Waiting on pathology

Posted by tanyakem @tanyakem, Jan 23 4:30pm

Hi all! I have hesitated to post but I’m going crazy. I discovered a large indentation under my right breast. Being seen at the breast clinic Mayo Jacksonville. They did a stereotactic biopsy which was benign but found to be discordant. Radiologist didn’t like what he saw (between mammogram and clinical appearance). Surgeon agreed and they removed it on Jan 8th. That was a Mon and surgeon felt confident that he would have results by that weekend. Well, two weeks and two weekends later we are still waiting. Had a follow up (video visit) with PA today and she said she would check on it because they usually get results in 3-5 days. Sent me a message this evening that she spoke with pathology and they sent my slides to Rochester for review and the Dr would call as soon as he got the final results back. Should I be this concerned? Has anyone had this with Mayo?

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beckyolson33 | @beckyolson33 | Jun 21 8:18am

In reply to @tanyakem "Hey! Thank you for asking. I did receive my pathology. Then took another week to get..." + (show)

@tanyakem

Hey! Thank you for asking. I did receive my pathology. Then took another week to get a game plan. (Just found out this past Fri). The good news is that is NOT cancer. I’m very grateful and relieved. The bad news is that it is mammary desmoid-type fibromatosis. Extremely rare finding which is why it has taken so long to get answers. Jacksonville sent it to Rochester for confirmation and typing. Only a handful of cases are found a year. Accounts for only .02 % of all breast tumors. Very aggressive but benign. Involved both inferior and medial margins. My surgeon summed it up like this.
“This was discussed in detail with our expert sarcoma pathologist, medical oncologist and my breast surgery and sarcoma colleagues. There is certainly a potential for local recurrence, need for medication and even potentially a future mastectomy.”
Apparently it has a high rate of reoccurrence (about 1/3 of the time). One of the few benign diseases that are handled by sarcoma doctors. Repeat diagnostic mammogram in May with physical exam (by my surgeon at Mayo) followed up every 6 months for a minimum of 3 years. I hesitated to post this because I’m struggling with wrapping my head around it. So many on here are fighting something that is a danger to their lives so I don’t want to sound whiny. I’m lucky in that regard. But I now have an issue that could cause lots of issues including a radical mastectomy. It doesn’t have the ability to metastasize but can grow into the chest wall and ribs. Because it is so rare there is limited information available and few studies. Less than 1500 desmoids a year in the US and mammary only account for less than 10% of those. The desmoid website doesn’t even discuss it. So……I will find comfort in the fact that it won’t kill me and learn to learn with a wait and see pattern. They know it’s still in there and in the 7 months it had already caused a retraction big enough to completely suck up the lower half of my breast……..I will just have to see what the future holds I guess. Grateful that I’m close enough to Mayo for all future care. Thank you again for checking on me! Sorry for the long post.

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Tanya, I would love to hear more about your experience with the Desmoid fibromatosis tumor. My daughter(19 yrs old) has this same type in her right breast. After the MRI it looks like she has multiple similar appearing
T2 hyperintense oval
masses there as well. We have not had the surgeon return our multiple calls to explain the MRI or schedule the surgeon that they were so adamant needed to happen soon due to the growth of the tumor in the last 8-12 months. My daughter thought it was a bruise at first and then when it changed color and felt more like a little marble she went to the gyno. That started the run around of, ultrasound, biopsy, pathology that took months and no conclusive results. Now we are at Huntsman and we were feeling really good about that. Now we sit and wait.