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!

Myths and Misconceptions About Metastatic Breast Cancer

I have had quite a few people reach out to me and ask me questions about my diagnosis of Stage 4 Metastatic Breast Cancer and its meaning. I have also noticed that many people are keeping their distance from me, and just like the first time I had breast cancer, I am sure it is because most people do not know what to say to me, so I feel the need to explain things as best as I can. I do not want to sugar coat the reality of my diagnosis so this is why I chose this article to share with you. The article does an excellent job of explaining the myths and misconceptions….I hope it helps.

First and foremost, I do not have terminal cancer. But to be clear, there is no cure for Stage 4 Metastatic Breast Cancer; it is advanced and requires more aggressive treatment. Terminal or end-stage cancer refers to cancer that is no longer treatable and eventually results in death. I am currently in treatment with my oncologist taking state-of-the-art medications proven to prolong life and keep cancer from spreading more than it already has. Every three months, I will have a PET scan to check the size of my tumors, and once they have either shrunk or stabilized, I will be in remission. Being in remission does not mean I am cured because there is no cure; I will have Stage 4 Cancer for the rest of my life, so my treatments are indefinite. If my prognosis should change to terminal, I will let you know, but I am not expecting that to happen anytime soon.

Some people tend to think that breast cancer is breast cancer, regardless of stage at diagnosis. In the media, breast cancer is often portrayed as a relatively good type of cancer that can be overcome with the right combination of treatments. But as our Community at Breastcancer.org in our stage IV discussion forum tell us again and again, stage IV, or metastatic, breast cancer — cancer that has spread beyond the breast into other parts of the body, such as the bones, liver, or brain — is very different from early-stage breast cancer. They often need to educate family, friends, neighbors, and coworkers about this reality. What follows are nine of the most common myths and misconceptions about metastatic breast cancer.

Myth #1: Metastatic breast cancer is curable Whether metastatic breast cancer (MBC) is someone’s first diagnosis or a recurrence after treatment for earlier-stage breast cancer, it can’t be cured. However, treatments can keep it under control, often for months at a time. People with MBC report fielding questions from family and friends such as, “When will you finish your treatments?” or “Won’t you be glad when you’re done with all of this?” The reality is they will be in treatment for the rest of their lives. A typical pattern is to take a treatment regimen as long as it keeps the cancer under control and the side effects are tolerable. If it stops working, a patient can switch to another option. There may be periods of time when the cancer is well-controlled and a person can take a break. But people with MBC need to be in treatment for the rest of their lives.

Myth #2: People with metastatic breast cancer have a short amount of time left While some people mistakenly think MBC is curable, at the other extreme are those who assume it’s an immediate death sentence. But there is a big difference between stage IV incurable cancer, which MBC is, and terminal cancer, which can no longer be treated. A person isn’t automatically terminal when she or he gets a metastatic diagnosis. Although MBC almost certainly will shorten someone’s life, it often can be managed for years at a time.

Myth #3: People with metastatic breast cancer look sick and lose their hair “You don’t look sick.” “You look so well.” “Why do you still have your hair?” “Are you sure you have cancer?” These are comments that people with MBC report hearing. But there are many treatment options besides chemotherapy, and people often appear well while taking them. Some people with MBC report that they actually look better than they feel while in treatment. So they sometimes have to let family and friends know that even though they appear fine, they don’t feel well.

Myth #4: Metastatic breast cancer requires more aggressive treatment than earlier-stage breast cancer Related to myth #3 is the notion that because MBC is advanced cancer, doctors have to pull out all the stops to fight it. But that’s actually not the case, says Breastcancer.org professional advisory board member Sameer Gupta, MD, a medical oncologist at Bryn Mawr Hospital in Bryn Mawr, Pa., and a clinical assistant professor of medicine at Jefferson Medical College in Philadelphia. “The goal Is control rather than cure. Think of it as a marathon vs. a 50-yard dash.” Doctors treat earlier-stage breast cancer more aggressively because the goal is to cure it: destroy all of the cancer cells and leave none behind, reducing the risk of recurrence as much as possible. With MBC, the goal is control so that patients can live well for as long as possible. And chemotherapy isn’t necessarily the mainstay of treatment.

Myth #5: If you’re diagnosed with metastatic breast cancer, you did something wrong or didn’t get the right treatment the first time When some people hear stage IV breast cancer, they assume something must have been missed along the way to let the cancer get that far. There is a misconception that breast cancer always develops in orderly steps from stages I to II, III, and then IV — and that there’s plenty of time to catch it early. People with MBC can face misguided assumptions that they must have skipped mammograms or self-exams, or they didn’t control risk factors such as not exercising enough, watching their weight, or eating healthy. But a person can do everything right and still get MBC. Although regular screenings increase the odds of diagnosing breast cancer at an earlier stage, they can’t guarantee it. Another major misconception: If you’re diagnosed with metastatic cancer after being treated for an early-stage breast cancer, you must have chosen the wrong treatment regimen or it wasn’t aggressive enough. But between 20% and 30% of people with an earlier-stage breast cancer will eventually go on to develop MBC — and there’s often no good explanation as to why. And it can happen to anyone. Treatments can reduce the risk of recurrence, but they can’t eliminate it.

Myth #6: Metastatic breast cancer is a single type of cancer that will be treated the same way for every person The label metastatic contributes to the myth that it is one kind of breast cancer. But like earlier-stage breast cancers, stage IV cancers can have different characteristics that will guide treatment choices. They can test positive or negative for hormone receptors and/or an abnormal HER2 gene — the gene that causes the cells to make too many copies of HER2 proteins that can fuel cancer growth. These test results guide treatment choices. Furthermore, treatment choices can depend on a person’s age, overall health, and whether there are other medical conditions present.

Myth #7: When breast cancer travels to the bone, brain, or lungs, it then becomes bone cancer, brain cancer, or lung cancer Not true. Breast cancer is still breast cancer, wherever it travels in the body. However, the characteristics of the cells can change over time. For example, a breast cancer that tested negative for hormone receptors or an abnormal HER2 gene might test positive when it moves to another part of the body, or vice versa (positive can become negative). “Keep in mind that the cancer cells are trying to survive in the body, so they can change,” says Dr. Gupta. “We always emphasize rechecking the biology.”

Myth #8: If an earlier-stage breast cancer is going to recur as metastatic breast cancer, it will happen within five years of the original diagnosis Ninety percent of MBC diagnoses occur in people who have already been treated for an earlier-stage breast cancer. Many people are under the impression that remaining cancer-free for five years means that a metastatic recurrence can’t happen. However, distant recurrences can occur several years or even decades after initial diagnosis. Factors such as original tumor size and the number of lymph nodes involved can help predict the risk of recurrence. For example, a 2017 survey of 88 studies involving nearly 63,000 women diagnosed with early-stage, hormone-receptor-positive breast cancer found that the risk of distant recurrence within 20 years ranged from 13% to 41%, depending on tumor size and lymph node involvement.

Myth #9: The mental and emotional experience of people with MBC is the same as that of earlier-stage patients People with MBC report hearing comments such as, “At least you have a good type of cancer,” “Aren’t you glad so much research on breast cancer has been done?,” “Fortunately you have so many options.” These might comfort people with early-stage breast cancer, who can look forward to one day finishing treatment and moving on — but people with MBC don’t have that luxury. They know they will be in treatment for the rest of their lives. They also know that their life is likely to be shorter than they’d planned. Mentally and emotionally, people with MBC have a completely different experience. “For them, the whole ringing the bell idea [to celebrate the end of treatment] does not work,” says Dr. Gupta. “I have patients who are coming in once a week and have to plan their lives around their treatment. The whole pink brigade idea is very upsetting to them.” Fortunately, more and more people with MBC are speaking up and calling attention to how their experience differs from that of people with earlier-stage breast cancer. People with MBC live with cancer always in the background of their lives, but with new and emerging therapies, many are living longer and maintaining their quality of life.

Oncologist Appointment & Third Round of Faslodex Injections

I had an appointment with my oncologist on Monday to run my blood panels, talk about my side effects and get my third round of Faslodex injections. I spoke with the PA first about the medications I had picked up at the pharmacy over the last week for nausea and heartburn. I assured her that both were working great, so I was finally getting some relief.

My oncologist came into the exam room and handed me my blood panel results, and it was not what I expected. I knew that certain levels would be off but for them to be where they are after only three weeks on iBrance was a shock. My white and red blood cell counts are low, not dangerously low, but lower than we would like, and my ANC is low. ANC, Absolute Neutrophil Count, is the “infection-fighting” count. My count is .8, and the low end of normal is 1.25, so I am at high risk for infection. I need to stay away from crowds, busy restaurants, and people who have a cold or the flu because I could end up in the hospital with an infection and become severely ill.

After taking in the initial shock of this news, my doctor said he was very concerned, so he told me to stop taking iBrance for the next month. The break in taking the medication should give my system a chance to get back to normal levels. I had already received this next round of drugs from Pfizer because I was scheduled to start back on it after a week off a few days ago on Monday. We did discuss dropping my dose from 125mg to 100mg, but we will only do that if my bloodwork doesn’t improve. So, for now, he told me to hold on to the meds, so I will have them to take again starting on May 23rd.

Once I was done discussing everything with my doctor, I went back to the infusion room to get my Faslodex injections. Have I said how much I hate injections? I absolutely hate injections, but that is the only way this particular drug is administered, so I don’t have a choice. It seems that each time I have the injections, I have different side effects from them. Generally, I deal with headaches, bone pain in my hips, and, as with this last time, pain from the medicine itself. I have a small area on the left side near the injection site that is causing me some pain, but it has improved each day. Some good news is that I am done with the initial three doses, so now I will have the injections monthly instead of every two weeks.

During my next appointment on May 23rd, I will see my oncologist, have my blood panels run, and get my Faslodex injections. This will be my regular schedule moving forward every month for an indefinite period of time.

6 Overlooked Signs of Breast Cancer

Over the last few years, and again now that my cancer has returned, many people have asked me if I had any signs of breast cancer before I found the first tumor in my breast. Yes, I did have a few of these signs, and I had pain. Please, remember to do your monthly breast self-exam and watch for these signs.

Medically reviewed by Amy Tiersten, MD — Written by Jennifer Bringle on October 5, 2020

Everyone talks about the importance of catching breast lumps as early as possible. But did you know there’s a host of lesser known breast cancer symptoms that might not show up on a self-exam or mammogram?

According to the American Cancer Society (ACA), breast cancer is the most common cancer in American women, other than skin cancers, and it’s the second-most deadly cancer for women behind lung cancer.

On average, there’s about a 1 in 8 chance that a U.S. woman will develop breast cancer at some point in their life. The ACA estimates that more than 40,000 women will die from breast cancer in 2020.

The most common form of breast cancer is invasive breast cancer, which is any type that has invaded the breast tissue.

Less common forms include inflammatory breast cancer (which is caused by cancer cells blocking lymph vessels in the skin, causing the breast to look inflamed) and Paget’s disease, which involves the skin of the nipple or areola.

With the high rates of breast cancer, the American Cancer Society recommends women have the choice to start annual mammograms at age 40. The organization says women between the ages of 45 and 54 should get mammograms every year.

And while the disease is most commonly discovered by detecting a lump during a mammogram, there are other lesser known signs and symptoms of breast cancer that women should look out for.

Nipple discharge

Unusual discharge from the nipple can be an indicator that something is wrong in the breast.

According to Marisa Weiss, MD, breast oncologist and founder of BreastCancer.org, discharge that’s bloody or pink and generally only on one side can possibly indicate the presence of cancer in the breast tissue, particularly if it’s persistent.

Skin changes

Skin changes are actually one of the most common lesser known signs of breast cancer.

“Thickness or redness of the skin, along with a little puffiness like the skin of an orange is a sign,” says Weiss. “You see dimpling where the hair follicles are, like a navel orange.”

Skin differences like thickening, dimpling, and changes in color can indicate the presence of inflammatory breast cancer.

Nipple crust

Redness, scaling, crusting, or flaking of the nipple or areola can be a sign of Paget’s disease, which can be an early indication of breast cancer.

The skin changes on the nipples often look like more benign conditions like psoriasis or eczema, but don’t respond to traditional treatments for those issues and instead worsen.

New shape or increase in breast size

An enlarged breast — particularly if the swelling is isolated to one breast — or a change in the shape of the breast, can indicate issues within the tissue.

“An unusual shape where the contour is distorted and there’s a bulge in one part of the breast can be a sign of cancer,” says Weiss.

“It could feel like a lump, but it could also just be a region of the breast that feels firmer, and you can’t really feel a lump within it,” she says. “It also often becomes more pronounced when moving in different positions.”

Inverted nipple

A nipple that looks flat or inverted, as well as a nipple that points in a different direction than it once did, can be a sign of breast cancer.

“Instead of pointing straight outward or downward, it no longer looks in the same direction, but in a different spot,” says Weiss.

A flat or inverted nipple is another sign of Paget’s disease.

Red or hot spots

Red or hot spots on the breast, sometimes covering the entire breast, can be an indicator of inflammatory breast cancer.

While red or hot spots can also indicate mastitis — inflammation of breast tissue due to infection, most often experienced during lactation — mastitis symptoms are usually accompanied by fever.

Red or hot spots without fever that persist and don’t improve can mean breast cancer is present.

The takeaway

Weiss says it’s important to remember that these signs and symptoms can indicate other benign issues that aren’t breast cancer, but it’s critical to monitor the symptoms and act if they don’t subside.

And for those who’ve already had breast cancer, it can be even more difficult to discern the innocuous from the malignant. In that case, Weiss says it’s particularly crucial to monitor changes in the breasts and alert your doctor when something doesn’t look or feel right.

“You’re always worried about recurrence of a new problem, so the ability to recognize the less common symptoms and signs may be a little trickier,” she says.

It’s sometimes difficult to distinguish between leftover scar tissue from your prior breast cancer. And if you’ve had mastectomy and reconstruction, you could have lumps and bumps in there that are due to scar tissue from all the healing where they removed and recreated your breast, says Weiss.

No matter what, Weiss advises women to pay attention to their bodies and maintain regular self-exams and mammograms. And should they notice something out of the ordinary? Let their doctor know.

Jennifer Bringle has written for Glamour, Good Housekeeping, and Parents, among other outlets. She’s working on a memoir about her post-cancer experience.

Oncology Appointment & First Injections

I went to see my oncologist today. First, some good news, my blood panel was completely normal today, with no low or high levels on anything! Today was the first time I have had my blood look this healthy in 3 years. Of course, now, that will change somewhat with the meds that I started today. We discussed both meds that I started today, and I asked him a few questions that we thought of after my last visit. So, this is what we discussed and the questions he answered.

The Faslodex is given in two injections because it is a lot of medicine, 500 mg. The drug is very thick, so they must warm it before injecting it. It is administered intramuscularly into the buttocks (gluteal area) slowly (1 -2 minutes per injection) as two 5 mL injections, one in each buttock, on Days 1, 15, 29, and once monthly. Today was day one, so my next three appointments are on April 11th, April 25th, and May 23rd.

My dose of iBrance is a 125 mg capsule taken orally once daily for 21 consecutive days, followed by 7 days off treatment to comprise a complete cycle of 28 days. It is highly important that my doctor keeps an eye on my white blood cell count because this medication can drop my levels to too low, just like infusion chemo did. If my white blood cell count drops too much, he will lower my dose to 100 mg or 75 mg if necessary. 

I will have a PET scan every three months to check the progress of the meds on my tumors. If the meds shrink the tumors, we will keep my meds the same. If the tumors are growing, we will change my meds and try something else. The goal is for the tumors to disappear or shrink and then stay that way; at that point, my cancer will be controlled, and I will be in remission.

My questions: How long will I be on these meds? I will be on both meds as long as they are working, indefinitely.

Do I need to do anything special while on these meds? I need to drink 2 to 3 quarts of water every day, get plenty of rest, stay away from large crowds or people with colds because I will be at risk of infection, wash my hands often, and something new this time; I can’t eat grapefruit or drink grapefruit juice.

There are, of course, side effects, as with any medication. So far, I have had a headache tonight, but nothing that Tylenol couldn’t knock out. I had some discomfort from the injections for a few hours after getting them, but that has stopped.

I will let you know how I am doing as I go through my next few appointments.

Oncologist Appointment & PET Scan Results

I met with my oncologist this past Tuesday to discuss the results of my PET Scan. I was shocked to hear that I have two tumors in my neck, not just one. I found them early, so they are small, 0.9 x 0.5 cm and 0.5 x 0.5 cm. So small, under 1 cm, that they usually wouldn’t have done a biopsy on them, but I had already gone to my surgeon to have the initial ultrasound and biopsy done and had received the results already. I am happy that I took that initiative and went to see my surgeon as soon as I found the tumors so that I found out sooner rather than later that my cancer had returned.

The spot on my rib is still causing concern; it has been determined that it is a lesion that was not on my previous PET Scan in 4/2019. So with the fact that it was not on the last PET Scan and the combination of findings from the recent PET Scan, they are concerned that it is a solitary bone metastasis. My oncologist ended up ordering a biopsy of my rib after our discussion. So next Thursday, I am going to the hospital to have a biopsy of the lesion done. I will have both a local drug and anesthesia for the procedure. The procedure will take about an hour, and I will be in recovery for about 2 hours as they want to keep a close eye on me for bleeding and excessive pain. Unfortunately, I have to go through this biopsy to know if the lesion is cancer or not because it could change my treatment plan if it is positive for cancer, and I then have two different locations on my body with cancer.

Because I am having the biopsy done this coming week, I cannot continue planning with my radiation oncologist at this time. It is good that she now has the images she needed to determine my scope of treatment and if it is possible to treat the tumors in my neck, but the biopsy results could change everything. The lesion on my rib is on my 8th rib, right under my left breast, so as far as I know, it is located in the previous scope of treatment done in 2019/2020.

So my oncologist and I discussed what would happen if I couldn’t have radiation treatment. As far as my neck is concerned, he doesn’t want me to have to undergo surgery, but it is a possibility that I may have to go that route. When it comes to my rib, he didn’t want to speculate on it much. I asked him if it is common for there to be one tumor in one location when it comes to bone cancer, and he said it is unusual but not impossible.

Yesterday my husband remembered that I had pain in my rib several months ago. While we were discussing it, I remembered that I mentioned it to my surgeon when I saw him for a follow-up appointment in September. I pointed to the location of the pain and told him that I felt a bump there as well. When he felt the spot that was hurting me, he said, “that is your rib,” and I told him that I didn’t realize it was my rib because I had never been able to feel my rib so easily when I weighed much more than I do now. He asked if I remembered bumping into something or hurting it somehow, and I couldn’t recall doing anything like that. So I felt it yesterday, and when I pressed on it, it still hurt, and the bump was slightly more significant. So now that I remember that conversation with my surgeon, I am very anxious to get the biopsy done and meet with my oncologist to discuss the results and what will happen next.

I know this might not be common, but it seems that my body will cause me random pain, and then I find a tumor one to two weeks later. It has happened to me three times in a row, so I can say without a doubt that I will never, ever ignore any pain I might have in the future, especially if it is around my bones. My experiences are listed below; I don’t believe that this is a coincidence anymore.

Pain in my lower neck, to shoulder, to the shoulder blade = breast cancer

Pain from my outer ear, up the side of my head, to the top of my head = breast cancer in the lymph nodes in my neck

Pain in the 8th rib under my breast = most likely more cancer, not sure of the type due to location

I will update again next Thursday, depending on how much pain I am in, or Friday about my biopsy. Thank you for being here!

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