Beyond Oncology Massage: Specialized Breast Cancer Recovery Care After PT or OT

There's a conversation we have with breast cancer patients all the time, and after hearing some version of it again and again, we think it is worth talking about.

Usually, the patient has already done all the things she was supposed to do. Surgery is behind her. She may have finished radiation. Reconstruction might be complete or at least well underway. She's been to physical therapy or occupational therapy, sometimes with an excellent therapist who helped tremendously with range of motion, strength, cording, swelling or other issues that came up during recovery.

Eventually, though, she's discharged. Maybe she met her rehabilitation goals. Maybe she is back to doing the things she needs to do every day. Maybe insurance isn't covering additional visits. Sometimes she's transitioned into a hospital survivorship program where she can continue accessing supportive services such as PT, OT, nutrition, acupuncture, massage and other care.

But something is still bothering her.

Maybe the cording never completely resolved, or it came back. Her chest still feels tight. Her reconstructed breast is becoming increasingly firm. There is an area of fibrosis after radiation that bothers her. A scar pulls when she moves a certain way. Her breast or chest feels swollen or heavy. She has changes in sensation she doesn't understand. She is worried about lymphedema.

Sometimes she tried massage through a survivorship program because that was the next place she was referred, only to realize that what she needs isn't really a massage. Sometimes her PT helped tremendously with one concern, but there simply wasn't enough time in the appointment to address everything else that was happening. Sometimes she has been discharged from rehab because she met her functional goals, but she doesn't feel like her body is "back to normal".

So she starts searching.

She searches for someone who understands cording after a mastectomy. Or breast swelling after reconstruction. Or radiation fibrosis. Or capsular contracture. Or lymphatic drainage after breast cancer. Sometimes she isn't even sure what to call the thing she is experiencing. She just knows she's still having a problem and the places she has already been haven't quite addressed it.

That is how a lot of breast cancer survivors find us.

And after hearing these stories over and over again from patients throughout Greater Cincinnati, we started realizing there is a gap worth talking about.

Finishing breast cancer PT or OT doesn't necessarily mean your body is finished recovering

We want to be really clear about something from the beginning. We are not an alternative to physical or occupational therapy.

PT and OT can be incredibly important after mastectomy, lumpectomy, lymph node procedures and breast reconstruction. Depending on the provider and their training, breast cancer rehabilitation may address shoulder mobility, strength, posture, range of motion, scar restrictions, axillary web syndrome or cording, swelling, lymphedema and the functional changes that can follow breast cancer treatment.

There are patients we see at node & needle who need PT or OT, and we tell them that.

But rehabilitation has goals, and at some point many people appropriately meet those goals. You can reach functional range of motion again. You can get dressed, reach into the cabinet, exercise, return to work and complete your normal activities of daily living.

That doesn't necessarily mean every change in your breast, chest, scars or lymphatic system has disappeared.

Breast cancer recovery doesn't happen on a neat timeline. Tissue continues to remodel. Radiation-related changes can evolve. Reconstruction can introduce its own long-term considerations. Scar tissue changes. Sensation changes. Swelling can change.

Sometimes the thing bothering someone today isn't even the thing that sent her to PT six months ago. That is where we come in.

So where does specialized breast cancer recovery care fit?

Honestly, this is where the terminology gets a little messy because there isn't a perfect category for what we do.

At node & needle, we are Licensed Massage Therapists. We are not physical therapists or occupational therapists, and Recovery & Renewal™ is not a substitute for PT or OT when rehabilitation is needed. But it isn't conventional massage, either.

In fact, patients who have experienced all three sometimes tell us that the work we do feels much more similar to portions of the specialized breast cancer rehabilitation they received in PT or OT than it does to the massage they later received through a survivorship program.

That makes sense to us.

A physical or occupational therapist working in breast cancer rehabilitation may be thinking about cording, scar restrictions, range of motion, swelling, fibrosis and the functional effects of surgery and radiation. A Certified Lymphedema Therapist may also be thinking specifically about changes to the lymphatic system, lymphedema risk, swelling and appropriate lymphatic interventions.

Those are many of the same problems we have been specifically trained to recognize and work with as well.

The difference is in what each professional is licensed and trained to do about them. We aren't performing physical therapy. We aren't providing occupational therapy. We aren't diagnosing complications or taking over medical management. But our advanced training in breast cancer recovery and lymphatic care means that when someone comes to us after mastectomy, lumpectomy, lymph node surgery, radiation or reconstruction, we aren't simply thinking about how to modify a massage because she has a history of cancer.

We're thinking about what happened to her body because of that treatment.

Is there cording? Capsular contracture? A Mondor's cord or line? Fibrosis? Restricted range of motion? Iron Bra Syndrome? Chemotherapy-induced peripheral neuropathy? Breast or chest swelling? Scar restriction? A known lymphedema diagnosis or lymphatic changes that need further evaluation?

And then we determine what, within our training and scope, is appropriate to address and what needs another member of the healthcare team. That is a very different starting point from, "What kind of massage would feel good today?"

Oncology massage and breast cancer recovery work aren't the same thing

This is probably the biggest misconception we'd like to clear up. We've talked with quite a few patients who were referred for massage through a cancer survivorship program after finishing more traditional rehabilitation. Sometimes they had a wonderful experience. We don't want to discount that at all. Oncology massage is a valuable specialty, and having a therapist who understands how cancer treatment, surgery, radiation, medications, fatigue, altered sensation and lymphedema risk may change a massage session absolutely matters.

But sometimes a breast cancer survivor isn't actually looking for a massage. She's looking for help with a complication.

That distinction sounds obvious once we say it, but it can be surprisingly difficult for patients to navigate. Someone may be referred to massage through a survivorship program because formal rehabilitation has ended. She books the appointment because she still has cording. The massage therapist may be perfectly competent at oncology massage and still not have specialized training in axillary web syndrome.

Someone else may be dealing with breast or chest edema and need Manual Lymphatic Drainage rather than a conventional massage. Another person may have restrictive tissue following radiation, a reconstructed breast affected by capsular contracture, significant scar restriction or another issue where massage techniques might be one part of what is appropriate, but simply receiving a massage isn't necessarily the same thing as receiving care specifically directed toward the complication she came in with.

This is something we hear from patients themselves. Some have been very happy with massage services offered through survivorship programs. Others tell us they were frustrated because the therapist wasn't trained to work with the particular complication bothering them.

Neither experience tells us whether the massage therapist was good at what they were trained to do. It tells us that oncology massage and complication-focused breast cancer recovery care have different purposes.

Cording after breast cancer surgery is a good example

We hear about cording, or axillary web syndrome, more frequently than anything else.

Sometimes a patient already knows exactly what it is because her PT identified it and worked on it. Other times she'll come in saying something like, "I have this weird string under my arm," and she has no idea there's actually a name for what she's feeling.

Cording can happen after breast cancer surgery and lymph node procedures, and it can show up as a tight, cord-like structure through the axilla, arm or even across the chest. Sometimes it's uncomfortable. Sometimes it isn't. But it can absolutely affect movement and range of motion. This is also a really good example of why we don't think patients should have to choose between different kinds of care.

If someone's cording is significantly limiting her shoulder function or range of motion, PT or OT may be exactly where she needs to be. We aren't trying to replace that.

But what if she also has breast edema? Scar restriction? Fibrosis? What if PT is doing a great job working on the cord and her range of motion, but there's only so much time in an appointment and she also needs Manual Lymphatic Drainage for swelling?

We've had patients describe exactly that situation. And sometimes they've already finished PT. Their range of motion is functional, they've met their rehab goals and they've been discharged, but the cord is still there or comes back later.

That's where the lines between rehab, lymphatic work and specialized hands-on breast cancer recovery can get a little blurry. We don't think the answer is trying to decide which profession "owns" the problem. Sometimes the answer is simply having more than one person on the team, with each provider doing the part they're especially well trained to do.

Recovery & Renewal™ uses more than one tool

This is why describing Recovery & Renewal™ as "breast cancer massage" is technicially incorrect.

It isn't a massage.

Massage techniques are certainly part of what we may use. Manual Lymphatic Drainage may be part of it. We also use other techniques and approaches from our breast cancer recovery training depending on what's actually going on with that particular patient.

There's no standard Recovery & Renewal™ routine that everyone gets.

Someone who's primarily dealing with breast or chest swelling may have a session with a significant lymphatic focus. Someone who's dealing with cording and restricted movement may have a completely different session. Another patient may have fibrosis, scar restriction or changes around a reconstructed breast that become the priority that day.

And honestly, it's pretty common for more than one of those things to be happening at the same time. That's one of the reasons this work can fit so well alongside PT or OT.

A patient's physical therapist may need to spend most of an appointment working on shoulder function and range of motion. There may not be enough time to also spend significant time on Manual Lymphatic Drainage for breast or chest swelling. Or maybe she's already met her functional goals and finished PT, but she's still dealing with tissue restrictions, swelling, cording or another issue that hasn't simply disappeared because rehab ended.

We don't see these services as competing with each other. Ideally, they're different pieces of the same recovery.

There are times when PT or OT should take the lead. There are times when someone needs more comprehensive lymphedema management. There are times when something new or concerning needs to go straight back to the physician. And there are times when formal rehabilitation is finished, but there's still work we can appropriately do.

Figuring out which of those situations we're looking at is part of the work, too.

Lymphatic drainage after breast cancer is different from general lymphatic massage

This one matters a lot to us. Someone who's had breast cancer surgery shouldn't automatically be treated like a general wellness lymphatic client.

A sentinel lymph node biopsy, axillary lymph node dissection, radiation, mastectomy, lumpectomy and reconstruction can all change what we need to think about when we're working with the lymphatic system. And breast cancer-related lymphedema isn't limited to the arm. Swelling can show up in the breast and chest wall, too.

So when someone with a breast cancer history comes to us, we want to know the history.

Which side? What surgery did you have? Were lymph nodes removed, and if so, from where? Did you have radiation? What type of reconstruction did you have? Have you ever been diagnosed with lymphedema? Where are you noticing swelling or heaviness now? What do the scars look and feel like? And what do we actually feel when we're working with the tissue?

Those aren't just boxes we're checking on an intake form. They can change what we do.

It's also why we don't simply put a breast cancer survivor into Brazilian Lymphatic Drainage or another general wellness lymphatic service because "lymphatic drainage is lymphatic drainage." It isn't.

The lymphatic system has been part of her cancer treatment story. We need to understand that story before we decide how we're going to work with it.

Sometimes people are just ready to be out of the hospital

There's another part of this conversation that doesn't have much to do with technique, but we hear it often enough that it's worth talking about. Greater Cincinnati has hospital-based cancer survivorship programs that offer all kinds of supportive care, and those programs can be wonderful resources. Some of our patients have been very happy with them. Others tell us they're simply tired of going to the hospital. And that's understandable.

After months or years of driving to appointments, navigating giant parking lots or garages, finding the right building, checking in, sitting in waiting rooms, changing into gowns, having blood drawn, being scanned, being examined and waiting for results, going back into that environment can feel different than it does to someone who hasn't lived through cancer treatment.

Some survivors really like the comfort of keeping everything within the same healthcare system. Others reach a point where they want the parts of their life that happen after cancer to happen somewhere that doesn't remind them quite so much of cancer treatment.

Neither response is wrong. We just think there should be another option.

Part of what we've created at node & needle is a place where someone can receive very specialized breast cancer recovery care without feeling like she's back in a medical setting again. That matters to some people more than we ever expected it would.

The experience of receiving care matters, too

The background behind node & needle includes mental health, grief, trauma and somatic work, and that's influenced the way our entire practice approaches breast cancer recovery. Cancer treatment requires people to tolerate an extraordinary amount of touch, and so much of it is medical touch.

Exams. Needles. Imaging. Surgery. Drains. Dressing changes. Radiation positioning. Scar checks. More exams. More people looking at and touching a part of the body that may already feel profoundly changed.

By the time someone reaches survivorship, she may be medically healed and still notice herself bracing when someone reaches toward her chest. We don't diagnose that response, and we don't make claims about massage "releasing trauma." But we absolutely pay attention to it.

We explain what we're going to do. We ask before moving into another area. We notice when someone's breathing changes or her body starts guarding. We care about pacing, positioning, pressure, warmth, lighting, sound and privacy. If someone needs a minute, she gets a minute.

For some patients, this is also the first time touch around the breast or chest has happened outside of a medical environment since cancer treatment began. We don't take that lightly.

The goal isn't to make specialized breast cancer recovery feel more clinical just because the work itself is specialized. We want someone to be able to receive knowledgeable, thoughtful care for a body that's been through a lot without feeling like she's back on an exam table.

For us, that isn't separate from the treatment. It's part of providing good treatment.

When should someone come to node & needle for breast cancer recovery care?

There really isn't one perfect point in recovery. Some of our patients are still actively seeing PT or OT when they start working with us. That can work really well because the two appointments may be addressing completely different things.

Others find us right around the time they're being discharged from rehab. They've met their functional goals, but they're still dealing with cording, swelling, scar restriction, fibrosis, tightness or changes after reconstruction that haven't magically disappeared just because PT ended.

And then we have patients who find us years later. Those are sometimes the stories that stick with us the most.

Someone may have spent years assuming the pulling, swelling, firmness, strange sensation or tightness she still feels is simply part of having had breast cancer. Nobody necessarily told her that. She just didn't know there might be someone else to ask.

Sometimes what she's experiencing is something we can work with. Sometimes we want her back with PT or OT. Sometimes something needs to go back to her surgeon, oncologist or another member of her medical team.

And sometimes the first appointment is really just about sorting that out. What's going on now? What's changed? What's bothering you? What have you already tried? What falls within what we do, and what doesn't?

You don't have to know the answers to all of that before you come in. A lot of people find us because they're still trying to figure out the exact question.

What should you ask when looking for care after breast cancer?

We'd actually ask something more specific than, "Are you oncology massage trained?" Ask about the thing you're experiencing.

If you have cording, ask whether the provider has specific training and experience working with axillary web syndrome. If your breast or chest is swollen, ask about their experience with breast and truncal edema and what lymphatic training they have. If you've had lymph nodes removed or you've been diagnosed with lymphedema, ask about their training in lymphedema and Manual Lymphatic Drainage.

If you're dealing with significant scar restriction, radiation fibrosis, a reconstructed breast that's becoming increasingly firm, capsular contracture, or sensation that's changed in a way that concerns you, tell them that before you book. Ask whether it's something they routinely work with.

And pay attention to whether they're comfortable telling you when something isn't theirs to treat. A good provider should be able to say, "We want you to call your doctor about that," or, "We think you need to go back to PT for this."

We say those things. Because having specialized training doesn't mean believing everything belongs on our table. Sometimes the most important thing we can do is recognize when it doesn't.

Breast cancer recovery can include restoration, too

There's another part of survivorship that happens even later for some people. For patients who've lost the nipple-areola complex during mastectomy or reconstruction, the later stages of recovery may include deciding what restoration looks like for them.

For some, that includes 3D areola restoration tattooing.

node & needle also provides paramedical 3D areola restoration for breast cancer survivors who've healed sufficiently to move forward after their final surgery. Right now, we offer this work at our Milford location, with plans to bring it to Terrace Park once our expansion is complete.

It's obviously a completely different service from the hands-on work we do in Recovery & Renewal™, but there's a reason it feels like it belongs here. We already understand the history behind the breast we're working with.

We understand scars, reconstruction and altered sensation. We understand that getting to this point may have taken multiple surgeries and a very long time. And we understand that not everyone wants nipple-areola restoration at all.

For those who do, there's something really meaningful about being able to move from recovery-focused care into this final restorative piece without having to start over and explain the entire story again.

It's one more way breast cancer recovery can come full circle.

If you or someone you love would like more information about the node & needle approach to care, please visit us online or schedule a consultation.