It has been raining almost every day for the past three weeks here. Rain always makes my pain go up, most likely due to pressure changes in the air. So I've been hurting but dealing with it for the most part. I have felt rather odd for the last week, in limbo, just waiting for the next thing. I can't focus on anything and just feel antsy. I know why, it is because I am waiting for the lumpectomy surgery (tomorrow) and the biopsy results to follow. Since I don't know for sure what the lump in my breast is, I am left unsure of what to do next or what to expect. I really hate this part of any medical diagnosis, the waiting for results part. Once I know what is going on, I can figure out what to do next, research the diagnosis, learn as much as possible and start moving forward. But during the time period where I don't have a diagnosis, all I can do is wait and feel antsy and a bit lost. It sucks because I can't focus on anything, not stitching, reading, or anything else. I start and in a few minutes I get up and try to find something else to do. Oh well. Tomorrow is a step forward. I have to be at the hospital at 11:40AM and should be sent home around 6:00PM or so. Then comes another week of waiting for the biopsy results while letting my breast heal. Ohman that will be a hard week!
That's all that has been going on for me this week. Just...waiting.
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Love Green!
7 years ago
Hi there,
ReplyDeleteThought I would reach out to you as I was recently diagnosed with a benign PT as well. You very likely already know this, but -THE most important thing you can do is make sure your surgeon got a clean margin and took at least 1cm of clear surrounding breast tissue. This is more important than if the tumor was benign, low grade or malignant so don't let him tell you otherwise. I couldn't tell from your post if he took the wide margin or not. I would also get a second opinion regarding your slides, just to be sure they were read accurately and your not walking around with a higher grade tumor. Most doctors and pathologists go their entire careers without ever seeing a PT, so a 2nd opinion, preferably at a large teaching hospital from a pathologist who does nothing but look at breast tissue all day long might be in order. Is there a Mayo clinic site in Florida? Might be a good place to start if there is. (you can have your slides sent anywhere without having to go to the physical lab's location, by the way) Also, the hospital where you had your surgery may have a weekly tumor board where a multidisciplinary team meets to discuss your case so that your doctor can get feedback and input. It's a learning opportunity as well since many doctor's don't have a clue regarding PT.
One last thing, there is a board with a Phyllodes forum for women like us. Lots of young moms, information and support there. Don't read too much if you find yourself getting upset. The stories really put the benign diagnosis in perspective. And by the way, researchers are now saying that radiation does improve outcomes and decrease recurrence in low grade/malignant tumors, so there is hope and there are options for those whose tumor's recur and progress. It's hard not feeling like a sitting duck all the time, I know.
Good Luck to you!
www.rarecancer.org