Dealing with a Breast Cancer diagnosis

I was dealing with a very frustrating shoulder injury – a rotator cuff tear, labral tear and bone marrow edema and had been through a couple of months of physical therapy (PT) without improvement. I couldn’t really lie down on my left side, and at one point when I was trying to get comfortable in bed, I felt a slight pain in my left breast that felt like I had been scratched. I have some exuberant dogs, so I figured one had scratched me when jumping on me. I didn’t see anything. A couple of days later, I saw a slightly raised bit of tissue near my left nipple. When pushing on it, it felt firm. When I got my very first breast exam as a teenager, I remember my doctor said “if a lump feels like a grape, it’s probably fine. If it feels like a frozen pea, you need to get it checked out.” It felt like a tiny frozen pea so I knew I had to get this looked at.

My mother died from a brain tumour. My mentor died from cancer. My mother-in-law had just been diagnosed with cancer. I am absolutely cancer-phobic. I get all the checkups when they’re advised. I looked through the internet to try to find my situation and match it to breast cancer, or something else. It definitely wasn’t textbook. But I knew it wasn’t right. 

I made an appointment with my gynaecologist, who said she didn’t think it was anything to worry about and certainly not breast cancer, but she referred me to get a diagnostic mammogram and ultrasound. It took several weeks to get in. The mammogram and ultrasound didn’t show anything. The radiologist said he didn’t think it was cancer - that it looked more like a skin lesion, and recommended I just go to a dermatologist. I made an appointment as soon as I could, got a biopsy, and got the results about two and a half weeks later.

I was in my studio doing my shoulder PT exercises. I had on my list to call the dermatologist to follow up again on results that had been delayed. She called almost at the exact time I had the reminder set to call her. She read through the diagnosis - invasive ductal carcinoma, grade 2, and she kept talking. I didn’t really hear the rest. I ended up calling back a couple of hours later asking the office to email me the report. 

I told the dermatologist that I didn’t know what I was supposed to do next. Did I need an oncologist first? Who did I need to see, and could they recommend someone?

So as appointments started to fall into place to deal with this I started to write down what was happening, and when, because it always felt like everything was taking a long time.

-       That first painful tinge was late February 2023.

-       Gynaecologist - March 6.

-       Diagnostic mammogram and ultrasound - March 24.

-       Biopsy - March 30.

-       Diagnosis - April 17.

-       First oncology visit - April 20.

-       DEXA scan (cancer likes to spread to bones, so they want to check your bone density) - April 24.

-       Breast MRI - April 27.

-       Results of those last two tests - May 1.

-       Meeting with breast surgeon one - May 3.

-       Meeting with plastic surgeon one - May 3.

-       Meeting with breast surgeon two - May 4.

-       Physical (pre surgery) - May 8.

-       Meeting with plastic surgeon two - May 10.

-       Meeting with plastic surgeon three (the one I went with) - May 16.

-       Surgical pre-operation appointment -  May 17.

-       Double mastectomy with immediate reconstruction - June 5.

-       Results of lymph nodes test - June 9.

-       Results of Oncotype test (cancer DNA which indicates benefits of chemo) - July 3.

Need I say anymore? The toughest part for me was the waiting. There is SO much waiting where you don’t know how bad it is. You are waiting for appointments. You are waiting for surgery. You are waiting for test results. You are waiting to find out if it has spread. Depending on what type you have, you wait to find out if you need chemo or radiation or other medication. You wait for more test results. The entire time you feel like you have a time bomb inside you. In my case, I could feel the cancer, and I could also feel it getting bigger. It went from 1 cm in size to nearly 2 cm by the time it was removed. (Of note, once it is 2 cm, you’ve crossed a threshold from stage 1 breast cancer to stage 2 breast cancer, regardless of whether it has spread outside of the breast. That is largely semantics, but it felt like a really big deal to me).

There’s also so much planning and coordination required to even get through these steps above. For example, one of the biggest challenges in having a mastectomy or lumpectomy with reconstruction – is getting two doctors available at the same time, the surgeon who removes the cancer and the plastic surgeon who puts you back together. Plus you need their schedules to align WITH an available operating room. I was extremely lucky to have a VERY good team.

The reason I met with three plastic surgeons is that I wanted to do a direct-to-implant surgery, and most surgeons do expanders (aka spacers) which they slowly fill over months and then you have another surgery to remove the expander and place the implant. Only one doctor would promise me that he wouldn’t do that. (Of note - he insists it’s the quality of the surgeon who removes the breast that matters because she has to prep to skin/tissue for his work.)

Although I could have done a lumpectomy, that includes radiation, and having had some clients who had radiation damage from that exact thing, I always knew that if I got breast cancer, I would do a mastectomy. And for symmetry and the fact that I had fibrous breast tissue which was hard to read on mammogram, it made sense for me to do both. I think it’s also important to note that it is not a guarantee that breast cancer won’t come back in your body…that was news to me. 

Oddly, for me, it really wasn’t that painful considering it was a double amputation. I did feel very tired and more uncomfortable than anything. You have to sleep elevated, and for the surgery I had, there were drains to collect fluid. I have a friend who also had a double mastectomy who said she couldn’t stand upright for weeks. I didn’t experience that. I wasn’t allowed to lift my arms for a couple of weeks, but I never felt like I couldn’t. 

I was restricted from all ‘traumatic physical activity’, which expressly included arm exercise, lifting anything heavier than 10 pounds, and vacuuming, for six weeks. And I had the worst increase of multiple sclerosis (MS) symptoms than I have had possibly in my life. I ended up in the hospital for several days because of that. I am still angry because by having Breast Cancer it impacts my treatment options for MS, which I have had to deal with for 20+ years. It's also delaying recovery for my shoulder injury. Plus, it's scary. More than anything it’s been a mental battle for me. The plus side is I’m back vacuuming again and that never felt so good. Who knew that would be a thing?

As part of my recovery, I found Pilates was so important because it’s always adjustable. I started doing leg exercises after about a week - just little things like seated footwork on the chair or standing leg springs on the Fuse Ladder. I couldn’t lie supine for a couple of weeks, so beloved reformer leg circles were out. But I could do other things. Once I could start using arms, I chose closed chain exercises that I had more control over because post-mastectomy - everything feels incredibly tight so you want to manage how big your movements are (and how heavy they are).

I’m three months post-surgery and I’m really getting the most from the feedback of the equipment with the assistance of (a very controllable) amount of gravity. I need to focus most on recovering my range of motion, but again, my surgeons were excellent. I only feel a slight pull at this point when I reach my arms up or out to the side. I still have the shoulder injury, which is a bigger mobility problem than the mastectomy. I also did lose some strength/muscle mass in my upper body, but if you go into a procedure strong, your recovery is easier. I’ve had multiple major surgeries, and I’ve always been able to recover pretty quickly because exercise is a regular part of my life.

My favourite exercise is actually using the Fuse Ladder to do slightly weighted arm flexion. I hold a higher rung with the side I want to stretch and a lower rung with my “control arm.” My feet are on the floor. I then sink my weight down and stand up - sort of a dynamic range of motion closed chain exercise for the arm on the higher rung. I’ve started doing open chain with my right arm, the non-injured side. I hang an arm spring really high and retract and protract my shoulder blade, sometimes kneeling upright and sometimes folded over at about 45 degrees. I’m doing lots of rows with springs and weight. Lateral flexion feels great.

While I’m still working through my recovery, there are also some tips I have for other instructors working with those diagnosed with Breast Cancer.

·       Keep in mind there are lots of different types of surgeries. Often people have breast reconstruction using tissue from other parts of their bodies

·       It’s not uncommon for doctors to use muscles (like the lat) to rebuild the breasts from lumpectomy or mastectomy. Although doctors might say full arm function will be recovered, be mindful that an important stabiliser has been altered

·       If a person has radiation, the skin is often very tight and damaged

·       In almost all breast cancer surgery, the doctor will remove some lymph nodes to see if the cancer has spread outside of the breast. 20% of people who have lymph nodes removed will develop lymphedema, where the arm will swell, become painful, and sometimes be difficult to move. You cannot predict who will get this

·       Our clients need to be careful not to lift things that are too heavy before their doctor clears them for movement

·       There are online resources of suggested exercises (and what not to do) for lymphedema, as well as specialists in treating it through massage and exercise 

And finally, your client has gone through an emotional rollercoaster. I personally have never been as afraid or cried as much as I did in the month leading up to my surgery. So support them as best you can.

Mariska first found Pilates after she was diagnosed with MS in 2002. Mariska first studied Pilates mat training with Power Pilates in 2005 and completed her comprehensive training with BASI a couple of years later. She did a multi-year mentorship with Julian Littleford before his death in 2013 and owned studios in Washington, D.C. from 2010-2020, and now teachers for and is the co-founder of the Neuro Studio, and is creator and co-owner of Fuse Ladder.