I am 30 years old and was diagnosed with breast cancer, specifically invasive ductal carcinoma. Before my diagnosis, I didn't even know what that meant. Now I have been forced into a reality where I not only know what it means but my doctors appointments and daily thoughts are filled with other previously unfamiliar words like neoadjuvant therapy, metastases, HER2 and triple negative.

I started this blog in hopes that some of the information I share may be helpful to other young women in a similar situation. Rather than posting my day to day experiences, feelings and progress, I plan to share some of the things I have learned along the way. Being dealt this hand in life at 30 years old brings with it some unique issues and questions. Will I ever have kids? How will this affect my relationships with my husband and friends? What is my long term prognosis?

Through this site you may find that my way of dealing with things is a bit different. I want to be educated about my disease and take an active role in my treatment and recovery. I want to understand every part of my pathology report, what it means, and feel confident that my doctors are recommending the best course of action. At each stage in my journey, I have experienced challenges with finding answers to my questions and ensuring that the medical professionals treating me really understand who I am and why my way of dealing with this disease may be unlike other women. My hope is that people will be able to relate to my experiences, learn from them and find some comfort that they are not alone.

Thursday, 2 June 2016

Debating Between Mastectomy and Lumpectomy - Part 2

A few weeks ago I published a post that seems to be getting a fair amount of traffic about a lumpectomy versus mastectomy. Sometimes I make light of it but in reality this is a very difficult choice. I am the type of person that needs to research and have all of the available information before making a decision. For example, before going out to a restaurant, I usually look up the menu ahead of time and will still take forever to decide what I want. I am the one at the table asking for more time or debating between a garden salad or calamari while the waitress and everyone else sits there waiting. If it takes that much effort to choose an appetizer, you can only imagine what was going through my mind when presented with surgery options.

When making any life changing decision, I think a pros and cons list is in order! For that reason, I thought I would share mine, in case it helps anyone else with this impossible task.

Lumpectomy
Pros: 
1. Least invasive surgery.
2. Shorter recovery time.
3. No implant or further procedures needed.

Cons:
1. Chance that there could be unclear margins and a second surgery would be required (estimates show this happens for approximately 20-25% of women which was way too high for me). There is also some speculation that if the surgeon doesn't remove the whole tumor, they may break the perimeter and allow more cells to escape into the body.
2. Some studies like the one I posted earlier show that lumpectomy may not be as effective in younger women. Of course there are also other studies contradicting this.
3. My tumor was large relative to the size of my breast so a lumpectomy would have taken quite a bit of my breast tissue and the cosmetic result wouldn't have been great.

Unilateral Mastectomy
Pros:
1. Most breast tissue would be removed (according to the surgeon, there will always be some remaining so the chance of recurrence in the tissue is never 100% gone, just greatly reduced).
2. This procedure would give me the best chance at clear margins. An MRI before my last chemo showed residual tumor so this was especially important.

Cons:
1. Longer recovery time including a drain.
2. Tissue expander would be needed as I knew I did not want to be completely flat.
3. Cosmetic result isn't ideal.
4. Additional surgery later on to replace the expander with an implant.

Bi-lateral Mastectomy
Pros: 
1. Both breasts have an axe wound through them (ok, I'm over exaggerating) but at least they look the same.
2. If breast cancer can develop in one breast, it can happen in the other.
3. On message boards I have read about way too many women that either decided to have both breasts removed and a) the "healthy breast" ended up having cancer cells that were not detected on imaging or b) they developed a new cancer years later in the opposite breast.
4. Even though doctors say the chances of developing a new cancer in the opposite breast are only approximately 10-14%, they still have no idea what caused my cancer so I don't have much confidence in that statistic.
5. Women whose first breast cancer was hormone receptor-negative may have a higher risk of a second primary breast cancer compared to those whose first breast cancer was hormone receptor-positive. This risk was even greater for women who were initially diagnosed with HR-negative tumors when younger than 30 years.
* I also found this article in the Wall Street Journal about increasing numbers of women that choose a double mastectomy. It offers some interesting perspectives from both doctors and patients that I could relate to.

Con:
1. The physical and psychological effects of having both my breasts removed.
2. Two surgeries and going through the tissue expansion process twice.
* If I would have pushed back on the surgeon and asked more questions, the mastectomy and tissue expander insertion on both sides could have been performed in one surgery. This is why I stress being your own advocate!
3. Higher risk of complications.

There could be totally different pros and cons on someone else's list which is why surgery is such a personal decision. For example, I did not include my husband or anything to do with my personal relationship on this list as he was fully supportive regardless of my decision but I understand that can be a factor. Radiation was also recommended regardless of the surgery I chose.

Ultimately I went with a double mastectomy and am currently recovering from my second surgery. No cancer cells were found in my "healthy breast" but there were micro calcifications in the ducts which can suggest areas of increased activity in some breast cells. This finding could be an early indication of cancer that may have developed down the road or it could have remained completely benign and never caused any problems. For me, this was one of the factors reinforcing that I had made the right decision. At the end of the day, feeling confident that you have done the best you can is all anyone can ask for!

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