My oncologist says that cancer is very humbling, and that is so true. Cancer doesn’t care if you are rich or poor, the picture of health or sickly, young or old. If you ever feel a bump that wasn’t there before, you have pain that will not go away, you are constantly tired even with a lot of rest and good sleep or you just don’t feel right; please go see your doctor and find out what is going on. Your body talks to you, you just have to learn to listen.

Recent Appointments

Soon after my last blog post, I went on vacation with my husband to celebrate our 19th anniversary, relax, and try to make more progress in my recovery from radiation. We had a wonderful trip, but it was unseasonably hot, so the heat affected me much more than usual because I was nowhere near 100% during our trip. So, when we arrived home, I wasn’t any further along in my recovery than before we left.

Martha Brae River in Jamaica

Two days after we returned from our trip, I had an appointment with my medical oncologist for my regular 30-day blood panels and injections. I was happy that my blood panels showed that my white and red blood cell counts had improved slightly and that my ANC was in the normal range for the first time in a while, recording at 1.7. My numbers did not match how I was feeling, but it showed me that I was making progress.

We discussed my next PET scan and when I should have it. Because I could have extra tissue where the tumor was located on my back, the tissue could look like the tumor is still there if we scan too early. I also had very intense radiation, so he did not want to expose me to more radiation so soon. So, we are delaying my scan by one month, meaning I will have it in early August vs. early July. It’s hard enough to wait every four months for my regular scan, but adding in a month makes it even more difficult, so I do my best to stay busy and not think about it.

Because of the timing of my trip, I went to my appointment a week late, so we discussed where I was in the month with my meds and what made sense as far as getting me back on track. Because my blood panels looked good, well, at least for me, they were good; my doctor decided I could wait and come in another six weeks. So my next appointment won’t be until July 10th. As usual, he reminded me that I could call at any time and come in to see him if I was having any issues.

My next appointment during the same week that we returned from our trip was a few days after seeing my medical oncologist when I saw my radiation oncologist. She looked at my back to see if I had any indications of skin irritation and at the location of my treatments for the same. My skin looked normal and clear, so that was good to hear. She couldn’t help but joke about the tan line on my back, saying everything looked great, especially my tan line.

I told her I still had some irritation in my esophagus when I drank liquids but that the pain from eating solid food was gone. She explained that my esophagus would take a while longer to heal and to take pain meds if needed, but I was definitely toward the end of feeling the discomfort. She asked when my next PET scan would be so we could see the results from the radiation treatments, and I let her know that it would not be until early August. I told her I would call her office once my PET scan is scheduled, which should be when I see my medical oncologist on July 10th. And with that, my appointment was over, and the only reason I would go back to see her would be if I needed radiation treatments again.

I am expecting things to be pretty quiet while I continue to recover and wait for my next appointment in July. I am feeling better as the weeks go by, and time has been flying by, which also helps quite a bit. I can’t believe it has already been seven weeks since I finished radiation. I was told that it could take up to six to eight weeks to recover, so I am near the end of that time frame now and feeling better with each passing day.

Once I am through my recovery, I hope to post more often and go back to not only updating about how I am doing but also passing on valuable information to everyone interested and especially to both cancer patients and their caregivers. I have found many articles that have helped me get through my challenges with stage 3c breast cancer in 2019 and, more recently, in 2022, stage 4 metastatic breast cancer. As always, thank you for being here, and take care!

What to Ask Your Doctor About Breast Cancer

Written by Dee Holli — Updated on September 24, 2018

This is an excellent article with great questions to ask your oncologist after being diagnosed with breast cancer. Hearing “This is most likely breast cancer” were some of the worst words a doctor has ever said to me. My surgeon took one look at the ultrasound machine screen and uttered those words to my husband and me. I was numb and barely heard anything he said after that. I had questions, but my mind was reeling from what I was sure was true but had just had confirmed by a specialist. When I saw my surgeon a few days later for my first biopsy, I did ask him a few of these questions, and he answered what applied to his part of my treatment, and then the oncologist he referred me to answered the rest. Talk to your doctor; if you don’t like how they treat you, find another doctor, this is a long journey, and you must trust and respect the doctors working with you to save your life.

Not sure where to begin when it comes to asking your doctor about your breast cancer diagnosis? These 20 questions are a good place to start:

Now that I’ve been diagnosed with breast cancer, are there other imaging tests I will need?

Ask your oncologist whether you will need other imaging tests to determine whether or not the tumor has spread to lymph nodes or other parts of your body.

What type of breast cancer do I have, where is it located, and what does this mean for my outlook?

Ask your oncologist, based on your biopsy, what subtype of breast cancer you have, where it is located in the breast, and what that means for your treatment plan and your outlook after treatment.

How far has my tumor spread?

Understanding what stage of breast cancer you have is important. Ask your doctor to explain the stage to you and find out where else besides the breast any tumors are located.

According to the National Cancer InstituteTrusted Source, the stage of your breast cancer is based on the size of the tumor, whether the cancer has spread to any lymph nodes, and whether the cancer has spread to other areas in the body.

What is the tumor grade?

Particular characteristics of breast cancer cells affect how aggressive your tumor is. These include the amount of tumor cells that are reproducing, and how abnormal the tumor cells appear when examined under a microscope.

The higher the grade, the less the cancer cells resemble normal breast cells. The grade of your tumor can influence your outlook and treatment plan.

Is my cancer hormone receptor-positive or hormone receptor-negative?

Ask your doctor whether your cancer has receptors. These are molecules on the cell surface that bind to hormones in the body that can stimulate the tumor to grow.

Specifically ask whether your cancer is estrogen receptor-positive or receptor-negative, or progesterone receptor-positive or receptor-negative. The answer will determine whether or not you can use medicines that block the effect of hormones to treat your breast cancer.

If your biopsy didn’t include testing for hormone receptors, ask your doctor to have these tests performed on the biopsy specimen.

Do my cancer cells have other receptors on the surface that can affect my treatment?

Some breast cancer cells have receptors or molecules on the surface that can bind to other proteins in the body. These can stimulate the tumor to grow.

For example, the American Cancer Society (ACS) recommends that all patients with invasive breast cancer be tested to see if their tumor cells contain high levels of the HER2 protein receptor. This is important because there are additional treatment options for HER2-positive breast cancers.

Ask your oncologist if your cancer is HER2-positive. And if you haven’t been tested for HER2 protein receptors, ask your oncologist to order the test.

What symptoms of breast cancer might I experience?

Find out what symptoms of breast cancer you are likely to experience in the future, and what symptoms you should contact your doctor about.null

What are my treatment options for breast cancer?

Your treatment will depend on the following:

  • type of cancer
  • grade of cancer
  • hormone and HER2 receptor status
  • stage of cancer
  • your medical history and age

What types of surgical options are available for me?

You may be a candidate for surgical removal of the tumor (lumpectomy), surgical removal of the breast (mastectomy), and surgical removal of affected lymph nodes. Have your doctors explain the risks and benefits of each option.

If your doctors recommend a mastectomy, ask them whether surgical reconstruction of the breast is an option for you.

What types of medical therapy are available for me?

Ask your oncologist if any of the following therapies are available to you:

  • chemotherapy
  • radiation
  • hormone therapy
  • monoclonal antibody therapy

What types of chemotherapy are options for me?

If your doctor recommends chemotherapy, ask them which combination chemo regimens are being considered. Find out what the risks and benefits of chemotherapy are.

It’s also important to ask what the possible side effects of the combination chemo regimens are. For example, if losing your hair temporarily is a concern for you, ask your oncologist whether the medications recommended would cause hair loss or alopecia.

What types of hormone therapy are options for me?

If your oncologist recommends hormone therapy, ask which of these therapies is being considered. Find out what the risks and benefits of hormone therapy are and the possible side effects.

What types of monoclonal antibody therapy are options for me?

Monoclonal antibodies block binding of substances to receptors on the surface of the tumors. If your oncologist recommends therapy with monoclonal antibodies, ask your doctor what therapies are being considered.

Find out what the risks and benefits are and what the possible side effects of the monoclonal antibodies are.

What types of radiation therapy are options for me?

Find out what the risks and benefits of radiation are for your cancer, and what the possible side effects are.

Will I need to take off time from work for any of the therapies. And when would I be able to go back to work?

Ask your oncologist if the side effects of your treatment will require you to take time off from work during or after treatment. And let your employer know in advance what your healthcare team recommends.

What is my outlook after treatment?

Your outlook after treatment depends on the following:

  • your medical history
  • your age
  • type of tumor
  • grade of tumor
  • location of tumor
  • stage of the cancer

The earlier your stage of breast cancer is at the time of diagnosis and treatment, the greater the likelihood that the therapy will be successful.

Are there any clinical trials for treatments that I can participate in?

If you have an advanced stage of breast cancer, you may want to think about clinical trials. Your oncologists may be able to point you in the right direction, or you can take a look at http://www.clinicaltrials.gov/ for more information.

Why did I get breast cancer?

This question may be impossible to answer, but it never hurts to ask. There may be risk factors like family history or lifestyle practices such as smoking cigarettes. Obesity can also increase the risk of getting breast cancer.

What things can I do at home to improve my outlook after treatment and improve my quality of life?

Ask your oncologist if there are lifestyle changes you can make. Recommended changes may include:

  • making changes to your diet
  • lowering stress
  • exercising
  • stopping smoking
  • reducing alcohol intake

These things will help speed your recovery from treatment and increase your chances of a better outcome.

What resources for support are available to me?

Getting help and support is important during this time. Think about attending local support groups for things like financial issues and getting practical support like finding transportation if needed. You’ll also be able to get emotional support from advocacy groups like the American Cancer Society.

If you have any questions for me, please do not hesitate to reach out to me. I will answer as honestly as I can regarding what I have experienced, and if I can’t answer, I will try to point you in the right direction.

Radiation Oncologist Appointments

Last Wednesday, April 5th, I had an appointment with my Radiation Oncologist. The office I go to had just been purchased by the hospital where my Medical Oncologist and Surgeon have their offices. Because of the purchase, I had to wait a bit and fill out all new paperwork, eight pages, before I could see my doctor. My husband could not go with me because his office forgot that someone was going on vacation, and they needed him to train a new employee and cover for the person who was out. I was OK with this only because I was meeting with the same doctor I had in 2019 for radiation, so I was comfortable going alone.

Once my paperwork was done, I had a relatively long wait until the PA came to get me to weigh me and take me to an exam room. She then took my blood pressure, temperature, and heart rate. She reviewed a few details from my paperwork, chatted with me briefly, and then the nurse came in to see me. The nurse took a look at my paperwork and then asked me about my surgeries and previous treatments of both chemo and radiation and let me know that my doctor would be in soon.

My doctor knocked on the door and then opened it a little and looked at me with a sad face, and I responded with my sad face and told her that I was happy to see her but not for the reason why. She came into the exam room and hugged me. We sat down, and she asked me what had been going on since the last time I saw her, which was after I had the biopsy of the tumors in my neck done by my surgeon, and the results came back positive for caner. I explained that when I had my PET Scan in March 2022, they found a tumor on my 8th rib on the left side of my back. We talked about the PET Scans I had in July and November 2022 and the most recent one two weeks before my appointment with her.

I asked her how many treatments I would have, and she said 10 to 14. I wondered if I would need to use the medicated lotion I had the last time I had radiation, and she said no. I was relieved because I couldn’t reach where the tumor was located to apply cream due to the limited mobility in my left arm. She said that I would not have any burns this time and I should not have any pain at the treatment site. She told me that she recently had a patient with a tumor very close to the exact location as mine, and the only issue she had was in the last two days of treatment when she was eating, she could feel her food moving through her esophagus. The location of my tumor and the esophagus are very close together, which I wasn’t aware of. I asked her what I could expect my results once my treatment was over. She said that the radiation would kill all cancer cells and that there should be no trace of my tumor left.

I will most likely not know my results from the radiation treatment until my next PET scan, which is in July. Due to having had a PET scan a few weeks ago and then have 10 to 14 treatments by the end of April, it would be too much radiation exposure to have a PET scan any sooner than my regular 4-month scan.

At the end of my appointment, she said that I would have to come back on another day for my SIMs appointment. The soonest appointment she had was the next day at 8:00 am, so I told her I would come back then. I chose that appointment because the next one available would have been yesterday, April 10th, which would have delayed my starting treatment by another week. So, if all goes well, I should start treatment this Thursday, April 13th. I do not have my start date confirmed yet as I am waiting on the office to call me and schedule my first treatment appointment. Once I go in for the first treatment, I will have my other appointments scheduled, and they will all be at the same time every day, Monday through Friday.

The reason why it takes so long to schedule my first treatment is that my doctor needs time to look at the CT that was done at her office, the PET scan images, and the report from a few weeks ago, as well as any notes from my medical oncologist. Once she has reviewed everything, she will determine the exact amount of treatments I will need and what my doses of radiation will be. If I remember correctly, the treatments start at a specific dosage at the beginning and increase as I go through each treatment.

So the following day, I had my SIMs appointment, and that is where they did a CT and marked the exact location for the radiation treatments. After the CT, they placed me in the same position I needed to be on the table so they would know where to line up the radiation machine to my body. Due to mobility issues with my left arm, they had to inflate a pillow made from thick paper to put behind it so I had the support I needed to put my arm back to the handles at the top of the table. For comparison, in 2019, when I had radiation, I had to have support then as well, but substantially more because my mobility was much worse than it is now. Once I was positioned correctly, they marked three locations on my body with clear stickers with x’s. I specifically asked that they not tattoo me as they did last time because that was a nightmare for me, and I had to have laser treatments to get rid of the tattoos after my treatment was over.

Sorry this post was so long, but I wanted to combine both appointments in one post vs. doing two. I will update you when I know when my appointments will be, how many treatments I will have, and when my last treatment will be when I once again get to ring the bell!

It’s Been A While

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.

Oncologist Appointment on December 5th

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.

Thank you again for your continued support! 💕

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