First time

I'm sorry you have to be here.  But, one thing about DCIS is that it is not an emergency and you have time to carefully make your decisions.  I had a lumpectomy and radiation and I am very happy with my decision.  It was a whirl wind.  They had me in surgery very fast.  But I found out later that you really do have time to make your own decisions.  A DMX is hugh and you might want to read as much as you can from the women on this site that had that done.  The pros and the cons.  They will tell you like it is.  It's great here.

There is a resident expert named Beesie.  She has detailed information about DCIS that may help calm your fears. 

What I learned after going through this process is that it is a very personal decision and at the end of the day, you have to be satisfied with your decision.

Please ready what Beesie writes and take your time.

Good luck.  Everything will be ok. 

Eileen

I had two areas of DCIS that were next to each other. So the lumpectomy was larger than normal.  My right breast is much smaller than the left.  I have also thought about getting my left breast made smaller. 

For me, the lumpectomy did not hurt at all, radiation did not hurt at all.  All in all, the process of very easy for me.  So, if I decide to have my left breast made smaller to match the other, I at least have an idea of what surgury feels like.

I'm going to wait for that decision.  I have an insert that I put in my bra when I wear cloths that are form fitting.

i agree with ej01

prncsviolet: I was diagnosed on Oct 21st with DCIS.  This is my first round with breast cancer. Was diagnosed with ovarian cancer 11/2004 and am still here today!

 I will be having surgery on 12/2.  I have elected to have BMX with no reconstruction for several reasons. First, I hit the trifecta, prior cancer diagnosis, family history and BRCA1 gene. Second, for me, is that risk of it coming back is 0%, there will be no chemo and no radiation. I chose no reconstruction, for similar reasons, less invasive surgery ( won't involve the chest muscles), no additional surgeries to replace implants, no additional time under anesthesia with DIEP/TRAM, reduced risk of complications.

I know this not a choice everyone can make, as many posters have said, and it is true, the final decision is yours and is very personal. I just wanted to share mine with you.

Hi violet



So sorry you find yourself here, but hopefully you will find all the info and support here you need. Its a scary time to be making decisions, but my surgeons were great at presenting all the options and the pros and cons. I asked my cancer surgeon outright what he would do in my position and he was really honest with me. I opted for a mx because i didnt want to live with the 'what ifs'. Im a little over a year out now and heading for the final stage of reconstruction, and can say that im totally happy with my foob because it means the bad stuff is gone. You'll know in your heart which is the right way to go. And i promise it gets easier.



Keep us posted, sending love and hugs xxx

Dear prncsviolet - My wife was diagnosed in early September which is when I first joined the bulletin board.  I would like to share our experience so far.  I have been the one using the bulletin board and doing the research.  First of all, my wife had DCIS on the right side but the left side appeared normal so I advised my wife to get an MRI.  The MRI on the left showed abnormalities which also turned out to be DCIS.  With only one breast with DCIS it was a mastectomy versus lumpectomy decision.  With both breasts having DCIS my wife did not hesitate too much with the decision to have a double mastectomy.  In addition the right side had suspected microinvasion and comedo type with necrosis.  The next step was the reconstruction options.  My wife did not like any of them.  But we got lucky.  Our internist's wife had breast cancer, BMX and immediate reconstruction with "gummy implants".  The "gummy" implants are widely used in Canada and Europe but are considered experimental in the US.  You will need to do research on reconstruction options - standard implants and flap options where they take muscle from another area to make a breast.  The standard implants have a concept called "Tissue Expander" which other women in a support group told my wife could be painful and annoying and the whole process takes many months.  So my wife decided on the gummy implants with immediate reconstruction.  The main difficulty is finding a surgeon in your area who is trained in the gummy implant.  Again we were lucky - we found one 10-15 minutes from our house who had 25 years of experience and had done over 1000 breast reconstructions.  The BMX with immediate reconstruction was on October 14th and took 6 hours.  My wife stayed in the hospital for 2 days.  She had pain for 2 weeks and took Percocet.  She had surgical drains in for 10 days.  I had to empty and measure the surgical drains once a day - blood and other liquids - and write down the amounts.  By the end of the 2nd week my wife was active, back to driving a car, minimal pain, doing mostly everything she had done before the BMX.  She still can't lift anything and has trouble with certain arm movements.  For example she tried to open the trunk of our car and could not do it so I did it for her.  On Ocfober 27th we received the final pathology report and were blindsided. We had been told that with a double mastectomy, it would be 90 percent that no further treatment would be necessary.  My wife's right breast had invasive ductal carcinoma and 3 foci of invasion - 1 mm, 1mm and 3.5 mm.   A good sign was that both sentinel node biopsies were negative (you will need to do research on sentinel node biopsies as part of the surgery). More importantly, my wife was HER2 positive which is an aggressive cancer which has the potential to spread through the blood stream and metastize to other organs.  My wife's cancer was estrogen receptor positive and progesterone negative.  So in this situation, my wife will have to have chemotherapy and other treatments known as targeted therapy (Herceptin) and hormone therapy (Arimidex).  After being helped tremendously by all the women on the DCIS section of the bulletin board, I have moved to the chemotherapy, invasive ductal carcinoma and HER2+ sections of the bulletin board.  I sincerely hope you are OK and wish you a full and complete recovery.  I appreciate your situation because my wife was just in this situation less than two months ago.  You have 3-4 challenges and the women on this section can help you a lot just like they helped and supported me.  Challenge #1 is the lumpectomy versus mastectomy decision.  My wife at first did not like the prospect of the possibility of multiple surgeries.  Challenge #2 will be finding out if you have DCIS in both breasts or if you have DCIS in one breast with the potential for having it in the other breast.  If the MRI should show DCIS in both breasts that may make your decision easier.  If only in one breast that will be a bit of a quandry and the other women on this section can share their experience with lumpectomy which requires radiation for 6-7 weeks or a double mastectomy like my wife had.  Challenge #3 is researching reconstruction options - there are standard saline and silicon implant options and there are various flap options.  There are other sections of the bulletin board on breast reconstruction.  Challenge #4 will be post surgery recovery and dealing with pain, surgical drains and other matters.  And finally Challenge #5, dealing with the ten percent possibility that a double mastectomy is not enough and that chemotherapy, other treatments and/or radiation is necessary.  I hope this detailed post is helpful.  I wish you a complete recovery and I will pray that if you go the double mastectomy route, that will be the end of it for you.

Dear prncsviolet - My wife will get a second opinion on the specific treatment recommendations and then go back to the first oncologist.  She will start chemo + herceptin on 11/29.  She will have all sorts of tests next week in advance of treatment.  One piece of advice, always respond back to everybody's posts to you.  It will bump your thread up to the beginning and get you more attention and posted replies.  Please feel free to post directly to me here or send me a private message if you have more questions about my wife's journey.  Again I hope everything goes well for you.  Are you married?  Is your husband giving you the support that you need?  Best of luck.

Dear prncsviolet - My wife and I have two small children - boy 8 and girl 6.  We have shielded them from the details of the double mastectomy.  All they know now is that they should not touch mommy.  But now we will need to explain cancer and chemotherapy to them.  It will not be possible to hide anything going forward as my wife will be weak from the treatments and her hair will fall out.  My wife has an extended family and we have several doctors as neighbors and my side of the family is helpful.  But it really falls to my wife and me to do our homework and learn as much as possible so we can be educated and informed in dealing with the doctors.  My wife is older than you - 52 - and I am 56.  Once you are further along you in turn will be able to provide support to others as you will become a veteran as my wife and I are now.

Dear prncsviolet - I forgot to write greetings from Beijing China.  I am here on a business trip.  I will monitor your thread and reply as needed and also update you on my wife.  Please let me know if I can be of help or answer more questions.  I have become quite knowledgeable quickly from reading voraciously.  I am sure everything will be fine.  How old are your children?

BlairK -

After mammograms and an MRI, they thought your wife had DCIS and nothing was said about it possibly being invasive? This is what scares me. I had DCIS 2 years ago, had a lumpectomy and radiation, and now calcifications showed up on my mammogram, but this time it's the other breast. I am having my biopsy in January, and wonder if I should request an MRI. What did your wife's mammogram look like? Two years ago, mine was a tight cluster of calcifications, and this time it's a loose grouping. Thanks!

I was 42 when I was diagnosed with DCIS.  I was told I was stage 0 but after 2 lumpectomies on the left side without clean margins I ended up with a bilateral mastectomy and stage 1 cancer.  I decided that for me personally if they were going to take one breast then they might as well take the other.  I did not want to have to worry about going through this all again later.  I did have an MRI which one radiologist felt showed a slight problem with the right breast.  Even though I was told by several other radiologists it was nothing I just did not want to take the chance.  I also had the genetic testing which thankfully was negative.  My DCIS did have microinvasions but after consulting with my oncologist, Duke University and John Hopkins, it was decided that I did not need chemo or Herceptin.  All the doctors felt I was aggressive enough having the bilateral.  The microinvasions were not even a mm combined.  Thankfully it was caught very early.  I do remember everything being so surreal when I was first diagnosed.  It was such a shock to me.  No one in my family every had breast cancer and I watched my diet and exercised.  I was diagnosed December 29, 2010 and I have had 4 surgeries.  Now here I am with new implants and I actually feel really good.  I do have silicone implants on both sides and am actually happy with them.  I did have a SNB done on both sides... one at the first lumpectomy and one during the mastectomy.  I have not had any problems but am careful that my blood pressure is taken only in my leg and you cannot have an IV in your arm or hand if they take nodes from both sides.  The hospital put it in my neck for the implant surgery.  It really wasnt bad.  I did hate the tissue expanders but you do learn to live with them.  I couldn't even touch them at first.  It wasn't me and just felt so hard and my skin was stretched so tight I just couldn't deal with it.  But eventually I started putting a lot of shower gel on them and then lotion as soon as I got out of the tub.  What a difference.  My skin actually became softer and more pliable.  I have learned to live with my new breasts and overall I am just thankful that my cancer was caught early.  I have a 15 year old daughter and I knew I had to show her my strength so that she would be able to learn from it.  I wish you well on your journey.  Just know that you can get through this.  I had a hard time after my mastectomy surgery but now I am doing great.  I have a bracelet that says "Life is tough, but I am tougher."  Just keep that in mind as you go through this process. 

Understand what you are going through!  This is a very tough time.  Diagnosis is tricky and quite subject to change.  For now try not to think ahead too far.  The information will come to you and as that happens things will get clearer and easier.

My mom died of bc, age 59, and her two Aunt's above her also had it.  They tested me for BRCA and it was negative.  It is great you are doing this test, especially for benefit of your daughter. 

MRI is good but do not panic if they say they see some spots that light up.  You are quite young and MRI shows a lot of stuff, even if it is not cancer.  I had 5 areas light and none were cancer. ( I had cystic breasts that always hurt before my period.)

Also, get your path report and find out what sort (grade/type/hormonal profile) of DCIS you have.  Some are known to be more aggressive than others and this will help you make choices.  Your oncologist can explain the finding to  you.

Keep taking deep breaths and keep going. You are ok and you are ahead of this thing.  It will be ok.