As most of us know PT is

As most of us know PT is so rare there really isn't a protocol in place for treatment or follow up testing. We're from all over the world so that makes even more variables.

So I thought we could try to put in one place some of the current thinking on PTs. But not what would easily be found on a website (except for the classification).

*The most common way of classifying PTs is benign (B), borderline (BL), and malignant (M).

* Being a sarcoma the best treatment option is surgical removal.

* Some on here have found the sarcoma specialist to be the doctor they need while others see a breast specialist. Some of this will just depend upon the facility at which you are being treated.

* I'm not sure if doctors agree but in this group we've found that biopsies are often NOT accurate with regards to PTs. Pathology on the removed tumour is the best way to examine it. And it needs to be examined in it's entirity as even within the tumor it's variable. Because of the rarity often more than one pathology examination is recommended. You can send your slides to a more experienced facility to be read by a pathologist more familiar with PTs.

* Some of us have also experienced that after a biopsy our PT grew more rapidly.

* Clear margins are essential with PTs! Sometimes this is not possible due to the location of your PT.

* 1 cm margins are currently the standard with regards to PTs. There is a new study out, but so far this is what most of us have found. Certainly more investigation needs to happen here.

* Some on here have needed/opted for a mastectomy. This may be necessary to obtain clear margins; be dependent upon the size of your breast and the size of the tumor; or recommend, especially for some with MPT. But not all of those with MPT have had mastectomies, so it may not be true in your case.

* Radiation treatment is recommended for some. This seems to be especially true if clear margins couldn't be obtained or if you have MPT. Some with BLPT have also had treatments. Radiation treatments can only happen in a location once.

* Generally chemotherapy is not recommended and isn't effective on PTs. We have had a few women on here that have had it recommended due to having unusually aggressive form of PT. And some have found it successful 

* The general thought is that only MPT will mestastize. Some with BLPTs have also had testing done as well.

* The areas where PT will mestastize first are thought to be the lungs, liver and bones.

* Testing is one of the greatest variables within the group​. Most have mammograms and ultrasounds, but others have also had MRIs beforehand to help locate the tumor.

* Tests to check for mestastizing can include: blood work, lung x-ray, bone scan and liver ultrasound or MRI in place of the above tests.

* Follow up protocols are also wildly variable. Some have had no follow-up. Others have MRIs. Most of us seem to have some combination of mammogram, ultrasound and breast exams.

* Some treatment teams recommend genetic testing. This is important prior to radiation treatment since a genetic mutation of PT53 thrives on radiation to spread cancer.

Please let us know any adjustments!!                     info@phyllodes.net