DCIS -- Treatment Decisions

[Red91RU]

I'm 39 years old and newly diagnosed with DCIS, ER-positive and HER-positive. Breast cancer seems to run in my father's family though noone has tested positive for BRAC-1 or -2.  I feel very fortunate to have been diagnosed as my mammograms and ultrasounds came back normal.  Only MRI detected an abnormal lesion.  An MRI guided core biopsy showed atypical cells. A surgical biopsy showed DCIS without clean margins.  I'm emotional drained as it has been 4 months since the MRI came back abnormal.  We're getting closer.  I'm going back in for surgery next week to get clean margins and hopefully the diagnosis will remain DCIS.  Assuming it is only DCIS, I'm lost as to what treatment option to pursue.  Standard treatment calls for lumpectomy, radiation and Tamoxifen.  Sounds good on the surface, but looking forward, I'm terrified that if I go down this path and it comes back, my only option is mascectomy and likely no reconstructive surgery because of the failure rate of reconstruction on radiated tissue.  Or, I can get aggressive and do preventative surgery -- masectomy.  My doctor says if I go down this path, I will not need radiation or tamoxifen.  Intellectually, being ER-positive and HER-positive, I feel like masectomy with reconstructive surgery is the way to go.  But emotionally, I'm terrified.  My husband is supportive of whatever choice I make, but doesn't seem to understand why I'm considering masectomy.  His feeling is, we'll go down that path if it comes back.  His concern is masectomy and reconstructive surgery is major surgery and not without risk.  I understand this, but what noone seems to understand is that I will never trust the results of a mammogram again because my cancer has not been detectable on mammogram or ultrasound.  And what if it comes back invasive?  I'm interested in your experiences to help me make a decision.

[Sue0871]

I too was diagnosed with DCIS with no findings on either a mammogram or ultrasound.  I had a nipple discharge and a biopsy.  Later I had the MRI and it lit up like a Christmas tree!  I tried two lumpectomies and neither one resulted in clean margins and ended up with a mastectomy with immediate reconstruction with a tissue expander.  I wish I had done the mastectomy from the start, the moment I woke up from the surgery, it was like a huge weight was lifted off of me.  I am nearly done with my reconstruction process.  I will be having the expander removed and my other breast augmented to match in a couple of weeks.  The mastectomy was not near as bad as I had imagined it would be.  I actually could not tolerate the pain medicine and recovered totally on Tylenol.  Most of all though, I think the absence of worry was the best part.  I didn't have to worry about dcis returning in that breast, I didn't have to worry about radiation and its complications, and believe it or not I am actually looking forward to having two perky breasts.  My husband was the one that didn't want me to have the mastectomy.  He thought that it would be too tough on me emotionally, but actually it was quite the opposite.  I couldn't look at my chest for a couple of weeks.  My husband took care of all the dressing changes and stuff, but once I got the nerve, it really wasn't all that bad.
Whatever your decision, stay positive. I am considered high risk.  Although I tested BRAC negative, both my mother and father had breast cancer.  My oncologist said I have to have a mammogram and a mri each year, six months apart.  

[nannotnancy]

I was diagnosed with DCIS also, in July 2008.  I was very tempted to go with mast., to "get it over with", and never have a recurrence.  However, I learned that there is breast tissue in the chest wall, armpit, and even neck, so mast. is not actually a guarantee.

I decided to have excisional surgery (actually needed 2 surgeries because no bad cells were found on first), then 5 days of partial breast radiation.  It appears that all the DCIS (8 mm) was removed during a  biopsy, because none was found on either surgery.

Right now I am comfortable that I've done all I can for myself.  It is now believed that my treatment is "state-of-the-art", but of course I'll be monitored for life.

BTW, the cosmetic results are better than I expected--the scar is along the aerola line, and is fading with time.  The lower half of the breast is on the "numb" side, but not the nipple.  Oh well!

Good luck to you.

[moejo]

Hi I am very sorry to hear about your diagnosis. I  was just recently diagnosed with DCIS as well. I found out on Friday what my two options were as well. That is a lumpectomy followed with 6 weeks of radiation, or mastectomy with reconstructive surgery. I have been leaning more towards the mastectomy. I know myself and my brain and every year I will wonder if it has come back and maybe the next time I won't be so lucky that they caught it early. My husband and I have had a tough go around for the month of December on December 11,2008 he had to undergo a revision to his shunt in his brain for hydrcephalus. Than a week a later I was diagnosed with breast cancer. So this has been very tough. I am not sure if you have any relgious beliefs but prayer has been very helpful for us. Just follow your heart and your gut. Also just talk to other people you may be surprised how many women would choose to do the mastectomy versus the lumpectomy for the fear of it coming back. Good luck to you and whatever decision you choose to do.

[pattysb]

I too was recently diagnosed with DCIS end of Oct....48 yrs old, single mom...mom had died from ovarian at 67, brother died leukemia at 36...father died heart diesease at 47....i had several areas of dcis and the lumpectomy would have left me really mishaped so I opted for mastectomy of left breast on Dec 19th....they did immeadiate reconstruction using a bit of belly fat (tram).   I got out of hosp on xmas day, and I am now recouping....I have to say my new boob looks amazing and I know my new tight tummy will look great as well... in a few months they will go back in for some fine tuning to adjust boob size to they match....now for the not so great news....you really need to have someone who can help you ALOT...because I can't do anything myself at this point....you have to sleep somewhat upright for the 1st few wks...I,m on week 2 and really sick of sleeping this way....having a walker is a must!!!!  and I have been having lower back pain, probably from the stomack incision....my mds told me no showering for several wks or driving....yikes...in my heart i know its a bit rough right now, but I think I,m going to come out looking better then I did going in...good luck  happpy new year

[Red91RU]

Sorry to hear of your uncertainty and required travel to get answers.

I had the MRI done at my insistence.  One year ago, I had a mammogram come back as dense breast tissue difficult to read with a recommendation of a 6 month follow up.  My 6 month follow up was officially "normal" according to the radiologist report but they had taken extra pix of my left breast and I freaked out.  Breast cancer runs on my father's side of the family so my doctor agreed to send me to get an MRI done "if it would make me feel better."  It took me 6+ months to get around to do the MRI because my doctor didn't think it was necessary.  I never expected the results to be this.

From what I know of MRIs, they cannot determine whether there is a malignancy or benign finding.  Only a biopsy can do that.  The MRI can highlight abnormalities that other tests like ultrasound and Mammograms cannot see.  The abnormalities may be benign or malignant.  An MRI guided biopsy ensures they are able to biopsy the concerned area.

It took 3 months of tests to get a diagnosis.  The biopsy is the only way of really knowing.  Good luck with your testing.  Get it done.  

[misawa47]

I am very sorry for the results of your MRI. I am curious to why you had an MRI. I am 47 years old and had a mammogram in Jul that showed microcalcifications in my left breast. I had a biopsy of that area in Nov as well as an ultrasound of 2 lumps that I found in my right breast. The doctor determined the lumps to be breast tissue.

I received my results from the biopsy 4 days later (came back benign), but upon examination by the oncologist doctor of my right breast, he ordered an MRI to find out about the lumps in the right breast which I had on 1 Dec. My mom and older sister had ovarian cancer. I just called yesterday for the results and was told on the phone by the doctor (I live in Misawa and the biopsy was done in Hawaii) that the MRI showed a mass 4.3 cm deep from my nipple that was not a cyst and they wanted to have it
ultrasound and biopsied.

I wasn't prepared for what questions to ask on the phone. I researched the internet on what an MRI should show and it said it might be able to tell if a mass is malignant or benign. I don't have a copy of the MRI report but hope to get it within a week.

My concern is going back to Hawaii (expensive) and having a biopsy done that maybe could be watched for 6 months for changes???

Good luck to you as you travel this road. You are surrounded by friends who are hear to listen and provide support.  God Bless.

[japdip]

Just some thoughta as the final decision will be yours and yours alone. Mastectomy seems rather drastic for DCIS under your circumstances. A surgical would not obtain clean margins .... a lumpectomy should although doesn't always. Many women have successful reconstruction after radiation .... after mastectomy the only tissue exposed to radiation would be the skin .... the other tissue would have been removed. As far as trust in testing; there are more types of breast cancer than DCIS that are detected by mammograms. No surgery is without risk even though Mastectomy & Reconstruction would be a more lengthy procedure. It's truly a difficult decision but it remains yours to make. Kindest regards ....