Welcome to my personal breast cancer guide on what to expect from breast cancer diagnosis to surgery and treatment.
What to do if you think you have breast cancer
This guide is based on my personal experience and opinions. I am not a medical doctor or expert. Anything written in this guide should not be substituted for medical advice. Please consult your doctor for information related to your health.
What do I do if I feel a lump in my breast?
- If you feel a lump or anything suspicious, you should contact your primary care doctor for a breast exam. If your doctor has concerns he will provide you with a referral for mammogram testing. If you feel that your doctor is not listening to your concerns, schedule an appointment with another doctor.
- Some insurances require you to call and change your primary care doctor before you can make an appointment. If you are unsure, call your insurance company to find out (the customer service number is on the back of your insurance card).
- Your primary care doctor may refer you to a specific location or give you options for where to go to get your mammogram. If not, contact your insurance company and they can help you find a center close to you that is in your insurance company network. In-network doctors, clinics, hospitals, and medical facilities will cost you the least out of pocket costs. You can also contact a local radiology center to schedule your mammogram. Make sure to keep your referral because you’ll need to take it worth you when you go to your mammogram appointment. Note: There may be a copay (short for ‘copayment) for the mammogram procedure. If your insurance doesn’t cover mammograms 100%, you may owe more than your copay.
My Real Life Example – Cost for Mammogram
In 2016, the radiology center charged me $962 for my mammogram. Insurance paid the radiology center $520 (because I went to an in-network facility, insurance company received a $442 discount!). I paid a $40 copay. Because my insurance covered my mammogram 100%, I did not have any more to pay besides the $40 copay. If you are uninsured, you will be responsible for the entire cost, $962. Unfortunately, you do not get the same discount that health insurance companies get.
My Advice – Call Your Insurance Before Scheduling a Mammogram
- Do I have a copay for mammogram testing? If yes how much? Note that you will have to pay the copay the day of your appointment. Some medical facilities may ask for the copay before your appointment date.
- How much does insurance cover? (If insurance covers the procedure 100% you will have no other costs besides the copay. If insurance covers less, you will pay the difference).
When you call to schedule your mammogram, ask radiology center if a copay is required at the time of your appointment.
Things to know before your mammogram appointment:
- Don’t use lotion or deodorant before your appointment (the appointment scheduler should tell you this before your appointment or send you information in the mail).
- You can eat, drink and take your usual medications in the morning.
- There may or may not be pain.
- The actual mammogram testing should last between 10-15 minutes.
Mammogram appointments are pretty straight forward. You will sign in and then be taken to the back to strip down above your waist. You will receive a open-front gown to wear during the procedure.
Next, you will be directed to place your breasts (one at a time) into a machine for imaging. The machines do press down hard but this is necessary to get the appropriate imaging. The level of pain, in my opinion, depends on the type of machine used and your technician.
My first mammogram was great! I was terrified about the pain but I felt absolutely nothing. And my technician was great and told me that she loved her job. My second mammogram was at a different facility and was quite painful! So I guess it’s the luck of the draw. I will say that the pain is unpleasant but not unbearable. And as soon as you are released from the breast pancake makers, the pain goes away.
So, now that your mammogram is complete you will have to wait for the results. The radiology center may call you directly or send the results to your primary care doctor to discuss with you.
If you are fortunate, the mammogram did not show any tumors that needed further investigation. However, if you’re like me and they did see tumors or anything suspicious, the next procedure to verify that the tumors are actually cancerous is called a biopsy.
The Ultrasound Guided Breast Needle Biopsy
I’m not going to lie…the needle biopsy was PAINFUL. The biopsy needle is used to retrieve a sample from your tumor(s). The ultrasound machine is the same ultrasound used when women are pregnant. Just like you can see your baby inside of you, you can see the needle being guided toward the tumor. I am thankful that I had a nurse there to hold my hand. Honestly, the whole ordeal was something that I tried to forget so forgive me for my fuzzy memory.
For example, I know that I was numb and while I don’t remember being numbed with a needle, I’m sure that’s how things went down. The doctor then proceeded to stick a very long needle into my breast. OMG! I was able to watch the needle being guided through my breast toward the tumor. It was fascinating yet sickening and I turned my head away because I was still partially in denial that two tumors were in my breast.
Then I heard some clicking sounds, which was the needle chipping off a piece of each tumor. There was quite a bit of blood and for some reason it took a while for the blood to stop. I would think that the procedure lasted for about 30-40 minutes but it could have easily been 15 minutes. When you’re in pain, time seems to go by very slow!
After you are patched up and a marker is placed on the areas where the needle was inserted, you can get dressed and leave (the markers are placed to show doctors exactly where the needle was inserted). I went back to work afterwards but it was very painful the next day as I sat in a job interview for a new step in my career. Your biopsy results will be sent to your primary care doctor, who will contact you to discuss results.
|My Real Life Example – Cost for Biopsy
As you have seen so far, there are a lot of costs associated with testing for breast cancer. I am fortunate to have a great insurance plan that covered a lot of the costs and I did not have a copay for every procedure.
Breast Biopsy Results
Your primary care doctor should receive your results within a week or two. They will either call to discuss your results over the phone (if they’re negative, meaning the tumor is benign/noncancerous) or have you come into their office as soon as possible.
If your biopsy results show that your tumors are malignant (meaning cancerous), your doctor will review the report with you and discuss next steps, such as where to go for treatment.
|My Real Life Example – “You Have Cancer”
At the time I was diagnosed, I was on my way up in my career. I had just been offered (and accepted) a wonderful position that I interviewed for the day after the painful breast biopsy. The day before, I had given my current boss (who was great!) a notice that I was moving on. The following week I was telling him that I now had breast cancer.
On a Spring Friday morning I received the call from my doctor’s office asking if I could come in right away. Immediately, my stomach dropped but I remained optimistic-I couldn’t have breast cancer, right?? Well, the doctor’s office was literally a two-minute walk from my office so I headed over to get the new before my next meeting.
Well, I knew something was up when my doctor (who I love) came into the room with a somber look on her face and put her arm around me to read the results together. As her arm pulled me closer to her, I just knew that I had breast cancer. As she began reading, I zoned out when I skimmed ahead and saw the dreaded word Carcinoma (add hovering definition from glossary). After I saw carcinoma my doctor’s voice turned into Charlie Brown’s teacher’s voice. My brain kept repeating to me “I have cancer, I have cancer, OMG I have cancer!”.
My doctor must have seen me spiraling down a mental rabbit’s hole because she pulled me back to reality. She told me that it was early stage breast cancer and that I could beat it. She recommended two cancer facilities in my area and after researching them both, I decided to go to the one that was a pioneer in breast cancer treatment and advancing research.
I called my husband with the bad news, told the boss that I had to leave and I went home. I received my diagnosis three days before my oldest son’s 18th birthday. When is the best time to share your cancer diagnosis? Never. We decided to tell our sons after we got my treatment plan put in place.
How to Choose Where to Get Surgery and Treatment
Women deal with a breast cancer diagnosis in different ways. Some remain in denial and refuse treatment others wait a while before diving in head first. And then there are women like me who dive in immediately without a life jacket.
Like a fish out of water, you will probably feel like you can’t catch your breath once you are diagnosed. You have to make a lot of decisions fast. The first step, and in my opinion the most important, is to determine where you will receive your treatment. But how do you go about doing this when you have no experience with cancer?
- Talk with your primary care doctor. He/she should be familiar with local cancer medical facilities or provide you with a list of recommended breast cancer surgeons. If you have a family member, friend or coworker who has dealt with breast cancer, you can ask them for their referral.
- Factor in travel costs (time, gas, car maintenance) when choosing your location. You will be travelling back and forth to appointments before and after surgery. If your treatment plan includes radiation or chemotherapy, you want to select a place that isn’t too far to travel, especially if you will be going to your appointments alone.
- Do your research. Most medical facilities have websites that you can visit to see what they offer for treatment. You can look at the breast cancer team doctors which can help personalize the ordeal for you. You can also confirm that your surgeon of choice is Board Certified.
- Contact your insurance company to see if your doctor or medical facility is in-network so that your expenses will be less. Remember, if you choose a doctor/facility that is out of your insurance network, you will end up paying a high percentage (or all) of the costs for your surgery and treatment.
Based on my research, talking to people with breast cancer, and reading through numerous online forums, I highly recommend treatment at a facility that focuses on cancer, such as John Hopkins Sidney Kimmel Cancer Center (Baltimore, MD), Cancer Treatment Centers of America (national), Mayo Clinic, Memorial Sloan Kettering Cancer Center. Research centers usually have more advanced treatment options and have optional studies that you can choose to participate in. They are sticklers about follow up appointments as well (these are important even after surgery and treatment), which helps them in their research. However, I do understand that some women prefer a smaller, more intimate environment and a smaller facility may be best. To find a cancer treatment center in your area, check out this Best Hospitals for Cancer list.
After Selecting Your Treatment Location
- Once you decide on where you would like to be treated, call the main number to schedule an appointment. If you call a breast cancer center directly, explain that you were recently diagnosed with breast cancer and that you’d like to set up an appointment with a breast surgeon. They may ask if you have a specific doctor in mind. If you do not, they will recommend the next available surgeon.
- A copay will most likely be required for your breast surgeon appointment. For some medical facilities, you may have to pay two copays: one to the surgeon and the other to the medical facility.
- Most doctors will require your medical records in advance to review in order to determine treatment options (at least your diagnosis pathology report). Find out how they would like to receive your records (some require fax, mail, or email). For your radiology records (mammogram and biopsy) you may have to contact the radiology center directly to request a copy. Because these radiology records are images, a fee may be required when you pick them up (usually between $20-30). You can usually take these with you to your first meeting with the breast surgeon.
To be continued.
in support of Black women with breast cancer