Need a reality check re: recurrance rates

lizcola · December 2009

In October 08 I was diagnosed with 3mm of DCIS near the nipple but not close to the skin. The grade was high, but the size didn't budge from my initial suspect mammogram in August to my surgery in February. I would have been a candidate for lumpectomy, but previous radiation for a childhood cancer ruled it out (also the reason my doctors believe I got DCIS in the first place). I had a mastectomy and DEIP a couple weeks later.

While having a check up with my breast surgeon a couple weeks ago, she found a long-ish, thin lump near my sternum right where the blood vessels were accessed for the DEIP. She's sending me in for my regularly scheduled MRI a couple months early (which I have to wait for due to my cycle) and then an ultrasound, she says regardless of the MRI findings. I have a very large chunk of fat necrosis by my armpit that was apparent to my PS right after the DEIP, but I don't remember him giving me an exam nearly as thorough as my breast surgeon.

When I think about a recurrence for 3mm of DCIS, it seems so crazy that I can't believe it. My gut tells me it's fat necrosis and logic tells me that's the most likely answer, but my emotions are all over the map. Of course I know that it's a possibility, but certainly not a probability.

Have any of you had issues with fat necrosis presenting itself as a suspicious mass? Is there any pattern to fat necrosis, such as shapes and/or areas that it would or would not appear? What would be the reason for ordering an ultrasound if the MRI comes back clean?

Thanks in advance for any input!

CrunchyPoodleMama · December 2009

Goodness, I don't have answers to all your questions but bumping in case someone does... I remember researching the heck out of fat necrosis when I was hoping that's what my 4cm chunk of DCIS was (Google Images was my best friend and worst enemy! LOL) and hoping that that's all it is in your case! Since you had a mastectomy, there are no ducts left in that breast so I don't see how it could possibly be DCIS, which is "in situ" by definition... so my completely uneducated opinion is that your hunch is right, that this is NOT a recurrence of DCIS. Hang in there and please update us after you get the results!

dlb823 · December 2009

Yes, I had a longish, pronounced lump that started near my sternum and ran horizontally near the lower edge of my breast that appeared almost a year after my Diep. A local radiologist dx'd the lump as cysts, which sounded plausible to me. But as soon as I could get to UCLA (where I'd had my surgery), both my breast surgeon and plastic surgeon immediately said it was fat necrosis. My plastic surgeon removed it and biopsied it when I had my Stage 2 surgery. From your description, this sounds very much like what you have. I also doubt another palpable DCIS lump would crop up so soon. Have you pointed it out to your plastic surgeon? Deanna

lizcola · December 2009

Thanks for your responses!!

After my appointment, my breast surgeon called my PS to see if he knew of this area. He didn't, but to me that's not a huge surprise because his post op exam seemed pretty superficial and fat necrosis can pop up months or years later. Part of what scares me is that she was very casual in my appointment when it was found, but sounded more grave after she talked to the PS. I can see why it's more concerning if she thinks it's a "new" finding, but I'm wondering if there's anything more the PS would've said that would make it serious, like maybe fat necrosis wouldn't show up so close to where the blood vessels are connected? Basically I'm playing the losing game of trying to read my doctors' minds and infer whatever I can from every inflection in their voice. It's crazy making

My big fear is that this is invasive. I feel so, so lucky to have escaped chemo & radiation and the idea of having to go through treatment has me really depressed, in large part because we're planning on starting a family this summer and a new diagnosis would make that much more complicated than it is already.

CrunchyPoodleMama · December 2009

Basically I'm playing the losing game of trying to read my doctors' minds and infer whatever I can from every inflection in their voice. It's crazy making

LOL - this made me laugh. I'm glad I'm not the only one who does this! "Was the doctor making eye contact with me when he said such-and-such? Was that an ominous tone I detected? When he smiled to greet me, was it a sad/sympathetic smile as if he feels sorry for me, or a genuine 'you're going to be fine' type of smile?" etc. etc. etc. ad nauseum. My advice is TRY not to do that and distract yourself as best you can! Throw yourself into a project that takes a lot of thought or creativity so your mind won't keep thinking up new worries!

My big fear is that this is invasive. I feel so, so lucky to have escaped chemo & radiation and the idea of having to go through treatment has me really depressed, in large part because we're planning on starting a family this summer and a new diagnosis would make that much more complicated than it is already.

I can totally relate to this (the "hoping to start a family" part and not wanting any new monkey wrenches throw into the plan), but I still feel based on what you've said here that there is every chance that this is nothing to worry about. Repeat after me: "I will not proactively worry! I will not proactively worry!!!" (I'm preaching to myself about that, btw! Worrying seems to be the ONE thing I'm quite proactive about!)

lizcola · December 2009

Sometimes I think I should schedule two appointments with my doctors - one for when the actual exam and one for all the questions that come up on the car ride home. And probably a few "no, REALLY, what do you think..." questions where I can really study their eye movements ;-)

lizcola · December 2009

Ugh. Power outage at the MRI center means my appointment for tomorrow is canceled and can't be rescheduled until next month. Merry Christmas. Now I have a call in to my doctor to see if I can either go somewhere else or have an ultrasound asap to get some kind of handle on what's going on.

lizcola · December 2009

I was able to speak with my BS a few minutes ago regarding the results of the MRI. The conclusion was "probably benign", but she wants me to get an ultrasound just in case. If the radiologist determines it's appropriate, he'll biopsy it then. But the other shoe dropped and she said he found "something" in the right breast that was probably inflammation. Has anyone run into this before? I need to start my research, but I don't know what inflammation looks like vs. a tumor? Again, he said both were probably benign and my surgeon said she was being conservative in her recommendation for follow up. I feel great right now, but know that the anxiety will come back. I'm also trying to consider that all future screenings will be like this now that I've had breast cancer, that no "probably nothing" will go uninvestigated and that that's a good thing.

Reading others' posts on this siteand knowing that I'm not alone has been incredibly soothing. Thank you again

shannyshields · January 2010

I am dealing with a similar situation and just started a new post in the chemo area. I just found a lump in my armpit where they took out the lymphnodes and did the mastectomy reconstruction. It's on the same side as my original breast cancer and i am so scared that its NOT a fat necrosis. I just don't understand how something like this could grow while i am in chemo....if it's cancerous, does that mean the chemo is not working? does it mean the surgeon just missed that lymphnode! I am calling my doc tomorrow since its sunday.

lizcola · January 2010

Did you get ahold of your onc? What did s/he say??

I had an ultrasound and got the very frustrating "it doesn't look like anything, but we still want to watch it."

Need a reality check re: recurrance rates

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