Appointment With My Oncologist & A Big Milestone

When I had my appointment with my oncologist on August 5th, I was hoping that my red blood cell count would finally be in the normal range, but it isn’t quite there yet. I wasn’t too surprised as I have been tired lately and not feeling the greatest. At this point, nothing but time will help, so I am trying to be patient.

I am still having a lot of issues with my memory. It seems like only my short-term memory is being affected, but it is starting to drive me crazy. My oncologist asked me if I am still “fuzzy,” and I said that yes, I am still having issues. So, I am taking a week off Anastrozole to see if it helps clear my head or not.

The good news is that I have reached my first significant milestone! On May 23rd, one day after our 17th wedding anniversary, I made it to my second anniversary of being cancer-free! I am incredibly grateful that I have made it through the first two years, and I am hopeful that I will continue to stay healthy and cancer-free until my next milestone in another three years, at five years.

Once I have my next appointment in December, I will finally be on a different schedule with my oncologist. I will switch from seeing him every three or four months to every six months. I am making progress, and it feels good!

My 5th Surgery: Follow-up Appointment WARNING: GRAPHIC SURGERY PHOTOS

Last Wednesday, I had an appointment at my surgeon’s office to have my steri-strips removed. I briefly noticed that when my appointment was made, the scheduler said a different name as far as who I would have my appointment with, and it was not my surgeon. I didn’t think much of it, and she didn’t say anything else about the appointment, so I didn’t ask her about it.

When I went to my appointment, I wasn’t too surprised that a different doctor, a PA, walked into the room with a nurse, but I was silently wondering what was going on. By this time, I was three weeks post-op, and out of about thirty steri-strips, I had only three left that were still attached to my incision, so removing them was quick and easy.

3.5 weeks after surgery

After he removed the steri-strips, I asked him, “so am I not seeing my surgeon anymore?” He looked surprised that I asked him that. He responded by asking and saying, “They didn’t tell you about me? I have so many years of experience.” No, they didn’t tell me that I would not be seeing my surgeon anymore. So he went on to say that he wanted to see me in two months, and my mind was racing. I asked him about my annual mammogram coming up in August. Last year, my surgeon ordered and scheduled my mammogram and reviewed the results with me. He said that he would release me to my regular physician and that his office could take care of it. I let him know that I had decided to find a different doctor to see and that since I see my Oncologist every three months and he draws my blood each time, I am not in a hurry to find a new doctor. He said he would see me after my mammogram in August, no need to come in, in two months.

I can’t remember my exact wording, but I told the PA that I would rather my surgeon order my mammogram and follow up with me like he did last year. He again told me how many years of experience he has, and I said, “I have been coming here for two years; it’s about my comfort level.” I didn’t want to insult him, but at the same time, I wanted to make sure that he understood what I was saying. So on my way out, I stopped by to schedule my follow-up appointment after my mammogram in August, with my surgeon. His office will schedule the mammogram a few days before the follow-up appointment, and they will let me know the dates and available times I can choose from.

I was numb when I got home from the appointment. I kept running the conversation I had with the PA through my mind. After getting over the initial shock of everything, I realized just how paralyzed and uncomfortable I was during the appointment, so I decided to call the office manager the next day and talk to her about it. When I spoke with her, I explained that I was uncomfortable during my appointment for several reasons. Not only was the PA a different doctor, but I have been my surgeon’s patient for over two years, so we have a rapport with each other, I am comfortable with him, and I trust him. Quite simply, I don’t know the PA, so I was uncomfortable as soon as he walked into the room. I told her that I was not informed that I would not be seeing my surgeon anymore, which didn’t help the situation. Also, because I have had so many surgeries, including breast implant placement, I want to continue to see my surgeon annually for my mammogram and exam. Yes, I could see any doctor for a mammogram, but he is a breast specialist, so it makes sense to see him for that particular part of my health plan each year. I also let her know that I was so uncomfortable that I held the paper top I had on closed until the PA went to look at my incision. If I had been seeing my surgeon, I wouldn’t have even put the left side up on my shoulder because I knew that he would be looking at my incision and removing any remaining steri-strips; again, it is about my comfort level.

She completely understood how I felt and said that the PA had been there since June 2020 to help out with follow-up and routine appointments because, sadly, my surgeon is inundated with patients. She said that some patients don’t care about seeing the PA, but some are like me and prefer seeing the surgeon. She apologized for how I felt and said that if I am uncomfortable seeing the PA, I don’t have to see him. She even put a flag on my file, noting that I only want to see my surgeon moving forward. I let her know that I would like to go ahead and see my surgeon for a follow-up in two months before I go on vacation, and she made that appointment for me.

Thanks to my call with the office manager, I feel much better about the whole situation, and I will confidently walk into my appointment in May. I didn’t ask her who was responsible for explaining to me about the PA and his role in my care; it doesn’t matter now that everything has been resolved. Was it wrong not to inform me? Absolutely! People make mistakes all the time, but I won’t let myself dwell on the situation. I am choosing to move forward knowing that my wishes will be honored.

Three Month Follow-up with My Oncologist

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.

9 Things You May Not Have Heard from Your Doctor About Breast Cancer

I can relate to quite a few of the issues described below. I appreciate this article because it reminds me that the way I have been feeling recently is very common for cancer patients. I need to continue to give myself time to continue to heal both physically and emotionally.

Medically reviewed by Michelle Azu, M.D. — Written by Anna Crollman on September 24, 2020

It can be difficult for others to understand what you’re feeling without going through it themselves.

When it comes to breast cancer, your medical team can provide you with a wealth of expert medical advice.

But when it comes to the actual experience — how to manage the side effects and long-term insight on your options — some insight may be better understood by talking to other women who have walked the breast cancer path before you.

1. Fertility treatment options are best explored before you begin chemo

Many times, this step can be overlooked in the process of expediting your treatment.

However, discussing fertility preservation options before beginning any chemotherapy — which could impact long-term fertility — is important.

2. When your hair falls out, it could be painful

As the follicles die, there can be a painful and tender sensation on the scalp.

Many survivors will recommend you shave your head with a close razor as soon as this sensation begins in order to minimize the discomfort.

It’s always important to talk to your treatment team about unfamiliar side effects you’re experiencing to know if they’re expected parts of the treatment.

3. You may experience significant weight gain from the steroids

Many people associate weight loss with chemotherapy, but some women have the opposite experience and actually gain weight. Either can be challenging, both physically and emotionally.

4. Medication can affect your sex drive

Lupron and other hormone-blocking medications can cause vaginal dryness and painful intercourse, as well as decrease your sex drive.

You’re not alone in these challenges.

There are treatment options, and the sooner you intervene, the better. Don’t be embarrassed to ask about your options in terms of topical lidocaine, dilators, and daily moisturizing.

If your oncology team cannot advise you further in this area, they should be able to refer you to a health practitioner who can. Your gynecologist may also be a good choice for discussing your concerns.

5. You have options when it comes to breast reconstruction

Don’t be afraid to get a second or third opinion. Most surgeons offer or recommend the surgery types they’re most familiar with.

They won’t be offended by you getting another opinion, and it will help you come to a decision as a more informed and empowered patient — which is critically important.

6. Your implants may be cold to the touch

This is a rare and unexpected experience that occurs in some women who’ve had implants, and it can be helpful to be prepared for this ahead of time.

Regardless, it’s important to inform your surgical team so they can ensure there are no concerns related to your healing.

7. Complementary treatments help to manage side effects

More and more, oncologists are recognizing the benefits of holistic and complementary therapies, such as massage, acupuncture, and more.

Ask your local cancer support centers or organizations for referrals. Some centers have an integrative oncology program where these services are offered by a team that can communicate with your cancer treatment team.

8. Life after cancer can be harder emotionally than active treatment

When all the appointments are done and you’re not being monitored regularly, it can be unsettling.

Sometimes it can feel even harder if those around you are ready to celebrate and “move on,” and you’re not.

Don’t be afraid if you find yourself struggling to cope. You’re not alone in these feelings and it’s a good idea to reach out to your treatment team about support services, which may include a mental health professional.

9. Reconstruction is a journey

Not everyone feels comfortable with their outcome after reconstructive surgery. For many, the first surgery is the first phase of a two-step process, or more in some cases if needed.

In my case, it has been 5 surgeries over 4 years, and I’m planning to do more revisions this year.

If you’re dissatisfied, give yourself time to adjust to the changes and then don’t be afraid to ask what revision options are available.

The bottom line

The first-hand experience you will gain by connecting with other breast cancer patients and survivors can help you feel less alone and help you navigate your own cancer journey with support.

Find other cancer survivors with similar stories in the BC Healthline app, the Young Survival Coalition groups, and even through hashtags on social media, such as #breastcancersurvivor#youngbreastcancersurivor, and #doublemastectomy.

Fatigue & Depression

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.

Follow-up with My Surgeon

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. 💕