Here is a link to an organization that nationally pairs people with a certain kind of cancer with each other based on that and other parameters (like age, gender, etc) so they can support each other. https://cancerhopenetwork.org/
My daughter has not used it, but because the database of people is so large, it may have a good chance of finding someone like yourself. It is telephone - based.
I had my 1st phyllodes tumor removed in 1999 or 2000 in right breast and benign. went for mamo's and ultrasounds every year after that for at least 3-4 years and than just mammograms. I found my second benign phyllodes tumor on left side arm pit area and had removed in 2011. I have been going for my mammograms since the first tumor showed up. I am 61 now. In March had double mastectomy for DCIS with reconstructive surgery. Just had my 6 month follow up mammogram and right lymph node is now suspicious and have to have biopsy. They did removes 2 lymph nodes on both sides during mastectomy that were negative and the genetic testing came back negative as well .I don't know what to think now , have to wait almost 3 weeks for biopsy and am concerned again. The Dr's are positive but it's all so hard to tame the anxiety. Praying the dr's are right to be positive. Best of health to all
I had my 1st phyllodes tumor removed in 1999 or 2000 in right breast and benign. went for mamo's and ultrasounds every year after that for at least 3-4 years and than just mammograms. I found my second benign phyllodes tumor on left side arm pit area and had removed in 2011. I have been going for my mammograms since the first tumor showed up. I am 61 now. In March had double mastectomy for DCIS with reconstructive surgery. Just had my 6 month follow up mammogram and right lymph node is now suspicious and have to have biopsy. They did removes 2 lymph nodes on both sides during mastectomy that were negative and the genetic testing came back negative as well .I don't know what to think now , have to wait almost 3 weeks for biopsy and am concerned again. The Dr's are positive but it's all so hard to tame the anxiety. Praying the dr's are right to be positive. Best of health to all
Asking about recurrence. My phyllodes occurred in 2003, 42 years old, my story is similar to others, was misdiagnosed as a fibroadenoma, grew quickly. Had a core biopsy, in the week after the biopsy, it got really got big and sore (I attributed it to the core biopsy) and over night it seemingly "deflated," back to the size before the core biopsy. Biopsy came back that it was a fibroadenoma,, with similarities to a Phyllodes, surgeon didn't like it was growing so recommended removing it. When he did, it didn't pop out like he thought it would...turned out the tissue was necrosis...seemingly died off. Sent to oncologist due incidental LCIS. She looked at core biopsy results and said either it is a Phyllodes or it isn't (couldn't get a pathology reading on the actual tumor tissue since it had died off), need a better reading of the biopsy, sent it off to leading breast pathologist in NYC, came back as most likely a benign Phyllodes (best read since only small sample since the tumor had died off). Had another surgery to do a wide area excision to make sure all of the tumor was gone, since margins weren't clear from previous surgery. Wound up pretty lopsided, was able to have a breast reduction on other breast and tissue moved around in the Phyllodes breast to create rounded breast. Since then, have had 6 months monitoring, alternating between Mammograms (not much can be seen due to dense breasts) and MRIs (20 years of this!). Last year had an area in the phyllodes tumor bed look suspicious. Had MRI guided biopsy, came back as Sclerosing adenosis with stromal sclerosis - no action needed. Just had my year follow up MRI, and again same area came back as suspicious, and it had grown and looking more mass like (but subtle changes). I am scheduled for another MRI-guided biopsy. Way back in 2003, not much was available online about Phyllodes, what was there was very scary, happy to see that there is more known now. Luckily I had found a NJ breast surgeon for the second surgery who had seen 12 cases over her career and was able to calm me when only one of 12 had a bad outcome. 20 years later (63 years old now) is a long time from what I have been reading for this to come back...but am concerned that I have read in this thread that someone was initially diagnosed with sclerosing adenosis for their phyllodes (that is what they are saying what they have found for me in the tumor bed last year- sclerosing adenosis). I had my yearly MRI last month, area had grown slightly and looking more mass like, so going for another MRI guided biopsy, with focus on taking sample from part of the mass that grew. I thought I was beyond the worry window with 20 years have gone by...anyone had a recurrence that many years later? Should I be insisting on a surgical biopsy at this point to get a better read on it?
Asking about recurrence. My phyllodes occurred in 2003, 42 years old, my story is similar to others, was misdiagnosed as a fibroadenoma, grew quickly. Had a core biopsy, in the week after the biopsy, it got really got big and sore (I attributed it to the core biopsy) and over night it seemingly "deflated," back to the size before the core biopsy. Biopsy came back that it was a fibroadenoma,, with similarities to a Phyllodes, surgeon didn't like it was growing so recommended removing it. When he did, it didn't pop out like he thought it would...turned out the tissue was necrosis...seemingly died off. Sent to oncologist due incidental LCIS. She looked at core biopsy results and said either it is a Phyllodes or it isn't (couldn't get a pathology reading on the actual tumor tissue since it had died off), need a better reading of the biopsy, sent it off to leading breast pathologist in NYC, came back as most likely a benign Phyllodes (best read since only small sample since the tumor had died off). Had another surgery to do a wide area excision to make sure all of the tumor was gone, since margins weren't clear from previous surgery. Wound up pretty lopsided, was able to have a breast reduction on other breast and tissue moved around in the Phyllodes breast to create rounded breast. Since then, have had 6 months monitoring, alternating between Mammograms (not much can be seen due to dense breasts) and MRIs (20 years of this!). Last year had an area in the phyllodes tumor bed look suspicious. Had MRI guided biopsy, came back as Sclerosing adenosis with stromal sclerosis - no action needed. Just had my year follow up MRI, and again same area came back as suspicious, and it had grown and looking more mass like (but subtle changes). I am scheduled for another MRI-guided biopsy. Way back in 2003, not much was available online about Phyllodes, what was there was very scary, happy to see that there is more known now. Luckily I had found a NJ breast surgeon for the second surgery who had seen 12 cases over her career and was able to calm me when only one of 12 had a bad outcome. 20 years later (63 years old now) is a long time from what I have been reading for this to come back...but am concerned that I have read in this thread that someone was initially diagnosed with sclerosing adenosis for their phyllodes (that is what they are saying what they have found for me in the tumor bed last year- sclerosing adenosis). I had my yearly MRI last month, area had grown slightly and looking more mass like, so going for another MRI guided biopsy, with focus on taking sample from part of the mass that grew. I thought I was beyond the worry window with 20 years have gone by...anyone had a recurrence that many years later? Should I be insisting on a surgical biopsy at this point to get a better read on it?
This sounds unbelievably stressful. My first thought, not based on science, but on emotional peace, is to do what you need to do to feel less conflicted and calmer. If information can comfort you, get the information rather than worrying.
My wishes for good news and peace.
Asking about recurrence. My phyllodes occurred in 2003, 42 years old, my story is similar to others, was misdiagnosed as a fibroadenoma, grew quickly. Had a core biopsy, in the week after the biopsy, it got really got big and sore (I attributed it to the core biopsy) and over night it seemingly "deflated," back to the size before the core biopsy. Biopsy came back that it was a fibroadenoma,, with similarities to a Phyllodes, surgeon didn't like it was growing so recommended removing it. When he did, it didn't pop out like he thought it would...turned out the tissue was necrosis...seemingly died off. Sent to oncologist due incidental LCIS. She looked at core biopsy results and said either it is a Phyllodes or it isn't (couldn't get a pathology reading on the actual tumor tissue since it had died off), need a better reading of the biopsy, sent it off to leading breast pathologist in NYC, came back as most likely a benign Phyllodes (best read since only small sample since the tumor had died off). Had another surgery to do a wide area excision to make sure all of the tumor was gone, since margins weren't clear from previous surgery. Wound up pretty lopsided, was able to have a breast reduction on other breast and tissue moved around in the Phyllodes breast to create rounded breast. Since then, have had 6 months monitoring, alternating between Mammograms (not much can be seen due to dense breasts) and MRIs (20 years of this!). Last year had an area in the phyllodes tumor bed look suspicious. Had MRI guided biopsy, came back as Sclerosing adenosis with stromal sclerosis - no action needed. Just had my year follow up MRI, and again same area came back as suspicious, and it had grown and looking more mass like (but subtle changes). I am scheduled for another MRI-guided biopsy. Way back in 2003, not much was available online about Phyllodes, what was there was very scary, happy to see that there is more known now. Luckily I had found a NJ breast surgeon for the second surgery who had seen 12 cases over her career and was able to calm me when only one of 12 had a bad outcome. 20 years later (63 years old now) is a long time from what I have been reading for this to come back...but am concerned that I have read in this thread that someone was initially diagnosed with sclerosing adenosis for their phyllodes (that is what they are saying what they have found for me in the tumor bed last year- sclerosing adenosis). I had my yearly MRI last month, area had grown slightly and looking more mass like, so going for another MRI guided biopsy, with focus on taking sample from part of the mass that grew. I thought I was beyond the worry window with 20 years have gone by...anyone had a recurrence that many years later? Should I be insisting on a surgical biopsy at this point to get a better read on it?
Hi @suenap, I agree with @yellowdoggirl1 that you need to do what you need to do to have confidence in your care. Ask questions of your team and if something isn't clear, ask more questions.
One would like to think that 20 years would be enough to believe you're beyond the "worry window" (apt phrase). But cancer is wiley. Did you have the MRI-guided biopsy?
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Here is a link to an organization that nationally pairs people with a certain kind of cancer with each other based on that and other parameters (like age, gender, etc) so they can support each other.
https://cancerhopenetwork.org/
My daughter has not used it, but because the database of people is so large, it may have a good chance of finding someone like yourself. It is telephone - based.
I had my 1st phyllodes tumor removed in 1999 or 2000 in right breast and benign. went for mamo's and ultrasounds every year after that for at least 3-4 years and than just mammograms. I found my second benign phyllodes tumor on left side arm pit area and had removed in 2011. I have been going for my mammograms since the first tumor showed up. I am 61 now. In March had double mastectomy for DCIS with reconstructive surgery. Just had my 6 month follow up mammogram and right lymph node is now suspicious and have to have biopsy. They did removes 2 lymph nodes on both sides during mastectomy that were negative and the genetic testing came back negative as well .I don't know what to think now , have to wait almost 3 weeks for biopsy and am concerned again. The Dr's are positive but it's all so hard to tame the anxiety. Praying the dr's are right to be positive. Best of health to all
I pray they All right, too. You have really been through a lot. This is
such dicey business and the waiting is a world in itself.
My best to you!
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2 ReactionsAsking about recurrence. My phyllodes occurred in 2003, 42 years old, my story is similar to others, was misdiagnosed as a fibroadenoma, grew quickly. Had a core biopsy, in the week after the biopsy, it got really got big and sore (I attributed it to the core biopsy) and over night it seemingly "deflated," back to the size before the core biopsy. Biopsy came back that it was a fibroadenoma,, with similarities to a Phyllodes, surgeon didn't like it was growing so recommended removing it. When he did, it didn't pop out like he thought it would...turned out the tissue was necrosis...seemingly died off. Sent to oncologist due incidental LCIS. She looked at core biopsy results and said either it is a Phyllodes or it isn't (couldn't get a pathology reading on the actual tumor tissue since it had died off), need a better reading of the biopsy, sent it off to leading breast pathologist in NYC, came back as most likely a benign Phyllodes (best read since only small sample since the tumor had died off). Had another surgery to do a wide area excision to make sure all of the tumor was gone, since margins weren't clear from previous surgery. Wound up pretty lopsided, was able to have a breast reduction on other breast and tissue moved around in the Phyllodes breast to create rounded breast. Since then, have had 6 months monitoring, alternating between Mammograms (not much can be seen due to dense breasts) and MRIs (20 years of this!). Last year had an area in the phyllodes tumor bed look suspicious. Had MRI guided biopsy, came back as Sclerosing adenosis with stromal sclerosis - no action needed. Just had my year follow up MRI, and again same area came back as suspicious, and it had grown and looking more mass like (but subtle changes). I am scheduled for another MRI-guided biopsy. Way back in 2003, not much was available online about Phyllodes, what was there was very scary, happy to see that there is more known now. Luckily I had found a NJ breast surgeon for the second surgery who had seen 12 cases over her career and was able to calm me when only one of 12 had a bad outcome. 20 years later (63 years old now) is a long time from what I have been reading for this to come back...but am concerned that I have read in this thread that someone was initially diagnosed with sclerosing adenosis for their phyllodes (that is what they are saying what they have found for me in the tumor bed last year- sclerosing adenosis). I had my yearly MRI last month, area had grown slightly and looking more mass like, so going for another MRI guided biopsy, with focus on taking sample from part of the mass that grew. I thought I was beyond the worry window with 20 years have gone by...anyone had a recurrence that many years later? Should I be insisting on a surgical biopsy at this point to get a better read on it?
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1 ReactionThis sounds unbelievably stressful. My first thought, not based on science, but on emotional peace, is to do what you need to do to feel less conflicted and calmer. If information can comfort you, get the information rather than worrying.
My wishes for good news and peace.
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Like -
Helpful -
Hug
2 ReactionsHi @suenap, I agree with @yellowdoggirl1 that you need to do what you need to do to have confidence in your care. Ask questions of your team and if something isn't clear, ask more questions.
One would like to think that 20 years would be enough to believe you're beyond the "worry window" (apt phrase). But cancer is wiley. Did you have the MRI-guided biopsy?