DCIS 411

Guest blog by Courtney Organ

Four years ago I had a very traumatic event happen to me. I was 38 weeks pregnant and 26 years old. At the time, I shared nothing on social media due to the fact I felt I was in a horror movie — being pregnant with my second child and getting diagnosed with a very serious disease.   

I had “survivors guilt” — I felt my story wasn’t worthy enough to share because of so many I know who have suffered. But, not a day goes by I don’t think about what happened to me and how I can help prevent this from happening to others.

I do believe I was given a second chance. After learning what I have found out after countless hours of research, something just didn’t feel right to me.

My intuition kept saying, there’s no way… this isn’t real… this can’t be happening… I’m healthy… I’m creating a life….You are about to give birth, and also facing mortality?

I knew NOTHING about cancer at this time of my life. I felt invincible. Facing life and death was the most terrifying thing I’ve ever felt. It shook to me to my core. 

I understand cancer comes in many stages and that my situation will not even compare to those truly suffering and those who have lost loved ones from this devastating and heartbreaking disease. Everyone has a different story and I wanted to share mine… 

I found a lump when I was a few months into my pregnancy.

I thought it was just pregnancy-related hormone changes — a clogged milk duct or something. I was working a ton and trying to balance life with a 2 year old. It wasn’t until I was 6 months pregnant that I brought this up to my obstetrician. I asked her what she thought and she seemed shocked I hadn’t mentioned it before. She said I needed to get an ultrasound immediately, and she also recommended I see a breast surgeon to get a biopsy. 

I was immediately frightened. I thought: Could this be something more serious? Couldn’t be — no way — I’m 26 years old. 

I got the ultrasound and the results came back literally the night before I left for a trip to Chicago to see family and friends. My obstetrician had said I had a tumor – it was not a cyst, so she definitely wanted me to see a breast surgeon.

While this was scary, I went ahead on my trip thinking it is going to take time to get authorization from insurance — which it did. I had a great time in Chicago and didn’t think about it much because we all truly thought this was benign – even my obstetrician.  

I went to see what I thought was a breast surgeon, but he was actually a general surgeon. He said we need to do a core biopsy.  This was his 1st week on the job and he said he didn’t even know how the process worked in terms of getting a biopsy.  He left the room and said, “I just have to see where we’ll send you to get this done.”

I was like, okay. I’m sure I’ll get a call from them in a couple of days.

Not. They gave me the run-around in every possible way. They had a radiologist from a another place look at my imaging and their findings recommended an MRI. Well, when your pregnant you can’t get an MRI with contrast. So they said, we’ll do an MRI without contrast. I was waiting for 2-3 weeks to hear back from them and nothing came along and I was persistent calling every day. Finally they said no you can’t do an MRI — you have to wait until your done with your pregnancy; let’s do an ultrasound guided biopsy. I said okay, let’s do it — when can we book it?   They said they’d call me to schedule.

I kept calling because no one called me. The lady at the front desk told me “Courtney we can’t do your biopsy here because the surgeon doesn’t think you are able to do that pregnant with anesthesia.”

Woah woah woah… the surgeon never said anything to me about that. What is going on? Why has no one called me? He had told me anesthesia wouldn’t be a problem. I said, “Have the surgeon call me immediately.”

The surgeon called and apologized. He said, “Courtney I don’t know why the front desk girls said that as they don’t know what has been talked about.” I thought this was so unorganized and just awful. Then the woman handling scheduling said they decided they’d send me to a breast center in Palm Springs because this was out of their hands.

Confusing as heck. Why am I not being told what’s going on? Why isn’t this being talked about with their team?

It was like there was no team involved. The woman I spoke with on the phone said, “The surgeon thinks it’s benign so don’t worry, just focus on your baby, and enjoy this time.” Okay, I guess I had some reassurance then. 

Weeks passed and I still didn’t get my biopsy. I went into the breast center myself (completely different area) with all my ultrasound images, 37 weeks pregnant mind you, and said to this woman “I need to get this biopsied. Please have someone contact me ASAP. I want to breast feed and I don’t want to be doing this post partum if it’s nothing.” I really had to express emotion as if I was desperate. Persistence was a big strength thus far.

The tech said, “We’ll look at your images right away, and call you. You may be too late in your pregnancy, but I’ll find out with the radiologist and call you tomorrow.” 

I felt good about that. I thought, ok, finally someone gave me some sort of promising news that they’d at least get back to me. 

They called and scheduled me the next week for an ultrasound guided core biopsy.  This is almost 2 months after my first initial ultrasound. Not ok.

I went in to do the ultrasound and the radiologist still couldn’t tell what this tumor was. I had to have a biopsy for sure. As soon as he started the biopsy, I started crying. Something about a needle going into your body scared the heck out of me. I thought…

What if this was something and I have to fight for my life? What if I can’t see my Charlie grow up?

He said it looked like some cells going on, but really truly he thought it was benign. Everyone thought it was benign. He even said it was benign after he took the biopsy. They said to come back the next day.

I went back and was scared shitless. I actually waited in the waiting room for 1.5 hours before my results to see if they could get me in early.  As I was waiting I read about possibilities of breast cancer in your 20s. An article came up about a girl that had a chemo baby and her baby was bald. I was freaked out. At that moment my heart was pumping and my nerves felt like they were going to blow up. I will never forget this feeling.

After they finally put me in a room, four doctors and techs came in and said:

“Courtney, we found something. You have low grade ductal carcinoma in situ and you need a consultation with a breast surgeon.  Here is a booklet on breast cancer. Good news is we caught it early.  Do you have anyone with you today?” 

I was speechless. I started to cry and then I couldn’t breathe. WHAT!!!! Breast cancer? What? Why? How? What do you mean? At my age? What does this mean? 

They couldn’t give me any answers. This is what I found out as my first impression of a radiologist. They take your tissue and say goodbye. Thanks a lot. I’m young, pregnant, and I have a 3 year old. Give me some answers and NOW!!!! 

Nothing was said and I went on my way in shock.

I was balling my eyes out. I went straight to the bathroom and couldn’t breathe. I had this baby inside of me and couldn’t breathe.

I didn’t bring anyone with me because again I assumed this was nothing, not me — no way, I’m pregnant, this would be so rare, I’m invincible right? So many thoughts. 

I called my husband Jason. I said, “I have breast cancer.”

Jason left work immediately and met me at home straight away. On my way home my obstetrician called me. She received the biopsy report and said come to my office ASAP. It was a Friday afternoon and she doesn’t even work on Fridays. 

Before I even got there she had talked to a breast surgeon who she proposed was very good for me to see. Jason and I asked so many questions and I HAD NEVER CRIED SO HARD. She couldn’t give me many answers as she doesn’t specialize in breast cancer. She was so compassionate and told me that I will be okay. She even started crying — which made me feel even worse. I asked if she saw this in my age and she said no — and that it was bad luck and very rare. 

The breast surgeon and ob-gyn were very much working together as they were concerned with me, my baby and my future.  They said it’s best to get the baby out safely at 38 weeks. They NEEDED an MRI to make sure there wasn’t anything happening or changing in other breast as well, and also get prepared for a very radical surgery! That meant, no breast feeding!

To this day, I still cry when I talk about why I couldn’t breast feed my child.

They said I should have a mastectomy after the baby is born and nipple removal as well.  My mind was racing… Whaaaaat the F*ck!

They thought it was stage 0, but you never truly know until you go in and remove the tumor completely, but mastectomy?

I felt shattered.

At this point I didn’t know anything about breast cancer or DCIS, but as soon as I left the obstetrician’s office I began my research. I studied and researched night and day. It took time away from my family but I know I am smart and I was willing to find out and understand this as best as I could. 

I found out that DCIS may not ever in a lifetime turn into invasive cancer.

People said to me, “Stop researching, stop looking online, stop all of this until you speak with the surgeon. Stay positive, you’re strong, you’ll beat this.” 

A new cancer patient can’t comprehend those terms.  

The surgeon wanted to get me in ASAP with a breast radiologist specialist to take a look at things. Ultrasound, mammogram (ouch), and then talk with me. It seems like they needed this info and scans before meeting the surgeon. Like I said before, I’m young — when you call me in for an ultrasound, tell my why please as I don’t know what this is all about and I also feel scared out of my mind. They didn’t explain much. I had to call to ask. So ANNOYING!!!!! I know they needed more info, but why couldn’t someone explain that to me instead of just ordering things and blindsiding me? I’m a person that needs to know what and why and when at all times.  It’s my body. Tell me. Don’t keep me waiting!!

The radiologist was truly the first woman and doctor that I met with that was thorough and honest. I felt she was amazing and she gave me good news that my lymph nodes were clear along with other areas of my breast.

About a week later, I met with the surgeon. I brought my stepmom Pam and my husband Jason to this meeting.  She explained to me that I was diagnosed with DCIS and because it’s so low grade — meaning such low cell changes — its the best type of “breast cancer” you could have. 

My gut and intuition told me to keep researching my head off and to understand what’s going on. I learned very fast that just because you have a “low grade” “stage zero” breast cancer that doesn’t mean the treatment is less than any other INVASIVE breast cancer. 

I was told because of my age I had to treat this aggressively.

I could have a lumpectomy and nipple removed with radiation and tamoxifen for 10 years OR, since radiation can’t be done twice on that specific cancer side & due to my age for risk of recurrence, I could have a SINGLE MASTECTOMY with no radiation, and still have to take tamoxifen for 10 years.

Tamoxifen, from what I read, had many side effects reducing quality of life (depression, anxiety, loss of libido, menopause kicks in early), and it also puts you at risk for others cancers like uterine cancer. 

Mastectomy seemed like the best option at the time. After painful agony and stress weighing my options, I decided to go with a bilateral mastectomy. 

As soon as I thought about my risk being reduced, my kids came to mind. I want to be there for their lives. I’ll lose any part of my body to be there, I would do whatever it takes, truly. 

All of my genetic testing came back negative which was great news as breast cancer runs in my family — my grandmother on maternal side had it twice. 

I booked my surgery to have both my breasts removed for October 11th, 2016. After 100% deciding this was the way to go, preparing myself and my worried family members, I continued to do research. Day and night I was linked on my phone to try to understand this disease and what it can do to people, how to reduce my risk, etc.

I was so mind-boggled, extremely stressed because of my diagnosis, I couldn’t even think straight. All I knew was this supposed estrogen positive cancer was being fueled because of the pregnancy and I didn’t want it to get worse. I decided to get induced. 

I was there for 3 whole days trying to induce labor, and then I had to have an emergency C-section. In that very moment where I was taken to surgery, I have never prayed so much in my life. I was devastated by my breast cancer news and bad news in general that I had to pray for this baby to be healthy. I prayed and cried and prayed. I needed my baby to be healthy. I felt like the universe was out to get me until my beautiful baby was born, C- section or not.

My little warrior who made me a warrior, arrived healthy. Born on 7-13-16, weighing 8 pounds 5 ounces, and 22 inches, he was perfect. We named him Jack Avery — meaning God is gracious.

At that point I felt there truly is a God. I was so happy. I felt like I could get through anything especially knowing he is ok. Ever since Jack was born, things truly turned around.

Although I still had this lump of messed up cells in my body, I couldn’t help but think about it and the surgery I was about to have. I had anxiety dealing with the loss that I couldn’t breast feed, the loss of my breasts in general. I was torn. I was hopeless. I was depressed. I somewhat lost that special time with my baby Jack because of the invasion of these nasty thoughts. My mom Sara was here for the first 3 weeks of Jacks’ life. Without her, I wouldn’t have made it.  

That next week was filled with doctor appointments which made me leave my newborn baby. I met with a plastic surgeon, and I met with an oncology counselor every week.

My mother-in-law Deirdre was here after my mom left. She came to appointments and took care of Jack, and she helped me through all of this. Our entire family was put through a lot of mental strain.

During all of this process to get me prepared for my double mastectomy,  I was determined and persistent to find out answers and understand this detrimental disease. I read books for hours. I found out so many different things about DCIS — and how it’s often mistreated. My first instinct when I got diagnosed was this could not be. I could not have this disease.

While all of this took time away from my family, something was telling me to keep looking. I realized now that all of this searching was FOR MY FAMILY. 

I found an unbelievable wealth of resources when I joined a few different online DCIS support groups. When I posted my story I had about 50 comments. I found a few others that were pregnant going through this and that truly made me feel like I wasn’t alone anymore. Not only have these ladies conquered much worse, but it was a place I could talk to others and ask questions to women all over the world to understand treatment protocols, side effects, etc.

One group focused on integrative health. This is where I found Donna Pinto, who TRULY CHANGED MY LIFE. The information and resources from her site DCIS 411 just clicked with me and I felt I had to follow this path.

While looking over Donna’s site, I found the name of a breast consultation service for a second pathology opinion. I also listened to Donna’s recording she posted of her 45 minute phone consultation with this doctor reviewing her DCIS pathology. His name is Dr. Michael Lagios and he created a lot of the literature about DCIS. He arranged to order my slides and imaging for him to review.

Three days later Dr. Lagios called me. He said:

“Courtney my interpretation of your slides is Atypical Ductal Hyperplasia, which is benign. It’s not DCIS. There has been some cell changes but not certifiable DCIS. What I would recommend is an adequate excision of the lesion and then go from there with an adequate diagnosis.”

Since my first surgeon and team said I needed my nipple removed, and that mastectomy would be best, I questioned him about this. He said, “My goodness, a mastectomy is a bit much. We don’t even have enough evidence to support that mastectomy is the correct decision. I don’t see why you can’t save the nipple. Start slow with this process, get it out, and then see if you need major surgery. Usually the tumor isn’t as close to the nipple once it’s excised.”

I asked Dr. Lagios if he would speak to my surgeon to discuss his thoughts.

Finally after a week of not hearing from anyone, the surgeon called me. He said, “I spoke to Dr Lagios and I agree with him saying that we should take the lump out and then see if it’s really DCIS (cancer) or really Atypia Ductal Hyperplasia (benign).”

Ok let’s recap. Remember: I had a newborn and 3 year old during all of this. This time and transition was robbed from me, gone. I did get time with them, of course, but it wasn’t a healthy time for me. Much guilt was felt in my family through this burden. 

My mom and mother-in-law were in town taking care of my baby as I was absolutely distraught and confused about what is going on. Relieved? Yes. Who to trust? Not sure.

I decided to reach out to a doctor I had worked for in Palm Desert and he recommended I contact City of Hope in Los Angeles. I booked a consult with the chief of breast surgery, Dr. Laura Kruper — and wow, was she a breath of fresh air.

As soon as my husband and I walked into that hospital, into that room, we felt better. 

We felt like we would be taken care of — like there was no unanswered questions. Dr. Kruper’s fellow came into our treatment room and handed us a paper saying their pathologist agreed with Dr Lagios…

This is not DCIS, this is Atypia Ductal Hyperplasia. This is BENIGN. 

They thought mastectomy, too, was unnecessary as an initial first step. However, I did need to have an excisional biopsy surgery to get this lump (papilloma) out. We booked it for the next week September 7, 2016. After getting this carefully excised, then we could talk about further treatment. 

It was terrifying as this was only two months after my baby was born. One of my best friends Tiffany watched my son, Jack, while I went under anesthesia to get these messed up cells out of my life. I was so afraid to go under and leave my newborn. It was sooooo hard. I felt so sad. At the same time I couldn’t wait to get this out. Tiffany made this time much easier for me. 

The surgery only took one hour and the doctor came out saying, “All I see are BENIGN cells, involving a papilloma, but we will do a pathology review and see you in two weeks for final results.” 

Dr. Kruper was amazing and I barely had any pain. My nipple didn’t die and I still had sensation. My husband had taken so many days off work that he couldn’t take any more. So I asked my dad to come with me to get the final pathology results.

Two weeks later I went back to City of Hope with my dad and my 2 month old son, Jack. I went into that room stressed out of my mind. My nails were chewed off, my mind was racing, I just wanted to know. I couldn’t handle that I didn’t know if it was really cancer or really not?! 

Dr. Kruper came in and said there was no more trace of atypia cells. Meaning, BENIGN!

Hallelujah!!!!!!!!

The only weird cells was from my first biopsy — a few mm of papilloma. Which means my risk of breast cancer has been reduced dramatically. And I don’t have to take that awful drug tamoxifen. 

Dr. Kruper gave me a huge hug. I was in awe. Checkup in 6 months. 

BEST NEWS EVER!!!

I walked out of that office so happy — my smile was from ear to ear. My dad was there feeding my baby, Jack, and as soon as I walked out I yelled:

“BENIGN!!!”

He was so happy. We left and it felt great. My dad said he hasn’t seen me smile like that since I sunk a put in golf when I was 9. He said the same happiness was there. I was so happy that this was over and I could now go on with my life.

Does that mean I’ve been happy ever since?

No → this has changed my life forever. I still struggle with extreme episodes of PTSD and I do EMDR treatments to help with the trauma. Do I value life more? Yes. Is anything possible? Yes. I’m grateful for my life! 

After 4 years of clear scans, I can say I am free. I am a survivor.

I fought hard for my family. I never gave up. This is the moment I needed to share, to truly heal and have closure. I believe that you can heal anything — shift anything — with your mind and your beliefs. I have developed a spiritual core that can’t be broken because of what I have been through. I realize I was not given this challenge to struggle every summer — reminding me what happened near my 2nd child’s birthday, but to be an advocate for myself and other people around me. Every time I see Jack’s smiling face I am reminded of a second chance I was given. I am so happy to be here with my family and I am grateful every single day. 

Thank you to everyone for being there.  I couldn’t have gone through this without you. 

A note of gratitude and resources from Donna Pinto:

Thank you so much Courtney for sharing your heart-wrenching story and for your desire to help others! May you and your family continue to be blessed with health and happiness.

* Unfortunately Dr. Michael Lagios retired in 2018.

Current resources for 2nd pathology opinions:

A breast disease second opinion service by PreludeDx^™

31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 25 — Unbiased 2nd PATHOLOGY opinion is a MUST