Update

[catherine15]

Thank you all for your respond. I now finaly have been told i have a rare breast cancer called phyllodes also had Fibroadenoma. After my core biospy we got in contact with the clinic i attend and they saw me. the registry dr. that was there in place of my surgeon said at first that it looked like congential bleeding or a cyst, but on a scan i was told nothing showed up. he did not doubt i was in pain but sugested i go back to my local GP and have a scan on my neck and shoulder to see what was causing the pain as he was only a breast surgeon not a bone special. What aload of crock.. to cut the story short i had an infection that you would get after a mastectomy but mine was after core biospy how ever sice then i have had a Diagnosic excision biospy on 30th july and  a breast re- excision of margins on the 24th of august to be told i had phyllodes tumour.AS i havd done some research on this i know it can grow back as little as a couple of weeks. Ive been told that i will have follow up in 2 weeks and then once a year after that. to me this wont give me peace of mind. What if it does grow back, should i not bee seen sooner than that. I have been battled by the reigistry who has kept telling me i had no cancer and the main Surgeon telling me i have breast cancer. Now at least i have it in writing and am sure of what i have. Please is there anyone out ther that has survied this type of cancer. there is very little up date on it. my thanks goes to you again that answered me as i thought i was going crasy. rgds catherine15


This discussion is related to pain!.

[bluebutterfly2222]

Thanks for the update!

I am glad you are feeling a little better about things. Apparently they didn't recommend any additional treatment, even though it was cancer?

It still sounds a bit confusing, so do keep pushing for a copy of your report. (This is good advice for everyone, not just in your case.)

I am glad they gave you the option of earlier followup, if you have any concerns.

Please do keep us posted on how you are getting along.

Best wishes...

[catherine15]

Hi again. My appointment in cork di not turn out as bad as i thought. Yes it is cancer but i am still worried that 12 months for follow up is not right.But i was told to keep self exam and if anything did not feel right to contact them which makes me feel a bit more at ease. I am still waiting for patholgy report in writing. Itseems to have a little red tape to get it here in ireland. Thank you for your support and i will post path report when i recieve it. Feeling good at moment but also wonder when or if it will return. The waiting was the worse for me. I hear a lot say that and now i understand. Best wishes.

[bluebutterfly2222]

Hi again,

You are correct that phyllodes are relatively rare (about 1% of breast tumors).

I am posting a link below which may give you additional information, including questions to discuss with your doctor:

http://www.answers.com/topic/phyllodes-tumor

I hope the appt. on Monday answers a lot of your concerns.

Thank you for keeping us posted!

Warm regards,
bluebutterfly

[catherine15]

Thanks again for your reply. I am going to cork breast clinic on Monday27th of sept2010 and will have more answers and will look for pathology report. How ever the surgeon told me i have low grade phyllodes that why i had second operation to try and clear margin. When i asked him was it cancer he respond was yes, that was about 10 min. before second operation. I think this is the only second time they have come across this type of cancer there so wonder if they know enough about it.but will let you know all when have report in my hand.

[bluebutterfly2222]

You did not answer my earlier question, asking if your phyllodes was definitely found to be malignant in the pathology report. (Only needing  a follow-up mammogram in a year would make me wonder even more if you actually had cancer.)

I think you need to clarify this with your treatment team,and obtain a written copy of your pathology report, if you have not already done  so. The type of phyllodes you had would dictate the treatment and followup you should have.

Best wishes...

[catherine15]

Iam sorry about this but unsure how to keep it to the orginal thread as i'm only learning about the computer just to have info on phyllodes . your help on this would be greatfull. also i have been told that now i will only have to go back once a year for mamo and i am afraid that this is not good enough. What if this phyllodes that i have removed will come back within that year. How will i know if it gets caught in time again or not?I would have thought at least every 3 months for a scan would have been better.Is there many people out there that has survived this rare tye of cancer

[bluebutterfly2222]

Hi again,

Some of the confusion may be related to the fact that Phyllodes tumors can be benign, borderline, or malignant.

Was yours found to be definitely malignant in the pathologist's report?  If so, the surgeon will need to communicate this information and the report to the registry, so that they will have an accurate understanding of your diagnosis.

I am providing a link to a previous thread regarding Phyllodes that may be of interest to you:

http://www.medhelp.org/posts/Breast-Cancer/Phylloides-Tumor/show/258799?personal_page_id=353244#post_1645258

Thank you for providing us with an update on your situation. I am sorry there has been so much confusion as you struggled to get a diagnosis.

Best wishes,
bluebutterfly

p.s. Just a suggestion: It is preferable that  people add all their related  additional posts to their original thread, rather than starting a new one. That way they don't have to repeat previously given information, and we have all of the relevant history and details in one place, which helps us to provide better answers.