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.

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

Yesterday, I had my first follow-up appointment with my surgeon. Once the tech was done with my blood pressure check and updating my information, she removed my bandage. She apologized at one point because she was pulling on the bandage a little harder because the gauze was sticking to it. I assured her that she wasn’t hurting me because I was still numb under my arm from my first surgery almost two years ago. I asked her how the incision looked, and she said that everything looked good. She then told me that my surgeon would be in soon to see me and left the room.

A few minutes later, my surgeon walked in. I turned to look at him and noticed that he had a winter coat on. I had been sitting there with half of my paper top on burning up because the heat was on. I laughed and said, “You do know that it is 73 degrees outside, right?”; He smiled and said that for some reason, he is always cold when he is in the office.

I have a ton of steri-strips, about 30, and my incision is about 9 inches long. This is my most extended scar so far, but because of how my surgeon combines internal stitches with steri-strips for healing, my scar will be minimal, and it will become less noticeable with time. The scar on my chest’s right side from the first reconstruction surgery is barely noticeable 17 months later, so I am sure this scar will be the same.

I know it looks gnarly, but I am not in much pain at all.

Once we were done talking about this recent surgery, he said that this should be my last surgery. He is confident that I will be fine from here on out and that I will not require any further surgeries. The only way I would need surgery in the future would be if I develop Capsular Contracture. We are both aware from previous conversations that I could develop that particular complication because I went through many radiation treatments and I have implants. I will need to stay mindful of any changes that I am noticing and let him know. The only way to fix Capsular Contracture is to go back into surgery and have my breast implants replaced, so hopefully, I will never have to deal with that.

I asked him if I can start walking on my treadmill. I told him that I had finally fought off the fatigue plaguing me for over a year and that I was getting back to working out again before this last surgery. He said, “so you are itching to get back on,” to which I replied, “yes, I have been since the day of my surgery!” He said that I could walk on my treadmill, but I can’t swing my arms; I need to keep them at my sides, and I can’t do anything too strenuous. I need to keep resting and healing over the next two weeks, and then I should be released from any restrictions once the steri-strips are removed during my next appointment. I told him that my goal is to lose another 20 lbs or so, and he said that it would be ideal for me to do that as it is essential to keep my body mass low considering the type of cancer I had. Estrogen-fed breast cancer thrives when a patient’s BMI is too high, and mine is too high because I am about 20 lbs overweight. So the best thing I can do for myself to keep from having a recurrence of my cancer is to continue exercising, watch my portions, and what I am eating to get to an ideal weight and BMI.

To end my appointment, I thanked him for doing this last surgery. I let him know that I could feel the difference later on, on the day of my surgery, that the area was gone, my chest looks much better, and that I felt much better. I said, “First, you saved my life, and now you are helping me improve my life. I will never be able to thank you enough.” He looked down and away from me when I said that to him, with an almost bashful look. His reaction at first surprised me, but then it didn’t because his genuine reaction reminded me of why I am so grateful that he is my doctor and how lucky I am that he has been by my side from the beginning. He does not have a big ego like some surgeons; he is passionate about his work, humble and caring, and it shows.

Getting Back To Me

Cancer takes so much away from both patients and caregivers. A little over a month after my diagnosis, I had the first major surgery I have ever had in my life, and during that surgery, cancer took a portion of my left breast away from me. Once I started chemotherapy, little by little, the drugs and cancer began to take even more from me. Cancer took all of my hair, some of my toenails, it dried out my skin, it aged my face and body, it took my confidence, energy, health, and my overall well-being both mentally and physically.

When I heard from other cancer patients that it could take a year to two years to recover from fighting cancer, I didn’t believe them. Before cancer, I always thought that I was strong and doing reasonably well health-wise, other than having type two diabetes. I lost over 100 pounds a few years ago, and I had even discovered in October of 2018 that I was starting to enjoy running.

I am often asked if I had any signs that I had cancer before I found the first tumor during a self-exam in February 2019. Looking back, I did have symptoms, but I didn’t know it at the time. About one week before Christmas in 2018, I started a run, and five minutes in, I was out of breath and extremely fatigued. I was bothered that I couldn’t continue, but I just assumed that I was coming down with a bug or something, so I wrote it off and promised myself that I would get back to running as soon as I felt the energy to do so. When my husband and I went home to see my Dad for Christmas, I noticed that I felt even more exhausted than I had a few weeks earlier. It seemed like no matter how much sleep I got, it wasn’t enough, and the simplest task wore me out. Then a few weeks into January 2019, I woke up one day with my left shoulder blade, my shoulder, and the left side of my neck hurting. I thought that I had slept funny on that side and that it would work itself out in a few days; it didn’t stop hurting until I had my first surgery when all of the tumors were removed.

As I sit here two years after my breast cancer diagnosis, I am beyond thankful for so many things. Recently, I am most thankful for the fatigue I have been suffering from for so long, finally subsiding and helping me get back to me. I never really knew what real fatigue felt like until I had aggressive cancer and had to go through a rigorous schedule of scans, blood draws, surgeries, chemotherapy, and radiation treatments to save my life. But now, I am getting back to a regular schedule when it comes to working out, and with each workout, I feel better and better. Last night I ran 1.50 miles in 20 minutes, not bad for someone who has been through so much and hasn’t gone on a run in over 25 months! I am proud of myself and I am really enjoying working out again.

I am getting back to me, day by day…. 😁

How I Learned to Adjust to Post-Cancer Life

Going in line with my last entry, here is an excellent article about adjusting to life post-cancer. It’s so easy for people to think that just because you are done with the surgeries and treatments, that you are back to normal. I get so tired of people asking me if I am done with “everything” and then responding with “so you are all good now” when I respond by saying that yes, I am done with the surgeries and treatments, but I am on medication the next ten years. I generally don’t say anything more as it is clear that the person I am talking to doesn’t even remotely follow what is going on with me. I know that the world doesn’t revolve around me, but it is somewhat insulting when someone I thought was a good friend, has such a conversation with me. I can say, though, that I have had this happen a few times, but they are still my friends, and I love them, so I am still here to talk whenever they want.

This article describes the hell that I am currently dealing with, and have been for months, and in many parts, it is almost as if I had written it myself. As I try to get through the bad days as best as possible, I have had a very positive change, thanks to this article. I have finally been able to get a handle on my issues with not being able to sleep, and I credit two things for that; the first is that I have found an app that works well for me when it comes to relaxing at bedtime, so I can fall asleep quickly before my mind has a chance to race and keep me awake. {the app is called loona}. The second is that now that the neuropathy is mostly gone from my hands, I am making jewelry again, which makes me very happy, so my stress level is much lower on most days. {My website is mmillsdesigns, where you will find my online shop and blog about my small business}.

I want to conclude by saying that it may sound odd to anyone who has not been in the position of having doctors by your side for many, many months, saving your life from cancer; that the routine, even if it involves the terrible experience of chemotherapy treatments or many surgeries, becomes something that you depend on and get used to as time goes by. It’s almost effortless to get emotionally attached to your doctors when you see them regularly, especially in the beginning after being diagnosed. I was going to appointments twice a week for months as the severity of my breast cancer was coming to light. My chemotherapy treatments were every week for four months, and my Radiation treatments were every weekday for five weeks. So when you have been deemed a survivor, for me, it was after my last clear mammogram on August 17th, 2020; there is a sense of relief as you hear the words “no evidence of disease,” but there is also an overwhelming feeling of loss as well because now all of the hustle and bustle centered around saving your life is going to slow down a lot as the doctor’s appointments become less frequent; I currently see my oncologist every three months, and I see my surgeon every six months. As I have said in past posts, the first two years after the end of my treatments is the most critical time in survivorship because the chance of re-occurrence is at its highest. After two years have passed, the chance of re-occurrence will drop slightly, and when I reach five years with no re-occurrence, the chance will substantially drop; so, that is why my doctors are closely monitoring me for the next few years.

After reading my commentary and the article below, I hope that you, my dear readers, will understand a bit more about the complexity of post-cancer life and survivors’ experience.

Medically reviewed by Jenneh Rishe, RN — Written by Jennifer Bringle on December 17, 2020

Moving on and finding some semblance of normalcy is much more difficult than advertised.

I’d just closed my eyes for a nap when the trill of the phone ringing snapped me back to consciousness. Gingerly reaching for the receiver, I answered hesitantly, nervous as to who might be on the other end.

It was my surgeon, calling with the results of my mastectomy pathology.

“The tissue from your breasts was totally clear,” he said with a smile I could literally hear in his voice. “And your lymph nodes were all normal, too. There was no evidence of disease.”

These are the four magical words every cancer patient longs to hear: no evidence of disease.

They’re the goal — the best possible result of months of grueling treatment. They mean you get to live.

Months earlier, I wasn’t sure I’d ever hear those words. After finding a lump in my left breast, I was diagnosed with stage 2 invasive ductal carcinoma, along with the BRCA2 gene mutation.

I faced a gauntlet of chemotherapy followed by a bilateral mastectomy with reconstruction.

There were bumps in the road along the way — an emergency room visit and an allergic reaction to one of my chemo drugs — but I’d finally reached the end.

I could finally relax and get back to my “normal” life.

The first clue that this would be easier said than done came a few weeks later, when I found myself in tears after being released by my surgeon for annual visits instead of the every few weeks I’d been seeing him up to that point.

Driving home that day, wiping away the tears suddenly spilling down my cheeks, I couldn’t figure out why I was so sad. Shouldn’t I be happy?

What I would soon learn is that this is a common occurrence among cancer survivors.

Once treatment ends and we get the all clear, the world expects us to move on, find our “new normal,” and become those smiling survivors we see in marketing campaigns.

The reality is, moving on and finding some semblance of normalcy is much more difficult than advertised.

In the days and months after completing treatment, I dealt with an array of unexpected emotions.

Sadness at the end of a comfortable routine with my doctors, whom I’d become very attached to during the months they stood alongside me, trying to save my life.

Fear that every little pain or cough could be a sign of new cancer or cancer that spread.

And grief over all I’d lost — my breasts, my hair, and trust in my own body.

As time wore on, I realized instead of becoming happier and less afraid, my anxiety was reaching new levels.

Fearful — often irrational — thoughts about cancer recurring or metastasizing began to disrupt my daily life.

Instead of paying attention to my son and husband, I was often distracted, Googling symptoms on my phone.

Even happy moments like birthdays and vacations were marred by my irrational fears that a headache was a brain tumor, or my backache was more than simply a pulled muscle.

I knew I had to do something to get my anxiety under control.

Though I’d resisted asking for help, pridefully insisting I could handle it myself, I realized the time had come to seek professional assistance.

I scheduled a therapy appointment with a counselor specializing in the needs of cancer patients and survivors.

Even though she couldn’t personally understand what I was going through, her training and experience gave her a level of empathy and insight that made talking to her about my anxiety calming and productive.

During those sessions, she taught me another valuable tool to help quell my anxiety: meditation.

Through basic mindfulness techniques like focusing on my breath and learning to acknowledge and then dismiss negative thoughts, I became better able to manage my anxiety on a daily basis.

Using a guided meditation app before bed began to replace my nightly symptom Googling, leading to easier sleep.

While working on my mental health, I also started focusing on improving my physical health.

Cancer treatment left me weaker and more sedentary, so I started incorporating walks into my daily routine to rebuild my strength. Whether it was a quick jaunt on my lunch break or a treadmill workout in the evening, adding vigorous-yet-gentle physical activity helped me feel stronger and more energetic.

I also began paying more attention to what I ate. While I certainly still indulge in my beloved sweets, I also try to eat more fruits and vegetables daily.

These manageable changes to my diet and exercise may not prevent my cancer from returning, but they will help me build a body that’s strong enough to endure treatment again.

While all these new things certainly helped me adjust to life after cancer, I knew I needed something else to help manage my anxiety. After talking with my doctor, I made the decision to give a mild antidepressant a try.

I’d been resistant to adding another medication to my daily regimen, but I also reminded myself that I didn’t question taking a pill that might prevent my cancer from returning. So why was I so reluctant to take something that could help me with the anxiety that had taken over my life?

For those of us who’ve survived cancer, there’s a great deal of pressure to live up to the persona of strength that gets bestowed upon us during treatment.

We’re treated as though we’re almost super-human — the ones who beat death.

But the truth is, that fortitude is often a facade, masking the fear and pain that cancer survivors live with after treatment ends.

The process of working through those emotions to achieve a sense of normalcy in our lives is an ongoing, personal journey.

While what worked for me might not work for everyone, finding my own formula has allowed me to regain something I thought I’d lost after cancer — happiness.

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.