How I discovered I had Metastatic Breast Cancer

 You might want to get comfy and grab a cuppa for this post...

My diagnosis

This may be the hardest blog post I will write...I probably have to explain a little background first. Over 15 years ago I felt lumps in my breast, and I went to see a specialist who told me I was feeling "fatty lobules" in my breast. After that I really had no confidence with checking my breasts for lumps.

Skip forward to November 2018 and I noticed a dimple in my right breast, it freaked me out so I made a time to see a GP. At the time I did not have a regular GP, every time I found a GP I liked, at the practice I go to, they left! So I made an appointment with a female GP. 

It started with a dimple...

When I think back I should have got a second opinion, I really didn't like the GPs manner. She examined me and described what she could feel that made me think my breast was just becoming a bit deformed! She told me she didn't think I had anything to worry about, try not wearing a underwire bra, but have an ultrasound just in case or if you are still worried. I left that day embarrassed but relieved, with a referral for an ultrasound that I would do once I felt prepared enough to have someone else tell me my breast was deformed...

At the time I had just started a new job at work and was keen to impress my new boss. Plus I increased my hours to full time and still had parenting and other life things to deal with. The ultrasound referral got filed away for a day I had time.

A new health issue takes priority...

In around August of 2019, I remember thinking I need to get that ultrasound done. My breast had got worse and I needed to find out how 'deformed it had become'. But then my priorities changed again. On 16 September 2019 I rode to work with my gorgeous friend Donna. It had been raining that morning and the roads were still a little wet. We had made it to work with no incidents and I was safely at work in the basement carpark. While negotiating the ramps down to the bike store my bike slipped from under me on the painted concrete and struck my head/face on my left side and my brain bounced in my skull. I suffered what is called a Mild Traumatic Brain Injury (MTBI) due to a small bleed on my brain. The next 6 months would be about having rehab with a Physiotherapist, Occupational Therapist, Speech Therapist and Psychologist. Plus a gradual return to work. I will post more details about this in a future blog post, but lets just say I was really preoccupied with my recovery from my MTBI.

In March 2020, my good friend Ali was diagnosed with breast cancer and under went surgery to have a mastectomy, followed with chemo and radiation therapy. When we had a chance to catch-up (when we were allowed to go for walks during covid!) Ali shared here diagnosis story with me and mentioned a dimple in her breast. The hairs on the back of neck prickled and I knew it was time to get that ultrasound done.

Ok, finally going to get an ultrasound and find out how deformed my breast is...

It probably took me a couple more months after speaking to Ali before I booked my appointment. I had some stress at home I needed to deal with as my daughter was going through a really hard time. Once that crisis had passed I made the appointment. Once I felt I could deal with something else...

On the 21st of October I had my ultrasound, almost 2 years from when I first got the referral. Despite the fact my dimple had become a dent I still was preparing myself for news that my breast was just some how deformed, nothing else sinister. But by the end of the appointment I was was a scared as hell. They wouldn't tell me anything definitive, but they did confirm I had something to worry about. They did a fine needle aspiration biopsy on my right breast and told me to see my GP in two days.

We are 90% sure you have cancer...

On the 23rd of October, I made an appointment to see a GP for my results. By now I had a wonderful regular GP who had helped me through my MTBI but he did not work on Friday's so I saw another GP. My husband Phil came with me and it was the news we were dreading. From the scan alone they were 90% sure it was cancer. The results of the biopsy were not available yet but it was time to see a breast surgeon.

My daughters birthday is the 25th of October. We decided to save our news until after her birthday and when we knew more. We only told our parents the news. My daughters birthday gave us a chance to forget about it, make a fuss of her and pretend life had not changed.

Yes, you have cancer...

On the 26th of October I met with my Breast Surgeon. I was seeing the same surgeon Ali used as she gave him a glowing recommendation and he did not disappoint. My Surgeon was able to confirm that from my biopsy I did in fact have cancer in my breast. I was now 100% confirmed. I had my first mammogram, another ultrasound and a core biopsy this time. A core biopsy provides a bigger sample to analyse and would be able to determine what kind of cancer I had.

Telling our children...

That night we told the kids...I felt bad as I felt I was cheating my daughter from celebrating her 10th birthday. Although it was the day after her birthday, we had a family tradition of celebrating birthdays for the week before and after the actual date. However, I did not want to keep this secret from them any longer and I did not want to slip up in front of them and scare them.

Our son took it really well, he had learnt about cancer in school and was confident I was going to be ok. Our daughter was very upset and I reassured her I was going to be ok. That I would most likely have the same treatment as my friend Ali and Ali was doing great now.

On the 28th of October I had some further tests at St Andrews Hospital. We were now trying to determine what stage my cancer was at. I had a CT scan with the dye that makes you feel like you have peed yourself! Plus another dye and a bone density scan. My husband Phil and I made the most of the day, as I had to wait after having the second dye before having the bone density scan. So we went to nearby Hutt Street for lunch.

The news I was not prepared for...

On the 30th of October we were back at the Breast Surgeons office. It was time to find out what type of cancer I had & what stage I was at. I was feeling pretty confident that I would be stage 2, stage 3 at worst. Stage 4 was not even a consideration....

We were the last appointment of the day and we waited for over an hour to see him. I was so keen to get this day over and get home to my parents who were with the kids. Finally we were called in and we sat in the Surgeon's office. On reflection I should have known by his face or manner, but I was in total shock as the words came from his mouth, 'unfortunately we have found cancer in your lungs.' I remember asking "do I have lung cancer as well?". "No it is breast cancer that has spread to your lungs."

 "It is incurable and inoperable" meanwhile the Billy Joel song "Only the good die young" is playing in my head....

"Your treatment will be medication to manage your cancer, not cure it" cue when The Verve's "The drugs don't work" takes over from Billy Joel.

I remember gathering the courage to ask "am I going to die?" and my surgeon's reply "its difficult to answer how long you have, your oncologist will be able to give you a better idea, but you are unlikely to live to an old age..."

I think I went through quite a few emotions in a manner of minutes. Denial, confusion, fear, grief, numbness and sadness. It took me a quite a while longer to get to acceptance. The thing that upset me most was leaving my family. I want to be around for them, I need to be around for them. I don't want to leave my husband to do it all. I want to see my kids grow up and hopefully become parents. I wanted to one day care for my parents as I had seen them take care of my grand-parents. I wanted to be able to repay all the love and kindness they had shown me. I was not worried about myself or dying as such, but the things I wouldn't get to do, see or be a part of.

Developing my mantra...

It may have been later that day or just after we left the Surgeon's office. But my husband Phil said to me "promise me if you have a thought or feeling isn't going to help you get through this, you let it go." This has been part of my mantra. If I have a thought or feeling that doesn't help me on this journey, I acknowledge it and I let it go. This isn't always successful of course, but it helps 99% of the time.

I try not to look backwards too much, I am only human so I do on occasion. But I try and bring myself back to now. I can't change the past, so I don't invest too much time thinking about it. In some ways I think my life has been preparing me for this battle, if I had not had the experiences I have had in my life maybe I would have completely fallen apart, given up and become a statistic.

Besides, the hardest was yet to come. I had to go home and tell the kids that my fight was going to look very different to what I had prepared them for. This time my son took it hard and my daughter seemed ok. I promised I would keep them informed and not lie to them, but I worried about how they were taking the news. So I reached out to some parents of their friends to let them know in case they needed to talk it through with their friends. 

100% trust in my oncologist...

The following Monday I met with my Oncologist for the first time. She was warm, light hearted but did not beat around the bush when in came to answering any questions I had. At the first appointment I remember she talked a lot, while my husband Phil took notes and I just remember looking at her and thinking "I like you, you're nice, I don't know what you are saying, but I like you."

But the key facts she told me was, my cancer was the most common kind of breast cancer - Hormone positive, HER2 negative. It had lots of funding and a lot of advancement in that area. 

My treatment...

The first step is to stop feeding the cancer and starve it, by blocking oestrogen and preventing it being produced. So I needed to have an implant injected into my stomach (monthly) to effectively turn off my ovaries as I was pre-menopause and still producing oestrogen. In mid-November I had surgery to remove my ovaries as I wasn't keen on the monthly injection, wanted to be as safe as I could and feel like I had some control in a situation where I felt I had little. 

I was also prescribed a drug called Tamoxifen to block any residual oestrogen and the oestrogen produced by fat cells (who knew- hey?.) After my surgery this was switched to Letrozole, which is only available for post-menopausal women - which I was now!

The other step in my treatment is to have a cell inhibitor called Ribociclib. It is a relatively new treatment/drug and it has been around less than 5 years. But so far it has tremendous results for those who take it. "Her girls" (how she refers to her patients) who are on this treatment still haven't reached the end of its effectiveness. My oncologist described my treatment as a marathon, not a sprint, where I take a medication until it stops working and then move on to the next latest advancement.

Side effects...

Before starting Ribociclib I had a baseline ECG, as it can damage the heart, fortunately I have a good 'ticker' and so far so good. The Letrozole or my surgical menopause, give me wicked hot flushes. I feel like I am cooking from the inside out. I often have trouble sleeping as I toss and turn and alternate from sweating to freezing cold. Then there is the fatigue...It is hard to describe but I will give it a go....it is like being constantly tired and weak. I get physical and mental exhaustion. I experienced something similar when I had my brain injury, except that got better over time.

The Ribociclib made my fatigue worse, plus introduced nausea. I am currently unable to take the Ribociclib as it has '"made my liver grumpy" and I am waiting for it recover.

Next time I will share what I have been doing to help "cheer up" my liver and other lifestyle changes I am making.

Until next time, my name is SJ Boehm and I am a fearless MBC warrior