I am new here, first post. I am here looking for support and community. I have been on a truly emotional rollercoaster for months and could really use a friend(s) who understand.
I had a benign phyllodes tumor diagnosis in 2011. My surgeon at the time was not a specialized breast surgeon, he was a general surgeon. I was 22, and didn't have a clue in the world what I was doing or the significance of my diagnosis. I trusted my doctors implicitly. I had the tumor removed via lumpectomy in January of 2011, and was told at my post-op visit that they needed to go back in and get more tissue. The second surgery occurred in February of 2011. I don't recall what my surgeon told me at that second post-op visit, but all seemed to be taken care of at the time. I went on my merry way. I got married and had two kids within the years after. Life was great.
Fast forward to 2018. The 'lump' I had felt for a while, where my previous phyllodes was removed, was deemed 'scar tissue', or a fibroadenoma after serial ultrasounds over the years. 'Come back in 2 years', they told me. The lump grew a significant amount, so I decided to have it checked much sooner. That led to a needle biopsy with another diagnosis of benign phyllodes tumor in October of 2018. I am a Registered Nurse now. I sought out the care of a highly qualified breast surgeon who is the co-director of the breast/breast cancer center at our women's hospital that is known for dealing with women's issues and cancer.
At her advice, I had a partial mastectomy in February of 2019. My margins weren't clear on my pathology, and my tumor was also upgraded to borderline (which is frustrating, based on the results of my needle biopsy). My surgeon said I definitely needed more surgery, and I at first opted for another wide local excision, I wanted to spare as much breast as I could -- until I did enough reading on borderline phyllodes tumors, and hysterically crying in the shower, to know just how serious these tumors are. I opted for a mastectomy because this wasn't something I wanted to mess around with anymore, I have two kids (ages 5 and almost 3) and I wanted to do the best possible thing for ME that I could. My mastectomy was performed on April 24, 2019. My pathology came back clean, no residual tumor. All looked well. I felt NORMAL for the first time in months. I felt like I could move on and close this door.
But -- I am still very much struggling. I have good days, and bad days. Some days I feel hopeful, the next day I have convinced myself that it's just a matter of time before something more scary happens and I can't stop my anxiety or tears. This is no way to live.
Reading through so many other women's posts who are young, who are mother's, who have also dealt with this has made me feel less alone, less isolated. I had a lot of self-pity, and 'why me?' thoughts. I have an amazing support system, but am debating in seeking out some sort of therapy. Life is too short to dwell on 'what if's', but I am terrified still and can't help it. It's hard to not obsesses over. My husband and my mom are here for me 24/7, but I know they are more worried about my mental health at this point.
My breast surgeon told me more than once that I do not need radiation. At my insistence of having all of my options explored, my surgeon has set me up with a consult with a radiation oncologist to see what they have to say/recommend. I see him next week. If nothing else, I will hopefully walk away with more peace of mind. My surgeon also hasn't recommended follow-up monitoring like CT scans or MRI's to monitor my chest wall, but I am going to be absolutely insistent on that, too when I see her back in the office. I even asked about genetic testing, but she said I didn't need it. I'm still debating that one. Has anyone had it done and were satisfied with their results? Has anyone caught a reoccurrence of a phyllodes after mastectomy via CT or MRI? I would love to hear your experience.
I am looking for hope. Hope from women who have been through hell and back and have come to see the other side of it. The reality of a re-occurrence is crippling to me. I am trying so hard to enjoy my life, and my children, and live in the moment, but the fear of another phyllodes, and possibly a malignant one, looming ahead of me is almost too much to bear. How did you get over this fear and anxiety? How did you stop yourself from thinking the worst? I DO feel so fortunate to have been given positive news after my mastectomy, but I know that doesn't give me a guarantee and I keep holding on to this fear. I pray the further along I get in my recovery, the better and more positive I will feel. It's been almost a month at this point.
Thank you for the time in reading this. I feel a bit better writing this out for people in the trenches with me. Any advice, insight, quote or story would be hugely appreciated. I wish you all the best in your journey with this.
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