utah, phyloids tumor

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utah, phyloids tumor

Postby vll1961 » Wed Feb 17, 2010 12:03 pm

I am looking for anyone in the Utah that has been treated for a Phyloids tumor. I would love to talk with you about your care and what has been done for you in that respect. It would be nice to know that I am not alone in this big state of ours.
Posts: 9
Joined: Thu Jun 25, 2009 10:17 am
Cancer Diagnosis: high grade malignant phyloides tumor
Relationship To Patient: Self

Re: utah, phyloids tumor

Postby TheCult » Thu Apr 01, 2010 9:00 am

Hello there,

I 'm far away from the States (located in Greece) but I think doesn't matter to share with you our case and give to you my wife's case historical data.

U know, in our case (my wife's case) we haven't clarified/confirmed with a 2nd opinion if in the very first time that he noticed the 1st lump, was really a fibro -adenoma. This was the 1st opinion of the person that he made the ultrasound (that it is a simple 3,4cm fibro) and that we have just to go to a breast specialist to take make the decision if needed to be taken out or not. The 1st mistake we might made at that time (because we were convinced that it is something "easy" to be treated), was that we went to my wife's Gynecologist and not a breast specialist for the checking.
So, after his clinical exam he told us that it should be 99% a fibro w/o any further need for any other treatment.
Then we 've been on lympectomy in MAR 2007, he just took it out but : 1) Either he didn't realize that it was a PT or 2) he just waited for the report that finally said that it was a benign fibro-adenoma. So either the report was wrong or simply there was a mutation from fibro to multiple PTs after about 6-8 months so we arrange new visits with 2 different Breast specialists and both of them agreed that we have to take them out the 3 new lumps between 1,5 and 4,5 cms. So we've done the 2nd operation again with lympectomy(2nd mistake) because at first we had the 1st report for fibro and not PT and 2ndly during the 2nd operation though the Dr realize that there were PTs we haven't decided upfront for any "bigger" "decrease of the breast or even mastectomy and at the end with the fast biopsy during the operation they saw that they were benign.
This 2nd operation was exactly 1 year after APR 2008. The Dr. at that time was very clear and detailed to us "We are talking at the moment for a local bad thing, that cannot spread around but could recurrent in the same place". Then after six months again the same story. After the normal follow up ultrasound, there were 2 of them on the same right breast. So we arranged again a 3rd operation something like 1/2 mastectomy (as until that time we were talking for benign PTs). So in 2nd of April 2009 we 've been for the 3rd operation but this time we had bad results from the pathological report . 1 PT was borderline and the other one Malignant. So after one month we get in hospital again and done the mastectomy with clean margins (I wish we had done that from the very beginning) !!!! after all these we 've been through,,, anyway. Now we have the 1st year anniversary at the end of the month regarding the mastectomy (we have done MRI, 3 months after and clinical exam and was clean and the a normal clinical check by the doctor 6 months later). In 15 days we have the scheduled mammogram to the other breast and I think one more exam like Chest X-rays or something and if hopefully everything is well we will start to think for reconstruction...

Best Regards

If u have any questions I could answer to u , I would be more than happy.
Posts: 14
Joined: Sun May 10, 2009 9:46 am
Location: Greece
Cancer Diagnosis: Phyllodes cystosarcoma Malignant
Relationship To Patient: Husband

Re: utah, phyloids tumor

Postby woogy » Fri Nov 12, 2010 7:51 pm

I am not in Utah but am certainly available to talk with you and hopefully answer any questions that I can. You can private message me and will exchange information if you like.
Active Member
Active Member
Posts: 34
Joined: Fri Aug 22, 2008 12:48 pm
Location: Danbury NC
Cancer Diagnosis: phyllodes tumor malignant
Relationship To Patient: Self

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