To Treat or Not to Treat: Phyllodes Tumor

So the unexpected happened to me. I was diagnosed with breast cancer at 31 years old.

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Where I left off…

So the unexpected happened to me.  I was diagnosed with breast cancer at 31 years old.

I had to let those words sink in again.  There’s something about owning a word or a phrase.  Sometimes I find that the more I let those words reverberate in my head, the weaker I feel.  Other times I feel like a warrior, a survivor braving a storm of fear, uncertainty, impatience, disdain and worry.  Picking up from my previous blog post (The Unexpected: Phyllodes Tumors) I was sharing the story of how I came to face my current situation.  Even as I paint this picture of perseverance, I swear I can still feel the powerful drugs that are meant to hopefully eradicate this cancer flowing through my veins.

I believe I ended that story with a discussion of my initial decision to have surgery for a benign phyllodes tumor.  Remember at this point I was still cancer and worry free (for the most part).  My plan was simple: have a mastectomy on my left breast, keep my nipple, take a few weeks off from work to recuperate and hit the ground running once I was healed.  Easy as microwave pie, right?  Sure enough this is how things started out.  I had high hopes for my nipple-sparing surgery too.  This procedure was to help guarantee that once I underwent my mastectomy, my nipple would be able to survive and I would be as close to whole as possible.  This was important to me for a just a few reasons:

  1. I would never be able to breastfeed with this breast because I would lose that function of my nipple.
  2. My nipple would also never sustain an erotic function.  Meaning it wouldn’t get hard on its own from sexual or erotic desire.  However, there was the possibility that it would do so from manual stimulation.

In all honesty, considering the circumstances, I would still come out on top.  The surgery went as planned and was considered a success.

Time to put on your big girl panties (whatever those may be)

The biggest feat for me came with my mastectomy.  I experienced quite a bit of grief when it came to letting go of my breast.  Despite this, I actually had a much smoother transition than I believed I would.  By the time the due date for my mastectomy rolled around, the tumor had grown so much so that my poor skin had begun to stretch to its limit (at least that’s the way that I saw it).  Imagine filling a water balloon if you will.  The more water you fill it with, the thinner the balloon seems to get.  Now also imagine if you were able to place some small, hard object inside the balloon before you fill it.  It’s probably a lot easier to feel this object inside the balloon with less water inside.  But, as you fill it more and more, it becomes harder to feel for this object.  That’s the best way that I can think to describe this without being much more graphic.

Now, you’re probably wondering how much time elapsed in order for this to happen.  Remember, if you will, that I had my biopsy in July and by that time the tumor was 7x9cm. By the time I had my mastectomy in January, the tumor was 13cm.  Not realizing that this would happen of course at the time, I made the decision to move my mastectomy to January in order to prepare and save financially for the time that I would be out of work.  Working a new job is exciting, isn’t it?  But unfortunately as a new employee I didn’t and wouldn’t qualify for short term disability for another 12 months and I obviously wasn’t going to wait that long.

My mastectomy came and went with success.  I had made the decision to go with a DIEP procedure using my natural tissue to reconstruct my new breast.  This required a considerably longer surgery and recovery time, but it was worth it.  My recovery was no walk in the park, however.  I awoke to a tender, noticeably smaller tummy that took some getting used to.  Surgical drains were inserted that I had to be conscious of with every step and turn.  Emptying the drains regularly was no real problem for me.  Let’s just say that with my clumsy inclination, I had to be extra careful not to yank on them by accident.  This coming from the person who frequently gets her headphones caught on cabinet drawers and often finds them yanked from her head without a moment’s notice.

 

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Notice my accessory for holding my drains in place 🙂

 

 

 

 

 

 

 

 

 

 

 

 

Another adjustment I had to make was related to standing.  For a few weeks I had to remain slightly hunched over, so there was no standing at full attention for me.

Despite having to get acclimated to these things, everything was looking up for me.  I was getting through what could possibly have been the biggest moment of my life, but I had a plan for recovery and I was on a mission.  However, just a few weeks after this moment, I received a call from my breast surgeon that my pathology results had come in.  He explained to me that there were some high grade, rapidly dividing cells that were found in the biopsy he performed during my mastectomy.  Several discussions later, his suggestion was that we go ahead and remove my nipple to be safe, and to also consider chemotherapy and radiation treatment.

From Benign to Malignant…

Peace of cake, right?  No.  Again I swallowed this news with the hopes that whatever I would need to do to “take care of this” would be done, end of story.  I googled the hell out of phyllodes tumors again, especially malignant ones.  Surprise, surprise though.  There is very little information that I could find that answered my questions and brought me some semblance of peace.  So, I did the best I could do to focus on my current recovery and I gathered my small little army to go and meet my first oncologist.  My fiancé  and my mom joined me at my first consultation with my oncologist and radiation therapy doctor.  The appointment with my radiation therapy doctor went quite well.  She was very down to earth, easy to speak to, and just had a personality that made me feel like I wasn’t going through something so devastating.  We discussed what to expect, the type of treatment I would receive, simulations, and her hopes for my recovery.  We made the decision to initiate radiation therapy after I complete my chemo treatment.

My consult with the oncologist who would be structuring my chemotherapy treatment, however, was a walk on the more menacing side of the same park.  I found out that there is little recent empirical evidence that supports chemotherapy for a malignant phyllodes tumor.  With that being said, the research that does exist has seen some success with AIM treatment.  This is a combination of Adriamycin, Ifex, and Mesna.  See slightly more information about this treatment here and here.  The side effects would be profound:

  • Risk of infection
  • Bruising and bleeding
  • Risk of renal toxicity and failure
  • Risk of bladder toxicity
  • Risk of secondary cancer
  • Risk of leukemia
  • Anemia
  • Fatigue
  • Sore mouth
  • Mouth sores
  • Hair loss
  • Skin and nail changes
  • Heart failure
  • Risk of eurologic toxicity including seizure and death
  • Loss in fertility
  • I think you get the point

I wish my options were as abundant as this list of side effects, but alas, I can’t hold my breath.  The options I faced were laid out to me plain and not so simple to choose: essentially go through hell with this aggressive treatment for a rapidly dividing, aggressive tumor, or do nothing.  If I do nothing and the cancer comes back or spreads, it is much more difficult to treat.  With there already being limited evidence to support treatment while it is confined to my breast, there is even fewer evidence to support a treatment plan if it spreads. In a nutshell, I am considered to be at high risk for recurrence.  So with the clear risks and uncertain benefits on the table, I made the difficult decision to proceed with this treatment.

What next?

My next steps were easier to digest.  I met with a cardiologist to undergo an echocardiogram to make sure that my heart was in tip top shape in order to receive this treatment.  Thankfully it was determined to be in perfect condition and I was able to proceed as planned.  Next, I met with a fertility specialist to go over my options.  My fiancé and I didn’t have any plans to procreate anytime in the near future, but being in a same sex relationship allows us some additional options that I think we can live with when the time comes.  Perhaps in a later blog, I will share what those are.  However, my fertility specialist did suggest a drug known as Lupron Depot which is commonly prescribed for women with endometriosis or fibroids, men with prostate cancer, and children with Central Precocious Puberty (CPP).  If you’re interested in knowing more about this drug, please see herehere and here.  For me, the drug will work to suppress the functionality of my ovaries while I undergo chemotherapy in an attempt to protect them.  The hope is that once I finish my chemotherapy and stop the drug, my ovaries will still work and I will be able to one day have children.

After checking these items off my list, I still had one more  requirement to fulfill.  Since there was some cancer found in my pathology, the suggestion was made to go ahead and completely remove my nipple anyway.  This was bittersweet, especially after all I had hoped for and come to terms with.  So, as I was finishing my recovery from my  mastectomy, I underwent another surgery to have my nipple removed.  It was also during this surgery that I would have a port inserted which would be used to administer the chemotherapy drugs and collect blood work during my treatment.  You can find out more about this handy little device here.

Continue reading “To Treat or Not to Treat: Phyllodes Tumor”

Chemo Round 2

Jumping around here a bit…

Getting chemotherapy is exhausting.  Let’s juts face it.  These drugs take a toll on your body unlike any other.  I know you’re probably awaiting the follow up to my original post on the Unexpected Phyllodes Tumor, and I promise that it’s in progress.  In the meantime, however, I just wanted to give a brief update on what’s going on right now.

I’m receiving AIM chemotherapy, which is a mixture of three different drugs.  Doxorubicin (brand named Adriamycin), Mesna, and Ifosfamide.  I will admit that I’m feeling a little foggy right now, so I will provide some links for a better explanation for what these drugs can do herehere, and here.

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First treatment underway…

This is my second round of a six course treatment.  I will be receiving a cycle of 4 days of continuous infusion every 21 days.  After this round, I have four more to go.  So keep ya girl in your thoughts, prayers, gently lit candles, or support me in whatever way that you are moved.

Side effects.

These vary, but are surprisingly consistent.  With all the fluids that are being pumped into me, I do feel pretty puffy.  My hands, legs, ankles and feet are swollen.  My heart rate does tend to drop, quite unnoticeably to me, which is pretty scary.  My baseline heart rate was in the 90s and since my second round of treatment, has dropped to the mid 50s.  This is much better than my first round, when it dropped to the mid 40s.  It’s a scary ordeal to say the least.

One of the most disgusting side effects is the coating that appears on my tongue after my treatment starts.  This makes everything taste horrible, for the most part.  Drinking water is the most difficult if you can imagine.  I’ve developed an aversion to most things that I would otherwise relish to drink or eat. After my first treatment, I had a really scary case of thrush and mouth sores that made it impossible for me to eat or drink anything other than chilled Ensure and vanilla milkshakes.  I even tried baby food, soft eggs, oatmeal, cream of wheat, and various soups.  Some had better rates of success than others.  I ultimately tackled these side effects with oral Nystatin suspension (an anti-fungal) and prescription Diflucan, which helped speed up things tremendously.  As a result of this inability to eat and drink, I lost about 10 extra pounds since my last infusion, and actually had to report to a hospital to get a saline infusion just to keep me from being dehydrated!

Nausea isn’t as bad as you’d think.  They are very proactive in providing anti-nausea medications to help circumvent vomiting and those types of things, so that’s truly a relief.  Let’s just say, however, that the hospital food does have a way of inflating these feelings of nausea.  I must admit that most foods would probably exacerbate these feelings while being pumped with this stuff, so I will retract my previous statement here.

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Stir fry vegetables with shrimp, pasta, and marinara…

How I start my day…

I usually start with a B1 vitamin, and a combination of other drugs to prepare me for my chemo treatment and to prevent me from getting blood clots.

Periodically, I also have to do these neuro-checks, to make sure that my cognitive abilities aren’t becoming too impaired by my treatment.  For the most part, they involve questions related to whether I know where I am, who I am and if I can recall periodic events in my life.  So far, so good.

This is where I leave you,

I apologize that I don’t have much energy to continue this post.  But, I will come back as soon as I’m replenished.  Thank you so much for sharing this journey and as always, your thoughts, comments and questions are always welcome.

Much love and respect.  Fist bumps of love to you all…

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

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).

 

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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. Continue reading “The Unexpected: Phyllodes Tumors”