As I said in my previous blog post, I have had some struggles recently. I have been trying to write about what has been going on, but it has been challenging to put it into words. I am still not prepared, but there may never be a good time, so I may as well start to talk about it.
I had a check-up with my oncologist back on the 7th of January. I didn’t write about my appointment right away because it was an unusual appointment, not my usual, “Yes, I am doing fine on my medication. My sleep is improving, as I am averaging just one night a week, where I am still awake at 5 or 6 am, instead of several nights a week. I am still fighting fatigue…blah, blah, blah…”
My bloodwork has improved to where all of my levels are normal except for my red blood cell count, it’s still low, and unfortunately, it may be my regular reading from now on. It’s not terribly low at all, 4.18, where 4.20 to 5.40 is a normal range. But being even slightly low, I can feel it, so hearing that I might not ever be in the normal range makes me terribly sad as I hate feeling this way. I asked if there is anything I can do, that some cancer patients say that they take iron to fight the fatigue. My PA said that I could take iron, but she cautioned me that it could upset my stomach, so I should take it only every other day to start if I decide to try it. She also said that she had heard that there is a liquid version that might be easier to take, but she hasn’t seen it, so she wasn’t even sure where I could get it. I am on the fence about taking iron, so for now, I am not doing it.
My PA explained that one of the essential readings they are looking at when I come every three months is my Hgb or hemoglobin. Low hemoglobin levels usually indicate that a person has anemia. There are several kinds of anemia: Iron-deficiency anemia is the most common type. This form of anemia occurs when a person does not have enough iron in their body, and it cannot make the hemoglobin it needs. High Hgb is known as polycythemia. This means you have too many red blood cells. Polycythemia vera is a cancer of the blood in which your bone marrow overproduces red blood cells. With polycythemia, a blood test also shows a high red blood cell count and high hematocrit. So low or high Hgb would be bad for me, it would mean I am either anemic, which was also a concern during my chemo treatments, or I have cancer in my blood. My Hgb is a little low, only one point from the lowest acceptable level, but nothing to worry about for now.
Now for the tough part…for most of my appointment, I cried a lot. It was hard to talk about, even with my PA, whom I adore. I kept looking away from her while I was talking and crying; I was embarrassed. Why was I crying? It was a lot of things, but mainly the fact that I have had an overwhelming feeling of guilt recently. Why do I feel guilty? As it is, it’s hard being a cancer survivor, and for me, it is tough because I have always had a great deal of empathy for people, but now it includes other cancer patients. Recently quite a few people I know, through various ways, are dealing with having a cancer recurrence. I feel guilty because I am still doing well; I am OK for the most part. They are experiencing my greatest fear, and I am feeling guilty because it isn’t me. It is also a reminder that my breast cancer was incredibly aggressive, and it could return at any time.
It is easy for most to say, “don’t live in fear, don’t worry about it,” but honestly, someone who says that to me clearly doesn’t understand how horrifying it is to go from barely needing to see a doctor to countless scans, blood draws, chemotherapy, radiation and four surgeries in a matter of fourteen months. All three of my doctors, my cancer treatments, everything I went through saved my life without a doubt, but it also damaged me in every way. I don’t know if I will ever be myself again, many cancer patients tell me that I won’t be, but I am doing everything I can to defy that future.
At the end of February, I will reach the second anniversary of my first appointment with my surgeon when I was diagnosed with breast cancer. In many ways, I can’t believe that it has been that long already, and in other ways, it feels like it has been a lifetime.
Thank you for being here; it helps to know that people care enough to read my blog, that the information I am sharing helps other cancer patients and their caregivers, and it helps me in more ways than I can say.
I have been going through quite a bit of fatigue and depression lately. I am still experiencing fatigue almost every day, so when I do have a burst of energy, I make sure to take advantage of it. On days when my entire body is hurting, I try to remind myself that I had my 4th surgery not that long ago, so I don’t need to be so hard on myself when I just want to rest. Resting has become another problem in the form of not being able to sleep properly. It is not out of the realm of possibility for me to be awake until 2 or 3 in the morning, sometimes even later, at least a few nights a week. I realize that fatigue is linked directly with depression, so I am beginning to understand how everything I have been dealing with within the last few months is all part of the same problem.
Not all of my depression is linked to breast cancer, but most of it is. I was talking to a breast cancer patient the other day, and she was asking me how long it has been since I had finished each portion of my treatment. I hadn’t thought about the timing of everything in a while, so as I was answering her questions, I was surprised that time has passed much quicker than I thought. It has been 11 months since my last chemo treatment, 7 months since my last radiation treatment, and 4 months since my previous reconstruction surgery; at times, it feels like a lifetime ago, but when I am having a bad day, it all seems like it happened yesterday. Even with all of that time passing so quickly, my body and mind are still healing. I have been experiencing what I thought were some of the side effects that I had at the end of chemo again, but chemo ended almost a year ago, so I am beginning to realize that some of them are symptoms of depression, as described below. Luckily, we are going on vacation soon, and the timing couldn’t be more perfect. I need a break; I need time away from everything that has been hurting my heart and soul lately, and I need to get my mind and body back on track, and I will!
Depression may be a side effect of breast cancer and fatigue is often a symptom of depression. Some people may have a tendency to depression, which treatment can make worse. At the same time, fatigue itself can lead to depression. Not knowing why you feel drained week after week, and not knowing that this abnormal feeling is normal for many people going through treatment, can make you depressed.
Treatment for breast cancer may leave you feeling sad, tired, or depressed. These feelings are complex conditions, resulting from and affected by many factors: your cancer diagnosis and treatment, aging, hormonal changes, your life experiences, and your genetics.
If you’re abruptly going through menopause 10 years earlier than you naturally would, with a quick lowering of hormone levels, you may experience feelings similar to postpartum depression.
Sadness is a natural part of your breast cancer experience, something you need to express and move through. If you don’t allow yourself to feel sad and grieve, the unresolved grief gets in the way of feeling better and getting better. You may be having hot flashes and trouble sleeping. You may be feeling overwhelmed or even debilitated. All of these factors can lead to fatigue and depression.
How can you tell the difference between fatigue, sadness, and clinical depression? The symptoms of clinical depression include:
an inability to cope
an overwhelming feeling of helplessness and hopelessness
inertia
an inability to concentrate
memory problems
panic attacks
loss of pleasure in what used to make you happy
lack of interest in sex or food
sleep problems
If you think you’re depressed, talk to your doctor. If your doctor doesn’t have experience treating depression, ask for the name of an accredited psychotherapist. Together you can sort out if what you’re feeling is depression or extreme fatigue. Therapy can help you feel supported and allow you to talk about what’s bothering you. Antidepressant medicines can help ease feelings of sadness and anxiety and help you feel better. An accredited psychotherapist with experience treating depression can help.
On Wednesday, I went to see my surgeon to go over the results of my mammogram and to have him take a look at my breast implants and surgery site from my surgery that was just about four months ago. When he came into the exam room, he said that yes, I have some small cysts in my right breast, but that he is 0% concerned about them. I asked him if the cysts could turn into cancer, and he said no, they wouldn’t as they are benign. I asked him if anything needs to be done about the cysts, and he said that we do not need to do anything concerning them; they will most likely go away with time. He said that he is very pleased with the images from my mammogram and ultrasound and that everything is clear and looks great! {He explained to me when he ordered the mammogram that we had to wait for at least six months after finishing my radiation treatments to do it, or the images would be cloudy, so that is why I had to wait so long.}
Next, he took a look at how I have healed from my last surgery and how my breast implants are settling in. Everything is looking good so far, but my chest has not finished settling into place, meaning that the area under my left breast, in particular, has not dropped down and rounded out, it is still somewhat flat. It takes time for the internal part of the chest to heal and for the implant to get into place, so there is nothing to be alarmed about; my body just needs more time.
We do have to watch for a complication from my breast implants. It is called Capsular Contracture, and it is a breast augmentation complication that develops when internal scar tissue forms a tight or constricting capsule around a breast implant, contracting it until it becomes misshapen and hard. When my surgeon put my breast implants in, he added donor tissue to help prevent this complication from happening, but that doesn’t mean that it won’t happen anyway. He said that if it does happen, I will need to gauge my level of pain, watch for distortion, let him know that I have a problem, and that I am in pain that I can’t bear. He explained that some patients would have a severe case of Capsular Contracture and have very little pain, while others would have a milder case and have horrible pain. He said that if the pain is too much for me, I need to tell him to fix it, meaning I will need to go into surgery and have my implants removed. Whether or not I would need to have a new set of implants put in or have them left out is hard to say; it just depends on the circumstances. Being the excellent surgeon that he is, he told me that this could happen when we were discussing the option of breast implants. I told him that it was worth the risk to me as I was feeling very out of proportion after my first reconstruction surgery. I wanted to feel like me again and not the stranger staring back at me in the mirror.
The reason why we were even discussing this horrible complication on Wednesday was that he pointed out that the implant in my left breast is much firmer than the implant in my right breast during my exam. The firmness is caused by the 25 radiation treatments that were part of the breast cancer treatment performed on my left breast. So, it is already firm, and I need to watch it and check to make sure that I don’t have any harder areas that could indicate a problem is developing.
Unless I notice anything in the meantime, I will not go back to follow-up with him until six months from now. I have fewer appointments with my oncologist and surgeon these days, a real sign that I am healing and adjusting to life after breast cancer. 💕
On Monday, I had my first mammogram in 18 months. Once my temperature was checked, I signed the necessary paperwork, and then I went over to the registration area. I noticed while going through the process of registering that the paperwork from my surgeon ordering my mammogram, said to do an ultrasound “if medically necessary.” I prayed that I would not need an ultrasound because I knew that meant that they saw something during the mammogram and would need to take a closer look.
The breast center that I go to, which is in the same building as my surgeon and oncologist, takes terrific care of me. I barely waited for 5 minutes before the nurse came to get me to take me to the back so I could change into a gown. I love the gowns there, they are pre-heated, and so are the blankets! It’s the little things I guess, anything to feel more comfortable when you are waiting to go in to have your breasts smashed in a machine. I was incredibly nervous because I couldn’t help but think about the last time I had a mammogram; when the results said that I had a mass that was “highly suspicious of malignancy.”
When I went back for the mammogram, the first task we needed to take care of was to go over everything I had been through concerning my breast cancer and treatment. It was hard to recount everything from the number of treatments to how many surgeries I have had, what type of surgery it was, and when everything occurred. It was hard to go through the details, not because I couldn’t remember them but because I could, and it was just so much to go through in a short period of time. Even now, when I start thinking about everything that has happened, I get depressed, and sometimes I am brought to tears. I am lucky to be here, and I know that, but that fact doesn’t take away the memories and pain of every blood draw, surgery, and treatment that I have endured.
I didn’t realize how different the process of a mammogram would be with breast implants, so it was a shock to go through what seemed like twice as much imaging. First, I had a regular mammogram, and the standard trays were used with the usual amount of images being taken. But since I have breast implants, I had to have extra imaging done with my implants being pushed up and out of the way. I won’t lie, it was painful to have the edge of the metal platform jam into the scars under my breasts, but it was necessary to be in that position to move my implants out of the way. Once we had finished the mammogram, the tech had me go back to the waiting room while the doctor looked over the images. I waited for a few minutes, and when I saw the tech come back, I was hoping that it was time to leave, but no, the doctor asked for a few more images. So we went back to the mammogram room, and she took two more images, and then sent me back to the waiting room.
I waited for a few more minutes, and then a different and very pregnant tech came to get me. I noticed right away that she was taking me into the ultrasound room, and I immediately got upset. She told me not to worry and that this was normal, but I knew better. She only imaged my right breast, the side where I did not have breast cancer. Once she was finished getting more images, she took me back to the waiting room while the doctor took a look at the ultrasound images. After a few minutes, the mammogram tech came to take me back to the mammogram room for one last mammogram image of my right breast. Now my anxiety is starting to kick into high gear! “What did they find? Do I have cancer in my right breast now? I can’t go through everything again!” My mind was racing, and I wasn’t going to calm down until I knew what was going on. Still, at the same time, I truly appreciated that they were taking their time to make sure that they were able to see and identify what was showing up in the images and give my surgeon and me accurate information.
This time instead of taking me back to the waiting room, the tech had me wait in the mammogram room while the doctor took a look at the last image. She said that I might have to go back to the ultrasound room with the doctor so she could pinpoint the area that was causing concern. Sure enough, I went back into the ultrasound room, and the tech did some measuring and marked an area with a pen for the doctor. The doctor came in and took a few extra images, looked at everything carefully, and then told me that I have some tiny cysts in my right breast, but they are benign, there is no sign of cancer! 😊
When I was first diagnosed with breast cancer it was unimaginably overwhelming in so many ways. My head was spinning with questions and fears and like many newly diagnosed patients, I felt like I needed to quickly learn a new language. Little by little I began to understand my diagnosis and what it meant for me as a breast cancer patient. Now, 16 months later, I have come across all of these terms either through my own experiences, discussions with my doctors or by reading the endless sources of information that I have discovered along the way. In the beginning of my journey it would have been so helpful to have all of the information below in one place for me to reference. I hope by sharing this article I am able to help answer some of the questions you might have as a breast cancer patient or a caregiver to a breast cancer patient.
At the bottom of this article, Monica suggests writing your cancer story basics using this guide. I am finding that quite often people will ask me for this information whether it is in a new forum that I have joined or during a conversation I am having with someone. I have included my cancer story basics here in this blog post and on my “About Me” page.
My Cancer Story Basics: I was Dx at age 51 w/ ER/PR+, HER2-, IDC. I have had ACT, Rads, and I am on a 10 yr plan w/ HT, Anastrozole. My cancerversary is the date of Dx on February 25th, 2019. I have had a partial mastectomy, port-a-cath insertion, reconstruction w/reduction mammoplasty and insertion of breast prosthesis following reconstruction.
The author of this article,Monica Haro, is the community guide for the breast cancer support app BC Healthline. This particular app has been an amazing source of support for me both while I was in the middle of fighting breast cancer and also now that I am learning to live life as a survivor.
Medically reviewed by Krystal Cascetta, MD — Written by Monica Haro on July 6, 2020
Utterly overwhelmed is how I felt when I faced the uncertainty and devastation of my breast cancer diagnosis 5 years ago.
I dove into online communities to connect, observe, research, and be heard. When I did, I was lost on some of the language. There were so many terms, acronyms, and abbreviations to learn.
Some things that now seem obvious to understand weren’t while dealing with a brain processing the new trauma of my cancer diagnosis.
If you’re wondering what in the world a red devil, foob, expander, and ooph is, I’ve got you.
I assembled this glossary of some common language used in the breast cancer community in hopes of easing the way for the newly diagnosed, and empowering you to jump in on those online discussions with some general breast cancer terms.
This is an abbreviation for BReast CAncer gene. BRCA1 and BRCA2 are two genes that have been found to impact the chances of developing breast cancer, but they don’t cause cancer.
There are many possible cancer anniversaries one might note. Defining those days to celebrate or commemorate is very personal and defined individually. They can trigger mixed emotions of trauma, wins, relief, joy, and fear.
The main canserversaries I observe are my date of diagnosis and date of my DIEP flap recon.
This is cognitive dysfunction associated with chemo treatment that causes:
difficulty concentrating
memory lapses
inability to multitask
trouble remembering names, recalling words, or spelling common words
Chemo brain is real for me. I’m the queen of brain glitches.
Some experience chemo brain for the short term. Others, like me, have lingering chemo brain.
Here’s what else you need to know: hormone therapy, radiation, targeted therapy treatments, post-traumatic stress disorder, as well as depression and anxiety, can also contribute to cognition issues.
Dental problems that may occur from chemo treatment. After chemo, I began to have dental problems I had never had before, including chipping teeth, increased cavities, and sensitive teeth.
I now find it’s often necessary to use a straw when drinking beverages as my teeth are sensitive post-chemo.
A person says they were “de novo” when their first and only breast cancer diagnosis was stage 4 and they’re living with metastatic disease.
Not all people living with stage 4 are diagnosed de novo. Their first diagnosis could have been early stage 1 to 3 and they later experienced a stage 4 metastatic recurrence.
Breast cancer stage 1–3 that hasn’t metastasized to bones and organs. Early stage breast cancer is typically any breast cancer that’s contained in the breast.
Estrogen receptor/progesterone receptor. Someone might ask what your hormone receptor status is. They’re basically asking if your cancer is ER/PR-positive, or ER/PR-negative.
This is pretty self-explanatory, but what you need to know is there’s a flat community that has been doing advocacy work to normalize bilateral or unilateral flat so newbies know that flat reconstruction is an option on the recon menu.
See @flatclosurenow on Instagram for inspiration and resources.
Human epidermal growth factor receptor 2 is a protein that can play a role in the development of your breast cancer. Knowing if your HER2 status is negative or positive helps determine treatment plans.
Hormone therapy. These are drugs — such as tamoxifen — that are used to block estrogen in some tissues while aromatase inhibitors lower estrogen levels. These help prevent recurrence or slow progression of cancer to prolong life.
Lymphatic dysfunction. Swelling in the arms or other parts of the body after lymph nodes are surgically removed or damaged by radiation. It may never develop or it could develop years later.
Metastatic breast cancer. Cancer that has spread to other parts of the body such as the bones, liver, brain, or lungs. MBC is stage 4 cancer, which is the most serious stage.
Short for metastatic, metastasized, and metastasis. A person might say, “I have bone mets” or “that person is a member of the mets (stage 4) community.”
That’d be the A in ACT: Adriamycin. It’s one of the most powerful chemo drugs invented. It’s called the red devil because of its bright red appearance.
Adriamycin causes many of the classic symptoms you may associate with chemo: nausea, vomiting, hair loss, etc.
This word is generally understood outside the breast cancer community to describe someone who had stage 1–3 breast cancer and is done with surgeries or active treatment.
This means living with, through, and beyond cancer. It includes people who continue to have treatment over the long term to either reduce the risk of recurrence or to manage chronic disease.
I might say, “I’m 5 years into my survivorship,” and what I mean is I’m 5 years out from my original diagnosis.
This word is used within the community to describe anyone of any stage who has had a breast cancer diagnosis.
It’s often used to evoke a positive and empowering vibe that we’re bigger than our disease and it doesn’t define us. Within the breast cancer community, people might identify as a survivor or a thriver.
When breast cancer is ER/PR-positive and HER2-positive.
Write your story
Try writing your cancer story basics using this guide. I keep mine saved in my phone so I can easily share my details when asked in online forums.
Here’s mine: {Monica Haro}
“I was Dx at age 42 w/ ER/PR+, HER2-, ILC. I did DD ACT, rads, and I’m on the 10 yr plan w/ HT, and thriving 5 yrs into my survivorship. My cancerversary is date of Dx on Sept. 18, 2014. I’ve had expanders w/ fills, implant exchange, explanted, and had DIEP flap recon. I have chemo brain. I had an ooph at 44 that put me in early menopause. I identify as an ally to the flat community.”
Monica Haro is a Bay Area native, where she’s presently raising her son Christian. She’s the community guide for the breast cancer support app BC Healthline, serves on the board of directors with Bay Area Young Survivors (BAYS), and has shown her breast cancer advocacy art exhibit with El Comalito Collective in Vallejo, California the past 3 years. Coffee, books, music, and art make her happy. Follow her on Instagram or connect with her via email.
