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Judy Stokes

You’re always told to “check the girls” on a regular basis for lumps.

Honestly, I never really checked that regularly. After all, I’m young, I get annual mammograms,  I’ve breastfed three children, I don’t smoke and I’m not overweight. But one year ago on October 11, 2012, I stumbled upon a lump.

Both my husband Cliff and I were nervous, but I went through the steps of getting it checked out by my gynecologist.   That seemed like a good place to start.  Little did we know it was the beginning of a year’s unbelievable journey.  My gynecologist could also feel the lump, so I was sent for a diagnostic mammogram which was more detailed than my standard annual mammogram.

Ironically, the lump did not show up on the mammogram, which goes to show you how important those monthly checks really are. Fortunately, I was also written a script for an ultrasound, which showed something that the radiologist thought looked like a cyst.

Nevertheless, I was referred to a breast surgeon, Dr. Charles Butler, who attempted to drain it in the office.  When he was unable to remove any fluid, he decided to do a biopsy – just in case.  So a few days later, I returned for my biopsy, even though he seemed fairly certain that it was just a cyst.

Three agonizing days after my biopsy, my husband and I met with Dr. Butler for the results.

He shook my hand and said “you saved your life.”

Those were his exact words, and he said them in the most compassionate way.  My world would never be the same.

The biopsy was positive. It was cancer. Specifically, ductal carcinoma in situ (DCIS), meaning it was contained in the milk duct.

I was numb, shocked, stunned, scared, overwhelmed, and confused.  I felt as if my whole world was turned upside down.

I did everything you’re supposed to do to not get breast cancer.

Because I was so young, I was sent for genetic testing at Virtua to see if I carried the gene.

I have no history of breast cancer in my family—none at all. I sat with a very kind genetic counselor and went back through my family tree as far as we could.

Thank God I did not carry the “breast cancer gene”, which was a relief because I have two daughters and two sisters.

 

Almost immediately, I was referred to Dr. Priya Gor,
my medical oncologist.

Next, I was sent for a breast MRI at South Jersey Radiology Associates to check the rest of my breasts to see if it was anywhere else. Three other spots lit up on the MRI, so I had to have three more biopsies and they were all negative.

In the midst of getting bad news we were getting good news. This whole journey has been a mixture of good and bad news—just a constant ebb and flow of ups and downs.

Once we knew that I did not carry the breast cancer gene, and that the cancer was only at the one site, we had to make the decision as what to do.

With Dr. Butler’s help, we decided that the best bet would be a lumpectomy and a sentinel node biopsy, which I had done at Virtua Voorhees on January 4, 2013. They inject your breast tissue with a dye and watch to see where it drains and which lymph nodes it hits first. So instead of taking all of your lymph nodes they just look for and remove the sentinel nodes. 

A week after my surgery, we went back to Dr. Butler’s office and that’s when we received double bad news. There was still a positive margin left, meaning there was still cancer, and it was also found in two of my four lymph nodes.

This meant the cancer had spread and invaded breast tissue outside of the milk duct, so the diagnosis was invasive carcinoma.

At this point we were crushed.

My cancer went from something that was detected early and would be easily removed to now needing chemo, and I was going to need an additional surgery to clear the margin to the healthy tissue.  I was sent for an ultra sound of my chest, abdomen and pelvis but fortunately, there were no signs of cancer in my other organs. 

I went back into surgery on January 25 for a re-excision and to have a port put in for chemo.

After the second lumpectomy, there was still a positive margin, and we knew I needed another surgery.  At this point my oncologist decided to delay the third surgery and start chemo.   I began my chemo with Cliff by my side on Valentine’s Day.

The first round of chemo was very hard. I had to go every other Thursday for four rounds, which was eight weeks long.  I started losing my hair about two weeks into treatment.  It quickly went from a few strands here and there to handfuls.  So many survivors described how it would fall out, but it was a whole different ball game experiencing it for myself.  It was literally falling out of my head in clumps from the root.  I would brush through it to get all of the loose strands, but five minutes later I would have to repeat the process again.  At that point, I decided to have it shaved off since it was inevitable and there was truly nothing else I could do with it.  Part of me was relieved that the anticipation and worry was over – my hair was gone.

All along, my husband Cliff had not missed one doctor’s appointment, one surgery or one chemo appointment. He has been by my side the entire time. He has done an incredible amount of research on breast cancer, treatments, and nutrition – finding any information he could to help us through.  He is a laugh when I need it, a shoulder when I need it. We were married in May 1999 and he has been my rock.

I began the second leg of chemo in April and went every week for twelve weeks.  This round was easier physically for me.  Chemotherapy ended June 27.

I have had way more good days than bad days, and because I am very stubborn I didn’t want to miss anything. I even danced in a recital on June 7, 2013.

I’ve been dancing with Mulford Dance Studio since 1975 and that night we danced a military number and all the girls wore pink ribbons on their arm to support me.

I have continued taking lessons once a week. I’m still friends with some of the girls I met in childhood, and now our daughters all dance. They’re my dance family.

When chemo was over I had a month of rest. No chemo, no appointments. I was tired and taxed from the chemo. My hair was long gone. My nails were weak and brittle and my blood counts were low.  My body needed a break. I had a solid month off and went back in for a third surgery in August.

Now we were really expecting everything to be gone because I just went through all of that chemo, but we learned to expect the unexpected.

We went back to Dr. Butler’s office for the pathology results and learned I still had cancer.

There was still a small margin left, so they had to go back in.

All along the way, we’ve had choices. My doctors were supportive and medically, anything in the field was on the table and it was purely a personal decision. It’s always been up to us.

We discussed this at length with my radiation oncologist, medical oncologist, counsellor and breast surgeon at Virtua. We left no stone unturned, no option ignored.  This time, we thought we would just go forward with a mastectomy.

I honestly thought all the cancer would be gone by now. I thought we were done with surgeries. I’ve had seven months of opinions, research, praying and soul searching.

It definitely wasn’t an easy decision, but it was the right one for us. I decided they can take both of them, even though there is no medical need. My family has been through so much. We tried, but the time has come and the time is right and I have made peace with that.

I am scheduled for a double mastectomy at Virtua on Wednesday, October 30. By the time you read this, I will be recovering and looking forward to a cancer-free future with my family.

Before I had breast cancer, I thought of what I would do if I were in this situation. I always thought I would just have them taken off, but the decision is not that easy. There was a lot of thought and counseling that went into making that decision.  Cliff and I have been meeting with our counselor, Karen Atkins since February.  She guided us down the decision making path from a psychological and emotional perspective.  It’s a very personal decision and there were so many variables to weigh.  I know we made the right decision – it’s time.

I had a great team, led by my husband, doctors, nurses and a family counselor who helped us through this process.  I want to make it clear that this was not an easy decision, nor was it taken lightly.   

I just had the best all-around care. Every base was covered. I don’t know what else Virtua could have done to help me. They thought of everything.

I will still have to undergo radiation for four weeks after I heal from the mastectomy.  I also chose to have my breast reconstructed.  I think I will look forward to that surgery more than the mastectomy.

The oncology nurses at Virtua and the chemo nurses at Dr. Gor’s office with Regional Cancer Care Associates were simply phenomenal. They were compassionate, knowledgeable, understanding, sympathetic and encouraging. I never felt that I was alone. I just can’t say enough about the group of women taking care of me.  They had a solution for every side effect I encountered.

As for side effects, losing my hair was tough, but I got over that quickly. I had a lot of damage to my nails and nail beds, and it became hard to use my fingers, which is tough because I’m a stay at home mom of three great kids. I didn’t realize how much I depend on my hands.  I had an infection that wouldn’t clear, so I had to have my thumb nail surgically removed in August.

 

12-year-old daughter Gabrielle, 10-year-old son Sammy and a
9-year-old daughter Julia

One of the hardest things by far was telling my children and doing everything we could to keep their schedules normal. We were very honest with them and they took it really well. I’m really proud of them. That’s what broke my heart the most - putting them through it too.  They are so young; I still think it’s so unfair that they had to go through this.  Watching my family worry and be sad was just as hard as the chemo.  Cancer is far reaching – well beyond the patient. 

Virtua offered counseling for our entire family. Cliff and I visited with Karen Atkins, and I also had time with her by myself. We offered it to all three of our kids, and our youngest took advantage of it. Karen was able to explain to her what was happening. She had the same fears we had. What if the chemo doesn’t work? What if the cancer comes back? She taught self-soothing techniques so her anxiety didn’t spiral out of control. It was good to be able to talk to her about any warning signs we needed to be aware of and look for in our kids.

The kids are all phenomenal students, and they still managed to pull straight A’s through all of this. I couldn’t be more proud of them.

Both of my daughters also dance at Mulford Dance Studio.

Kim Mulford Farmer, the owner of the studio, and I have been friends since I was five. She e-mailed me in September and said the studio wanted to do something to show their support. They organized a t-shirt sale for October’s breast cancer awareness and said they wanted to donate the proceeds to a charity of my choice.

I was so touched and overwhelmed by the gesture. I wanted to pick a charity that was close to my heart, and I wanted to be able to give back to the group that helped me so much through my own personal journey.

I did some research online and saw that Virtua Foundation had a breast care comfort fund. I was fortunate to be able to buy my own wigs and scarves that helped me through a transition, and I can’t imagine being unable to do that.

It’s a very dark time and just being able to have a wig or scarf to cover my head or having my husband to transport me back and forth to my chemo treatments made it easier for me.   I was so lucky to have that.

 

Virtua Foundation

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