Pain, tenderness return 10 months after lumpectomy: What does it mean?

I had surgery for right breast invasive lobular carcinoma in February. The pain has returned. I wear a c cup normally. My right breast is now a D. I go back to the oncologist Tuesday. I have very many questions to ask her when I go.

Hi Chl71…. The breast I had surgery on was left smaller and that’s still the case. I just have more pain again after all this time. Surgery was in September of 2023. Pain is almost like when I had the surgery, on and off kind of. Just way more sore all the time. Dr said she’s stepping up mammogram. Why can’t they skip that and do an ultrasound as I have dense breast anyway.
Left worrying,
Glenda from Florida.

@clh71, how did your appointment go with the oncologist? Did you get answers to your questions?

It is Lymphedema and I cannot remember the other word that was used. I have been trying to find someone with Lymphedema training all afternoon. Most Physical therapists do not have that training.

The other issue/word you could be thinking of is cording. That affects the arm and the breast with pain & lack of mobility. If you had a nurse navigator with your surgeons office or a social worker, they should have a list of PT office that specifically do lymphedema treatment so you aren’t stressed to find one on your own.

I meant to ask also if you had any radiation? There is radiation induced necrosis that can cause pain & swelling, that may have been the other issue.
Either way, so glad you reached out to your oncologist to get on this sooner than later. I hope you are able to get answers & treatment quickly. I have not been diagnosed with lymphedema, but I have had swelling issues so I wear a compression sleeve & gauntlet on my hand every time I exercise & ride on an airplane as a preventative measure. Hopefully after you are over this bout of lymphedema the compression garments will keep it managed.

I am praying your mammogram is a negative result.

As for the pain and swelling, I had 20 radiation treatments after a partial mastectomy. About 10 months later, I was having tenderness and terrible pain & aching in that breast, the ribs just below the breast and under the arm, as well as new reduced range of motion in that arm after almost a year of healing from radiation. CT scan & mammo were clear. My surgeon said I had radiation-induced fibrosis. It’s when muscles, tendons, ligaments & skin get damaged and hardens, basically creating scarred tissue as a result of radiation therapy. It causes range of motion issues, pain, tightness, and sometimes skin changes. We tried Meloxicam and it didn’t help much and I didn’t like more potential medications & their issues as well. I was on this site when someone mentioned ‘swell spots’. They are a form of compression padding that gently puts pressure on the fibrosis spot and begins to break it up so it isn’t pulling & tightening that area, which is what is causing the pain, etc. I found some on Amazon, but wasn’t sure which size I needed, so I found a nurse’s blog who suggested a home remedy. I tried that and it worked perfectly!!! I wore my standard compression bra from the early days after surgery (Prairie Wear brand is what I have, zippers in the front) every time I was home until the pain went away (now I wear it a couple nights a week) I put a folded up men’s athletic sock, a thick one, like 3-4 inches when it’s folded in it at the side of my breast where my tumor was removed. It doesn’t hurt at all, the sock flattens a bit. It’s just gentle constant pressure and it breaks up/stretches the area and relieves the pain. I have since found that a ‘knitted swim knocker’ works easier. It has thick stuffing than a regular knitted knocker & gives perfect pressure. I got mine from my nurse navigator, but their website is http://www.knittedknockers.org. If it turns out that is your issue, these saved my life!
I also use their regular knitted knockers everyday in my bras. They breathe, washable and have no weight to them like normal prosthetics. You can adjust the filling inside to fit you. Fabulous invention and all made by volunteers and they are free to order.

I had right upper extremity lymphedema following mastectomy in 2019. My journey with Lymphedema has been long and extensive. There are a few specialists, and some areas physical therapists are used for massage to help with lymph drainage, and some areas occupational therapists are used for the same. Very very few doctors are truly Specialists in Lymphedema. Interestingly plastic surgeons are the general group where you will find some super Specialists who perform testing and sometimes surgery for Lymphedema. I’m not sure where you live but if you do a web search for Lymphedema surgery, not that you’re planning at all to have any surgery done!, You may find a plastic surgeon who is better able to evaluate your current condition whether you have surgery or not. And I am not suggesting the pursuing surgery is the right thing for you!. I was spinning my wheels with my right arm for over a year Religiously attending occupational therapy using a pump using massage, wearing compression garments. My arm only got worse. A friend of a friend mentioned to me. There was a test that would tell exactly exactly what my lymphatic function was. I had never heard of such a thing. No one had ever suggested to me that a test be done and I had been an active treatment For the Lymphedema well over a year. So I did the web search super specialist and scheduled the appointment. But even to schedule the appointment I had to call and talk to their office and answer many many questions. It was evident to them that I needed to at least have a dye test. So I got an appointment for that consultation. I think over the past five years many more cancer facilities are offering tests for patients with Lymphedema. The test will show if there is blockage in your breast area that is preventing the lymph fluid from draining. My case a test in my arm showed that I had absolutely no lymphatic function left in that arm at all. as a result of that, I was eligible to have a VLNT transfer of lymph nodes were removed from my abdomen and carefully stitched into my right arm, connecting these lymph nodes to the blood supply. I think one of the biggest problems at this point, and it is probably improving, is that they really aren’t super Specialists, or are very few, and Lymphedema. Therapist will help with swelling and blockages when you have some lymph function left. But for patients who have a total blockage or have totally lost lymphatic function, patients require super specialist MD. That in my humble opinion has been the biggest missing link. Some of the bigger facilities that do have such Specialists are the major cancer centers, MD, Anderson, and Texas, the Cleveland clinic, Mayo clinic, the James Cancer Center in Columbus, Ohio, rush in Chicago, and probably more that I don’t know about. Best thing I ever did was the web search and making the call to the super specialty department that I did. That started the road to improvement in my arm and with my lymphedema. I shut her to think where I would be now, almost 3 years later with absolutely zero lymphatic function in that arm. How big would it be? How many hospitalizations for cellulitis?. Instead I have a pretty healthy right arm. There’s a small area around my elbow where there are still some blockages and I will touch base with the plastic surgeon this fall and likely have another surgery to put stents in that part of my arm.

If you haven’t had testing, I always call at the dye test And they were various names for the testing. But essentially what they do is inject a dye into the area of concern, and then scan it with a wand that will hopefully show the lymphatic system moving the DYE into your system. If it moves and then stops, it’s showing them exactly where the blockage occurs. In my case, it didn’t move at all so it showed that there was no lymphatic function at all. if you haven’t had such testing, you may want to where you can have this testing done. Good luck! I’m not sure about Lymphedema that is strictly contained in the breast itself, but I would suspect that the super specialty plastic surgeons or if there are other members of that group at the level of a medical doctor specializing in Lymphedema they will know. Problem is finding one! They are out there.

Yes, I had radiation. The problem is lymphedema and fat necrosis. Thanks for your kind reply, Lynn

It is Lymphedema and necrosis. There are thousands of Dr.s and physical therapists near me but so far, I find no one who does Lymphedema work. I might have to try a regular massage therapist, but it probably would not be covered by insurance.
Thanks for your support, Lynn