Phylloides Tumors: My Journey
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Phylloides Tumors: My Journey

breast lumps are experienced by nearly every woman at least once in her life

It Started With a Lump

I was just 29 when I unexpectedly felt a lump on my left breast while showering.  Thinking it was just a fluke, I tried not to panic, tried not to think of my grandmother, my good friend, and many others I knew who either lost their lives to or are in remission from breast cancer.  The first thing I did when I got out of the shower was do a thorough breast self-exam (BSE), then I got online to read up on how to make sense of difference in breast tissue and the defined lump.  Surely there was some low-key explanation.

The next day, I called my gynecologist's office and mentioned my discovery, somewhat embarrassed of being too cautious for nothing.  I don't know if I was more worried or relieved when the receptionist was very serious in trying to have me come in for an appointment that same week.  I hesitated and made the appointment for a couple of weeks down the road, so that if it cleared before then I could just cancel it.  Just 3 months earlier I had been in his office for an annual exam - complete with blood work and a breast exam.  I had been feeling somewhat tired and actually thought I had a hormonal imbalance, and in fact I had even asked my doctor what my odds were of my having cancer.  He assured me that my labs were just fine and all was good.  The only thing he said at the end of the exam was it appeared I suddenly had lumpy breasts, and to be especially thorough in my BSEs.  I had no idea I would be put to the test so soon!

The Exam

The only thing I knew about what to expect for seeing my doctor after finding the lump was that I would have to give him the particulars on when I first felt it, if I thought it had grown, if I experienced other changes, and lastly to discuss any family history of breast issues.  My gynecologist is a smart man, known as a very good obstetrician (he oversaw the latter part of my pregnancy and delivered my daughter), so I felt safe in his assessment of the situation.  What he said was that the lump moved, which made it seem like it was just a harmless cyst.  He recommended I get an ultrasound to see how deep it was so it could be drained, but it wasn't something I had to do right away - I could do it at my convenience.  End of story.  That made me feel a lot better, but I still asked him what he thought about the odds of it being something else.  He insisted I was much too young to worry about breast cancer, but at the same time, he couldn't rule anything out because you never know.

Breast Changes

Now, breast tissue is very influenced by hormones throughout a woman's life - this is seen through obvious physical changes and sensations felt while ovulating, menstruating, in pregnancy, and after menopause.  Lumps can come and go with or without accompanying pains.  Most women will develop at least one lump in their lifetime.

My mother-in-law was someone I knew who would be able to help me understand this, as she herself has had hormonally-induced fibroid tumors that grew in both breasts and her uterus, making her sterile until they were removed and she then conceived my husband.  I spoke with her about this the following week at Thanksgiving, and she let me know that lumps were no big deal, they were easy to remove, and common.  With all of the assurances I had, you would think I was just plain paranoid for still feeling a nagging sense of foreboding.  This held on until I had my ultrasound--finally scheduled for December 9th.

Foreshadowing Dreams

Just days before my ultrasound, I had a strange dream.  At one point in the sequence of events of this dream, I received a letter from my great-aunt who was letting me know of my grandmother's birthday, with a present attached - but it was actually for me.  The present was a gold necklace with a circular medallion adorned with emeralds around it.  Strangely enough, those were my birthstones, and the necklace was for me, not my grandmother, and I felt her saying it was for me from her - as a way to let me know I would be ok.  I awoke in shock, for my grandmother had died over a decade earlier from breast cancer, and it had only dawned on me in my dream that my ultrasound was scheduled for what would have been her birthday!  Up to that moment, it hadn't even been a fleeting thought in my mind, which was definitely odd because of how close my family is about remembering things like that.  But that dream really struck me as eerie and geared me up for the rest of my journey.

Ultrasounds: the Good and the Bad

I was a nervous wreck for my ultrasound, but I took it in stride and went to one of the leading breast-health centers in my area.  Going in to it, I knew to remove my deodorant, relax, and not read too much into anything until the radiologist tech was finished and I could talk with the radiologist.  I didn't expect it to be a quick process, but he came in a few minutes after I was done.  That in itself worried me.  And then he said "you have a tumor".  I thought for a second I was imagining those words.  He followed it up with "It was a solid mass and seems benign.  But you need to have a biopsy to make sure."

I was also told that it was most likely hormonally-linked and was a fibroadenoma.  But only a consultation with a breast surgeon and either a core biopsy (also known as a needle biopsy) or complete removal of the tumor (excision) would confirm this.  If I were to leave it in, I would be required to have a small "marker" left in place so that future ultrasounds or eventually mammograms would reflect that I had already been seen for the occurrence.  If I were to do the complete removal, more than just an office visit would be involved, but it would bring more peace of mind to be finished with it.  I was advised to just get a needle biopsy.  My lump was gradually increasing in size, and though it was only maybe about the size of a grape, I still felt it.  Surgery somehow seemed scarier, but the more I thought about it, the more it made sense to opt for it.

Meeting With the Breast Surgeon

It is extremely important to have a good doctor.  I cannot stress this enough!  After being told one thing by my gynecologist and something else by the radiologist, I was very interested to hear what the breast surgeon had to say.  I certainly was skeptical, considering I started this whole ordeal thinking it was something simple, only to have it become more than I bargained for.  I laid out all my concerns with the breast surgeon, listening to her discuss her thoughts on what she thought this was.  She was inclined to agree with the radiologist, but wanted to really wait and see what the biopsy would prove.  I said I wanted the surgery, so we planned for it to be the next week.  It would be an outpatient surgery, lasting less than an hour.  She would make a small incision, remove the tumor, give me a few stitches, and send me home shortly thereafter.

Everything for my biopsy went smoothly.  My surgeon even informed my husband of how round the tumor was and how easily to came out - sure signs it was most likely harmless - but of course we would know either way within a week once the lab results were in.  But I received a call from the surgeon just a few days later to say that it was NOT a fibroadenoma, but a phylloides tumor.  Though I did not have cancer, and the tumor was also not cancerous, it was considered borderline (pre-cancerous), and it was necessary because of it being phylloides and highly likely to turn into more tumors or become cancerous, that I would need a second biopsy as soon as possible. 

Phylloides Tumors

Phylloides tumors can indeed cause breast cancer, but not like what you would think.  With this type of tumor, if it metastasizes and becomes cancer, it is a sarcoma - a blood cancer - with little option for treatment.  This immediately outraged me, thinking that the doctor didn't do a thorough job.  But, as they explained to me, removal of fibroadenomas and other non-cancerous masses is one thing, and phylloides tumors are another.  Unfortunately, the tumors all resemble each other until proven differently through pathology results, and so a second biopsy always takes place with phylloides tumors in order to go back in and clean out the surrounding tissue to minimize further growths.

My second biopsy also went off without a hitch, and when I received my results a week later, I was able to breathe a sigh of relief in knowing that I was completely free from my problem.  But because of what I had, it required that I schedule my first mammogram in six months, in addition to another ultrasound, and again in another six months for the next year.  I am told that it is rare but not unusual to have more PTs, so I am always on guard.  As I approach my first mammogram this week, I have a few worries of possible lumps that I am hoping are just scar tissue.  I suppose I will always be wary.  I know I will never be uninformed again!  I have made a conscious effort to educate as many women as I can about this strange and highly unknown form of tumor and cancer, because it is the right thing to do.  All women should be mindful of their bodies, feel comfortable about going to a doctor who is knowledgeable of all possible breast situations (since a specialist might be the only one to pinpoint an abnormality), and to be fully aware of all the information that is out there on breast disorders and diseases.  Take part in support groups available online.  I did, and it gave me so much peace of mind to be in touch with women who understood what I was going through, and who helped me know what to expect down the road.

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Comments (5)

Great article. Thank God for freedom from this.

Just wanted to give an update, as my article was originally written August of 2009. My mammogram was clear and it was not necessary for me to have the ultrasound. I can breathe a sigh of relief until February 2010 for my next mammogram!

Excellent

Another update to my update: as of today (12/22/11) I now have another tumor that is possibly another PT or could be a fibroadenoma. Stay tuned for a new factoid as I go through this next new phase...

It was another Phylloides! You can read more about my most recent journey here: http://cancer-therapy.factoidz.com/when-phylloides-tumors-return/

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