so confusing

Birchbeer6

Im very appreciative that I found this board and am grateful for all the kind words and advice....but trying to go over options right now, and reading the posts from other ladies is making more confused....I dont know what to do.....and whats best for me..Do I get reconstructive surgery right away?? will I be able to handle no breasts if I didnt???? do i get prothectics? alot of pros and cons reading other posts....I just dont know what to do.....I do have myself to think about first....but my kids are always on my mind....Can I handle the recovery?with or without reconstruction. I cant believe I have to go threw this....I just want to move on with my life and be happy....I know after all of this is said and done.....I will be a totally different woman. Im afraid that I will be so depressed that i wont be able to cope....

Mantra

Hi, sorry you have found yourself in this position. Can I ask if the surgeon recommended mastectomy? Many people who have low grade DCIS have a lumpectomy with rads. Not sure what type you have.

I had high grade along with some other stuff that made me choose to have a bilateral mastectomy and had a SNB on the cancer side. I don't have young children so my children and husband took care of me. I also had Home Care provided by the government. The recovery wasn't difficult but the restrictions were. One in particular will affect you . . . the restriction of lifting your children until the surgeon gives you the go ahead.

As for reconstruction, it's a personal choice. First you have to decide if you want it. Then you have to decide on what type. Implants normally have the easiest and shortest recovery period. It's the route I chose. 

You have a lot of decisions to make and you've come to the right place to get some answers from people who are going through what you are going through.

CandDsMom

Hi Birchbeer- sorry to hear about all of this, the weeks after diagnosis while we were still finding out more information (ER/PR status, MRI breast results, BRCA testing results) were the toughest.

There are a lot of options out there, I guess it depends on what your doctors think you are a candidate for. As Mantra said above, if it is low grade DCIS and/ or a small amount of it you may be a candidate for lumpectomy.  You can always have an MX or BMX later but the BMX can't be un-done.

I had one myself, due to age (35), receptor status, multifocal/multicentric disease, strong family history, etc, but having a BMX is a big deal - it changes your body in ways you can't really imagine until you have gone through it.  I am happy with my reconstruction (now 5 surgeries later!) but things will never be as they were before.  Do you have an oncologist or a primary doctor who can help you talk through everything?  The good news with DCIS is that you have a bit of time to figure everything out.

(((hugs))) to you and best wishes for your decision making.

Emaline

Your doctor should be making a recommendation on whether you should get recontruction right away. I know for people who are just getting a mastectomy, it seems most start reconstruction at that time. If you are going to have a lumpectomy followed by radiation, I was told by one plastic surgeon that I would have to wait a year and then see what options work best for me.

I know you are going for your second opinion soon, so I would wait.  Someone should be recommending a plastic surgeon for you. If you are going to opt for a mastectomy with immediate reconstruction, your surgeon needs to coordinate with him. I would ask your surgeon for a recommendation.  You may also want to check your area and see if there is a breast cancer support group in your area.  I know those ladies will have a wealth of knowledge.

I did read one blog by a doctor who recommended to all his patients that they wait a year between mastectomy and reconstruction, this way they are less disappionted by the results.  That is just one guys opinion.

I believe your insurance should provide you with a prosthetic but am not sure. I need to ask my doctor about that myself. Both of my friends who have had cancer, both received prostethics.  I just don't know how that works.

You will handle the recovery.  My friend had her surgery back in February and she was on her feet in a few short weeks. Both her and my other friend said the mastectomy was much easier then expected, it was the drains that drove them nuts. However, everyone is different.  With my excisional biopsy, I took 3 percocet the first day, then switched to Motrin for the next 2 days and then didn't feel I needed anything.  You know yourself best.  Surround yourself by family and friends.  Set things up so you will have people to help you. Don't be afraid to ask for help.

 

Birchbeer6

My dr. did recommend a mastectomy on left breast, since Im assuming cause the DCIS is all over...she did recommend doing a bilateral one so I dont have to worry about the DCIS coming to the right breast....I did speak to a plastic surgeon allready....just waiting to go for my 2nd opinion on Monday.....which i really dont know why I should go for 2nd opinion....what are they going to tell me that I dont allready know.????

CandDsMom

Hi Birchbeer-

Again, I don't know your specific circumstance, but I would try to pin the breast surgeon down as to what percentage risk you have in developing DCIS in your remaining breast.  Did she not tell you where the DCIS on the left breast?  Usually the BS should be able to back up the recommendation by showing you on your mammo or MRI where the disease actually is.

Re: the risk of new DCIS or cancer in the opposing breast, I can't remember the number I was told but it was lower than I thought.  Have you met with an oncologist? I strongly urge you to do so to help you really parse those numbers.  Unless you are BRCA+ or the other side has ADH or LCIS or something it is actually pretty unusual to hear of someone being urged to have BMX right off the get go.  It is much more common for someone to be in the position of saying - hey, I don't want to live with this risk, take them off then hearing the surgeon recommend this.  

I think second opinions are definitely worth while - is this a BS or PS second opinion?  I would recommend a second opinion from a breast surgeon or oncologist as well. Medicine is an art as much as it is a science, and you'd be surprised at the variability that is out there. Do you have access to an National Cancer Institute Affiliated center to get the 2nd opinion from?

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html

The above is the link. Good luck with everything!

Emaline

I think a 2nd opinion is definitely in order. Many doctors will recommend different things.  My first doctor said mastectomy right off the bat.  2nd doctor said, well wait, maybe we can save it and just do lumpectomy.  He sent me for a breast MRI since I have dense tissue and he wanted to see what was going on in both my breast.  Even though he said they did not see anything further in either breast, due to the size that was removed...they are recommending a mastectomy for my left breast only.  I would ask for specifics on why they are recommending one over the other.  Is your DCIS multi-focal?  Even with multi-focal, if it is 5cm and under, I have heard that you can do lumpectomy.  Did they biopsy more then one area on your breast?

As for the other breast. If there is not something there now, I think that should be YOUR decision.  Some women make that decision that they no longer want to this fear hanging around and decide to do both breast and I completely understand that. It is my understanding that it is pretty rare for DCIS to come back in the other breast, however we are at more of a risk then other women with no cancer history for developing some type of cancer again which is why so many doctors recommend tamoxifen to help prevent that.