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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.

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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

PET scan combined with CT scan

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 scan image of the heart

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 of the brain for Alzheimer's disease

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! 💕

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Oncologist Appointment on Monday June 20th

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.

Take care, everyone!

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I Found A Lump

A few days ago, on Tuesday, I found a lump on the left side of my neck at the base right where my neck curves into my shoulder; the same side of my body where my breast cancer was, and the same side where I had all of the terrible pain in my head. I was reading through my emails, playing with my necklace as I often do, and my fingers felt something odd. I took off my necklace to investigate further, and it felt exactly like the tumor I found in my breast a little over three years ago, as this one is a small round bump with a lump next to it.

It should be no surprise that I went into full panic mode. I thought about what to do next and called my husband. I told him about what I found and that I thought about calling my oncologist, but I knew he would want imaging done. I then remembered that my surgeon has a mobile ultrasound machine at his office, so it made sense to see him first and have him do an ultrasound. My husband agreed with my decision, so I called my surgeon’s office to see if I could get an appointment the following day, yesterday, which is an office day for him to see patients. Luckily, I was able to get an afternoon appointment to see him and have the ultrasound done.

During my appointment, he first took a look with the ultrasound at the lump I described to him, then he looked at the lymph nodes under my left arm. He couldn’t find anything unusual under my arm, and he said that he was not sure what the lump was on my neck, other than a mass. He asked me if I had contacted my oncologist yet, and I explained that I hadn’t called him because I knew he would want imaging, so I wanted to see him, my surgeon, first for the ultrasound. Then he asked if I wanted to do a PET scan or a biopsy first as we need to find out what we are dealing with this time. I asked his opinion and told him that I trust his judgment, which I do without question, and we agreed that a biopsy should be done first, and then if it comes back positive, we will do a PET scan to see if I have any other tumors in my body. So early in the morning on Friday, I will go back to his office, and he will do a needle biopsy. He gave me the option of being asleep during the biopsy or using the needle with a local, and I chose the needle because I didn’t see the need to be put to sleep for a biopsy after having five surgeries in twenty-two months.

Quite honestly, I am scared. I would go into more about my fear, but it touches on what I am not ready to share yet. The only comfort I have right now is that I already know the possible next steps, no surprises this time, which of course is both good and bad.

I will update as soon as I have my biopsy results which should be some time between late Friday and Monday.

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Appointment With My Oncologist

When I had my appointment with my oncologist on August 5th, I was hoping that my red blood cell count would finally be in the normal range, but it isn’t quite there yet. I wasn’t too surprised as I have been tired lately and not feeling the greatest. At this point, nothing but time will help, so I am trying to be patient.

I am still having a lot of issues with my memory. It seems like only my short-term memory is being affected, but it is starting to drive me crazy. My oncologist asked me if I am still “fuzzy,” and I said that yes, I am still having issues. So, I am taking a week off Anastrozole to see if it helps clear my head or not.

Once I have my next appointment in December, I will finally be on a different schedule with my oncologist. I will switch from seeing him every three or four months to every six months. I am making progress, and it feels good!

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Long Break

Hi, I can’t believe that we are already in July and that it has been over three months since I published a post here! In my defense, I can tell you that I have had a lot going on since the middle of April.

In early May, I started looking for a house to move to because with the housing market going crazy, I was sure that the owner of the house we had been renting for the last six years would want to sell. About a week later, my suspicions were confirmed by a phone call from the owner. Finding a house was challenging because the home would be listed online, and not even 24 hours later, there were multiple applications on it. Right before we were due to leave on vacation, we went to see a house, and it was perfect! At first, we didn’t know if we had gotten it, but right before we flew out of town, we received the news that we had been approved and would get the keys on June 1st after we returned from vacation. So, my time was filled with stress from looking for a house and then getting ready to go on vacation, but it was worth it because we have moved into a house that is perfect for us and our vacation was wonderful!

While on vacation, we renewed our wedding vows on our 17th anniversary, and everything was perfect on our special day! Ocho Rios, Jamaica, is one of our favorite places to relax and reconnect with each other, so why not renew our vows while there. We were supposed to renew our vows two years ago, but between my breast cancer diagnosis and treatment in 2019 and Covid causing the world to stop in 2020, we had to post phone our trip and ceremony until this year.

I will update you with everything that has been going on over a few different posts in the coming days, which will include a huge milestone, a follow-up appointment with my surgeon, and how I am doing these days.

I will be back soon! 🙂

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