Phyllodes to Mastectomy.

kaitlin21

Hi all, 

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. 

xx 

Kait

Moderators

Hi Kait, and welcome to Breastcancer.org,

We're so very sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our Community and incredible source of information, advice, and support -- we're all here for you!

While we don't have any advice specific to phyllodes, we CAN tell you that many others here experience exactly what you're feeling -- a constant fear hanging over their head for a future occurrence. You're not alone at all and we know others will be by shortly to share what helps them get through the fear to live a happy, healthy life!

We look forward to seeing you around the boards, and helping you to move on!

--The Mods

sm627

Hi Kait,

I wanted to give you a big hug and send you all my LOVE! You have been through so much over the last few years. I understand how you feel it is so scary and the fear of phyllodes coming back it the worst feeling in the world. I too had a borderline phyllodes tumor in 2017 and had a mastectomy of my right breast. My breast surgeon said that I did not need radiation because she was able to get clear margins. I got genetic testing done because I have a strong family history of breast and ovarian cancer. The genetic test I got was a full panel of 34 different genetic mutations they all came back negative BRCA 1 and 2. When I met with a genetic counselor she said there is a genetic mutation called Tp53 that puts you at a higher risk of developing phyllodes tumors thankfully I also tested negative for that mutation as well. I would strongly consider getting genetic testing done especially if you have a family history. It gave me peace of mind after I had my test done.

My breast surgeon told me that phyllodes are a kind of breast cancer it just does not spread. She said that anyone that has have breast cancer should be given the option of getting genetic testing.

My follow up plan as for being monitored is is get mammograms and MRI annually due to my high risk of getting more breast cancer due to family history. The MRI I got last year showed no sign of any phyllodes coming back. I was so happy!

Do push to get an MRI or CT at least once a year to give yourself peace of mind that the Phyllodes is gone for good. Since my MRI I haven't thought about the phyllodes coming back.

I still have good days and hard ones to were i just want to cry and let all my feeling out. What has helped me is to express all the feelings I have the sad and angry ones too. I try to do things I enjoy and spend time with friends and family to take my mind off my breast cancer. I don't have kids of my own but I teach preschool children so spending time just playing with them makes me feel "normal" and brings me a lot of joy. The fun time with the kids makes up for the other times when they drive me crazy! LOL Overall I take it one day at a time and remember that I am a work in progress.

If you have any other questions or need some extra support I am here for you.

Hugs and Love,

Sara

kaitlin21

Sara,

I could just cry waking up and reading your message. A good cry. Thank you SO much for sharing your story with me. It’s so easy to focus on the negative aspects versus believing you can walk away from this and be okay. I am SO happy that you’re genetic testing came back negative, as well as your yearly MRI’s!! What a major blessing. I am still torn on doing the testing. As of right now, I don’t think my mental health could handle knowing, haha!

I don’t want want to live in fear, so I pray fiercely everyday that I, too, will get past this and not let it consume me in the way it does now. Life HAS to be lived. Thank you for reading and responding, for making me feel normal, and you’re right.. crying is sometimes the best way to get it out of your system. Thank you for your love and positivity. It means so much!

xoxo

Kait

sm627

Hi Kait,

Wanted to check in with you and see how you are doing and feeling? I know some days you can feel okay and then the next you are back on the emotional roller coaster ride. When is your appt with the radiation doc? I hope they can give you some peace of mind. Did your breast surgeon tell you what your follow up plan would be? Things can be so difficult since Phyllodes are so rare some docs don't know much about them, and the patients end up becoming more knowledgeable. How has your recovery been from your Mastectomy.

On a lighter note what do you like to do for fun? I like to paint and go out for walks with friends and I enjoy trying new things.

Wishing you well Hugs,

Sara

penny22

Hi Kait,

I'm a 36 year old woman currently undergoing radiation therapy for a borderline phyllodes tumor that was removed from my left breast via wide local excision in March. From what I understand, radiation therapy is "controversial" in the community, but my breast surgeon told me (and gave me some literature at my request) that there is research that supports the idea that radiation therapy can significantly reduce the risk of recurrence. The decision was up to me, ultimately (though I suppose everything is). Like you, I felt it was better to do what was best for me, and I felt I could handle it. So, I'm glad I'm doing it. It hasn't been that bad, honestly. I'm in my 3rd week and feeling some tiredness and mild sunburn-effect on my breast, but it's not been debilitating in any way. Although, I don't have two little ones to chase around like you! I'll return to my surgeon 4 months after my radiation is complete for another sonogram.

I also had a genetic test done at my doctor's suggestion. Everything came back negative for me, but I'm really glad I did it.

I absolutely know how you feel, especially since phyllodes tumor is so rare. I also go through waves of intense anger and panic and terror. It really sucks that there isn't always a solid game plan for these tumors and sucks even more that you feel alone because maybe 1% of breast tumors are this "brand".

Something that's helped me tremendously has been my fabulous therapist, whom I've been seeing for about 5 years now. If you have the means I highly suggest finding someone (if you don't have one already) who can be a supportive neutral ground for your rage and fear and sadness, and help you sort through the emotional tidal wave. I realize I don't know you at all but I don't think you are "obsessing." You are going through something that's unbelievably hard. The last thing you need to do is judge yourself for your feelings.

Best of luck to you!

Moderators

Penny, we wanted to send a warm welcome to Breastcancer.org, and thank you for participating in the Community with your personal experience and great advice! Please, let us know if you need any help while you navigate the main site or the boards. We look forward to hearing more from you soon!

The Mods