33 and just diagnosed with DCIS

Hello, Hunter.

I'm am sorry about your news, but glad that you found us.  I am a bit ahead of you as I was diagnosed at 39.  I am not a mom, but there are many here that can help you.

The beginning of this process is very difficult.  Very difficult.  When I was first diagnosed, I wanted everything done now.  NOW!  Most of us probably feel that way.  I'm not sure what is an average wait for an MRI; it is likely different for everyone.  In my case, I waited for surgical biopsy results for about four weeks and then another week or so for an MRI.  It seemed like forever.  This might be tough to believe right now, but having this extra time gives us a chance to learn more about our diagnosis so that we can make good decisions about our treatment.

Here's a few tips.  Try to bring someone along to your appointments for support.  If that is not possible, try to write down what the doctors tell you about your treatment options.  Most of the time, I walked out of appointments in a fog.  It helps to have that written information to look at later.  Also, ask for copies of your reports (mammos, MRI, etc.).

Most importantly, vent, cry, or scream if you need to.  It is not easy, but it is doable.  This does get better.  Really, it does.  Warmest wishes for you and your family.

Hi hunter15,

I am so sorry to hear of your situation. It is a familiar one for me as I was in your shoes just this past Feb. Had bloody discharge on one side but found cancer by chance on the other side.  If I can help you in any way I would be happy to. You are very wise to reach out for help & to try to connect with other women. I am a newbie to this site, but from what I have learned, this is a great place to get info & connect with others in the same situation or others with the same questions. It can be so scary & being in a fog is exactly what I would describe my experience as. This will be a process of discovery & learning and there are lots of us willing to help. Just know that you are going to be o.k. & you will watch your beautiful children grow up and have grandbabies.

I was 39 this past Feb when I was diagnosed with DCIS. Just take a deep breath. We've all been there when it comes out of nowhere & makes your whole world slow down. wyldblumusic is right that it takes time to comprehend everything and that as you are waiting for tests results, it is a good time to learn about your specific diagnosis. Your doctor or cancer center would be a great place to start. Ask them for their brochures, information about DCIS & also contacts of people you can talk to. The internet can give some good info but be careful, there is a lot of inaccurate info too.  That is why I would suggest asking your Dr. or Dr.s office where he/she would suggest you find good info & resources. Your local cancer center or breast center may be where I would go first. I wish you were down the street & I could dump all the literature I've collected off at your door to help you.  

DCIS is ductal carcinoma in situ which means it is cancer in the ducts of the breast that is contained within the ducts and have not spread outside. As is stated in this pamphlet, "The single most important fact about any breast cancer is whether it has grown beyond the milk ducts or lobules of the breast where it started." This is actually really good news & the best of cancer diagnosis. Yours has not grown beyond the ducts. BIG BREATH. The cancer is contained & has not spread. They have not spread or they would have classified it differently as IDC (invasive ductal carcinoma). 

I am going to quote some info from CancerCare that my Dr. gave me about the hormones. "Receptors are structures present on the surface of some cancer cells that act as doorways, allowing certain substances, such as the hormones estrogen & progesterone, to enter the cells & encourage them to grow. Tumors that test positive for these structures are called hormone receptor positive and might be successfully be treated with hormonal therapy"  Being estrogen or progesterone positive is a good thing because it means it will be sensitive to medication and they will be block the hormones from encouraging the cancer to grow. Whew!

About Her2:  "it is a gene that helps control how cells grow, divide & repair themselves. About 1 out of 4 breast cancers has too many copies of the HER2 gene. The Her2 gene directs the production of special proteins, called Her2 receptors,in cancer cells. If there are too many copies, the cancer tends to grow fast. There is also an increase chance of spread. But, they do respond very well to treatment that works against HER2. This treatment is called anti-HER2 antibody therapy." 

Let me ask you to make sure I understand, You have already had a biopsy done, some tissue removed & tested? Did they say if they got positive or negative or clear margins around the excised tissue? Because it is DCIS it is probably in a microscopic stage that has not fully progressed to an actual tumor. This is good. The other things you should find out are: 1. How different are the cancer cells from normal cells. This is the grade of the cancer. 2. How big is the cancer?  3. Has all of it been removed? This is where having clean margins around the biopsy is important. 4. Are there cancer in the lymph or blood vessels? Usually they test the lymph nodes in surgery 5.How fast are the cells growing? 

Great suggestion to copy all of your tests & reports. You may ask the Image Center where you had your mammo, ultrasound or MRI to copy the tests onto a CD for you.  I was then able to take them to a Cancer center who were able to re-read them before suggesting treatment.

Do you have any family support or great friends or a church community? This would be a great time to let them uplift you to make things easier for you.  I have two young children too & you will need help. There are lots of ways to find it so if you find yourself alone, don't worry. Even some hospitals have special programs to help during times like these.

I would also suggest getting a storage binder where you can file away reports, receipts etc. & keep all the info you will be collecting to keep it all in one place.  It reduces a lot of stress when you don't have to run around looking for the report that "was somewhere".

Most importantly, get a journal for yourself. I would encourage you to write in the good things that happen to you along the way.  Someone sent me a card. Met a new friend today. They are easy to overlook if we focus on how devastating we feel, but it really can be a source of strength. 

I really hope I have helped a little. Any questions you have, don't hesitate to Private Message me and I will try my best to help in any way I can. I'll try to walk you through this one step at a time. Take care, have hope and know you are among a strong group of women who have made it on the other side and you will too. 

   Take a deep cleansing breath and try to release some of that tension.  You are in the worst stage of this experience.  The waiting game, waiting for tests, waiting for results, waiting to get a treatment plan.  Knowledge is power and you can take this time to educate yourself so that you can be an active member of your cancer team and make informed decisions. The wait for the optimum time after your period is normal, particularly when you are dealing with DCIS.  Those cells have probably been in there for at least a few years, it really isn't going to hurt anything to wait so that they get the best possible image. It is best to get all of this testing done before your surgery so that hopefully you can complete your treatment and never have to deal with this again.

HER2 status for DCIS is not all that common.  MD Anderson has been studying it and my pathology actually included it, but the majority of doctors do not believe that HER2 status has much bearing on a DCIS diagnosis.  Now if your surgical pathology shows any invasion, and it still tests positive for HER2, that would be a different matter and you would likely be having herceptin for a full year.  Being hormone positive can be a good thing as it gives you tamoxifen as an additional tool in your arsenal.  Your age is a factor.  They may want to talk about removing your ovaries or shutting them down with a drug.  There have been some recent studies that indicate that aggressive treatment of women in your age group is warrented.  For most of us, a lumpectomy provides equal survival rates to a mastectomy.  Komen has some great lists of questions that you can print off and take to your appointments.  If you go to their home page, the upper left corner there is an icon that reads "I have been diagnosed with breast cancer", and it is under their resource section.  I used those lists alot when I was going through treatment.  Try to do some fun things with your family to distract yourself from all of this.  Research is one thing, but obsessing is not going to do you or your family any good.  Humor, funny movies etc., is genuinely good medicine, as it causes your body to release endorphins that can help get you healthy.

Some of the sites I used before I was even diagnosed were Komen, Living Beyond Breast Cancer, and dcis.info.  Dr. Susan Love's Breast Book is considered a bible, but I do part company with her on her view of DCIS as a "pre-cancer".  Every single one of my doctors consider it a true cancer with the potential of modifiying and becoming invasive.  However, her book is a really good source of information on all aspects of breasts and breast cancer.  For most of us, breast cancer is not a death sentence anymore.  I know survivors of more advanced cancers who are now in their 20 something years of survival, and I even have a dear friend who is a 56 year survivor of breast cancer.  Just stay focused on those little ones.  God bless you and your family.

Hunter15 I've been thinking about you and wanted to know how you were. I hope you are doing well and wanted to encourage you that there are a lot of us that have gone through this that are willing to help & offer support. Private message me anytime. Big hugs, Hummingb1rd