Oncologist Appointment on Monday, August 15th

So a few days ago, I had my monthly oncologist appointment to chat with my doctor, have my blood checked, and get my Faslodex injections. I know that my doctor worries when his patients lose weight, so I was quick to tell him that my hubby and I have been doing Keto for the last three weeks. He was both happy and relieved to hear the news because it explained my 7lb loss since my appointment a month ago. Overall I am feeling much better, and a lot of it is thanks to Keto. Eating fresh food 95% of the time has made a big difference in my well-being. It takes a lot of planning, and it has easily doubled our grocery bill, but we are not eating out, so the cost increase is really only due to the ridiculous price of food.

I have been posting pictures and recipes on our Facebook page, M&M Bistro Recipies, for a few years, and now I am adding some of the Keto recipes we have recently discovered as we change our lifestyle to a healthier way of eating.

As far as my bloodwork is concerned, it is a little worse. My white blood cell count dropped a little more from last month, so my ANC dropped as well to 1.3, and it should be at 1.5 or higher. There is no need for significant concern at this time, but if it continues to drop, I may have to change to the weaker dose of iBrance, which would be from 100mg to 75mg. There isn’t anything I can do to help my white blood cell count rise, so we will wait and see where it is in September and go from there. My red blood cell count is lower, but that only affects my energy level, which has not been the best but is improving thanks to eating healthier.

I have had quite a few people reach out to me recently to ask me questions about my experience over the last 3 1/2 years concerning going through breast cancer, being cancer-free, and then having cancer return. I am always open to helping others through such a difficult and confusing time as it can be with a breast cancer diagnosis. With that said, please do not hesitate to contact me, and as always, thank you for being here.

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.

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!

CT Guided Biopsy

A few days ago, I had a CT Guided Biopsy of my 8th rib on the left side, on my back. Everything went well; I am in a little bit of pain, but nothing that Tylenol can’t help. The doctor instructed me to rest for the rest of the day on Thursday, remove my bandage on Friday, and resume my normal activities.

After finishing my paperwork in the hospital registration office, I went to the lab to have my blood drawn for a few panels; among a few other things, they had to check my kidney function before doing the CT, and after that, I went to radiology to wait to be taken to the pre-op area.

Once my nurse was done prepping me for my procedure, my anesthesiologist came to get me and take me to the CT room. He explained that he would only give me enough medication to make me relaxed and a little sleepy but not entirely out. He said that if I did get sleepy not fight it and let myself fall asleep. I did fall asleep for some of the procedure, but I don’t think it was for very long because the process only took about 30 minutes.

When I walked into the CT room, they had me lay on my stomach on the CT table. I was shocked to find out that the lesion is actually on my 8th rib on the left side of my back, not in the front, and it is very close to my spine, so that has me a bit concerned. The rib that I fractured some 18 years ago, that I was thinking was what was showing up in my scans, was a few ribs down from where the lesion is located, so it has nothing to do with the lesion at all. So with that said, I don’t know what to expect when I meet with my oncologist next Tuesday to get my biopsy results.

I have had many people ask me what I think of all of this, how I am feeling, and what my gut is telling me. I can’t help but see the similarities to the first time I went through cancer three years ago. With every appointment, things get worse and worse, more scans, more biopsies, etc. As before, I want to know what type of cancer I have to fight against, and I want to get started on whatever treatment plan my doctors and I agree on as soon as possible so I can get this over with and move on.

I am feeling OK so far. Even if the lesion on my rib is positive for cancer, it appears to be localized like the tumors in my neck, so it is not as aggressive as it was in 2019, and because of that, I have been feeling much better physically this time around so far. Mentally I am up and down; the stress is unreal because this is the moment as a cancer survivor that I have been fearful of, having to deal with recurrence.

Lastly, what is my gut telling me? I will be shocked if the lesion on my rib is negative for cancer. After reading the PET scan report and looking up a few medical terms that I had not seen before, I immediately thought that it would be a bad result once the biopsy results came in. I, of course, hope that I am wrong, and in a few days, I will know for sure.

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!

%d bloggers like this: