I'm sorry to hear that you've been diagnosed with breast cancer. May I ask what caused you to rethink your choice? Did you speak to someone who had a rough experience with a mastectomy? Are you concerned about the longer recovery? Are you concerned about having radiation, which I assume you could avoid if you chose a mastectomy? 

I had a choice and went from leaning-mastectomy to choosing a lumpectomy. I can't know yet if I made the right choice for my long-term health, but I did find the lumpectomy a very easy procedure. The only trouble from surgery was due to removal of three lymph nodes, and I assume you're not going to be able to avoid that. (The removal went fine, but the scar tissue was a bear, and I developed cording in my arm.) Frankly, I chose lumpectomy because the plastic surgeon made mastectomy recovery sound like something I didn't want to go through, but some methods sound easier than his.

One of the things to consider is how you handle uncertainty and risk, and only you can answer that. There are many good reasons to choose to remove the breast but especially if you are prone to worry or second-guessing. Another thing to consider is whether you want to go through radiation. I see that it is your left breast that is involved, in which case you may want to read about radiation on the left breast. Here's some info from MD Anderson: 

"...any time you need radiation therapy for the management of left-sided breast cancer, it's slightly more challenging, simply because of the distribution of organs located there. We do our best to prevent damage to the heart, lungs and chest wall by using different techniques while delivering adjuvant radiation therapy, but some organs like the lungs and heart could still be exposed to radiation, since the treatment fields may sometimes overlap."

I had radiation on my left side. Do I wonder what is in store down the road? Yes, a little.

I hope this is helpful and also hope that other people share their experiences. In the end, you need to go with your gut. Wishing you all the best.

My sister had a rough time with her mastectomy & then reconstruction . And yes, the possibility of an easier recovery with the lumpectomy & not having to miss as much work makes this option sound better.

Though I am not prone to excessive worrying, I don't want to worry about the cancer coming back. So in that case, the mastectomy sounds like a better choice. And, there is a very low chance I will need radiation if I do the mastectomy. 

So, I am torn. I am getting 2nd opinion just in case. Thank you for your input. 

Hello,

it’s a hard decision and I can relate. I had the option 1 year ago and ultimately decided to do a double mastectomy for a few key reasons:

1. I heard it was had to do a mastectomy later if you have a recurrence and did radiation.

2. I personally needed the peace of mind that my risk was significantly lowered by doing the mastectomy.

3. I was able to do the mastectomy with reconstructive surgery one surgery. One recovery, not multiple. 

I hope this helps. That’s my story and glad I did it.

It is definitely a hard decision, and it's wonderful that you are reaching out for advice and support. I am HER2 and estrogen positive, and I had a double mastectomy in late May. At the time, I thought I only had invasive ductal carcinoma in the right breast. After the surgery, Dr. Shook told me that it was in both breasts, but the left breast had lobular cancer. It was so small that it was not detected until the surgery. The recovery took time, but I was glad that I made the choice to do the double mastectomy. Due to the size of the tumor in the right breast, doing a lumpectomy was not a choice for me, but even if it was, I probably would have still have done the mastectomy to reduce future risk. It is a very personal and individual decision, however, and I am glad you are gathering information and doing research. You have to do what is right for you and your body. You are in good hands with Dr. Shook and his team. 

@Ironmom5, the lobular in your right breast is a good point! I don't often second-guess my decision to do a lumpectomy, but when I do, that's exactly what I worry about. I had lobular in my left breast, and I know that it is more likely than others to occur in both breasts and is, of course, difficult to see. My heart is beating a little fast just typing this! I'm glad I have an MRI coming up soon.

@PKCG, regarding radiation in the left breast, see my post on Deep Inspiration Breath Hold. I hope I didn't alarm you about radiation on the left breast. It's not like it's uncommon to have cancer in your left breast; in fact, cancer is more common in the left breast than the right one. I was just suggesting that if you're torn between two options, information that moves you even 1% may help you decide.

@Gwoodhood, one surgery sounds ideal. I'd probably have done the same if it had been offered to me.

I had the same diagnosis but with Her 2 Low and spread to the lymph nodes and had 12 lymphs removed along w a double mastectomy. I had Dr Shook too. And Dr Martin. Both amazing! I did the double mastectomy and I am glad. A lot of my markers/scores showed aggressive numbers and my biopsy showed spread outside the lymph-nodes  That was last August and after 5 mo chemo, 1 mo radiation and now waiting for reconstruction scheduled for Dec 4, 2024 I have been happy with my choice to take it all off and relieved that it is gone. The expanders aren’t that bad honestly (I have had them for over a year) and I didn’t have any trouble with the mastectomy. It was easy peasy. I expect the same for reconstruction. It is a very personal choice though…and an unfortunate one to have to face. I am sorry. I wish you lots of love as you decide what is best for you. Hugs.  

Hello and first of all, I'm so sorry you're going through this. Hopefully you find this forum of women helping to answer questions and provide support, comforting. 

I had a very similar situation of DCIS with the option of doing a lumpectomy or a mastectomy. While I would never speak for anyone other than myself, I think because the whole situation of being faced with cancer is so overwhelming, you want to do what you think is least painful or least time consuming out of the options. I chose a lumpectomy of my left breast and faced a long series of radiation. That was very time consuming and exhausting. I went into my decision with positive intent and believed I was "safe". 

Unfortunately, 3 years later the cancer came back and a double mastectomy was the only route we could take. Yes, even more devastation to go through again and the surgery itself was definitely not fun. The recovery was emotionally draining but overall, if I had to look back and do it over, I'd have chosen the mastectomy the first time. Why? Because the cancer DID come back and therefore it was a double whammy of emotional trauma. Also because I had the lumpectomy of my left breast, when I finally did reconstructive surgery, my left breast is much smaller than my right. That's mostly because of the damage to the skin from the radiation made the skin so thin to form my new left breast. That was hard to see in the mirror for a very long time. There may be new technology for this whole process I'm explaining (this all happened for me in 2014). 

Now I don't care what my chest looks like - I just look at my body as an ALIVE body and I'm thankful for every day.  Good luck in whatever choice you make. Keep us posted. 🌺 

Thank you so much for sharing your journey. I am so sorry that you had to undergo cancer twice, but am happy that you are now healthy. I will have a few more appts before my surgery but for now I am leaning towards the mastectomy . Your feedback is so helpful to me. 💖

Thank you for your feedback. Since I first posted, I have seen my oncologist who is also leaning towards mastectomy for me. It is still an option to do lumpectomy but since I have 3 spots, and they also don't know what else may be under them, the lumpectomy will leave me pretty disfigured. 

Your reasons for doing the mastectomy are also the reasons I have in leaning towards that procedure. I appreciate your input & am glad that you are happy with the choice you made. 💖

First off, I would like to thank all of you that have taken the time to give my your feedback. Hearing your journeys and how you have made your decisions is meaningful to me and gives me hope that I will also make the correct decision for myself.

I have an update to my journey in figuring out my next steps. But, I am even more confused. I have seen Drs Shook, Martin, and Pluard. They spent a lot of time with me and all recommended unilateral left mastectomy with reconstruction. All feel that though my 3 spots are small, that they will have to take a fair amount from my L breast and I would be pretty disfigured with the lumpectomy. I have implants and want to be smaller. Dr. Martin will reconstruct my R side during the same surgery and I will have a spacer in my L chest for about 3-4 mths. Then that side will be reconstructed to match my R side. 

  However, I had a 2nd opinion with Dr. Beahm for my surgical options yesterday. She also spent a lot of time with me and seemed to think that I could easily have a lumpectomy with radiation on my L breast and reconstruction. She feels that my implant is stretching out the area in my breast to make it look like a larger amount would have to be taken out than what it really is. 

So, as said earlier, I am even more confused on what to do than I was at the beginning. Dr. Shook and I have another meeting on the 9th. Will let you know what transpires...

That's so interesting about the implant! For what it's worth, Dr. Beahm did my surgery. Based on my initial imaging she thought I would need a mastectomy, but once we got all the information back, she felt confident that I could do a lumpectomy with radiation. I had reconciled myself to the fact of a mastectomy so I hesitated, but when she said "If it were my sister, I'd tell her to get a lumpectomy" I decided to go with it. She removed a portion over 3cm wide and got clear margins and you cannot tell anything was removed. At least I can't. She seems to feel a slight dimple when she examines me, but whatever. Keep us posted after you meet with Dr. Shook again. I hope you get clarity soon!

I met with Dr. Shook again last week and have decided to go ahead with the unilateral mastectomy on my L side with reconstruction eventually. I feel good about this decision but am ready for this to be over with... 

Again, I appreciate all the input and feedback from you all. Wishing all of you Good Health.Xx

I know this is a big decision. But, know that you and only you know what is best and believe in that! Onward and upward my friend! 

Clarity!!! 😀 Wishing you the best with your surgery and recovery. We are here for you. Keep us posted. 🤗