Phyllodes tumor borderline has anyone else had one too?
Hi ladies,
I am in my early 30s, and would like to hear other people's stories about being diagnosed with a borderline Phyllodes tumor. I found out I had one this past Monday July 10, 2017 after having a mastectomy on my right breast two weeks earlier to remove what was thought to be benign. My borderline Phyllodes tumor was 17cm and weighed 3 pounds. My breast surgeon was able to get very clear wide margins, so I am glad about that and she said there was no further treatment for it because it wasn't cancer. But I am worried that it might come back again even with having the mastectomy. My surgeon also told me that the Pathology report showed that there were changes in the cells that were malignant like features. I am confused and would love to hear other people's experiences with Borderline Phyllodes Tumors. it is just so hard to be stuck in the middle between benign and malignant.
Thank you! Hugs to all,
Sara
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I was diagnosed in 2008 with malignant treated by lumpectomy with the typical second surgery to obtain margins. I had a recurring phyllodes in 2011 that was removed by mastectomy. So far I have been doing well, fingers and toes crossed for continued good reports. I am a member of a phyllodes support group on Facebook that has over a thousand women that have been diagnosed with phyllodes that are all very caring and willing to share their experiences.
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Hello Sara, I'm Teresa. I had a BLPT that I had removed in November 2016. As explained to me borderline has malignant tendencies its just not straight malignant. Sense my removal I have have had several checkups. Just to be clear this is a form of BC. We have a group of PT sister opn Facebook if you want to look us up. Its been very beyond helpful and supportive. I've learned so much from all my sister batteling the same thing u n I are. Yes there is a chance that even with mastectomy pt can occur again. I go for an MRI next month. I have four new lumps. Hoping for the best.I hope you look us up. Its under phyllodes support group. Its been a blessing. Hope you are well my friend. Loves and hugs.
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Hi Sara,
I live not far from you, In Benicia, CA. That was one big tumor you had! My medical care has been at Kaiser Permanente in Vallejo. I first was diagnosed with a benign phyllodes tumor in 2000, which was treated with a lumpectomy with wide margins. In 2012 it came back-- at first I thought it was just scar tissue, but this time it was a borderline phyllodes and I had a mastectomy with reconstruction. It was really a surprise, since I thought I was safe after twelve years! The hospital now has breast health specialists, and it seemed like they were much better informed about phyllodes than in 2000. When my surgeon went over the pathology with me, it was termed "low malignant", but she assures me that a mastectomy should be sufficient treatment, as it was not growing close to the chest wall or skin.
I also highly recommend the Facebook group "Phyllodes Support Group". There is a huge amount of information, studies, and helpful members who will take the time to answer your questions, or point you in the right direction. There is a lot of info there about how to read your pathology report-- if you don't have a copy of yours, be sure to request one. Also, one of the members gets her care at UCSF, and seems to be very happy with them, including plastic surgery. She just posted about it just a few days ago, in case you are looking for a specialist.
Best wishes to you! Hope to see you on Facebook.
Mary
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Thanks you all for sharing your personal stories with me and your phyllodes borderline tumor. I feel so much better knowing there are so many other women out there that have the same tumor. I also want to thank you for the information about the phyllodes tumor facebook support group can anyone attach a link to it? Thanks I look forwarding to meeting more lades like me.
Hugs and Love,
Sara
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Hi Mary,
this is Sara! I wanted to thank you for sharing your personal story with me about your borderline phyllodes tumor. Reading your story helped me a lot. Glad to know that we are Bay Area neighbors. If you don't mind me asking how did your reconstruction surgery go and what kind did you have? Does the breast feel some what natural? What was the recovery time like for you.
What do you like to do for fun any interesting hobbies? I love to paint and do anything art related. I plan on making thank you cards to give to all the doctors and nurses that helped me through my mastectomy. I can't thank them enough for saving my life.
I hope you have a good day and that it is not to hot up in the north bay. Thank you again for sharing your story with me. Your experience helps make this new journey I am taking a lot less scary.
Hugs and Love,
Sara0 -
Hi there. I'm Amanda. I'm 34 and I was diagnosed with benign Phyllodes in 2/2015 with reoccurrence in 12/2016 and bilateral mastectomy in 3/17.
My original tumor was 5cm on mammo, was removed in March and was 12cm. Although everything said benign, my GP and surgeon both felt I was right at the line of being borderline. Having a borderline pathology would show malignant like features which increases chances of reoccurrence. However the mastectomy dramatically reduces the chance of reoccurrence.
Being called cancer is something no two doctors seem to agree on. Given the aggressive ways of Phyllodes I call all of them cancer as does my surgeon, however most say just BLPT & MPT are classified as cancerous.
I would get a second opinion and follow up with regular mammograms on the remaining breast and ask a breast specialist about MRIs for the right breast.
There is a big chance of it not reoccurring, but I know what it's like to worry everyday and having a set treatment, follow up plan lessens that worry tremendously.
I too am a part of the "Phyllodes Support Group" on FB and there are so many active members you might find it beneficial to reach out there for other to share their follow up plans. We really learn a lot and share stories with recommendations from doctors/surgeons all over the world.
Glad you got wide margins. How is your recovery going? I just had my exchange surgery 15 days ago and healing quite well. 😁
Good luck!
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Hi Amanda,
Thank you so much for sharing your BLPT story with me. It is nice to meet other ladies in their 30s who are going though the same kind of tumor issues. So sorry you had to go through having a Phyllodes tumor reoccurrence it is bad enough to have it once but twice how scary that must of been for you on top of having a bilateral mastectomy. How are you handling everything with your recovery and with life in general. How have you and your children been able to work through all of these difficult times in life?
Thanks for your clarification of what a BLPT is I think of it has cancer too. I am also getting confusing messages from my breast surgeon and Medical oncologist on what to call it. My BS says that Phyllodes Tumors are a rear cancer, but that mine being Borderline PT is not cancer. When I saw my MO to talk about taking Tamoxifen, because I have ADH too, she defined my BLPT as being cancer. I don't know who to believe. I have an appointment with my MO later this month, so I will ask her again for clerification Whenever I go to the doctor now I have a long list of questions and I always bring my MP3 player to record all of our conversations, and I also get a written summary of our visit. This way I can remember what was said and know what the plan is for the next time I see them. I have great respect and trust for my BS, MO and PCP and I know they have my best interests at heart that has helped me so much knowing they are here to support and guide me through this new world I have been dropped into.
Recovery is going better then it was earlier this summer when I had more emotional difficulties and lots of waterworks at night. I have been going to local Breast Cancer Support groups twice a month and that has helped. Coming to this site has been my life line for support. I have learned some much from the everyone here. I feel less alone in this big scary world of cancer. I will join the Phyllodes support group on FB too. What have you found most helpful to you about the FB PT support group?
I have asked my PCP to refer me for individual counseling that way i can talk to someone and not have them tell me how I should feel about all of this. I have wonderful family and friends for support. My parents have been there for me 100% but they often tell me things like don't worry and it could have been a lot worse. I don't want to hear all of that sometimes I just want to talk about how I feel and not have anyone try and make me feel better. Physcially things are going well there have been no infections or other problems with the healing process. My BS said I will see her again in November and at that time she will fix some skin from the incision area that needs some cosmetic touch ups. She also told me I can have reconstructive surgery in 6 months when i have healed up more. The plan is I see her (BS) once every 3 months then it will be every 6 months, and I can start getting MRI's within 6 months to a year from now. That makes me feel a little better knowing that I will checked on regularly to make sure if something else comes up it will be cough early. One thing that has helped me with all of this BC is going back to work I teach preschool children, and my first day back was Sep 1st. Even though I only spent half a day with them they were some of the best medicine I could have ever asked for. Their hugs have helped me deal with my nerve pain and have given me all the extra love I need.
Thank you for listening to my long story. How are you doing with your recovery?
Wishing you all the best and Good Luck too.
Hugs,
Sara
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I have same thing but I'm not sure about CT scan for every 6 monts,not sure what to do
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borderline is low grade malignant tumor as I understood am I wrong
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Hi Ryan,
Thank you for the info. I learned it was a low-grade malignant tumor too. I found it from rare cancer website.
How are you doing?
Did your doctors tell you what your follow-up plan would be?
Wishing you all the best.
Hugs,
Sara
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