Why Double Mastectomy?

A guest post by an anonymous writer, which will be an ongoing series. 

Please join us on her journey!

Many people have been surprised that mastectomy would EVER be a treatment for Stage 0 breast cancer.  Honestly, I was as well. I had the idea that it would be a simple, non-invasive procedure that would be complete in a matter of days, not months.  I now understand it and do believe this is the best course of action for me.

The standard of care for DCIS is generally lumpectomy or excision biopsy followed by possible radiation and Tamoxifen (a hormone blocker), depending on hormone receptor status.  I am hormone receptor positive (ER+/PR+).  Additionally, I have six centimeters of affected tissue and am very small breasted.  Of the two (of six) spots biopsied, one tested mid-grade and one tested high-grade.  High-Grade DCIS may have a higher chance of developing into invasive cancer than low-grade DCIS.  Overall rates of DCIS patients developing invasive cancer, if not treated, is 36-50% depending on the study.  Standard of care if it does become invasive is then surgery followed by chemotherapy.

There are many options for DCIS.  It is sometimes over-treated (immediate surgery followed by radiation, which has shown marginal benefit)

Options for treatment include:

• Active Holistic Surveillance - "watch and wait approach".  DCIS is managed by frequent follow-up scans as well as diet and lifestyle changes
• Lumpectomy or biopsy excision only
• Lumpectomy or biopsy excision with radiation
• Lupectomy or biopsy excision with radiation and Tamoxifen
• Mastectomy on the affected side or both with or without reconstruction.  Sometimes radiation and Tamoxifen are recommended depending on the case.

Chemotherapy is not generally recommended.

I did my research.  In the beginning, I thought I might be a candidate for Active Holistic Surveillance.  In the end, I decided against this option.  I could not find a doctor to monitor me in my area. The holistic practitioners near me do alternative therapies in conjunction with standard of care.  I am not comfortable taking this approach without monitoring by a doctor.

I then thought I was a candidate for lumpectomy without radiation or Tamoxifen.  I decided this was a good option, as I did not want radiation or Tamoxifen under any circumstances, given the possible side effects.  I would simply deny those treatments.

After I found out I had six centimeters of affected tissue, mastectomy was recommended (with the removal of one lymph node to test for invasive cancer to be sure invasive cancer is not present).  This is for a few reasons.  One reason is that with a large percentage of the breast affected, cosmetic result is poor.  Another reason is that the surgeon wants to make sure to have good margins.  I went back and forth between thinking this was a good idea.  At first, I considered only having the mastectomy on the affected side.  My doctor told me it was totally up to me, but that he did not recommend a double mastectomy.  I went for a second opinion and that doctor did recommend double mastectomy with removal of 2 or 3 lymph nodes.   

In the end, I decided on double mastectomy for the following reasons:

• I was not comfortable, in the end, with having an invasive cancer risk of up to 50%, if I considered Active Holistic Surveillance.  That is a LARGE risk to take, especially being young and having young children.  I thought of it like this.  If someone told me if you do X or keep doing X, you will have a 50% chance of invasive cancer, I would change immediately.  How would this be any different?  Get rid of the affected tissue to reduce that risk to minimal.
• I had read many accounts of people who did a lumpectomy on a large area and were very dissatisfied with the result - even people who thought they would not care about the cosmetic result (like me).
• I read many accounts of people choosing a single mastectomy and later going back to have a mastectomy on the other side.  I do NOT want to do this surgery more than one time in my life.  
• I wanted complete symmetry.  If I am having a mastectomy with reconstruction, I may as well go up a cup size to where I feel most comfortable.  I could have an implant and possible lift in my unaffected breast, but I am not convinced it would provide complete symmetry.  The good news is I am a good candidate for nipple-sparing mastectomy unless the surgeon finds cancer cells on the back of my nipple during surgery.

I realize I do not have to do a double mastectomy, but it is the option I feel most comfortable with.  I also realize that mastectomy does not prevent future breast cancer.  In fact, this is one reason many cite for choosing Active Holistic Surveillance.  However, with mastectomy, the risk is reduced from 36-50% down to around 3%.  My doctor will monitor the remaining tissue (about 10% of breast tissue that is not removed).  This is standard for mastectomy now, as "radical mastectomy" is no longer standard of care for most breast cancer and poses too many risks. 

This was a difficult decision for me to make.  I did my research and felt the most comfortable with this choice.  I am at peace with this decision and am ready to face whatever challenges will come.  Recovery is going to be a long road.  I do not naively believe it will be easy by any means. However, I can do it with help.  I went to a support group today and was told that total recovery can take up to a year.  It will be okay.  I can do hard things!

Read other posts in this series:
Maxed Out Minivan

To start at part one go here:
Part 1: Stage Zero What?