Guest Blog: Stage IV on My Own Terms

By Alison Gareh 


July 30, 2018 ... the day I heard the words “We found cancer”. 

Between that day, and a full month of scans (CT, two MRIs, echo and full body bone), my diagnosis went from stage II Invasive Ductal Carcinoma (breast cancer), to stage III HER2+, to stage IV with mets to the liver. I also went from being told that I would need a lumpectomy and radiation, to a mastectomy with chemotherapy and radiation, to surgery coming right off the table and going straight into six months of chemo and hormone blockers - do not pass GO!

It was a lot to process in a very short amount of time. But the one thing that brought me some peace (until the stage IV diagnosis), was that they’d be cutting the cancer out of me. In fact I even went as far as to tell them to take both of my breasts. 

I’d had lumpy, bumpy, cystic breasts for years, and after receiving a clean mammogram in 2017, for a lump that was obviously not just a “grouping of benign cysts”, I just wanted them gone.

So when that came off the table, I was shook! 

And I had a really difficult time wrapping my head around it. 

 Even though the explanation that my oncologist gave me made complete sense, it was still super unsettling to hear that we were going to leave three tumours in my breast, and count on chemo to do what surgery could be too risky to do.

BUT, it worked!

 Within just three weeks we could already feel the primary tumour shrinking a little. And, at the six month mark, an ultrasound showed no evidence of any sonographic mass in the breast - so all three tumours were gone. And a CT scan showed that the 20+ lesions on my liver had shrunk by almost 85%. 

I wasn't quite NED (no evidence of disease), but I was considered stable!  And that meant that I could stop my weekly chemo, and carry on with hormone blocking infusions (Herceptin & Perjeta) every three weeks - for as long as they continue to work.

On March 5, 2019 I left PMH after my last round of chemo not really know what to expect, but hoping that things would go back to normal . Or as close to “normal” as life could be with stage IV cancer. 

It didn’t even occur to me that I might have issue with the fact that I still had my boobs. I mean the tumours were gone. Chemo had worked! One and done!

But, as it turns out, it wasn’t quite that simple.

I’d had such tunnel vision while going through treatment that I hadn’t really given it much (conscious) thought. So once I finally slowed down and caught my breath, I realized that I was still terrified of my breasts. 

Just because the chemo worked, doesn’t mean that I don’t still get cysts. And feeling a lump when you have cancer, incites an almost PTSD type of emotion. 

 While I certainly do not want to minimize, IN ANY WAY, what the millions of incredibly strong women who have had lumpectomies and mastectomies must go through as far as the healing and recovery process goes (physically, emotionally and mentally), and the body image issues they must have to work through - I was totally blindsided by the fact that I was experiencing some of the same emotions. Not necessarily the physical part of that, but definitely the mental and emotional.

My relationship with and how I look at my breasts has changed entirely. I don't like them. I don't like looking at them. And I certainly don't want anyone else looking at or touching them. That's not what they're about anymore. 

And that kinda sucks, because it affects a whole area of my life that I used to really enjoy. An area of my life, that as a successful 43 year old, I should be rocking! (Sorry mom 🤷🏻‍♀️)

Now granted, part of that is due to the chemically induced menopause that I'm in. I mean there's nothing like cancer treatment, hot flashes and weight gain to kill the libido.

But it’s a confusing emotion to have. 

Back in November I went to a ‘Sex, Cancer and Intimacy’ panel hosted by RETHINK Breast Cancer, and the three survivors on the panel, who were married or dating, all discussed the struggles they had with intimacy. Between treatment side effects, surgery recovery, and the mental and emotional baggage that comes with a cancer diagnosis and losing a piece of themselves, I can only imagine how sex and intimacy might be the last thing on their mind. But, because they had partners, it was something that they had to work through, all the while dealing with everything else.

And that gave me a lot of food for thought.

I mean I still had both of my breasts. And I was also single, so I didn’t have anyone else’s feelings (or needs) to think about, and feel some sort of responsibility towards. I was able to do this whole "cancer thing" at my own pace and on my own terms. Everyone else be damned! 

But what I’m learning is that this doesn’t make my journey any easier than theirs. It simply makes it different. 

Cancer is cancer. It’s a shitty hand no matter how it’s dealt. 

And in addition to adapting to my new normal (whatever that may be), I’m also realizing that I need to be patient with myself. I'm not even one year out of chemo yet. My body is still recovering from that. 

So for now, I’m going to give myself a break. I’m not going to over analyze the whole “I’m scared of my boobs” thing - the way I over analyze almost everything.  

I’m simply going to be grateful that my treatment protocol worked, and that I’m alive. And I’ll let the rest work itself out in time.



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1 comment

  • Erin

    What a journey. Thank you for sharing so honestly. ❤️

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