To Treat or Not to Treat: Phyllodes Tumor

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


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.


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.

So, this is my story now.  Right now I am actively receiving chemotherapy treatment as we speak.  The plan is for me to enter the hospital for continuous infusion for four days, every 21 days.  I’ve completed two treatments so far, and I have 4 more to go.  Afterward, radiation therapy is my next stop on this train ride.  My first bout with chemotherapy was scary.  I thought I knew what to expect, but I didn’t really.  My hemoglobin levels were low, so I had to have a blood transfusion before I could even start treatment.  What was expected to be a five day hospital stay was extended to seven days.   During my first treatment my heart rate declined to the mid-40s and so my therapy was actually halted while I was hooked up to heart monitors and my progress was overlooked by top cardiologists.  I had to make a decision.  Continue this treatment, which is clearly already affecting my heart, or stop it altogether and submit to ongoing surveillance of my condition with the hopes that nothing recurs.  Decisions, decisions.  I chose to try again and this time, I can happily say that my heart rate miraculously only dipped into the mid 70s for the duration of my treatment.

A few days after being released from my first treatment, I made another decision.  This time it was to cut my hair.  I figured that since chemo would cause me to lose my hair, it would happen more or less on my own terms.  Check out the before and after that I so carefully chose to share with you:

As far as side effects go, fatigue is the most persistent.  In addition to that, thrush and mouth sores seem to be my biggest annoyances.  My mouth problems got so bad that I had to incorporate Ensure into my diet, along with baby food, cream of wheat, and other soft foods like eggs, oatmeal, and ground beef.  I think I despised cheeseburger mac before all this, but as this was one of the first foods that I was able to actually chew and swallow successfully after my misery, I can’t get enough of it now!   I’ve never been one to have my doctor on speed dial, but this experience has changed that.  I try my best to be proactive and contact my doctor at the first sign of discomfort or pain.  Nausea surprisingly doesn’t bother me as much as I thought it would, but at the first tingling sensation of would be nausea, I have my reinforcements ready to go.

I hope that my transparency helps those who, like me, may be facing a scary diagnosis.  I hope that this especially helps to provide insight for anyone dealing with a phyllodes tumor.  I had the hardest time coming to grips with this diagnosis and I relied heavily on research and other people’s experiences to fill in the gaps for me.  This is definitely a mouthful, but certainly something that I hope will inspire others.

Until my next storm cloud…fist bumps of love.

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.

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