Just Diagnosed DCIS, Scared, Sleepless & Confused!

Renee,

I am 41 so I completely understand your fear for you and your girls (my children are 12,11 & 8) unfortunately, my bilateral BC was not DCIS - although that was in there too, it was already invasive. The whole deal is very scary but it does get better with time and a plan. You can do this! Stay strong as hard as it is. You will feel differently and things will become clearer. There are many different trains of thought on this {DCIS} now, including watch and wait (not at all suggesting you do that....just pointing out things are now changing).  http://www.nytimes.com/2015/09/29/health/a-breast-cancer-surgeon-who-keeps-challenging-the-status-quo.html?_r=0  in certain parts of the world it is viewed differently, too. So take a deep breath and know you really can do this. I am just over 4 mths out of my DX and already life is getting back to normal - I had a BMX and don't regret, I doubt I ever will but that is not the right road for everyone. Find a good surgeon, weigh your options and go forward: strong and empowered.

Many ladies on here ask their Dr.s for something to help with the initial shock, perhaps that is something that you may consider? Or perhaps meditation if you are med-adversed (I am:)  Losing sleep is no good for healing or sanity. Be kind to yourself.

A fellow member here at BC.org has a Layperson's guide to DCIS you can find it here, it is really good information https://community.breastcancer.org/forum/68/topics/790992?page=7#post_4202139

Wishing you lots of love and luck. Hugs.Laura x

been where you are, it does get easier once you get everything lined up. I too wanted a double mastectomy at the beginning but I realized right then was not the time make that decision. There is no increase in survivability by doing a bmx, just do you know. You may feel better about doing it and that is fine, but there is no evidence it will help you live longer mostly because DCIS is highly survivable itself regardless of treatment.

Hang in there and if the anxiety gets too bad ask for some Xanax or something. It will help you sleep better

Honey, I feel your pain! Please start by taking a deep breath! Be careful, pray, conduct research, and wait till you feel comfortable with your decision. You sound exactly like I did when I got the same diagnosis as you. I was given two options, biopsy with radiation, or mastectomy. I, like you, first leaned toward a unilateral MX, to be RID of cancer. However, after having my two mammograms, an ultrasound (both revealing a Category 5 malignancy), a needle biopsy (totally clean!), and an excisional biopsy (DCIS, Stage 0), my surgeon wanted to do yet another biopsy to get clean margins. After all the divergent results, I was confused and needed time to think.

I had, by that time, spent much time researching DCIS on the Internet, and discovered a lot of recent literature about doctors over-treating DCIS. I opted to slow down and have a 2nd opinion. I heard from the 2nd opinion ONE WEEK before my MX and reconst. was scheduled. I found out that I do NOT have cancer. I have a complex sclerosing breast lesion instead, which is a benign condition, caused by hardening of breast tissue. It occurs over time. I came SO close to having unnecessary major surgery! This doesn't happen often, but it did happen to me, and is worth taking time to check out.

God bless!!

I can understand the reason they want to wait to do a reduction on the side you will be having radiation. There is a certain amount of swelling and if your intent is to have both sides matching....you will need to give a bit of time

to be honest, I never considered a mastectomy for my DCIS and when I asked my BS who is a really good one in NJ, she said she did not know why folks rush to a mastectomy for DCIS

stay cool, lumpectomies are minor surgery (to me at least as I was home in hours) but a mastectomy is a much bigger surgery with longer healing

oh yeah, my diagnosis was same as you and I am clean 7 years out

JerseyRenee, let me know how things go with your doctors on Wednesday and I will do the same. It's good to have other women to talk to who are going through the same thing. I've been trying to be super cheerful for my family, and I am an optimist by nature, but I confess, I had a good cry in the shower the other day, and felt much better for it. Sending love your way, Patty

I had lumpectomy for DCIS a week ago tomorrow. After dx by stereotactic bx, I also had MRI, followed by 2 MRI guided bx for 2 other suspicious areas (which turned out not to be cancers). My surgeon gave me detailed information about recurrence rate with lumpectomy, radiation and hormonal treatment. S lumpectomy, with both treatment options having 5-8% recurrence rate.  I opted for lumpectomy and pray for total healing with additional treatment.   

Jersey, I don't blame you for having genetic testing. I don't meet criteria for testing due to fact that my cancer was diagnosed when I was post-menopausal.  It's better to know if you are BRCA positive before making final decisions about your treatment. Keep us posted on your plan of action and like others have said, "Breathe."   There is great support here.