W.I.K.A.B.C Series: What is worse than forgetting to wear your prosthetic?

Yes.

This is it.

This is the reason Breast Cancer is suddenly so important to me.

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After our son arrived in January 2018, we noticed that my breast milk was bloody. My doctors and Dr. Google advised that we monitor for a while, as it was possible that my milk ducts were acting funky from being awakened for the first time. I wasn't feeling any pain and the breast milk wasn't poisoned or bad, so I forgot about it monitored for a while, as advised. 

In April of the same year, we decided to speak to a general surgeon, as the bleeding hadn't stopped. The surgeon did a physical breast exam and ordered a mammogram. These two tests didn't show any problems, so life continued as usual. It so happened that the bleeding stopped almost immediately after the mammogram, so as far as we were concerned, everything was fine. I had been doing physical breast exams for a very long time, so I continued these without really expecting to find anything.

* * *

“Dear God, A Lump”

I was outside Lagos on a work trip expressing and freezing breast milk for my 7-month-old, when the bleeding resumed. This wasn't just streaks of blood in breast milk; this was blood with a little bit of breast milk. I was alone in my hotel room. I panicked, just a little bit. Then, I did another physical breast exam, and there it was - a lump. It felt like the size of one and a half agbalumo seeds. 

The next thing that crossed my mind was - "Oh my goodness, I have cancer". You see, my sister had told me of a dream she had, and this dream was now being manifest. However, I was not as scared as I was curious. I really wanted to know how far this would go, if at all. 

I don't remember who I told about the lump, but I remember not telling the older family members because I didn't want to have to deal with their emotions while trying to figure mine out. It seemed a bit selfish at the time, but looking back now, I have no regrets. 

Lesson 1: I was able to make objective decisions about treatment plans because I was selfish about the emotions surrounding this situation. I didn't even allow myself to feel anything till muuuuuuuuch later.

* * *

The Journey Begins

As soon as I got back to Lagos, I went scouting for a professional opinion. I tried to meet with familiar doctors but that didn't work out, so I checked Google/my HMO and found this place on Elsie Femi Pearse, in Victoria Island. One of the general physicians did a physical exam first. I wasn't imagining things, there was really a lump there. I had to see the Head Physician, the owner of the place. I remember walking into his office and seeing a model cross section of a breast on his table. I immediately felt comfortable. I told him the story so far; he told me I should not have done a mammogram in the first place.

Lesson 2: Mammograms are not always useful for women who have active breast tissue i.e. whose hormones are still making changes to their breasts during periods, pregnancy or breastfeeding. A mammogram cannot necessarily tell the difference between a swollen breast duct and a tumor. (Now, this is my lay understanding of the explanation I was given; please speak to your own doctor and get your own understanding).

I went on to do a breast ultrasound scan as directed by my doctor. I saw the lump there standing out like a sore thumb. The doctor advised that we do a lumpectomy to give us a chance to biopsy the lump and figure out what was really going on there.

Lesson 3: Not all lumps/tumors are cancerous; finding a lump doesn't automatically mean you have breast cancer. A biopsy should be carried out on the questionable/suspicious cells to determine what they really are. Some medical experts I spoke to after the fact commented that for the biopsy, the doctor should only have taken a slice of the tumor out in a minimally invasive procedure, as the chosen procedure would have meant I had an unnecessary surgical scar, if the lump wasn't cancerous. I don't regret the route my doctor took, because I wondered (again in my understanding) what would happen if the slice that was taken out didn't contain the cancer cells that would have kept multiplying in the breast.

* * *

The First Time

The lumpectomy was the first surgery I had on my breast. We had first gone to a lab to do a dye localization (guided by the images from the ultrasound, the doctor injected a dye into the lump to make it easy to identify when the breast was sliced open). It was a relatively small slice. I was awake during the procedure. I kept cracking jokes and being silly. The whole thing was over in about 30 minutes. I must say though, that it was one of the most disgusting post-op experiences I ever had. I chose to go home immediately after the procedure. The doctor had explained to me that the wound would drain a lot, but I brushed it off thinking, this is a much smaller scar than my CS one. What I didn't consider was that I was still producing milk and that the milk would drain with the blood, producing the most disgusting smells I had ever come across. I hated myself for the first five days after that surgery. Plus, I couldn't take a proper shower!

When I went to the hospital for an inspection to get the forsaken drain out and the doctor told me the drain couldn't come out yet, I cried like a baby. I went back home and used my breast milk pump to extract as much of the fluid as I could. I continued that till the drain and stitches came out. 

Lesson 4: If you will have surgery, ask your doctor about the possibility of using a suction drainage system. It will involve carrying a container of the draining fluid around with you, but it is not half as messy as using bandages.

All of this happened while I dealt with the anxiety of waiting three weeks for the results.

I finally got a call from the hospital asking me to come in for a discussion, as my test results were out. 

* * *

D.C.I.S.

On December 21, 2018, I sat in front of the doctor while he reviewed my test results; I tried so hard to get a hint from his expression; the guy was stoic. He finally looked at me and said, "Okay, I have to be sure I explain this properly". The lump was cancerous. It had been categorized as DCIS - ductal carcinoma in situ. This was good news in cancer-speak. The tumor was still in the place it originally occurred - the earliest stage of breast cancer, the easiest to treat with the least drastic treatment option; the most responsive to treatment. 

I needed time to process this. At this time, we had shared the goings on with everyone, so too many people were waiting for those test results. Again, I decided to be selfish, only sharing the test results with Hubbs and my sisters. I put everything on the back burner. It was time to focus on Christmas celebrations. Our son was also turning 1 after my birthday. I wasn't ready to be stressed. We had already taken the lump out right, what could go wrong in three weeks?

We received a message on December 26, five days after I was diagnosed with breast cancer, that our dear friend and brother lost his sister to breast cancer.

* * *

Second Time

We went back to the doctor, and he presented us with treatment options ranging from monitoring the breast, to getting a mastectomy. I, again sans-emotions, decided that the mastectomy would be the best option. It was a drastic move, considering that statistics show that Stage 0 cancers have been treated successfully with the conservative options. 

The doctor suggested we do a wider excision, which is basically making a larger cut with respect to the lumpectomy and scraping tissue around the location of the original lump. If the biopsy results of this second surgery came out clean, a mastectomy would definitely be overkill. 

Another three weeks of waiting and the doctor invited me in to explain that traces of the cancer were found in the surrounding tissue.

* * *

Four ‘Second Opinions’

I got the first second opinion when my boss reintroduced me to a mutual friend from our college days. She had become a cancer specialist and could answer all my questions, including the ones I didn't know I should ask. She raised her brows at some of the decisions that had been made in the course of treatment so far, but wasn't terribly worried.

Then, we met with a doctor from England who was guest-consulting at a specialist center on Kofo Abayomi Str, in Victoria Island. At this point, we were discussing the possibility of going abroad to perform the mastectomy - I needed two calculators side by side to do the pound sterling mathematics. The doctor took the tissue samples from the previous surgery to a lab abroad for additional testing. The results were the same. (I must say at this point that although the thought crossed my mind that I could have been erroneously diagnosed, because ... Nigeria, I was relieved that the results were the same. Nigeria needed a win, and I didn't mind that my health was the playing field).

We also spent some time discussing with someone who was a strong believer in alternative treatment options. She explained that though she had been at it for a long time, and it had cost her a shipload of money, she recommended it for anyone who was willing to try. She asked me to do everything I possibly could to avoid chemotherapy.

I also spoke to two people who had been through breast cancer and were able to help me feel comfortable about what was going on.

Lesson 5: When your well being is in question, do not feel bad about double-checking what you have been told and seeking out the best possible option for your health AND peace of mind.

Lesson 6: I also spoke to my OB-GYN to understand how breast cancer treatment could affect future child-bearing plans. The mastectomy wouldn't have any negative effects. If I had opted from hormone treatments or chemotherapy, I would have been advised to freeze my eggs.

* * *

Bye Bye Boobie

We finally decided on the next line of action and prepared towards it. I was so sure of the decision I had made. I actively refused to consider the probability of dying - this was a conscious effort, and I did so well at it till my cousin died of cancer at the end of April. All the what-ifs came rolling in like a flood. I was shaken. What if I died?!

On Friday, May 3, I had a mastectomy done. I didn't do the mastectomy because it was the only option I had; I did it because it was the option I felt at peace with. My office had graciously given me a lot of time off work to recuperate. It was much needed rest.

* * *

The Aftermath

I must admit that I underestimated the psychological dimensions of dealing with a disease like breast cancer. Sometimes, I would have my husband remind me that I made the right decision. I would turn off the lights while I was in the bathroom because I didn't want to see my reflection in the mirror. I fought with the people asking me, out of love, to cover myself so people wouldn't notice my uneven chest. They were only trying to protect me from unkind questions and comments, understandably, but I really needed to embrace the new me.

During the mastectomy, lymph nodes were taken out from under my arm, to be biopsied along with the breast tissue, as that would be the route through which the cancer would spread, if it did. As expected, nerves in my arm and chest were wounded in the course of the surgery - I still have an impaired sensitivity to touch in those areas, though I would scream if you pinched me or tried to massage the arm. It's confusing.

More recently, I started seeing signs of lymphedema. It's gotten bad enough to prevent me from wearing any jewelry on the affected arm, but it's mostly painless. 

* * *

GOD

My first reaction to God when I found the lump was 'I know you would do whatever you like, seeing as you refused to heal Grandma'. My granny had died a few months before I found the lump in my breast, even though we had prayed and prayed and prayed. God didn't give me the answer I wanted, so I was hurt.

I am so grateful that He worked hard on my behalf, ‘in spite of’ me. My family, the best support system one could ask for, my friends stepping in before I even knew I needed them, the medical staff going above and beyond to ensure I got the best possible care - all of them allowing themselves to be used by God to help me.

God has shown me that He will always do what is best for me - that I am grateful for.

* * *

Not Enough Words

I am not where I want to be yet - I am dealing with minor body image issues and struggling with my weight, but overall, I am in a good place. I do not have enough words to explain how grateful I am for this journey and where I have come from. My still-breastfeeding almost-two-year-old reminds me that there is joy in the simple things, like having two legs and playing outside. 

I had no reason to expect breast cancer - no one in my family ever had it; and I am 33 years old - we used to think it couldn't happen before age 40. I am defying many expectations by sharing this story, not for pity or sympathy, but to share the knowledge I have gained in the past months. Even if this helps only one person, I'll be satisfied.

The breast tissue and lymph nodes that were tested after the mastectomy came back 'clean', I didn't need further treatment. I only have to see a doctor every three months and have the other breast screened every 6 months. 

#BLESSED

* * *

Q: What is worse than forgetting to wear your prosthetic breast? 

A: Having breast cancer.

* * *

UPDATE:
December checks came up clean. Thank God!