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, 5 May 2016

Debating Between Mastectomy and Lumpectomy?

If you have been diagnosed with breast cancer, either a surgeon or oncologist would likely have discussed the options of a lumpectomy or mastectomy with you. Like me, the first thing you probably asked is whether one is more effective than the other. During the information gathering process (which can be non-existent for some women as you feel forced to make a decision so quickly), I was told that long term survival did not differ regardless of which option I chose. Not so says the following article:

Age May Affect Outcomes With Breast Surgery

This study found that women 45 or younger had a 20-year local recurrence rate of 25% with breast conservation versus 11% for older women. Rates of local recurrence after mastectomy were 13% for younger patients and 3% for the older subgroup in the study population of 1,076 patients. In my case if a mastectomy gave me even a 1% better chance of never having the cancer come back, I was going to take it. A double mastectomy? Sure, might as well remove them both and reduce my risk even more.

My point is that a lot of people have opinions on what kind of surgery is best but it's your body and you have to be the one to decide. I think it is important for women to educate themselves about their options outside of what your surgeon, oncologist, radiologist, genetics counsellor etc. recommend. For example, when I said I wanted a double mastectomy both my surgeon and radiologist were very against it. With comments like "why would you cut off a perfectly healthy breast?" and "you know it won't increase your chances of survival" I seriously doubted my decision. By the time my next appointments with both doctors rolled around, they were perfectly fine with my decision and did not question it at all. It's almost like they were testing me to see how serious I was. When someone makes the decision to cut off their breasts, I would think they are pretty damn serious but either way, I guess I passed the test. My genetics councillor on the other hand was very supportive of my decision saying that the chances of developing cancer in the other breast are small, but they increase with age meaning that in 20 years, that risk could be quite high. This is especially true if you are triple negative.

It's such a tough decision and one you probably never thought you would have to make. At this age, I thought I would be deciding on baby names but that's not the way things worked out. This is getting depressing and that was not the intent of the post so I'll cut it off here but hope this information was helpful to you in some way.


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2 comments:

  1. Anonymous8 May 2016 at 11:43

    No matter what, I totally agree that this is a personal decision, and if a woman is comfortable with her decision, then it's the right one.
    But there is one thing that I want to point out about this study. I had brought this study or another similar one to my doctor last year, because I was wondering why he was telling me that the risks were similar when this study shows mastectomy to be superior for me (young, node negative). Well, it is shocking to me that the article doesn't point this out, but he said (and I checked, he's right) that the study did not account for BRCA status. Young women are disproportionately BRCA positive (the genetic drivers cause them to get breast cancer early). BRCA positive women are much more likely to have recurrences. So it is EXTREMELY likely that the reason mastectomy appears better for young women is that many of them are BRCA (or other breast-cancer-causing-gene) positive. It seems INCREDIBLY negligent of the authors to not point this out, that the study did not control for this. The study didn't control for it because not all of the women were tested, so they couldn't separate the women into groups based on brca status. However, they should at least point out that this is the probable reason, so that BRCA negative young women can realize that mastectomy is NOT superior for them in terms of survival, or at least not remotely proven to be. This study really aggravated me because it initially worried me, and I realized it should not have. The oncologists are all aware of this shortcoming in the study, but it is easy for us laypeople to not immediately see this shortcoming.

    Anyway, that is not to say that a woman still doesn't have every reason to make her own choice for one type of surgery over another. The mental battle is just as tough as the physical battle, and if someone feels more at peace with mastectomy, even with no proof of superiority, that peace may well be worth it!

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    1. TNBC Blogspot9 May 2016 at 14:57

      Thank you so much for bringing this to everyone's attention. It does make sense that BRCA status would factor into the results of the study....definitely something the authors should have disclosed. I am BRCA negative but decided on a mastectomy because I didn't want to risk getting unclear margins and having to go through another surgery. The debate will continue and like you said, as long as women are at peace with their decision, that's what really matters!

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