Diagnosed with DCIS at 22 years

Jamie0712

I have been having problems with my breast since I was 19 years old. It started with bloody discharge on my right breast so I went to see a general surgeon and had ultrasound, mammogram, and a bunch of other tests I do not remember now. It was found that there was a lump in my duct, and Dr felt like it may be the reason causing the bloody discharge. So had my first lumpectomy. I was fine the first 6 months or so, discharge went away. Pathology reports came benign that it was a fibroadenoma (sometimes prevelant in young women, dr's do not know why, or how to prevent, i guess they believe may be hormone related). Then bloody discharge came back after 6 months (this time minor discharge, but still bloody discharge), and routine ultrasounds showed I had a couple of lumps in my right breast. I decided to go to another doctor, he was a vascular surgeon. He believed was fibroademona again from ultrasounds. Finally one of the lumps was starting to grow bigger and bigger and he felt like I should do a lumpectomy. (Reasons for surgery for fibroadenoma are usually only if painful or if its growing) So I got my second lumpectomy on right breast (about year and half or so after first lumpectomy), came back benign and fibroademoa. I still had other lumps in my breast that were not excised because they were not growing or painful and was not a cause for concern. I had ultrasounds scheduled every few months or so just to "watch".

So about a year after that surgery, a new lump on my right breast occured and started growing bigger and bigger. I still have 2 lumps that were from the previous time but had not gotten bigger. The vascular surgeon stated I can just watch and wait and it isnt a cause for concern and think its fibroadenoma from ultrasounds and MRI. He said however he could do another lumpectomy if I wanted however since it was closer to the middle of my chest, he could not use the same incision on my nipple and would have to do a midline chest incision. I was not happy about that, so I decided to finally see a breast specialist.

Breast specialist took a look at my ultrasounds and history. She stated she would do a lumpectomy and use the same incision I have from my previous surgeries. So this past July 2012 at age 22 I decided to do my third lumpectomy and my right breast. I thought nothing of it, surgery and a few days I would be done with it and go back to work. The pathologist at the hospital couldn't decide my pathology results so they sent it off to vanderbilt pathology (apparently specialized pathlogist). I came back with the diagnosis of DCIS, noninvasive cancer.

I did genetic testing since there is some breast cancer in the family. All of the breast cancer genes, BRCA 1, 2, mutations and P53 came back negative. I had a MRI and mammogram. The right breast has 3 more lumps, one of them looks malignant (guessing DCIS) and 2 of them are cause for concern and need atleast a biopsy. In my left breast (never had problem with) there is some enhancement which could mean normal, abnormal, or cancer so they want a MRI guided biopsy (I have yet to do).

I spoke with oncologist and my breast specialist. My options are lumpectomy with radiation, or a right mastectomy with reconstruction. (I do not have to take tamoxifen because there are no studies that say it should benefit me at my age).
I asked the oncologist what she reccommends, she stated that since this is my third lumpectomy and I always have reoccuring lumps that eventually I will probably need a right mastectomy with reconstruction. And after my MRI guided biopsy of left breast, if results come back DCIS or even atypical cells that she would suggest a bilateral mastectomy with reconstruction.

I am 22 years old. I don't know what I should do. Lumpectomy with rads, mastectomy, or even bilateral mastectomy. I am leaning towards mastectomy at least. I have dealt with this problem and have already had 3 lumpectomies. But I am scared of the pain, surgery, recovery time, how my breast will look after, and how I feel about losing a breast. Also if I do a right mastectomy with reconstruction, will it look ok with my left breast. Should I already just do a bilateral mastectomy with reconstruction? I don't know. I need advice or help. Some days I feel ok, and some days I just cry because of this. I also feel like since its sometimes considered precancer, or that its noninvasive I am suppose to feel lucky or happy. But then I think Im only 22, and I've had to deal with all of this and now deal with maybe losing my breast now. I just need advice or just some encouragement. I don't know what to do. Thanks..

Linda1966

Im so sorry, your far too young to have to deal with this crap Jamie and your dealing with it a lot more maturely than I did when I was your age and had a lumpectomy which was a fibroidenoma. I do remember thinking back then that to lose a breast would be the end of my world. 20 years and a lot of maturity later, I had no problem having a masectomy to get rid of what was initially dx as dcis. I did end up with a small amount of idc as well which probably helped to make me glad to lose my breast. I havent had recon but there is a lot of success stories here in BCO and Im sure someone will come along to tell you all the pro's of reconstruction.

 I think you are the only person who can decide what level of surgery you can live and deal with at this stage of your life. I guess the first thing is to wait for the results of the biopsies and in the meantime gather as much information as you can from all sources.

 To allay your fears, I will say the masectomy for me was no major deal pain wise. My surgeon said he wasnt cutting through muscle so there would be no reason for major pain and he was right. I felt the loss of the lymph nodes much more but doing the exercises that are recomended dilligently as soon as they allow you to will help recover the full use of the arm/s fairly quickly.

 I do think you need to speak to other ladies your age who have dealt with this. Hopefully they will see your post and help you with their experiences. Sadly there are too many your age being dx and treated at the moment and many have found us here at BCO.

Im so thankful though that your doctors have taken you seriously and that you havent had to fight them to have your situation recognised. Thats usually the first hurdle and thankfully your dx'd and on your way which really does remove some of the uncertainty in my eyes.

 Finally do you have family who can help you with all of this? Talking all the issues through with a loving family and friends, the medical professionals and hopefully other ladies your age with the same issues, will probably help you make an educated decision thats right for you which means you wont be having any regrets down the track.

lisagwa

Linda1966- as you will probably hear from others, this is a very personal decision. I feel bad that you have to go through this at an especially young age. However, you sound bright and capable.



Being that you are young and already have had several problems with your breast, if it were me, I would definitely choose a mastectomy. (I wouldn't then worry about future lump problems or possible problems caused by radiation and having a lumpectomy.) You would need to either have a close watch on your other breast and decide about this. if you mentioned there was breast or ovarian cancer in your family, this is something to consider as well when deciding about your other breast.



As far as reconstructive surgery, you can research, get recommendations, look on these boards, to find names of great certified breast surgeons. You might want more than one opinion. I recently had implants and am very happy with my decision. There is a thread on these discussion boards for "young women with breast cancer." There might be other threads that could be helpful to you as well. ((Best wishes))

Jamie0712

Linda1966 -

 Yeah I need to scheduled my MRI biopsy for my left breast and also biopsy for my right breast, unless I go ahead and decide with mastectomy. And thats good to hear that mastectomy wasn't too painful. I am actually a RN and I work on a floor that have the post surgical mastectomys so I do get to see women and how they deal with the pain, drains, and so forth. And ever since this diagnosis I def talk to my patients more about how they deal with everything. However it still doesn't neccesarily make me less scared of going through it..  And yes I do have family and loved ones that have been helping me a bunch go through this. They want me to get the best treatment and they want me to do what I am comfortable with, I do feel like most want me to do a mastectomy. But thanks for your reply I will def look around this forum and find women around my age and see how they dealt with this

Jamie0712

Lisagwa- Thanks for your thoughts. Yeah, some days are really great and some days this whole ordeal gets to me. I do not have ovarian cancer in the family, thank goodness or else I know that would be another problem down the road. Yeah I have been researching as much as I can about reconstructive surgery (also I am a nurse that works on a post surgical floor, so we deal with mastectomys). I am thinking implants if I go that way...