Unilateral vs Bilateral and Tamoxifen... with a PS about guilt

The age old conundrum....no reason to feel guilty. You had breast cancer. It was just one step away from being invasive. The treatment (and decisions about treatment) are the same as an early stage invasive with a low onco-type score. The often do the same things - tamoxifen or an AI, radiation, certainly surgery. No guilt in my mind. Just relief that I was lucky enough to catch it when some women are not as lucky as me and you.

And Ducky, as for the MX, that should be your decision. If it will give you peace of mind, then you are most certainly NOT over-reacting. With your family history, I totally get why you are concerned and the size of your BC indicates MX as well. As for the prophy side, there are many women who have both done. It means one less surgery if you decide to do it later for symmetry. It has to be your decision. Once you make it, DON'T SECOND GUESS YOURSELF or it will drive you crazy.

Hugs and best to you whatever you decide.

Hi everyone,

I was diagnosed with grade 2 DCIS in December after mammo showed calcifications. I already had two excisional biopsy in April for adh and was suggested that I start tamoxifen afterward which I did in July. Unfortunately I have a lot of side effects from it. So when this latest biopsy came back Stage "0" DCIS I decided along with my bs to have bmx. My mo said if I have bmx I probably won't have to continue on the Tamoxifen so that option was a big plus for the bmx. I have a family history of uterine cancer so taking the Tamoxifen is increasing my uterine cancer risk.

Ducky179 I am scheduled for surgery on 1/13. I agree that this is a personal decision and what ever will give you peace of mind is what is important. Before finalizing my decision and scheduling my surgery my bs had me meet with a plastic surgeon, med oncologist and rad oncologist so I got everyone's opinion and treatment options. When I met back with the bs and told her that I didn't change my mind about bmx she at that point said that she thinks I am Making the right decision. I am only 43 and she felt long term I would be happier with the bmx.

This is a very difficult decision and very personal to each of us but I feel whatever you decide will be the right choice.

Sending hugs to everyone and thanks for the posts they are really helping me get through this

Ducky179- I had my BMX on January 20, 2015 for high grade DCIS (right side) at the age of 43. It was tiny about the size of a grain of rice BUT with my strong family history I decided this was the best route for me. I'm negative for gene mutations but my younger sister is BRCA 1#. She was diagnosed with Stage III breast cancer at the age of 27, 12 years ago and is doing awesome. On my paternal side my grandmother and aunt both died of breast cancer in their 40's. My grandmother had a uni mx, then a few years later she developed breast cancer in her other breast! With the BMX I avoided radiation and Tamoxifen. My BS said the BMX was all that was needed and the risks outweigh the good as far as Tamoxifen goes. It wasn't easy but can be done. My reconstruction (TE then implants were placed) is completed and I'm back to my trail running. I wouldn't change the way I did things and am VERY thankful for my outcome. Follow your gut instincts on what to do. You would not be overreacting if you decided on a BMX. I'm sending you a hug!

Susan3 - by definition, you couldn’t have had a similar diagnosis if you had metastasis to a lymph node. It is impossible for pure DCIS to do that, so you must have had at least a small amount of invasive cancer to begin with.

Just don’t want to scare new people coming here with a pure DCIS diagnosis.

I agree Annette, DCIS IS a very different diagnosis than IDC . We need to be cautious when offering information, especially to new people who are scared to begin with. Ducky 179, DCIS is not invasive , it is 'in situ'. Hang n there and surround yourself with supportive people!!

Jr114-I will be sending positive thoughts your way on the 13th. You can and will do this. I still remember every bit of it very vividly but as I went through each step of the process(biopsy, pre-op, sentinel node dye injections, BMX, drains, TE fills, and 2 reconstruction surgeries) I would quickly move on to what was next and focused on the future. And I think ALL of us ladies are badass, super strong women! I'm so thankful for BCO and the women that have helped all of us.

I've just been through the wringer with several docs, trying to force me to chose radiation and hormonal therapy instead of a double mastectomy. A couple of them tried to guilt me because other women are much sicker than I am now.

I thought and think that these doctors were totally out of line. As for feeling guilty, no, you shouldn't. You didn't chose your diagnosis and you didn't inflict another diagnosis on anyone else. You can feel wretched about it all day and all night and then all day again the next day and you know what? It won't make any difference. You will still have the same diagnosis and so will the other women. It's not your fault or theirs. Nobody chose it. It just is.

If you want to DO something to actually help a sister who has more advanced cancer; say, drive her to her appointments, or sit with her while she gets chemo, or some such; then that would be helpful. But guilt just weakens you in your own fight and puts you in a position where you can be manipulated and bullied.

We are all going to die one day. It is the universal human condition and nobody gets out of it. For all I know, this DCIS may come back around and take me out. If it does, that will not be your fault or the fault of any other woman with breast cancer. It could, however, be a bit of my own fault if I allow docs to bully me into not doing what my instincts tell me is the right thing.

I chose to do the thing that gives me the best chance of living a long, happy, cancer-free and side-effects-free life. Whatever your choice, it is YOUR choice. Guilt is corrosive. It will wear you down. And it will not help anyone else.

Scared- I am sorry that you are facing this type of decision... I chose to have nipple sparing bmx. I feel good about my decision and still do 4 weeks after my exchange surgery. I had a choice of lumpectomy and radiation or mastectomy. I chose the bmx route bc I didn't want to have the constant worry every 6-months of more biopsy, testing etc. I had already had a us guided biopsy, two excisional biopsy (the second one was to get clear margin after the first one came back with adh bordering on low grade dcis) and another biopsy guided by mammogram within the past year. My bs said I had a lot going on in my left breast....ya think!!!! I had a very supportive husband which made my decision a little easier.

It does take time to get used to having "foobs" but everyday it gets better. Ihad tissue expanders that were definitely uncomfortable but once the exchange surgery was complete it was MUCH better. I have been shopping for some new clothes bc things fit differently now....some better some not.

I had a lot of confidence in my bs and ps. I am very happy with my out come. They never will be like "my" breast but I am ok with that. I am 43 with two teenage boys... The past year was like a blur with the testing and worry. I am very grateful that my diagnosis wasn't worse than dcis and I hope that I can eventually get past the worry that I will have a reoccurrence. Since having the bmx I didn't have to do radiation and I am not taking tamoxifen which was a plus.

Silicone mentor cpg 555 is what I went with. yes they are much safer now. They didn't recommend using saline. They are the anatomical ones that look a little more natural not so round. I went a little bigger then what I was. You can kind of control how big you want to be with the tissue expanders. I am 5'1 and before having kids was a little bigger and that was what I wanted.

The scars are fading and don't really bother me. The incision is about 3 inches on the side. My appearance looks great....my husband agrees. (He also loved my old ones as well). He was very supportive and sounds like your husband and wanted them gone. I have very little feeling in my skin which takes a little getting used to. They said I may gain some feeling with time but I am not counting on it. They definitely take time to get used to but I am happy with my appearance in general and if I didn't tell you that I had foobs you wouldn't know it. (That might change as I get olderand my foobs haven't aged... They will still be where they are now)