By Aliki
Cancer is a subject that a lot of people are afraid of, some tread around carefully, and others simply avoid discussing. And most, if not all, think that it will never happen to them. Until it does.
In June 2022, at the age of 36 I was diagnosed with Inflammatory Breast Cancer (or IBC), the rarest form of breast cancer, as only 1-2% of breast cancers are IBC. Unlike what we have been taught as women from the minute we get a bra, IBC does not appear with a lump. Instead the skin looks inflamed and it resembles an infection similar to mastitis, and it spreads in a matter of weeks. Unfortunately, IBC has not been researched as extensively as other breast cancers mostly because it gets misdiagnosed. Usually it is diagnosed at a later stage (Stage III or IV), and has already done the damage and there is no going back.
Looking back, I still thank my lucky stars, because the only thing that made me think that something was wrong, was the fact that the colour had changed. There was no pain, no swelling, and no lump of course. My GP wanted me to get it checked right away, and the radiologist at the hospital wasn’t convinced when they saw that the mammogram and ultrasound showed nothing. The surgeon ordered an MRI just to be sure, and that is how they caught it. Because the tumour was on the chest wall and deep in the axilla (arm pit) and could have been missed until it had spread further. And then it would have been too late.
Apart from the feelings of despair, shock and terror, being diagnosed with IBC introduced me to a whole new world with medical knowledge and terminology that I had probably heard in series and films. For example stages I, II, and III are considered curable. Stage IV, also known as metastatic cancer, because it has spread to another location in the body, is considered treatable in the best case scenario. Unfortunately, I am Stage IV because, while my cancer didn’t spread to another organ, it spread to the lymph nodes in the mediastinum, close to the lungs, the aorta, and my heart. Because of this some difficult discussions took place;
“We cannot operate”
“We cannot use radiation”
“Chemo is your only option”
“Our aim now is to prolong your life”
“We estimate two years”
It was a crippling process.
Just before I started chemotherapy, I cut my hair, something that most people find daunting, but as we were going through a heatwave at the time, I welcomed the new look. We got my children to cut pieces off and help them process the fact that I was going to be bald pretty soon. We shared the news, I started writing posts on an Instagram page, to update friends and family, and to get my frustration out. And I started chemotherapy and immunotherapy in July 2022.
I lost my hair, my tastebuds, my energy, my strength, and on some days I lost my will, but I remained positive as much as I humanly could. For my children, my husband, for myself. I wasn’t ready to go, and that stubbornness alone was going to get me through this.
The first scan after I had started treatment, showed that my tumours were shrinking, and I was officially in remission. In just two months the outcome changed;
“If it continues to shrink at this rate, you won’t need an operation or radiation”
“Since you are responding so well to the chemo, we can look at other options to prevent recurrence”
“We have more plans now”
“We can keep you on immunotherapy for years and years”
And just like that, I saw that indeed I had a chance to make it out alive. Literally.
So I continued every three weeks to receive chemotherapy and immunotherapy, did 6 rounds in total leading up to the end of October. For Halloween of 2022, I didn’t need to dress up; I was bald, pale, almost yellow, had a bloated face, my nails had fallen off, I would huff and puff when walking and lose my breath when I talked. I also couldn’t eat properly, slept, but got no rest, and felt sick around the clock.
Thankfully the next scan showed that only 2 tumour blobs remained, each the size of 6 mm, in the axilla and the other in the mediastinum. The tumour in the axilla has once been 6 cm and the mediastinum one almost 2 cm; I had come a long way in the remission world. Now I needed to build up my strength, because I would be going into the next set of treatment. The one my body hopefully will be able to handle for a few more decades.
Along with the immunotherapy that I still do to this day every three weeks, I started hormone therapy, in order to place me as firmly as possible into medically induced menopause. This is because my cancer was oestrogen fed and this has proven in the last decade to be a very effective way of preventing recurrence. The fact that it is possible to biopsy your cancer tumour in order to check what protein or hormone it feeds on, still amazes me. This is one of the reasons why we are able to fight cancer much more effectively than a decade ago. Why cancer is turning from a death sentence to a chronic illness.
In July 2023 I received the best news; “No mammacarsinoma or metastasis detectable”. I laughed, I cried, I jumped for joy, cried some more, while laughing and felt all the feelings a person who has been told they aren’t going to die just yet, could feel. Of course, my medical team, while also thrilled for me, grounded me by reminding me that I will be in treatment for the rest of my life, with immunotherapy for as long as I can handle it, and hormone therapy for at least another 15 years, until my body naturally goes into menopause. And scans every few months to keep everything in check. These preventative treatments come with their own set of side effects;
-Immunotherapy makes me sleepy for a couple of days and can cause heart problems.
-Hormone therapy brings the hot flushes, the headaches, the acne and the general hormone imbalance from blocking the oestrogen suddenly, and can cause uterine cancer.
It’s a lot. But I wake up every day and take one step at a time. One breath at a time.
I am getting used to the new normal, having accepted that things will not go back to how they were, but then again, I’m not the same person I was before. My fears are real, the small stuff is just that; small. I don’t take things for granted, but I also do take them for granted. Because I want to live. And therefore I am living.
And smiling way more often while doing so.
Sharing my journey: https://www.instagram.com/ibc_journey_of_aliki/ and
