Beating Breast Cancer – Weekly Update #3

I was recently diagnosed with breast cancer and have decided to blog about my journey.  If you need to catch up on my story, please check out this page for the chronological list of posts.

It was a very busy week, so it has taken me a little longer than planned to get this update written and posted.  There’s so much to write about!  The big news is that I HAVE A GAME PLAN!  This post is exceptionally long with few pictures, so here is a virtual *high five* in advance for anyone who sticks with it to the end.

On Monday I received word that the results of my genetic testing were in.  I was anxious to get those results prior to my appointment with the surgeon on Tuesday, so that we would be able to make an informed decision about my surgery.  Due to that, I opted to receive the results in a phone appointment with the nurse rather than drive the 90 minutes for an in-office appointment.  The nurse called me on Tuesday morning and informed me that I did not have the BRCA-1 or BRCA-2 mutations.  While this is good news (I will not have prophylactic removal of my ovaries), she did remind me that they tested only 30 of over 20,000 genes.  There could still be a hereditary factor in my cancer (my paternal aunt and paternal great grandmother had breast cancer in addition to several relatives with cancer on my maternal line), there just isn’t a test for it yet.

Prior to going to my appointment with the surgeon, I started thinking about my surgical options now that I knew a bilateral mastectomy (removal of both breasts) probably wouldn’t be presented as completely necessary, as it would have been if I had been positive for a BRCA mutation.  I knew that I didn’t want a lumpectomy, since the size and location of my tumor would not make me a good candidate.  I also considered what I knew about my tumor so far, realizing that I didn’t feel like I had enough information to make a surgical decision.  So I went to my surgeon’s office wondering what she would present as an option and armed with several questions to ask the surgeon.

As expected, the focus of the appointment was discussion surrounding whether or not I should have a bilateral mastectomy.  I mentioned to the surgeon that I didn’t feel like I knew enough about the aggressiveness of my cancer to make this decision. I wondered if they had more information for me after the multidisciplinary team met together for their staffing last week.  The surgeon informed me that, in fact, they had discussed my case with a special focus on the involvement of my skin.  Even though the pathologist felt like the cancer had not yet spread to my blood vessels or skin, the team felt that the information they had was enough to increase the staging of my cancer.  My tumor is now considered T4B, which correlates to stage III-B on the more common scale of Stage 0 to Stage IV.

The surgeon said that my cancer is more common in post-menopausal woman.  From my reading, the types of cancer that women my age are normally diagnosed with are more aggressive and harder to treat (like Triple Negative), so I was feeling lucky that I had the more “tame” cancer of post-menopausal women.  However, the surgeon said that even though I have good hormone receptor status and HER-2 status, my tumor is acting more aggressively than they would expect.

After a lot of discussion, I decided to move forward with a bilateral mastectomy.  Here is a breakdown of the factors that went into this discussion.

• My Tumor – As mentioned above, my tumor is acting a little cray-cray, so I think a more aggressive approach is going to be better in the long run.
• My Age – The surgeon mentioned that the survival statistics are good for mastectomy of only the one affected breast, but those studies are only five and ten years.  We are going for 50 years, at least.  Removal of both breasts would definitely decrease my llllooonnnngggg range risk of recurrence.
• Reconstruction – My discussion with the plastic surgeon definitely solidified this reasoning (more on that later) j.  Reconstruction would have definitely been more difficult if they were trying to match my new breast to the unaffected breast.  Mismatched breasts would be a constant reminder of this journey, a reminder that I wouldn’t want.
• Do It Once – As I listened to everything that would go into a mastectomy and reconstruction, I definitely felt like I just wanted to get it all done at once.  Why risk having to go through this whole experience a second time?
• A Lifetime of “What Ifs” – I know myself, and I think that keeping my one breast would cause me to constantly worry about recurrence.  Although I will always worry about the cancer returning no matter what, I think having a bilateral mastectomy will reassure me that I have done everything I could.

Please keep in mind that these are MY reasons behind MY decision to have a bilateral mastectomy.  Everyone’s case is different, so I know that my choice might not be what someone else would choose in their own situation.  Shoot, my choice might not be what someone else would choose if they were in my exact situation.  And that’s okay.

After I decided on bilateral mastectomy, we discussed the actual surgery.  The surgeon explained that the plastic surgeon will be there as well, to start the reconstruction at the time of the mastectomy (more on that later).  They would also be putting in my port at this time.  You can read about ports here.  Believe it or not, a mastectomy is considered same day surgery but my surgeon said I will be staying overnight to help with pain control.  Before leaving, we set up my surgery appointment for Monday, February 6th.

The following day I had my follow-up with the medical oncologist and my initial consultation with the plastic surgeon.  I am glad that I got so much information about my cancer at the appointment with the surgeon, because it helped to have the background knowledge about the aggressiveness of my cancer when talking about chemo.

The oncologist presented me with the initial plan for my chemotherapy, which could change slightly after they get my full pathology after surgery.  I will be having four cycles of the drugs doxorubicin and cyclophosphamide (which is abbreviated as AC due to their brand names Adriamycin and Cytoxan), with two weeks between each cycle.  After the eight weeks of AC, I will have 12 weekly treatments of paclitaxel (Taxol) for a grand total of 20 weeks of chemo.  Now that I knew that the team had talked about my tumor (and what they had been concerned about), I wasn’t shocked when the oncologist explained that this is dose dense chemo.  That means that they are trying to keep the cancer cells from recovering between treatments.  I also wasn’t shocked by her suddenly serious face when I asked when we would start chemo.  She said that they wanted to get started as soon as possible after my surgery.  Probably within two weeks post-surgery.

She talked with me about a few side effects, which are your usual chemo side effects, but she did tell me that I will definitely have some help with the nausea through medication.  We didn’t go into too much detail because they really won’t know how I will react to the chemo until after my first cycle (although I will definitely lose my hair).  She is optimistic that I will do well due to my age and health.

Later that same day, I met with my awesome plastic surgeon to discuss my reconstruction options.  He told me that I am a better candidate for implants than a flap procedure, so we talked about what that process will look like.  At the time of my mastectomy, he will insert expanders under the skin and muscle of my chest.  About two weeks post surgery, they will start injecting saline into the expanders at two-week intervals until I am at the right size for my body frame (Side note:  my little boobs are NOT the right size for my body frame).  Once that happens, he will replace the expanders with silicone implants in a pretty simple procedure.  After recovery from the implants, we will start nipple reconstruction.  (More on that when the time comes…)  What he said many times during my appointment is that there are so many negative aspects to breast cancer that are out of our control; reconstruction is a process that we CAN control, and he is going to make sure it is a positive part of my journey.  I am looking forward to my beautiful new cancer-free boobs!

Thursday brought about a bit of a scare. Ladybug started seizing in my arms while we were at The Professor’s Pinewood Derby for Cub Scouts.  Since this was her first seizure and the first seizure I had ever witnessed up close and personal, I was pretty freaked out.

After an ambulance ride and ER visit, they confirmed that it was a febrile seizure due to a quickly-spiking fever (in the time we had been at the Pinewood Derby, her fever had spiked from low grade to almost 103).  I’ll tell you what, I can hold it together when talking about my own cancer, but the thought of my baby being seriously ill was enough to put me over the edge.  I had a mommy meltdown that night.

On Friday I had my pre-op appointment at the hospital.  Afterwards, I ran over to the cancer center to pick up a few resources that the social workers had set aside for us.  They sent me home with a Kimmie Cares doll and some coloring books for the kids.  The doll is super cute – she has removeable hair that can be replaced with a head scarf.  I think this will be a nice resource for Mini-Me as she processes everything that is happening.  I am so grateful for all of the resources and supports made available to families that are dealing with a cancer diagnosis.

Saturday evening brought a wonderful spirit-boosting get-together with my friends from high school to say “ta ta to the tatas”.  We haven’t all been together under one roof for a LONG time, so it was quite a treat!

Now that I have a better idea of how long I will be feeling gross due to surgery and chemo, I have been working on tying up loose ends before my surgery date.  Although this week will be quiet in the cancer department, it will be very busy with preparations!

Keep Reading – – > Weekly Update #4 (February 5, 2017) {Preparing for Mastectomy}