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Phyllodes Tumour...re-excision?
Hi,
After having biopsy results that said a lump was benign, I had an op 2 weeks ago to remove the large lump. My results today show it was definitely a Phyllodes Tumour but that it has been graded intermediate/borderline, which now worries me it not being called benign anymore. On a scale of 1-10, 1-5 being benign, 9-10 being malignant(rare?), I am grade 6. It was a "pushing" tumour (as opposed to infiltrating), & atypical & just shelled out which I do understand from reading others experiences. It may have grown quickly as I was unaware of it earlier in the year. My consultant has recommended a 2nd op to remove about 1/2cm of "good" tissue (my lump was about the size of a Hens egg), but is leaving the decision to me. I am really dreading a 2nd op especially as he said I would need a chest drain & this time there would possibly be a change cosmetically, which was my initial fear to start with (& there is no question of reconstructive surgery for this over here unless it was a mastectomy, & I wouldn't want to go through that anyway)
He stressed it wasn't Cancer but I find this difficult to comprehend when the grading suggests otherwise.
He couldn't give facts & figures re regrowth or if not having the op made it more likely it would grow back.
Either way I will be monitored, mammograms etc every 3 months then if OK 6 months etc.
I would appreciate some advice.....has anyone else got experience of this?
After having biopsy results that said a lump was benign, I had an op 2 weeks ago to remove the large lump. My results today show it was definitely a Phyllodes Tumour but that it has been graded intermediate/borderline, which now worries me it not being called benign anymore. On a scale of 1-10, 1-5 being benign, 9-10 being malignant(rare?), I am grade 6. It was a "pushing" tumour (as opposed to infiltrating), & atypical & just shelled out which I do understand from reading others experiences. It may have grown quickly as I was unaware of it earlier in the year. My consultant has recommended a 2nd op to remove about 1/2cm of "good" tissue (my lump was about the size of a Hens egg), but is leaving the decision to me. I am really dreading a 2nd op especially as he said I would need a chest drain & this time there would possibly be a change cosmetically, which was my initial fear to start with (& there is no question of reconstructive surgery for this over here unless it was a mastectomy, & I wouldn't want to go through that anyway)
He stressed it wasn't Cancer but I find this difficult to comprehend when the grading suggests otherwise.
He couldn't give facts & figures re regrowth or if not having the op made it more likely it would grow back.
Either way I will be monitored, mammograms etc every 3 months then if OK 6 months etc.
I would appreciate some advice.....has anyone else got experience of this?
Thanks for the answers.
I think deep down I know I really don't have a choice but to have the 2nd op. I feel my consultant is not telling me everything but just enough info that he feels I need at the time. This is getting me angry cos I have read about Pylloides on the net & I know already he has given me false hope by saying my biopsy was benign & that the condition isn't serious. Also I was given the impression that my initial op would be the end of it all (even as he stood by my bed after the op!)although I am 99% sure he knew then it was a Phylloides. Well it looks pretty serious to me!
He has said I will live a normal life expectancy & that it is NOT cancer.Well it seems to me that it IS a form of cancer, especially now I am borderline.
I can't concentrate on anything else. I know that the chance of it returning even after the 2nd op is still there. What if the margin he takes out isn't clear? He's talking as if it will be...but he doesn't know that for sure until it's tested. I know I'm sounding negative but so far eveything he's said has turned out the opposite. I am at my wits end with worry.
I think deep down I know I really don't have a choice but to have the 2nd op. I feel my consultant is not telling me everything but just enough info that he feels I need at the time. This is getting me angry cos I have read about Pylloides on the net & I know already he has given me false hope by saying my biopsy was benign & that the condition isn't serious. Also I was given the impression that my initial op would be the end of it all (even as he stood by my bed after the op!)although I am 99% sure he knew then it was a Phylloides. Well it looks pretty serious to me!
He has said I will live a normal life expectancy & that it is NOT cancer.Well it seems to me that it IS a form of cancer, especially now I am borderline.
I can't concentrate on anything else. I know that the chance of it returning even after the 2nd op is still there. What if the margin he takes out isn't clear? He's talking as if it will be...but he doesn't know that for sure until it's tested. I know I'm sounding negative but so far eveything he's said has turned out the opposite. I am at my wits end with worry.
Sorry to hear of your problems. You might want to at least get a second opinion to get more answers and then switch doctors if you're more comfortable with the second one.
Is it possible to change doctors? It doesn't sound like, for good reason, that you trust your doctor. You need to feel comfortable when dealing with such a serious issue.
Dear Yorkrose: A phyllodes tumor is a tumor that occurs only in the breast, and what causes it remains unknown. It is very rare--less than 1% of all beast tumors are classified as phyllodes tumors. This type of tumor develops in the stroma (connective tissue) of the breast, in contrast to carcinomas, which develop in the ducts or lobules.
Phyllodes tumors vary in their aggressiveness and can be classified as benign, borderline or malignant. The term cystosarcoma phyllodes is often used to describe the malignant phyllodes tumors. A borderline phyllodes tumor may mean that there are some malignant features to the tumor.
Phyllodes tumors tend to be large--the average size is about 5 cm--and to grow very quickly. These tumors do not typically cause any pain and are hard, round, and easy to feel.
Phyllodes tumors are typically removed with an excision and a 2cm margin is recommended. Both benign and malignant phyllodes tumors have a tendency to recur in the breast in which case a second excision or possibly a mastectomy may be needed. There is no specific time period in which a phyllodes tumor may recur. Malignant phyllodes tumors do have the ability to metastasize (spread to other parts of the body), and when they do the lung is the most common site of spread. Unlike with a typical breast tumor, there is no systemic treatment (chemotherapy or hormonal therapy, like tamoxifen) that has been shown to reduce the risk of recurrence. It is important to keep in mind, though, that these tumors are rare and the percent that metastasize is relatively small.
Phyllodes tumors vary in their aggressiveness and can be classified as benign, borderline or malignant. The term cystosarcoma phyllodes is often used to describe the malignant phyllodes tumors. A borderline phyllodes tumor may mean that there are some malignant features to the tumor.
Phyllodes tumors tend to be large--the average size is about 5 cm--and to grow very quickly. These tumors do not typically cause any pain and are hard, round, and easy to feel.
Phyllodes tumors are typically removed with an excision and a 2cm margin is recommended. Both benign and malignant phyllodes tumors have a tendency to recur in the breast in which case a second excision or possibly a mastectomy may be needed. There is no specific time period in which a phyllodes tumor may recur. Malignant phyllodes tumors do have the ability to metastasize (spread to other parts of the body), and when they do the lung is the most common site of spread. Unlike with a typical breast tumor, there is no systemic treatment (chemotherapy or hormonal therapy, like tamoxifen) that has been shown to reduce the risk of recurrence. It is important to keep in mind, though, that these tumors are rare and the percent that metastasize is relatively small.
Personally, I would be agressive and have the second operation.
Living with a scar and some disfiguring is way better than living with cancer (present or future).
Living with a scar and some disfiguring is way better than living with cancer (present or future).
A related discussion, phyllodes breast tumor was started.
My pathology report said I also have focal papilloma. What does that mean? Is it a different type of caner? Is this what CFF-RN,MSN-RF is talking about? Please tell me it is not. I already have extensive DCIS and 0.9 invasive cancer but my path report did mention this and I paid it no concern because none of my doctors mentioned it.
I had an intraductal papilloma (which was a plugged milk duct) removed years ago. They're benign, but we didn't know for sure what it was, and it changed over time, so I had it removed. I don't know what a "focal" papiloma is, however. But, it is not the same as phyllodes tumor.
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