Just Diagnosed & Struggling with what surgery is for me

One thing to consider is that you can always do a lumpectomy and then, depending on the results of the pathology proceed to a mastectomy, but you can’t go the other way around - once a breast is gone, it is gone.

I never really considered a mastectomy, but my tumor was much smaller than yours. I tolerated radiation very well, by the way.

In January 2016 I was diagnosed with grade 3 comedo DCIS 1.8 cm(so smaller than yours) ER/PR negative. Chose lumpectomy and had 3 1/2 weeks of rads. No regrets so far. Radiation was not terrible although I did have some skin issues. I would do it again if I had to.

Dear Snowing, I have no advice for you but am writing to let you know that I am right there with you. I am 48, diagnosed two weeks ago with DCIS, grade 3, comedo, 3mm. I have three wonderful kids, a great husband, a job I love, and a very active life that I want to be able to keep up with, but right now I am struggling to . . . I have literally flip flopped back and forth every day between lumpectomy/mastectomy and have lost so much sleep. I have consultations with two surgeons next week, and am anxiously awaiting their advice. Please hang in there and know that you are not alone! And thank you so much to the other members who have shared their experiences. It is so comforting to hear from people who have been through this!

I've benefited so much from this forum that I'm happy to share my experience.

After an abnormal mammogram and ultrasound in June this year, I had two biopsies - one for a small nodule (<5mm) and another for microcals. Both were in different parts of my right outer upper breast. Both were found with DCIS grade 2 with some comedo necrosis, ER+. My breast surgeon advised that I go for a mastectomy. He told me that the cosmetic effect from a lumpectomy would be poor as he would have to take out a good chunk of the quadrant. He also felt that mine was likely a case of multi-focal DCIS and he might not get a clear margin in a lumpectomy.

I agonised over the decision for about 2 months. I noted that if lumpectomy failed, I could go for mastectomy but not the other way round. I also sought a 2nd opinion and the doc felt that a lumpectomy was possible and she could give a fairly good cosmetic outcome. However, I analysed my report and saw that some samples taken outside the microcal/nodule area were also DCIS. That meant that there was a good possibility that my DCIS was more extensive than what could be detected. I was also not keen on tamoxifen following lumpectomy as I was concerned over its possible effects on my uterine fibroids, as well as it giving menopausal symptoms.

In the end I went with my gut feel and what I would be comfortable with. I had a single mastectomy with no reconstruction in Aug 2016. The report showed that I did have extensive DCIS - about 10 cm over half my breast. I could not have escaped mastectomy. I also had to do a sentinel node biopsy with 3 lymph nodes removed and all clear. To my great relief, I needed no further treatment. Do factor in that mastectomy comes with SNB, and if nodes are not cleared, there will be axilliary node clearance. Removal of the lymph nodes, even just 3, meant that I have to live with lifetime threat of lymphedema on my right arm.

My surgeon felt that I should have reconstruction given my age (45), but I just could not bear having a foreign object on my chest. I also did not want to inflict harm on other parts of my healthy body just to re-create a breast. I have small breasts, so I believed I can cope. Recovery time was also important for me. I need to work and take care of my family. With a simple mastectomy, I was able to get back to work and regained most range of motion 2 weeks after surgery. My fitness helped. Now in my 8th week, I feel pretty good, though I am not yet fully recovered. Still feel some numbness and discomfort on the chest, armpit and trunk. I have re-started exercises - yoga, zumba, jogging, but taking care to not exert too much too soon. Looking back I think I made a good, informed decision.

This website has a wealth of information and stories. Read through as much as you can. Everyone is different. Make your own informed choice that is suited to your situation. Don't rush. Good luck!

My radiated skin is beautifully clear and soft. My muscles are strong and in fact, my less dominated arm that was inflicted with a mx is stronger than my dominant arm. I opted against reconstruction and have absolutely no discomfort or limitations on my activity. Does that mean that my choices are best for you, absolutely not. I just want you to know that options exist for you and that others' experiences are not necessarily relevant to you. You need to consider what is specific to your case and to your personal priorities. Are clear margins likely? What is important to your body image and sexuality. How active are you? Do you have medical reasons to avoid radiation? Once you know what you feel is best for you, let us know and persons with your experience will be there to support your decision. It is your decision and it will be the right one!

Hi Snowing - I too have Factor V Leiden and also had a very similar diagnosis like you. I am 55 years old and I decided to have a bmx with immediate reconstruction. My surgery was September 2, 2016 and so far so good. The dcis I had was hormone positive and now I am taking arimidex. I started the arimidex three weeks ago and I am doing fine with it so far and my fingers are crossed. I have a family history of breast cancer even my uncle had it but I did not have the BRCA gene. The reason I choose to do the bmx was because my left breast had the dcis and I already had 2 biopsies on my right breast. I knew I could not emotionally handle living in fear that every mamogram on the right breast might reveal a dcis or cancer diagnosis. I was lucky to be able to have immediate implants and not have to have expanders. My breast surgeon helped me with my decision and I have no regrets. Whatever decision you make will be the right one for you. Best wishes for you!

Go to my page and read my posts, and you will see my full story. I had a LX for DCIS and later, when my right breast continued to grow things, I had a BMX. I am so glad I did since they found LCIS in the left breast we didn't know was there; I had reconstruction, didn't need radiation, and haven't looked back. You will hear a lot of opinions. YOU must make the decision that is right for YOU. No one else's cancer or body is exactly like yours, so no one can tell you what to decide. Here is the realization I finally made that helped me to make the hardest decision I've EVER made in my life:

This is not a choice between Six Flags and Disneyland.

You are not going to make a decision and go "Yay! I'm so excited!" You are going to make a decision and then still doubt yourself and wonder if it was the right one. Once I realized that, I had a slightly easier time of deciding.

I was climbing onto the operating table (I always go into the OR awake and alert with no drugs) and I said to my bs "So we should really do this...?" and she said "Well, we are now!" and laughed haha -- I was still doubting my decision as I climbed onto the table! But it was the right decision for me. I got an "aha!" moment when they found the LCIS in my other breast that we had NO idea was there. I could have died from that before they found it (my mother was dying of bc by the time we knew she had it). But even without the "aha" moment, you will feel better once you have made the decision. My bs told me that clinical studies have shown that women are happy with their decision -- no matter which way they went!

best of luck to you.

so many of these stories could be me. I have prelim stereo biopsy of DCIS grade 3 but lots of clusters of micro calcifications that span a good portion of my breast so bs said she wasn't confident she could get all of it so I'm schedule for umx in two weeks including reconstruction and lift/implant on other side to match. Just went today for my pre op appointment and I cried pretty much through the whole thing. That was embarrassing. I have no idea who would want to sign up for implants without reason. Yikes. 40 page consent form.

Now I'm second guessing if I should do bmx instead. So many decisions and trying not to make complete emotional one. Not easy that's for sure.

Hugs to all of you on this journey.