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 Treatments 1 & 2

First, I want to let you know that I do not have any pain in the area where I have my radiation treatments. A lot of people assume that I have pain during and or after treatment and I do not. I do not have any burns or irritated skin either. According to my radiation oncologist I should not experience any of the above.

I received my schedule on Thursday when I went in for my first treatment and the final part of the SIMs appointment. My doctor had told me 10 to 14 treatments, so I was happy that she decided on 10. So my first treatment was a few days ago on Thursday, and my last treatment will be on April 26th. I go in every weekday, Monday through Friday, with weekends off.

Thursday was rough. It was a longer appointment because they had to x-ray me and finish plotting for the coordinates to set the machine for my treatments. I had to have both arms up over my head for that whole process which was almost an hour. By the time they were done, I was crying because the pain was so bad in my left arm. It felt like my arm was being ripped out of the socket. I tried so hard not to cry, but the pain was unbearable. I was so embarrassed, and I apologized to the techs; they were very kind and stayed with me and rubbed my back to try to get me to calm down. I don’t remember it hurting that much when I went through the same process in 2019, so I was shocked that the pain was that bad. Luckily the pain didn’t last long and went away about an hour after I got home.

On Friday, my arm hurt again because it went through so much on Thursday. It seems like they are taking longer to get everything set up once I am on the table. They are not only setting the machine for my coordinates, but they are also moving me around so the markers on my body line up as well. Luckily with all of the plotting out of the way, I only have my treatment when I go in now, nothing extra from here on out except a visit with my doctor each Monday.

I’m sure when I return on Monday for treatment #3, I won’t have any more issues with pain. I will try to keep my movement as limited as I can in my left arm over the weekend. The excessive pain I am experiencing is only in my left arm and that is because I had 18 lymph nodes removed from under my left arm during my cancer removal surgery in April 2019. I realize that it has been four years since that surgery but when there are that many lymph nodes removed there are multiple nerves that are cut and disconnected, so at least in my case, I have never regained full mobility and I am still numb in the upper part of my arm over to half of my breast. I have learned to live with the numbness over the years. I can feel pressure but that is all, so it took awhile for me to be able to find the right pressure to shave under my arm and not cut myself. In my opinion it is a small price to pay for my surgeon saving my life and me being alive today.

As always, thank you for being here and supporting me. 💕

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.

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! 💕

Oncologist Appointment & 2nd Biopsy Results

My husband and I went to see my oncologist on Tuesday to get the biopsy results on my rib. He told us that the results were positive, that there are several cells of cancer located on my rib, and that the mass as a whole is 2.9cm and is located about 1 inch from my spine. I do not have bone cancer; the cancer is not inside my rib. I had absolutely no idea that it was there until a “spot” showed up both on the nuclear bone scan and the PET scan, hence getting the biopsy last week. The cancer cells are similar to the cancer I had before, so it is the same type, breast cancer, so I am diagnosed with Stage 4 Metastatic Breast Cancer. It is metastatic breast cancer because my originating cancer was breast cancer, and it has now spread from the breast to another part of my body.

Once the biopsy results were in, my oncologist and my radiation oncologist spoke and determined that putting me through radiation would not only be challenging to treat but also a waste of time. It is difficult to treat me because I have cancer in two very different areas of my body, my neck, and back. They decided it would be a waste of time because they are convinced that I most likely have cancer elsewhere in my body that is too small to show up in scans. So they decided that we should treat my entire body instead of just the areas where we know I have cancer. Surgery is not an option because there is no point in opening me up when I most likely have cancer elsewhere. Plus, surgery in both areas is quite risky due to major blood vessels, arteries, and the spot on my rib being so close to my spine. So with all of those facts in place, I will be starting medication on Monday.

Stage 4 cancer has no cure. As odd as it sounds, I am lucky that we are dealing with breast cancer because there are many drug choices for treatment, and the medical world is always coming out with new and improved drugs. Why is that? Because breast cancer is the leading cancer in the US, with over 2.26 million cases per year, followed very closely by lung cancer at 2.21 million cases per year. Stage 4 breast cancer ads constantly barrage us on TV, and that is why. Not all stage 4 metastatic breast cancer meds are chemotherapy drugs, but I will be on a chemotherapy drug called iBrance. No, I will not lose my hair while on iBrance, even though it is chemotherapy which I am very thankful for. What is sad about iBrance is that it is $18,000 a month; no one can afford that, so thankfully, there is an aid to apply for to get it free for a year. I will also have a new inhibitor in an injection called Faslodex. These two medications are often paired together with favorable results in killing cancer, keeping it from coming back, and extending life.

It is hoped that iBrance being chemotherapy will kill the cancer in my body, and Faslodex with replace the current inhibitor that I am taking, which is Anastrozole because it didn’t work. The Anastrozole might have kept my cancer from spreading and growing more, but it did not keep cancer from coming back by lowering the estrogen in my system, which is its primary job. I have estrogen-driven breast cancer, so I have to take an inhibitor. I took Anastrozole for two years out of 10 before my cancer returned. My treatment plan is as follows…I will be taking iBrance for 21 days, and then I will stop taking it for seven days, then that cycle will repeat. On Monday, I will start my Faslodex injections, with the first three injections being one injection every two weeks and then once a month after that. In about three months, I will have a PET scan to see if there is any change in the size of my tumors. If the medications are working, my tumors should be smaller; if there is no change, my medication will most likely be changed. If my tumors are persistent, I may have to undergo infusion chemotherapy again, but we will try to avoid that. I don’t have any details about how long I will be on the medications, but I suspect it will be at the very least until having a clear PET scan; but I will find out for sure when I see my oncologist on Monday.

I will post again when I have more information about the length of my treatment and how my first injection appointment went. Take care, everyone!

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