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
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.
The report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term andThe report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term and it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
The report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term andThe report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term and it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
My 32 year old daughter had a mastectomy last year due to a malignant phyllodes tumor (7cm). She will require a scan every 6 months from now on, first one was an MRI today, next one a CAT scan in 6 more months and so on like that, MRI then CT , alternating.
This is life-changing for all of us. When she gets the results from the MRI, I will report. Just praying nothing is found.
I recently (5 days ago) had two tumors removed from my breast. One was a borderline phyllodes tumor and the other was believed to be a fibroadenoma but turned out to be a benign phyllodes tumor. The margins were not removed from the one believed to be a fibroadenoma. They found atypical ductal hyperplasia and due to the rarity of these tumors and the confusing pathology report they are sending my info to Boston for a second opinion. As I navigate the internet searching for any and all information about phyllodes tumors I am shocked at how little information there is. I am feeling quite overwhelmed.
@danielleruddy, I know this is all so new and overwhelming. You are not alone. Do you know when you can expect to hear the results of the second opinion? How are you doing today?
Some searches I did:
Where is phyllodes breast cancer research being done? Duke University and hospital. Dr. Rosenberger is the founder and Principle Investigator of an 11-site multi-center collaborative network of Comprehensive Cancer Centers that research phyllodes tumors. You can always get a second opinion from a cancer center if you wish. https://surgery.duke.edu/divisions/surgical-oncology/research/research-laboratories/phyllodes-tumor-research-phytr
Science Direct always brings up some of the latest info - they have standards on the quality of research shared, but you’d want to check out specifics on any information you find on the web.
Here’s an August 2024 article that saying EGFR (epidermal growth factor receptor) mutations are a good target for treatment of early phyllodes tumors, using EGFR inhibitors. Also notes that P53 (tp53) is often low in phyllodes tumors, so your pathology report might note that. P53 inhibits cell proliferation.
(Sorry long link) https://www.sciencedirect.com/science/article/pii/S1936523324001256
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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
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.
THAT sounds incredibly stressful!
My thoughts are with you.
Please excuse my inept repetitions!
Thank you!
The report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term andThe report is back. I think it looks pretty good, but I have not heard that any one from the hospital has called with results. I looked up about every other term and it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
it all looks ok, for which I am grateful, but would be more confident if one of her doc's had weighed in to that effect
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1 ReactionMy 32 year old daughter had a mastectomy last year due to a malignant phyllodes tumor (7cm). She will require a scan every 6 months from now on, first one was an MRI today, next one a CAT scan in 6 more months and so on like that, MRI then CT , alternating.
This is life-changing for all of us. When she gets the results from the MRI, I will report. Just praying nothing is found.
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Helpful -
Hug
1 ReactionYes. Twice. Malignant in left breast 9/2020, malignant in right breast 9/2021
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1 Reaction@danielleruddy, I know this is all so new and overwhelming. You are not alone. Do you know when you can expect to hear the results of the second opinion? How are you doing today?
@triciaot, I found a shorter (non-pdf) version of the link you wished to share:
- Integrated multi-omics profiling reveals a clinically relevant molecular feature and potential therapeutic target on phyllodes tumors of breast https://www.sciencedirect.com/science/article/pii/S1936523324001256
Thank you!