Possible recurrence (or missed spot)

Sjbell1001 · February 2021

hello all,

I was DX in 2019 with invasive lobular carcinoma, on the MRI they believed the tumor was only a bit less than 2cm and no spread to lymph nodes. During surgery the tumor was 4 1/2 cm and had spread to lymph nodes but only three of them. I had a unilateral mastectomy on my left breast and a lymphedectomy underneath my left arm. I’ve had 4 more surgeries and 25 treatments of radiation. I had finally started to feel a little better, less fatigue, less pain, less inflammation, when all of a sudden it seemed to hit me again like a ton of bricks. And then they found some areas of concern. Places they had originally believed to be scar tissue but now not so sure. Hoping it’s just cysts but my surgeon had ran a little handheld ultrasound over the places and then called for an ultrasound. It’s tomorrow. He stopped my appointment then, didn’t continue the examination just said we will schedule again after this ultrasound. I’m hoping it’s nothing but it is a little scary, it always is. My oncotype was a 9 and I had a complete hysterectomy to knock down the recurrence rate even further but I still live on fear . Does everyone go through this or do you finally just numb yourself to it?

BevJen · February 2021

Sjbell,

I am sorry for your situation, and I hope the sonogram provides some clarity for you and your surgeon. I just wanted to offer some perspective for you about the nature of ILC. ILC doesn't generally form a tumor like we think of a tumor -- because of its nature, it tends to spread throughout your breast and is difficult to discern on imaging. I'm not surprised about the discrepancy between what your docs thought was the size and lymph node status and what they found when they went in. When I was first diagnosed in 2003, they thought the exact same thing, and they were way off on both size and nodal development.

I will tell you that I had issues with longstanding infections in my one breast (I had a bilateral mastectomy). They just couldn't get rid of the infection. In fact, I actually started radiation when I still probably had some infection in my L breast. What ended up showing up after, on my scans, was a seroma which eventually disappeared. But it took a long time. I hope that's what they find with you, and that may be what the surgeon is looking for.

And yes, the worry sticks with you for a long time. You just have to figure out how to deal with it.

Good luck.

Whatjusthappened · February 2021

Sjbell1001, I totally understand your anxiety. The sneaky way ILC behaves makes it hard to trust the results of imaging. I used to worry more about every little pain, but after a while I've started to relax a bit. When something new pops up, I figure it will go away, get worse, or hang around. If it gets worse or doesn't go away, then I worry. My various imaging tests have turned up some non-cancer related issues, but no evidence of recurrence. After a while, it has finally sunk in that there are plenty of reasons for pains, lumps, and bumps besides cancer. I have had two biopsies investigating suspicious areas in the chest wall on ultrasound, and both times it was fat necrosis, which is common after reconstruction.

So sorry that you are going through this. I do hope that you get some good news.

Sjbell1001 · February 2021

Looks like I am off for a biopsy. The ultrasound found a suspicious lesion and they want to have it biopsied. They showed me on the screen and it is definitely a black mass amongst the gray tissue. They are hoping it is scar tissue even though it looks different than the scar tissue around it. I’m crossing my fingers for a clean biopsy.

Whatjusthappened · February 2021

Sjbell1001, sending positive thoughts your way that it is nothing. Do keep us posted.

Possible recurrence (or missed spot)

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