My wife was diagnosed with a Malignant Phyllodes tumor and went thru a mastectomy since it was large around 15 cm to get clear margins which was achieved as per pathology post surgery. She also was recommended radiation. She also opted for reconstruction and during the expansion process we noticed a bump that wont heal and on a follow up surgery (3 months later her mastectomy) the pathology came up as that portion having malignant PT. They want us to do another surgery but at this stage we are not sure how much this is sustainable if this recurs as we have already done mastectomy. We really wanted some expert opinion from Mayo Doctors who do research on this and also similar experiences from other patitents.
Waiting is the worst! I hope you can find some peace in knowing it is benign. This is when I typically take on a challenging knitting project. What are some ways you can keep busy and distract yourself?
Thank you, it is a very weird thing. Being it is benign I should be thinking ok done no big deal, but I haven't gotten that finality it's almost like yes it's benign TODAY but....... or something I don't know it's just not a ENDED statement yet. My husband is a "it doesn't pay to worry" type of person so I can't vent to him, I will NOT tell my kids until I have too and my mom is my best friend but still my MOM and obviously older than me and I don't want to stress her out so when I do talk to her I'm very positive and upbeat and etc. BUT I do have to do taxes this weekend (not fun but very distracting) and Tuesday morning is just around the corner so I hope to have some answers Tuesday MID-morning!
Thank you for your support!
Nothing YET, there is a panel of oncologists, radiologists and whoever else which includes my surgeon. They meet regularly on Tuesdays, next Tuesday 1/25 they are going to discuss my case and let me know after that what more needs to be done or not or whatever! Nervously & anxiously awaiting news!
Waiting is the worst! I hope you can find some peace in knowing it is benign. This is when I typically take on a challenging knitting project. What are some ways you can keep busy and distract yourself?
Hi Sara, it sounds like they were able to remove the non-cancerous tumour with a clear margin. That’s good. Phyllodes tumors aren’t usually cancerous. But whether cancerous or not, your doctor will likely work out a follow-up schedule with you to monitor to check for possible regrowth.
Did your doctor talk to you about follow up with regular breast exams, mammograms, ultrasounds, and possibly MRIs?
Nothing YET, there is a panel of oncologists, radiologists and whoever else which includes my surgeon. They meet regularly on Tuesdays, next Tuesday 1/25 they are going to discuss my case and let me know after that what more needs to be done or not or whatever! Nervously & anxiously awaiting news!
I had a lumpectomy 1/14/2022, turns out to be phyllodes tumor, they say it is benign but now of all I'm reading I'm a bit scared, were they too quick to say benign? The surgeon is going to discuss with the oncologist and radiologist to see if they want to do anything further, so far they did a lumpectomy with more than 1cm of healthy tissue also removed. I realize this is rare and am trying to not jump to any conclusions, if it's benign, it's benign, right?
Hi Sara, it sounds like they were able to remove the non-cancerous tumour with a clear margin. That’s good. Phyllodes tumors aren’t usually cancerous. But whether cancerous or not, your doctor will likely work out a follow-up schedule with you to monitor to check for possible regrowth.
Did your doctor talk to you about follow up with regular breast exams, mammograms, ultrasounds, and possibly MRIs?
I had a lumpectomy 1/14/2022, turns out to be phyllodes tumor, they say it is benign but now of all I'm reading I'm a bit scared, were they too quick to say benign? The surgeon is going to discuss with the oncologist and radiologist to see if they want to do anything further, so far they did a lumpectomy with more than 1cm of healthy tissue also removed. I realize this is rare and am trying to not jump to any conclusions, if it's benign, it's benign, right?
Hi Cheddar (fun Username), I add my welcome and invite @mariewurch@johnsoncs1@knutter1@marvinjjc to rejoin this discussion as they have experience with malignant phyllodes.
Hi cheddar! So sorry you are going thru this again. We all are with you. It is so hard dealing with PT. I had MPT in left breast and had mastectomy in March 2021. So far no recurrence in right but at times I wonder if I should just get it taken off as well. Had 3 mont check up in June, go back in Dec. It is a frustrating and difficult beast this Phyllodes . Attaching a picture of me and my husband.
I had a left mastectomy 9/2020 due to a malignant phyllodes with sarcomatous features. 5 weeks radiation. I currently have a malignant phyllodes in my right breast and scheduled for mastectomy 9/2021. Anyone else out there with similar experiences?
Hi Cheddar (fun Username), I add my welcome and invite @mariewurch@johnsoncs1@knutter1@marvinjjc to rejoin this discussion as they have experience with malignant phyllodes.
At this point I am not scheduled for any other treatments. I have a few scans scheduled prior to my mastectomy next week. If I do not have Mets then I will have the mastectomy. Surgical pathology will determine the course of action after surgery
Well, I am just going to cross my fingers that this will be the end of it! This is more than enough. I still hope some others will join the conversation.
@cheddar i am hoping some of the other folks who have or have had this rare type of breast cancer will chime in. From everything I can find out about this, what we know about it, really couldn’t fill a thimble. They know what it is, but not why. Are you scheduled for any other treatments?
At this point I am not scheduled for any other treatments. I have a few scans scheduled prior to my mastectomy next week. If I do not have Mets then I will have the mastectomy. Surgical pathology will determine the course of action after surgery
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My wife was diagnosed with a Malignant Phyllodes tumor and went thru a mastectomy since it was large around 15 cm to get clear margins which was achieved as per pathology post surgery. She also was recommended radiation. She also opted for reconstruction and during the expansion process we noticed a bump that wont heal and on a follow up surgery (3 months later her mastectomy) the pathology came up as that portion having malignant PT. They want us to do another surgery but at this stage we are not sure how much this is sustainable if this recurs as we have already done mastectomy. We really wanted some expert opinion from Mayo Doctors who do research on this and also similar experiences from other patitents.
Thank you, it is a very weird thing. Being it is benign I should be thinking ok done no big deal, but I haven't gotten that finality it's almost like yes it's benign TODAY but....... or something I don't know it's just not a ENDED statement yet. My husband is a "it doesn't pay to worry" type of person so I can't vent to him, I will NOT tell my kids until I have too and my mom is my best friend but still my MOM and obviously older than me and I don't want to stress her out so when I do talk to her I'm very positive and upbeat and etc. BUT I do have to do taxes this weekend (not fun but very distracting) and Tuesday morning is just around the corner so I hope to have some answers Tuesday MID-morning!
Thank you for your support!
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2 ReactionsWaiting is the worst! I hope you can find some peace in knowing it is benign. This is when I typically take on a challenging knitting project. What are some ways you can keep busy and distract yourself?
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Like -
Helpful -
Hug
2 ReactionsNothing YET, there is a panel of oncologists, radiologists and whoever else which includes my surgeon. They meet regularly on Tuesdays, next Tuesday 1/25 they are going to discuss my case and let me know after that what more needs to be done or not or whatever! Nervously & anxiously awaiting news!
-
Like -
Helpful -
Hug
1 ReactionHi Sara, it sounds like they were able to remove the non-cancerous tumour with a clear margin. That’s good. Phyllodes tumors aren’t usually cancerous. But whether cancerous or not, your doctor will likely work out a follow-up schedule with you to monitor to check for possible regrowth.
Did your doctor talk to you about follow up with regular breast exams, mammograms, ultrasounds, and possibly MRIs?
-
Like -
Helpful -
Hug
1 ReactionI had a lumpectomy 1/14/2022, turns out to be phyllodes tumor, they say it is benign but now of all I'm reading I'm a bit scared, were they too quick to say benign? The surgeon is going to discuss with the oncologist and radiologist to see if they want to do anything further, so far they did a lumpectomy with more than 1cm of healthy tissue also removed. I realize this is rare and am trying to not jump to any conclusions, if it's benign, it's benign, right?
-
Like -
Helpful -
Hug
1 ReactionHi cheddar! So sorry you are going thru this again. We all are with you. It is so hard dealing with PT. I had MPT in left breast and had mastectomy in March 2021. So far no recurrence in right but at times I wonder if I should just get it taken off as well. Had 3 mont check up in June, go back in Dec. It is a frustrating and difficult beast this Phyllodes . Attaching a picture of me and my husband.
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Helpful -
Hug
2 ReactionsHi Cheddar (fun Username), I add my welcome and invite @mariewurch @johnsoncs1 @knutter1 @marvinjjc to rejoin this discussion as they have experience with malignant phyllodes.
I wish you the best with your upcoming surgery.
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1 ReactionWell, I am just going to cross my fingers that this will be the end of it! This is more than enough. I still hope some others will join the conversation.
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1 ReactionAt this point I am not scheduled for any other treatments. I have a few scans scheduled prior to my mastectomy next week. If I do not have Mets then I will have the mastectomy. Surgical pathology will determine the course of action after surgery
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1 Reaction