Anyone experience regional recurrence of stage 1 ER+ BC < 5 years?

Posted by gldilli @gldilli, Jan 18 9:36am

I’m two years past surgery and treatment for stage 1 IDC ER+ bc. I’m having some symptoms in my underarm, arm and around base of my breast that are a little troubling. What have other people experienced at this stage in their journey? Has anyone experienced a regional recurrence of early stage bc?

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sarahmh | @sarahmh | Jan 24 10:24am

In reply to @gldilli "I got my appt moved up to 5 Feb." + (show)

Oh, that is wonderful! I feel kinda bad for being so pushy, but I really, really believe sooner is better. Thank you so much for keeping me posted! I will be thinking of you.

timely | @timely | Jan 24 2:38pm

Hi @sarahmh

Please share what exercises you are doing for breast lymphedema.

If you are doing manual massage, how long does it take daily?

Is your sell spot just a partial insert in bra or fill the entire bra…?

I also have breast lymphedema….

cashemire | @cashemire | Jan 24 4:27pm

In reply to @maliamd "Yes. 4 years post Stage 1. Radiation and lumpectomy done. Now 4 years later spread to..." + (show)

@maliamd
So sorry to hear this, about the spread. Were you taking an AI and if so which one? Do you know the grade of your original tumor? I just met with my oncologist, yearly checkup and asked why I was in the 2% of local recurrences and she pointed out mine was grade 2.

maliamd | @maliamd | Jan 24 5:51pm

In reply to @cashemire "@maliamd So sorry to hear this, about the spread. Were you taking an AI and if..." + (show)

I was on Femara for 3.5 years when they found the spread. Grade 1, no lymph node involvement. Healthy lifestyle and avid runner.
I now take statistics with a grain of salt.

cashemire | @cashemire | Jan 24 7:33pm

In reply to @maliamd "I was on Femara for 3.5 years when they found the spread. Grade 1, no lymph..." + (show)

that sounds so unreal, that yr bc was grade 1, stage 1, no positive nodes, you had rad etc… do the doctors have any explanations?? no family cases either?
are you pre or post menopausal? sorry for all the questions, i just dont understand this

maliamd | @maliamd | Jan 24 9:15pm

Had radiation. No family history. 71 yr. The docs were shocked when they saw. I never should have met with my findings and history. But it is what it is. There is still so much to learn about breast cancer. My take away is that you are never in the clear once having breast cancer no matter what your findings are. Everyone must diligently watch yourselves the rest of your life. You must be your own advocate.

cashemire | @cashemire | Jan 25 8:01am

In reply to @maliamd "Had radiation. No family history. 71 yr. The docs were shocked when they saw. I never..." + (show)

yes you are absolutely right, thanks for sharing yr experience as this is an important reminder. Some things are beyond our control. Wishing you well, many new meds for mets I have read. (we are similar age, i am 72)

sarahmh | @sarahmh | Jan 25 10:18am

In reply to @timely "Hi @sarahmh Please share what exercises you are doing for breast lymphedema. If you are doing..." + (show)

Oh, I'm sorry you have breast lymphedema, too. My case is thankfully very mild, probably because my breast surgeon was so proactive. We did a baseline SOZO before my lumpectomy and sentinel lymph node biopsy, and then again after. It didn't detect any lymphedema, but the physical therapist who saw me also did a very thorough examination and noticed the beginning of breast lymphedema (I had minor swelling of the breast, and 'orange peel' skin). She taught me some exercises, but I honestly haven't done them for ages, because I now do a class called Healthy Steps, which has most of the same moves. The physical therapist also made me a DIY swell spot, and I just make new ones as they get grubby. Mine is about the size of a credit card, and I just randomly move it around to different spots inside my bra. I would like to order an actual Swell Spot that covers my entire breast, though. I also wear a tight-fitting sports bra at all times (I've always slept in soft bras with no underwire anyway, it's just more comfortable for me since I have big, floppy boobs). The PT did try using kinesiology tape cut into a long, octopus-type shape, but my skin hates almost all adhesives and it gave me a rash. I see my breast surgeon's NP every six months and she always checks out the lymphedema. As I lay on my back, she will do very gentle massage directly on my breast for only a minute, and we can see immediate results. I should do massage myself at home; I would guess only five minutes per day would yield great results. Here are some links to all this:

Kelly Reed is a PT with lots of great YouTube videos about breast lymphedema. Here's one that shows some exercises:
https://www.youtube.com/watch?v=XQwqsP06Dkc

Here's one about DIY swell spots:
https://www.youtube.com/watch?v=hqqCLy8wJbk

One about using K-tape:
https://www.youtube.com/watch?v=eGKrK0ABjzw

And massage:
https://www.youtube.com/watch?v=zSXIcxwkc6A

This is a link to Healthy Steps:
https://www.gohealthysteps.com

I'm still kinda worried about developing worse lymphedema because it can appear years after cancer treatment, so I also do easy things like getting blood draws and pressures done only on the unaffected side, and wearing a compression sleeve while flying. But the tight bra, Healthy Steps class, and DIY swell spot are doing great for me so far.

Good luck!