Category Archives: ductal carcinoma in situ

Book Suggestions

When my journey with breast cancer started, I realized that there was a ton of information out there, so I didn’t know where to start.  I didn’t have much time to process the DCIS before I was in surgery and having the cancer removed.  Afterwards, all I had to do was wait for my genetic test results.  I didn’t find out about these books until after I received the news that I carried the gene, but hopefully, I can help others know where to turn.

My friend, Justine, told me about a book her friend had mentioned.  What We Have: A Family’s Inspiring Story About Love, Loss, and Survival by AmyBoesky.  I haven’t had a chance to read all of it, but so far it has really touched me.  The author was only 32 at the time she wrote the book, so our ages aren’t too far apart.  The main difference is that she didn’t have cancer, just the gene, so I guess that’s why I haven’t finished reading it.  My situation is just a little bit different.

While I was looking on Amazon at What We Have, I looked through the other suggestions and came across Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora Gordon.  This book saved my sanity.  I was reading it up to the moment we walked into the oncologist office.  I didn’t want to just skip ahead to the chapters I thought I needed to read, so I was reading so fast because I wanted to get to the chapter about understanding the genetic test results.  Finally I had something in writing that explained in plain English what my results meant.  I also realized how important a genetic counselor is in this process.  I am so frustrated with my gynecologist for not referring me to the only genetic counselor in Corpus Christi.  Instead, he chose to have the blood drawn and sent off and then never explained the results.  Yesterday, I met with my surgeon and he is going to send me to the genetic counselor because there are still some things we need to talk about like when to tell Haley and when she should be tested.  I don’t have that appointment, yet, but I’m getting my questions ready.

The third book I purchased for my Kindle was Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port.  I’ve read a few of the chapters, but haven’t finished it, yet either.  This book documents 5 ladies who all carry the breast cancer gene either BRCA I or BRCA II.  I know that I will pick it back up again soon, but I’m trying to finish the other books I am reading right now. 

I hope that if you are ever facing the decision to get tested for the BRCA I or II gene that you find a genetic counselor and also check out these books.  I’m sure there are plenty of others out there, but these are the top of my reading list.

The beginning

I guess I will start at the beginning. 

My mom was diagnosed with breast cancer at the age of 42.  She had a mastectomy and chemotherapy.  After 6 months, the doctors told her that she was in remission.  Three months later she was having headaches and the doctors discovered that the cancer had metastasized in her brain.  She was gone a few weeks later at the age of 43.

When I started going for my annual pap screening, I asked my doctor when I should start having mammograms.  He said that I should have a baseline at the age of 30, just so they would have references to go back to when I got older.

I turned 30 in 2010.  In October I went to my annual appointment and discussed having a mammogram with the nurse practictioner (N.P.).  She agreed that I should have a baseline done.  November 3, 2010 I went for my first mammogram.  I have always heard horror stories about how painful it is and truthfully, I didn’t think it was that bad.  It was a little cold and a little strange to have another lady messing with my breast to get it positioned on the table.

A week later, I went back to the N.P. to go over the results.  Well, she didn’t have them, yet, and she told me that she would call the hospital and then call me if there was anything we needed to worry about.  Believe me, I wasn’t expecting my phone to ring within the hour.  The radiologist saw some microcalcifications that he wanted to get some magnified pictures of, so I was to schedule another mammogram.

December 2, 2010 – go back in for more pictures.  Thankfully, it was the same lady and she even showed me on the computer screen what the radiologist was looking at.  Finish there and start waiting.  Finally on the 15th, I called the doctor’s office.  They wanted me to make an appointment and I asked if they could just check the results and call me back.  The N.P. called me back immediately and said that the radiologist was recommending a breast biopsy.

The breast biopsy was scheduled for December 27 at Radiology Associates in Corpus Christi.  The technician and radiologist were wonderful.  They made me very comfortable or as comfortable as you can be laying on your stomach with your breast hanging through a hole in the table.  LOL.  The table is raised up and they work underneath you.  The needle is huge and the first time they didn’t get any of the microcalcifications, so they had to go back in.  Actually, they left the needle in there, while the technician checked the sample.  The second sample hit “the motherload” according to the radiologist and they were able to get most of the microcalcifications.  Then a tiny titanium clip was inserted into the biopsy site.  I was told that if the sample came back benign, then the clip would stay in and any future mammograms would show that I had a biopsy done in that area and nothing was found.  If the sample came back cancerous, then the clip would act as a guide for the surgeon, so he could go directly to the biopsy site.

They told me to go home and take it easy and wait for them to call me the next day.  Jason went out to play golf while I played on the computer.  I was getting a little antsy waiting for the phone to ring, and when it did I was not ready for what he had to say.

The radiologist called me to tell me that I had cancer.  Ductal carcinoma in situ.  That means that the cancer was in the milk duct, but it had not spread anywhere, yet.  We caught it very early.

The next two weeks flew by.  I met with a surgeon on January 4 and was set for surgery on the 10th.  Jason and I were all over Corpus Christi that day getting pre-registered at the hospital, getting a MRI, and then having blood drawn for the BRCA I & II genetic testing.  On January 6th, I met with the oncologist. We decided that we needed to wait for the genetic test results before we decided my treatment after surgery.

Surgery was done on the 10th.  I had to be there at 8:30 am.  At 10:30 I was taken back to nuclear medicine to have radioactive dye inserted into the breast tissue and then from there I went to mammography to have a “guide wire” inserted to direct the surgeon to the titanium clip.  This was not a fun mammogram at all.  They had me sit on a stool because I couldn’t move once they found the correct location of the clip.  I almost passed out after this because when they inserted the needle it aggravated the biopsy location and started bleeding.  I do not handle seeing my own blood very well and had to lie down on the floor. 

After that ordeal, I was taken back to my holding pen, I mean room, in outpatient surgery.  Surgery was scheduled for 2 pm.  At 2:30, the anesthesiologist came in and introduced himself and explained his part of the procedure and then soon after my surgeon came in.  He told Jason that surgery would take about an hour and a half and then I would be in recovery for a while and then we could go home.  I didn’t wake up in recovery until 7:30 pm!  The surgery was more extensive than they were planning and it took almost 3 hours.  We ended up staying overnight at the hospital.  Thank goodness because I was in pain and they put me on a morphine drip to help manage the pain.

My surgeon came to visit me in the morning and said that my lymph nodes were deeper than he was expecting, so my arm was probably going to hurt for a while.  He also had to go deeper when removing the cancerous tissue to get enough margin behind the area.  He had to go all the way to my chest wall.

Then we were back to waiting for the pathology reports.  Thankfully, those reports came back great.  The lymph nodes were clear and they were able to contain the cancer and the margins were cancer-free.

Today is 5 weeks since I had the blood drawn for the genetic testing and we still do not have the results.  If I carry the gene, then I will be undergoing a double mastectomy with reconstructive surgery and having my ovaries removed.  If I do not carry the gene, I will start radiation therapy. 

Hopefully, we won’t be waiting too much longer.