The Unexpected: Phyllodes Tumors

Life is full surprises…but the journey to our destination can be just as meaningful as the places we hope to navigate to

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You think you knew what you thought, but then you realized you didn’t know what you thought you knew…

Let’s face it, life is full of surprises.  I’m sure you’ve read/heard this all before.  Some good, some bad.  There’s no denying that.  I’m only 31 and I never really thought that I had been through a lot in my life until lately.  Sure I’ve had some pretty weird, crazy experiences.  I have an ex that took me through the ringer, I’ve had some narcissistic, shitty supervisors, some pretty abhorrent jobs, professors that I loathed, some pretty forgettable sexual experiences, credit problems, you name it.  But I’m nobody special, and I’m certain that my experiences probably mirror a lot of yours.

The Diagnosis

Recently, however, something happened that rocked me to my core…to say the least.  In January I was diagnosed with breast cancer.  Well, maybe I should back up a bit.  I was actually diagnosed with a phyllodes tumor back in July of 2015.  This is an ugly, aggressive SOB that is typically benign, so that’s usually a good thing…  Prior to this diagnosis, I had 3 fibroadenomas that were surgically removed (If you’re not very familiar with these, they are pretty common, but for more info, please see here).

 

IMG_0265
I think this was at my last mammogram, sometime before my last fibroadenoma surgery

I knew that there was always the possibility that they would recur, and they did.  My pathology reports always came back negative, and I had no worries because this was something that I could just cut out and then get on with my life.  But apparently something else was cooking that I couldn’t have even imagined.  After I had my last fibroadenoma removed in December, 2014 something just wasn’t right.  Scar tissue that should have healed after a few months just seemed to get bigger and thicker in that area.

My partner in crime/my better half and I both knew something wasn’t right.

 

After almost a decade together, we both know my body very well.  She actually pointed out her concern before I was ready to.  This is important because, I was still on that “oh, it’s just scar tissue, it’ll go away in time”.  Keep in mind that this is all occurring in March, 2015, so I was still holding on to hope.  But, I’m glad I listened to her.  Fast forward to July 2015 where things got interesting.  At this point I had started a new job in a new state.  I was waiting for my health insurance to kick in and I couldn’t afford to buy a plan through the marketplace.  When I was finally able to see a specialist, I was on edge, but still hopeful.  My “scar tissue” was bulging from my left breast at this point so much so that a mammogram was out of the question, so my doctor did an ultrasound and biopsy.  After the ultrasound he suspected that it was a phyllodes tumor that had either been misdiagnosed as a fibroadenoma, or had just grown in aggressively and quickly.  The tumor was 7 by 9 cm.  Yes…it was a big one.  I was already pretty self conscious about the shape and size of my breast at this point; it got in the way of some of my daily activities, I couldn’t sleep comfortably on my left side, I had to be selective about the tops that I wore because I could see one gigantic protruding breast and another seemingly normal one which made me self conscious that others could too, and it caused quite a bit of discomfort when working out.

The pathology report finally came back and confirmed that it was a phyllodes tumor, but it was benign (please see here for a more in depth explanation for phyllodes tumor).  So again, I breathed a sigh of relief.  The plan was simple – surgical removal of this nuisance was the goal.  However, since I had so many surgeries on my left breast, I didn’t have a lot of tissue left, which meant that removal of the tumor with wide margins wouldn’t leave me with much of any of my breast, so the decision was made to go with a full mastectomy and reconstruction.  I admit that when I first heard this, I was numb.  I don’t think I really responded with anything other than a “okay, I understand”.  It didn’t really hit me until after I left my appointment that I would be losing my breast.  I knew it was necessary, but it still threw me for a loop.  It was much easier to take though because I knew that I’d also get a plastic surgeon who would be able to reconstruct another breast for me and all would be well…right?

What came next…

My next step was to consult with the plastic surgeon recommended by my breast surgeon.  I was initially hopeful, but I just didn’t like the vibe that I felt with the first surgeon, so I decided to go for a second consult with someone else.  My main concern was that I didn’t want to have artificial implants.  I am, and have always been very concerned with what I put into my body.  Don’t get me wrong, I do like the occasional (or the frequent occasional if I’m craving it) fast food and junk food.  But for the most part, I am very picky about what goes in.  I wanted a breast reconstructed from my own body tissue.  Not only would this give me a more natural appearance, but I wouldn’t have to also worry about replacements later down the road.  I also want to let you know that this decision was right for me because of my own beliefs and feelings.  But if any of you are contemplating this decision, please don’t let anyone make your choice but YOU.  Feedback is good, if you want it, but it is ultimately your decision.  If you’re thinking of what is best to do, I would recommend the Susan G Komen website on breast reconstruction.  It’s a very good starting place.  I ultimately decided to go with a  DIEP procedure, which in a nutshell involved them taking the fat from my abdomen and transferring it to my breast.  My biggest concern was whether I’d be able to still use my nipple and at first I was hopeful that I would be able to keep it, at least.  So, in December 2015, I had a nipple sparing/delay surgery to determine if I would be able to.  I knew I wouldn’t be able to breastfeed, but I at least wanted to be able to feel it in whatever way I could, because let’s just be honest, the nipple serves a variety of purposes, and I wasn’t willing to forego all pleasure in light of everything that I was experiencing.  Instead of trying to explain what this procedure is, I think I will let these websites explain it better: About Health and Melbourne Breast Cancer Surgery.

What’s to come…

This illustrative post only scratches the surface of all that has transpired up until now.  But I just want that to sink in for a bit.  The emotional toll of it all hit me harder than I ever would have expected.  I tend to be a generally independent, strong, private person.  So other than  a few “what ifs” and “I wonder what it will be like after this is all over”, I tried not to dwell on my situation too much.  I still went to work and carried on with my social life the same way that I always had.  There were some highs and lows but for the most part, I’d like to think that I handled this news the best way I could.  My main hangup, however, was how unfair it felt.  I initially felt a sense of guilt because I was about to undergo a mastectomy for a benign breast issue.  I wondered if people would look at me any differently, or treat me as any less of a survivor because I didn’t actually have cancer (mind you that this encompasses all the news and emotions that I had received and felt prior to my actual cancer diagnosis).  I was very selective about who I shared this with.  Other than what I shared with my fiancé and the strong, empowered survivors on the Breast Cancer.org  discussion board, I mostly kept these doubts to myself.

 

Purple Awareness Ribbon
Awareness is just the beginning

More to come…

I am actually blogging as I lie in my hospital bed receiving treatment for my breast cancer.  Please stay tuned for the second part of this story.  For those of you who like to read and love the detail, then I hope that this meets your needs.  On the other hand, for those of you who prefer to just skip straight to the point…what can I say?  Feel free to skim the content and take from it what you need.  I do hope that my story inspires anyone facing a similar situation and helps you get a better perspective for the layers that make up the lives of those who face these types of situations.  This is part of my therapy, this is a part of my recovery, and I must admit that I feel a sense of relief as I let these words flow from my mind to this screen.  So please stay tuned for more.

 

 

P.S.I’d also like you to check out the Modest Needs website.  This is a non-profit site dedicated to helping people who may be at risk of slipping into poverty for a variety of reasons (loss of income, medical issues, car trouble, etc.).  I do happen to be one those people in need, but right now I don’t think it’s fair to ask my readers for help outright.  However, if any of you are moved by any of the other requests that you encounter, please feel free to share and perhaps reach someone else who is in need.

Your comments, stories, testimonies, and questions, especially are welcome.  All I ask is that you be respectful to other readers, commentators, and myself.  I don’t have all the answers, but I do have perspective.  Much love…

Peace signs, warm hugs, firm handshakes, fist bumps, and quick cheek kisses to you all…

 

Author: stormcloudsblog

Public health warrior. Social justice soulja. Sushi lover. Adorer of animals. Lover. Fighter. Waiting to exhale. Avid reader. Movie buff. Will slash a walker, brace for winter and break bad-all in the name of love.

6 thoughts on “The Unexpected: Phyllodes Tumors”

  1. Hullo there. Loving the way you write, your spirit, all those links you provide for more information. Knowledge is power so thanks for not keeping it all to yourself. Be thinking of you and praying for the best.

    Like

  2. You are in my prayers, when I heard I couldn’t believe it. Me and Ty and Myiah love u and hope u get well real soon..

    Like

      1. yes. I will let them knw, and I am gonna keep you in my prayers. Love you and we hope you get will soon.

        Like

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