Surgery in 2wks. Considering watching & waiting. HELP!

Multi-focal (located in more than one place in the same breast) is generally treated with MX since it is more widespread.  If you have only had a biopsy at this point, then the measurement of 4mm is based only on a small sample of the DCIS and is not a measure of its true extent.  I had DCIS in two spots close together, so my BS tried to get it with lumpectomy.  After two attempts with involved margins, I had to have MX.  I was terrified at the prospect and could not make the decision to have MX without first trying the lumpectomies.  Ultimately, there was no other option.  I am almost 4 months out from my BMX and just had the second stage of my reconstructive surgery.  As much as I had feared this process, it is doable and there is peace on the other side knowing that I have been very aggressive in tackling the cancer.  Lumpectomy + radiation + Tamoxifen may have the same survival rate as MX, but it has a much higher rate of recurrence (something like 12 - 20% depending on the study).  I did not want to go through this nonsense again!  I am happy to not need radiation, and I had a BMX so I do not need to take Tamoxifen.  The decision-making process is grueling.  Recovering from surgery is almost easier because the worst is behind you.  I would not have felt comfortable with the watch-and-wait approach.  If it becomes invasive and you need chemo with your MX, will you regret your decision?  I hope that my BMX will be an outdated treatment very soon, but I know that I have made the decision that is right for me given the current information.  Best wishes in choosing the treatment path that gives you the most peace.

Everything you are feeling is completely normal.  Breast cancer generates a set of crappy options, and then we have to make choices.  Different medical professionals have different views of DCIS, and that created a lot of confusion for me in my treatment path.  My MO said, "Congratulations -- you don't have cancer" and sort of laughed off my concerns.  I thought that I could maybe put off my MX until the end of the summer, but the two BS's I was working with did not want me waiting more than 6 weeks since the DCIS was high-grade and multi-focal.  I'd had an MRI that indicated suspicious spots in my other breast that were to be monitored every 6 months, but I decided to have BMX so I wouldn't have to deal with potentially more problems and stress.  After the BMX, nothing was found in the right breast.  I have no regrets at all about having the BMX though.  I have a 4-year old daughter and I just want to do everything I can to avoid letting this become a problem in the future.  This is just me blathering on about my experience and my persepctive (6 days after surgery and on pain meds ).  You have to do what you are comfortable with now and later.  

If you didn't do MX, would you try lumpectomy?  Did you consider a uni MX? 

digit, you have to do what you are comfortable doing.  If you are unsure about the BMX, don't do the BMX..... at least not right away.

Medically there is no reason to remove the other breast.  Personally I think doctors are irresponsible when they suggest the removal of a breast simply for cosmetic reasons.  If you do need to have a single mastectomy, a good plastic surgeon should be able to come up with options that provide acceptable symmetry.  Many women who have larger breasts have a reduction and lift on the good side.  Many of us who are smaller have an implant added to the 'good' side.  There are options other than just having a prophylactic MX.  And the real truth is that removing both breasts does not guarantee symmetry, if you are having reconstruction.  Our bodies are not symmetrical so reconstruction on one side might sit on the chest or fall quite differently than the other side.

Having said that, if you feel that a BMX is the right decision for you, whether to reduce your risk or ease your mind or if you want to just go completely flat, that's a completely different story.  I simply can't understand how a doctor can suggest removing a healthy body part. 

If you aren't sold on having the MX at all, I would suggest that you ask for each of the 3 areas to be removed with a lumpectomy. Then you will see what the results are, whether you have clear margins, how large each area of DCIS actually is, and how your breast looks. Based on that, you can decide whether or not to stick with that or whether to move to a mastectomy.

You have options.  If you feel that you were pressured into your decision or you're not comfortable with the decision, then consider the other options.  After a BMX, you can't go back.  But if you start with a lumpectomy, you can move to a MX or a BMX.  

Digit,

Because DCIS is non-invasive you can take as much time as you need to become comfortable with whatever you decide. I didn't have my lumpectomy until 6 months after my diagnosis. 

Besides the options that others on this board have suggested, you could also check out Dr. Shelley Hwang's study on taking tamoxifen before surgery to try and reduce the amount of DCIS you have. You could also look into Dr. Mel Silverstein's breast reduction surgery. (He does this in lieu of mastectomies when possible). You might also look into the stem cell regrowth procedure that Suzanne Somers did to regrow her breast as your reconstruction option. I thought this was only in clinical trials until I met another woman at our local Gilda's Club who was having it done and getting it paid for by insurance. 

Then too, have you gotten a 2nd pathology opinion? I was told I needed a mastectomy after I supposedly didn't get good margins with my lumpectomy. After consulting with Dr. Michael Lagios, a world renowned DCIS expert and pathologist, with a consulting service that anyone can use, he disagreed with my local pathologist. I found out that I did get good margins and didn't need any further surgery or even radiation as my score on the Van Nuys Prognostic Index was quite low. Since pathologists disagree up to 20 percent of the time and all treatment is based on your pathology, it is good to make sure that there is agreement before you proceed with your choice of treatment.

I wish you all the best no matter what you choose, but take your time. You won't make things worse by investigating all your options thoroughly.

Feel free to PM me if you have any questions,

Sandie

Please consider having the 3rd site biopsied now if you are going to delay your decision. What if the 3rd mass contains invasive cancer?

I don't think you should wait. My SIL was diagnosed with DCIS last year. Her first BS told her, "look, you could literally pack your bags and go to Tahiti for six months and nothing about this will change, take your time, there's no emergency here". Well, she and my brother got a 2nd opinion. She had a lumpectomy. There was IDC inside the area of DCIS.

Glad she didn't go to Tahiti!

@digit73, yes definitely check with a PS who is actually doing and proficient at flap reconstructions. I too was told I was too thin for any flap by the first PS I consulted, but he is not yet certified in microsurgery (My guess is he is only 35 or so and simply hasn't had time to acquire the necessary experience--but I am getting where everyone under 40 looks like a high-school student to me ).

I was so disappointed about this that I asked for a second opinion from one of the two PS who does microsurgical flap reconstructions for my health care system, I was told I am a candidate. Also, while the Center for Restorative Breast Surgery is highly-respected and there are many women here at bco who are highly satisfied with the outcome of their surgery there, there are also good reconstructive surgeons in other parts of the country. If, for whatever reason, you are unable to go there for your surgery, look for a PS in your area who does microsurgical flaps before giving up on that option. There may be someone here on bco who can recommend a doctor near you.

Hi Digit74, everyone who has replied on here has given wonderful advice/insight, but I also felt the need to reply to you. Having gone through this process over the last few months, I know how paralyzing the fear can be. The only real "advice" I have is to listen to your own intuition. From the moment my BS said the word cancer, I knew that I wanted to have a BMX. My team of doctors gave me a lot of helpful information and let me know that it wasn't "necessary" to have my right breast removed as well (I had to have the left one removed because my tumor was so large a lumpectomy wasn't possible without disfiguring me), but I knew it was the right choice for me. As scary as it was, I'm so glad I listened to my gut and did what was right for me.

I'm learning that everyone goes through this journey differently and there is no "right" way to do it. There's just a right way for you to do it, and only you know the answer to that.