It's back, it's nothing, it's back, it's nothing

I'm nervous. There is intermittent pain in my left breast, where before there was no sensation. I had a double mastectomy back in July of 2014 for stage 1 TNBC. The pain is in the region where the tumor was. Is this phantom? Could my nerves be reconnecting? I had to beg my insurance company to be seen by my breast surgeon for an annual checkup about a month ago, as he is now out of network. The nearest in-network breast surgeons are almost 2 hours away, closer to NYC. Do I wait and see if this goes away? Are there any other people who had mastectomy surgery who experienced pain years later?

7 Replies

  • I've not had a mastectomy, so I don't have that in common with you and can't tell you about this from my own experience, but I do have a couple of thoughts to share. Is this pain new since you saw the surgeon a month ago? If it started after seeing that doc, I think if I were in your shoes I would call that office, speak with a nurse, explain what's happening and ask what to do. I'd also be feeling the area where the pain is to see if it feels at all like it did when the original cancer showed up. I suspect this would be worrisome for any of us and that seeing the oncologist or breast surgeon would be reassuring. I hope you will be able to get some answers about this. I hope you get all the info you need to help you make good decisions and that you will get answers and have peace of mind about whatever it is. (But if I were forced to guess, I'd think it is nerves reconnecting!) Sending healing thoughts and prayers your way.

  • Thank you!

  • I had a bilateral mastectomy in 2006. I still get pain, what I call "zingers", even this far out. The frequency has greatly diminished, but I still definitely get them from time to time. It feels like a flash of pain, that goes away instantly. I think, in my case, it is still nerves that maybe regenerating. I don't know if this is the kind of pain you're experiencing. I hope this helps. <3

  • Thank you. I forgot to mention that I have an almost 7 year old son with special needs who still likes to be picked up. I forget about the rearrangement of my chest muscles and he is getting heavier and heavier! I'm hoping I just over did it, and will try to take it easy with my lifting over the next week. Everything still feels strange in this new landscape, and I'm not sure what is 'normal' when it comes to self exams. Most research talks about recurrence on the chest wall, but this is definitely surface pain, and my tumor was very close to the surface. Thanks again for your input!

  • Melissa, since you have metastatic cancer and a special needs child, you might qualify for more services, and income, than a person with just one of those! Both financial programs and practical care assistance. And I wonder if a physical therapist could help you learn the best ways to lift your son, given your surgery. I'm under the impression that kids with special needs sometimes qualify for Medicare themselves, plus Medicaid if the family income qualifies. If you are like me, it can be difficult to ask for help, but you and your family are going to have long term issues and planning in advance can be really helpful rather than waiting for a crisis and having to make major decisions without time to gather info and talk to others...... I was 58 with grown self supporting kids when diagnosed and it was a blow. I can only imagine what it must be like to have a young child and this diagnosis! It makes me sad and angry that younger women, like you, and women with children who still need them, get this lousy cancer! Best of luck to you!

  • Hi Melissa, My gut reaction is that this is probably normal and nothing but I am a worrier. If it were me, I would get it checked, or at least mention it to your breast surgeon. Even starting with a visit to your GP might dispel your fears, who might say, "Oh, that's probably ____."

    That really sucks about the in-network breast surgeons being so far away. Our wonderful changing healthcare system. I just found out that my insurance Emblem Health/HIP went through a recent metamorphosis, lots of providers are jumping ship, including some of mine. We shouldn't have to worry about things like this in addition to our health challenges!

    Please keep us posted and wishing you the best, as always!


  • Hi Melissa,. Yes I experienced intermittent pain , but it never turned out to be anything to worry about. I put it down to phantom nerve pain.

    Hope you are ok

    From Louise

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