My Radiation Experience

I have been quiet recently, but I have been that way with everyone, not just the wonderful people who follow my blog. I emailed my family updating them on how I was doing, and my cousin said he was just about to ask me. I wrote back, and I told both he and my other family members the following, and I think this explains it as best as I can.

“It is hard to explain, but when I am having the difficulties I was having, and still am, with trying to recover from the treatments, it is hard to write about it. Everything with cancer is physical and mental, and at times, the mental is the most challenging part to deal with. When I got to my last three radiation treatments, I was in tears and telling my husband that “I didn’t want to do this anymore.” I went through the same thing when I got to number 12 of 16 chemotherapy infusions. It is so hard to see what the meds, treatments, infusions, etc…are doing to your body, yet you have little to no way of controlling anything. Sure, you can fight the side effects, but that is generally done with more medication, and sometimes, that’s the last thing I want.”

So, I have been working on recovering from 10 potent radiation treatments, and it has not been easy. This coming Wednesday will be three weeks since I had my last treatment. My radiation oncologist said that the radiation would continue to work for three weeks after treatment ends, so I hope to start feeling better later this week.

About halfway through my treatments, I started dealing with very severe fatigue. Even the simplest tasks would tire me, so I had to rest as much as possible. I asked one of the techs one day if my radiation dose was more potent than what I had in 2019, and she confirmed that it was. Generally, when you have 10 treatments vs. 25, the amount is more concentrated so that there are fewer treatments, two weeks vs. five weeks.

Along with the fatigue, I had some painful side effects. My whole body started hurting all of the time, and sometimes Extra Strength Tylenol was strong enough to ease the pain, and sometimes it was not. When it wasn’t strong enough, I had to break into my hoard of oxycodone I had left over from my surgeries, which seemed to help. I was also getting headaches, I was dizzy at times, and worst of all, I had pain when I ate.

My treatment was done from the front to the back, meaning that even though my tumor is on the 8th rib in my back, I was lying on my back for treatment. My tumor is also about one inch from my spine, so that is a big reason why I didn’t have surgery. I didn’t think about the tumor’s location with other body parts because I just wanted the tumor to die. 

My radiation oncologist told me that I might have pain when eating but that it would start towards the end of treatment and should stop pretty quickly once treatment was over. I asked her why, and she said my esophagus was close to the treatment area. I hadn’t thought about anything like that, so I was shocked. Sure enough, on the weekend before my last three treatments, I started having pain when eating. At first, it wasn’t too bad, but by the time I reached my last day of treatment, it was excruciating.

On the last Monday of my treatment, I had an appointment with my medical oncologist before my radiation treatment. He asked me many questions about how I was doing with the treatment and my side effects. He is an entirely different type of oncologist, so he is always curious to know how patients tolerate other types of treatment. When I explained my pain when I ate, he immediately asked me if I wanted to have him prescribe oxycodone. I have often read about patients needing pain medication and being denied because there is such a massive issue with addiction. I didn’t think for a second that my oncologist would tell me no because he knew that oxycodone scared me. So I now have more of that medication than I need because he always prescribes 90 pills, but it is helping me with the pain I have when I eat, and so far, just one a day has been enough.

On June 1st, I have a follow-up appointment with my radiation oncologist. She will chat with me to ensure I have no issues with my recovery. When I was discharged from my treatment, she told me it would take 3 to 6 weeks to recover from the radiation treatments. When I see her for my appointment, I will be at five weeks since my last treatment and hopefully feeling much better.

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.

Difficult News

I was going to write this blog post earlier in the week, but I have been overwhelmed with so many thoughts and emotions since I met with my oncologist on Monday, March 27th.

On March 21st, I had my most recent PET Scan. Everything went fine with the scan, as usual. I sat next to a sweet 80-year-old lady in the waiting room. She started to chat with me because she was complaining about the wait, and I told her that the wait could be long sometimes; it depends on what type of imaging you are there for and how many appointments there are. She asked me why I knew that, and I explained that I come in every four months for a PET scan since I am a stage 4 cancer patient. She asked me a few more questions and then handed me the book she was reading and told me to keep it. The book is by Zig Ziglar, Embrace the Struggle, Living Life on Life’s Terms. I haven’t started reading it yet, but I will soon.

This past Monday, I went to see my oncologist for my regular 30-day appointment and to get my PET scan results. My blood looks pretty good for me anyway, and I was happy to see that my ANC was 1.4, which is excellent considering that the low number in the acceptable range is 1.5, so that is the highest my ANC has been in months! So we were very happy with my blood panels.

Then we moved on to my PET Scan results. Unfortunately, my tumor has grown. It is roughly 1/3 of an inch larger, which is a slight increase but nonetheless an increase. My oncologist immediately said that I would need radiation treatments to stop the growth of my tumor and hopefully kill it. Luckily I will be going back to see the same radiation oncologist I saw in 2019 for my treatments which is great because I trust her and adore her. I will likely have three weeks’ worth of treatments or 15 sessions. I don’t know all of the details yet, but I will find out when I have my consultation and plotting appointments next Wednesday, April 5th. Matt will be going with me to my appointments next Wednesday, so it will be nice to have him with me because I will be there for half the day.

Understandably, I am overwhelmed with my thoughts and emotions. I am wondering what is next after radiation. My oncologist made it sound like I may not be taking iBrance while I am going through radiation, so that I will ask about that on Wednesday. He also said that he wants to keep me on iBrance for years, but if it proves ineffective, I may have to go through chemo infusions again, and he has told me it will be much tougher this time vs. 2019. So I plan on getting some of my questions answered because, by the time I go in for my appointment next Wednesday, my oncologists will have discussed what is going on with me and the next steps.

I wish I had better news to share but cancer is tricky and you never know what it will do, especially when it is as aggressive as mine has been.

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.

2nd PET Scan and Information About PET Scans

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! 💕

What is Metastatic Breast Cancer?

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.

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