Newbie, scared and catastrophizing!

doc40s

Hello,

I was diagnosed yesterday with Grade 3 DCIS after a stereotactic biopsy. I am 43 years old, have three young children, and just started a tenure track position at a state university after completing my doctorate. It has been a highly stressful few years and now this. Thoughts keep bouncing around in my head from "it could be worse" to "what if it's invasive" to "I'm so ticked." I guess all of these thoughts are normal, but bottom line I'm just scared, scared, scared. I am receiving amazing care and have been closely monitored for years because I am in a high-risk category - my mother had stage 2 invasive 15 years ago and is a survivor and every female on my father's side has had BC, with two aunts who are still living both being diagnosed with DCIS also. Other relatives didn't seek medical treatment until symptoms were present. On the one hand, I am grateful the calcifications have been so closely monitored, but then I keep questioning why it is grade 3 andthe calcifications cover a large region in one breast? I am reeling all the while trying to hold it together and reassure others that I will be fine, but inside I don't feel so confident and I'm just terrified. I found this board and it seems like such a supportive group!

nehson123

Hi, I had the same diagnosis on 11/11/11. I am faculty at a nursng school,went for mamo's religiously every year.Mom and grandmom had breast cancer at age 72 and 74,didn't expect it. My grade was also grade3. So, because of the grade I had a bilat. mastectomy 12/6.I did not want to deal with this ever again. I am going back to work next week. It has been quite a journey, Anything I can help you with ask. I was also terrified and I have gotten through it. Take care

dsj

I didn't have your risk factors but I was really scared when I got my diagnosis. I am also an academic, and the first thing I did was started to research my condition. It actually gave me some sense of control.

Lifeafter

Hi doc40, sorry to get to know you this way. But glad that me and others are here to help you. I was diagnosed the same in May of last year. My sig line will tell you everything I've gone through to date. I am 40. They found it on my very first mammogram, which I would never have went to had my gyno not made the appointment for me. Even then it was pure luck that they found what they did. They told me it was like finding a needle in the haystack on the first try.  Wow.  Please ask me anything.  Private message me if you wish. You will have a lot of preparations ahead of you. I have two teenage daughters. My oldest will be 20 in March, she's a sophomore in college and my youngest is 17, she is graduating this year and off to college in fall. If I had to get cancer, it came at the 'right' time. Everything started rolling right at the start of summer vacation. I had plenty of help from them, family and friends.

We're here for you.

Michelle

stac

Doc40s,

Yep it is a roller-coaster ride for sure.  It is normal to feel scared, but how cool you are reaching out for support and it sounds from your post that you are a researcher too and information will help you as you proceed with this.

As for my story, I had specs (calcification spots) in a 1 cm. area identified by a mammogram, needle biopsy confirmed DCIS grade 3 on 11/14/11 in the left breast, the PEM Scan identified a 1.6 cm area of possible problem area, with the lumpectomy (which was an easy choice for me - I like my breasts and wanted to keep them, but I have no family history of breast cancer) the BS removed 4.5 cm without clear margins.  So imagine a very, very large chicken egg taken out of an A/B cup breast, the volume was reduced appearance-wise maybe by 1/6, not noticible at a glance, but easily seen if you are looking.  (Side note: Due to swelling after the lumpectomy I was able to tell no difference btwn the two breasts, but 1 wk and 2 days later I could tell the difference; and I understand after radiation that can become even more apparent)  But if I had clear margins, I would have been delighted with that.  I think about 2/3's of the time (w/ my initial stats I was told) they don't have to go back in for more.  However, I did not have clear margins and had to decide the next step...that was the really tough part.  In fact, I went through the decision tree over and over again.  I elected a NS BMX with tissue flap reconstruction, b/c I did not want to go back in and replace implants potentially every 10-15 years.  I'm 32 days out from the surgery I had and am doing pretty well.  So far it is not nearly as bad as I thought it would be, and having support has helped me tremendously.

Each woman makes different decisions based on their personal history, family history, diagnosis, prognosis, research stats, Drs. recommendations, and her own sense of what is best.  I wish you well as you navigate this.  Courage is about facing our fears and moving ahead anyway and I believe you are doing this despite your fears based on your post and the fact that you are reaching out. Please keep us posted and feel free to PM me as well if you desire to at any time.  May you have increasing clarity and increasing peace as you proceed.  But yes it is one wild ride, and we are with you! 

Dixiemine30

Doc --

I completely get it.  I was diagnosised on 1/3/12....DCIS, grade 3..... and it rocked my world.  No family history for any kind of cancer.  I was floored and terrified.  I'm 42 years old, 2 boys (ages 25/20) and a precious grandson (7 months).  I've elected to have a double mastectomy with immediate reconstruction.....surgery is next Thursday.  It's an emotional roller coaster ride and I try real hard to just take it a day at a time.  I found this forum last week and it has helped me so much!!  It's assuring to read about others who have been (or are) exactly where you are.  Wishes for peace, comfort and clarity for you as you begin to make decisions.  Like all those above, feel free to PM me if you want.  I'm on this site MANY times a day :-)

crystalphm

It sure is terrifying!! I had DCIS also, and opted for a mastectomy...I am not sure how I even got through it all other than my medical doctor helped me by prescribing xanax so I could stop crying long enough to make the very important choices I needed to make.

It is scary, allow yourself that. Allow friends and family to help you, their role now is to listen to you and support you.

This group is the greatest, you are going to find alot of medical and practical knowledge on DCIS here.

I had my first breast removed 18 months ago, then this past autumn I had a MRI follow-up and 3 "places" showed up. I totally freaked out once again, and decided no matter what, to have my other breast removed...there was no cancer, but I am content to have this constant fear away from my mind. So I had one medically necessary mastectomy and one elected, no reconstruction.

jriendeaujr

Congratulations on more than a few things.  First, finishing your doctorate, getting on the track for tenure and finally and most importantly, congratulations on finding your rogue cells so early.  It sounds like you have really been on top of things since you knew you had a strong family history of breast cancer. 

 One of the most important things and something I cannot stress strongly enough is DO NOT LET ANYONE TELL YOU DCIS IS NOT CANCER.  Last I checked they didn't just throw radiation at things willy nilly.  What you have is a diagnosis that is wonderfully simple, wonderfully easy to eliminate as a worry but don't let any of these idiots trying to squeeze everyone into a bell curve tell you that you should watch and wait if you don't want to.  

 DCIS means the cells that have gone awry have not broken through the normal cells around them.  By their very nature it is possible they could and spread.  Most if not all of the time when an area is biopsied the surgeon tries to get ALL of the area in question because it is harder to go back after the fact.  When you get the diagnosis of DCIS there is not anything left in your breast to spread.  If they saw that there was some inadvertently left behind "their margins weren't clear" they would take a little more tissue to be certain.  So the very act of "diagnosing" DCIS causes it for all intents and purposes to be eliminated.  I refuse to accept the idea that it would be okay to leave DCIS in a breast because "many of them will go away on their own or never become invasive".  If you ever doubt that ask your surgeon if they would ever leave DCIS in their mother's breast.  

Discuss your options with your surgeon and oncologist and make an informed decision but know that you are going to be okay.

crystalphm

I wanted to add I also have no family connections with breast cancer, and I live a very "clean" life so I have very low risk factors for breast cancer, but I got it anyway.

How are you doing?

azul115817

Hi Doc40s,

What you are feeling is so common, but that doesn't make it any less terrifying!  As others have mentioned, the time between diagnosis and treatment is the absolute worst.  Once a treatment plan is established, and you begin taking steps to deal with the cancer, mentally things start to calm down a bit.  And it just gets better from there.

I was diagnosed just over a year ago with DCIS.  Like you, I was in my mid-40s, a college instructor (a job I love) with 2 small children.  When I heard "cancer," my mind went wild and almost immediately to all the dark places imaginable.  Intellectually, I knew what the stats were and what I was dealing with, but I couldn't stay away from falling into the worst case scenario.  Thankfully, one of my best friends is a breast surgeon, and she called me daily to talk me off the ledge, so to speak.  Reading and posting on these boards also helped a lot.

You mentioned a strong family history.  Have you decided whether to have genetic testing done?  The results of that test may help guide you in deciding whether to pursue a lumpectomy vs. mastectomy.  My tests came back negative, but in the end, I ended up having a bmx.

Best of luck!  And it will get better!

nehson123

Best wishes for you for your surgery next week. One rec,make sure all of your medications don't have child proff caps. They are impossible to open after the surgery.I couldn't open my pain meds,vitamins or anything ,had to call my neighbor. This is a little thing but it will help you in your recovery.Anytime you want to talk message me.