A cancer diagnosis is filled with decisions to make, and making the decision between lumpectomy or mastectomy surgery was not easy.
I was diagnosed with breast cancer shortly after turning 30, and I elected a bilateral mastectomy with breast reconstruction. One of my biggest fears in making my decision was that I would later come to regret my choice.
I’m sharing my thoughts and the things I considered when making my decision. This is my experience only and is not medical advice. This is an extremely personal decision and the only right answer is the decision that feels right to each individual woman. Always discuss your options, concerns, and questions with your breast surgeon and care team.
My Options
Based on my diagnosis, which you can read more about in this post, I had a choice between lumpectomy or mastectomy.
The basics:
- Lumpectomy = removal of a portion of breast tissue around a tumor
- Mastectomy = removal of all breast tissue from the breast (unilateral is the removal of one breast, bilateral is the removal of both breasts)
I met with both my breast surgeon and plastic surgeon a few times to talk through my options. Each one came with its own procedure, recovery time, possible complications, appearance changes, and recurrence reduction rates.I referred to this handbook and lots of online resources to gather more information. I like the handbook because it has detailed information about the different phases of treatment, plus an appendix of worksheets, checklists, and questions to ask your doctors. Ask if your treatment center has a copy, or grab one on Amazon.
Others’ Opinions
This decision was mine to make, and in the end, I made it.
Looking back, I think the piece of advice I would stress the most is that the decision has to be yours.
You’re not obligated to seek opinions from family or friends. You certainly can ask, and maybe it is helpful for you, and if so, that’s great!
For me, I was very careful with this because I feel strongly that only I could make the decision for myself and my own body; I gathered all of the information I could and processed at my own speed. I didn’t want to be swayed by others’ opinions. On the flip side, I also did not want to put the pressure of a heavy decision on someone else.
While I did believe that only I could make this decision, I did discuss with my husband, and I am fortunate to have a partner that stood firm that he would support whatever decision I made. I do think it is important to discuss surgery options with a spouse/partner so that both parties are on the same page about the physical and emotional changes that come with surgery.
Others’ Experiences
If you’ve ever heard the phrase “your story becomes someone else’s roadmap,” I found this to be so true during this time. It was so important for me to hear firsthand what other women chose and how they felt about their decisions.
I read a lot of blogs, and I talked with mentors about their thought processes when making their surgical decision.
I highly recommend connecting with someone who has had a similar experience. Talking with women who have walked this road before me was a comfort.
A friend connected me with a local woman who had gone through two surgeries. I spoke with a couple of mentors through a program specifically dedicated to mentor relationships for women with breast cancer.
There are many mentor programs available (ask your doctor if he/she can recommend one in your area). I worked with After Breast Cancer Diagnosis (ABCD) to be matched with women to talk with while I decided between lumpectomy or mastectomy, as well as through other stages of treatment.
I also recommend the Young Survival Coalition for support for young adults with a breast cancer diagnosis. The online community is a great source of information for questions you might have or if you want to read about other women’s experiences. The group is so understanding because they’ve all been there, so it’s a good place to vent, find information, get opinions, and find encouragement.
Taking Time
I had neoadjuvant chemotherapy (chemo before surgery), so I had six rounds of chemo to get through as I pondered the lumpectomy vs. mastectomy debate, and I took quite a lot of that time to make sure I was making the right choice.
This was good and bad. It gave me lots of time to think, but it also gave me lots of time to think, if you know what I mean!
I truly feel as though I made my decision the day I met my breast surgeon. The time that I took to consider my options was necessary, though, in order to confirm that I was making the right choice for myself.
I definitely shuffled my feet to make a firm commitment, and I put off making the phone call to tell the care team which surgery to schedule. I needed to do this on my own time, though, and I did. This was a huge decision to make that I didn’t take lightly, and I took all the time I could to make sure it was right.
Trusting Myself
If I were to sum up my advice into only one thought (although I hope you’ll keep reading anyway 😉 ), it would be to do what feels right to YOU.
I was the person best equipped to make this decision. I know myself, my thoughts, my feelings, and I know what I can live with. I’m the only person who lives in my skin in this life, and I am the one who continues to live in it after surgery.
Allowing Myself to Feel and Reflect
Breast cancer is emotional in so many ways, and making a surgery decision wasn’t exempt from that. I experienced the roller coaster of emotions, but I let them happen as they came.
I let myself be angry that I had to make this decision at all.
When I was in a good headspace, I reflected on all of my options. I am a “list person,” so I made a bunch of lists. I weighed the pros and cons. When I got angry again, I tore up the lists, sat in my confusion, and then made more lists.
I had hoped an answer between lumpectomy or mastectomy would emerge from the lists, like the one below.
Eventually, I came to accept that there was no answer I would want, except if I suddenly no longer had to have surgery. No woman wants to make this decision. They all came with drawbacks and difficulties.
In the end, I reflected most on what would help me to feel most at peace.
Considering What I’d Gain and What I’d Lose
While I mentioned before that I knew I had made my decision the moment I was diagnosed, I still took a lot of time to commit. I needed to consider all of the things that I was gaining and losing with each decision.
Symmetry and Appearance
From the start, lumpectomy didn’t sit well with me personally. I tried to consider it equally, but I ruled it out pretty early on. The goal of the lumpectomy would have been to remove a discrete portion of breast tissue; the tissue would then be analyzed to determine if there were “clear margins” (meaning, the tissue around a cancerous tumor contains no cancer cells). More tissue would need to be removed if there weren’t clear margins, and a mastectomy may have been required anyway in some cases.
Because my original tumor measured rather large, 9 or 11 cm depending on the imaging, the area that would be removed would have been substantial. I didn’t like the idea of not knowing if I’d have to go back for a second surgery or mastectomy–I just wanted the cancer o.u.t.
When breast tissue is removed during mastectomy, nerves are damaged. This means that I no longer have much feeling in my chest that extends under my arms.
Symmetry/sameness was fairly important to me. To be completely honest, it felt strange to consider “looks” in this decision. It felt unimportant in the grand scheme of things, but it wasn’t. Mastectomy would radically change my appearance, while lumpectomy would do this to a lesser degree. Everyone deserves opportunities to feel whole again, and this is an important part of the decision.
Breastfeeding
This is a huge factor for young women with breast cancer. I thought long and hard on this, especially since I do not currently have children.
Did I want the option to breastfeed in the future? Yes, of course I wanted this. This particular loss gave me a lot of pause in deciding between mastectomy or lumpectomy. Did I want to give up the chance to ever try to have this experience?
I spoke with a woman who chose to have a unilateral mastectomy on the cancer side and had plans for a prophylactic mastectomy on the other side in the future after breastfeeding. I considered this option for myself, but in the end, I chose what felt right to me.
Peace and Fear
The question I reflected on most was, “What will give me peace?” The answers to this question are what made my final decision. What would I be able to live with after treatment?
The word “cancer” as it was spoken to me for the first time will always bring a degree of fear. There will always be the unknown question of whether or not it will return, no matter how small that chance is. I chose to see my surgery decision as a chance to replace that fear with peace. I will worry, as I imagine everyone who has experienced cancer does, but I know my decisions will allow me to feel at peace.
Do I Regret My Decision?
The short answer is, “no.”
My approach to all treatments and decisions given to me has been that in the end, I want to be at peace with the decisions I made. I wanted to feel as though I did everything I possibly could to prevent this from happening again.
I took the opportunity to make the odds of recurrence as small as possible, so I took it. I’ll cap my “beating the odds” quota for this lifetime at being diagnosed at age 30; thank you and goodnight, cancer.
Your surgical decision is yours to make, and it is yours alone. Whether you chose lumpectomy or mastectomy for any reason at all, there is no one right answer and no desirable choice in all of this. The only thing that remains constant is that you know yourself best and are the best person to make the choice (given the recommendations from your doctors).
Anyone else’s opinion, solicited or not, is not your experience. They may be able to provide insight, but they don’t know how to make this decision because at the same moment in time, they don’t have to. Those individuals do not feel what you feel. They may not do what you decide to do.
There may be people that think I’m crazy for having a double mastectomy at age 30. It’s fine; I might be, but that’s a different discussion anyway. 😝 I don’t regret my choice, and I think it’s important to remember that this decision is personal to each individual.
If you are facing this same decision, I’m sorry it is one you have to make. You will make it and move forward, differently, but forward nonetheless!
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