Diagnosed with DCIS ten years ago

Gulfwater

I was diagnosed in November '02.  It's now been so long ago I've forgotten many of the details of it all.  Diagnosed after mammogram and a needle biopsy.  (I've had total of two surgical biopsies and three needle biopsies.  One since DCIS diagnosis.  Negative results on that one. )  I'd say my DCIS was kind of middle of the road.  Lumpectomy on Dec. 2, 2002.  Largish tumor.  Surgeon got clean margins on first go.   Rads in January and February of '03.  No problems with it.   Tamoxifen for five years -- Jan. '03 - Jan. '08.  Basically no problems.   Minor leg cramps, etc.  I remember someone on a message board said that you will always remember having DCIS when taking that pill once a day.  NOT.  It got so even that didn't remind me.  Swallowed the pill without thinking about it.  As I said above, had a post-DCIS biopsy in November '05 with negative results.  Have been called back a time or two after annual screening mammogram for additional views.  But that was the end of it.

 Ten years later, I am fine.  A lot to smile about.  

 Mary D. 

Beesie

Wow!  Mary, it's great to hear from you! 

Thank you so much for checking in.  Your message is such a great one for all of the women who are newly diagnosed with DCIS.  It's hard for someone who is newly diagnosed to believe that one day - in the not too distant future - this will all be in the past and the fear and anxiety will be gone.  Your post says that so well.  Thank you!

Infobabe

Gulfwater

You probably keep getting called back often because the are being extra vigilant.

I just had my first post mammogram after my lumpectomy.  It said "there is an area of concern that we believe is benign, not cancer.  Come back in 6 months for another mammogram."

What they meant was, you breast is all messed up from all those lumpectomies, so this is a new base mammogram.  Come back in 6 months to see if there are any changes. 

Congratulations!  We need more stories like yous. 

Mom_To_Three

I can only hope and imagine that my DCIS diagnosis will be a distant thought with no anxiety. I was Dx on Aug. 24 and am angonizing over deciding what to do for treatment after my surgical biopsy had clear margins with DCIS Grade 1.

Mary, aren't you scared silly every time you get a mamo with callbacks? Wow, you are brave! Also, you make Tamox seem a breeze. I'm 40 and afraid of rads' effects later in life, too.

Lots to think about and decide... So glad to hear both of you are HAPPY & HEALTHY!

Beesie

Mom_To_Three,

I can't answer the question about callbacks for Mary but I will answer for myself.  I had a single MX 7 years ago and since then I've had call-backs (for my remaining breast) too.  I've been on the "6 month watch and wait" program.  And no, it actually doesn't scare me at all when it happens.  Honestly. 

I realize that because I've had BC before, the radiologist is extra diligent with me.  So I know that I'm more likely to get call-backs than the average woman who hasn't been diagnosed. Because of that, I know not to worry when it happens.  I also know that if there is any doubt between doing a biopsy now and waiting 6 months to see if anything changes, the radiologist will opt to do the biopsy now.  So when the radiologist suggests a "6 month watch and wait", I understand that the risk that this is something serious is very very small. 

Because I'm so carefully monitored, I am as confident as I can be that if I develop BC again, it will be caught early.  I realize that there are no guarantees, but I am comfortable that my situation is as good as it gets in that regard.  I also have the advantage of knowing what to expect, should I be diagnosed.  I've been through it before - and I made it through with flying colors.  So it's not an unknown anymore, and it's not scary.  I'm also a lot more educated about BC now and much more prepared to deal with a diagnosis, should it happen.

At the time I was diagnosed, when everything was still in front of me and when the fear was greatest, I couldn't imagine going through a diagnosis of BC again.  But time really does change things. Not that it happens quickly.  It took me about 9 months before I didn't think that every headache and every ache and pain was a sign of mets (I did have a microinvasion of IDC in with my DCIS, so unlike those with pure DCIS, I do have a very small risk of mets). But then one day I had a headache and then a few hours later, after it had passed, I realized that I hadn't thought "mets!".  That was a breakthrough day.  As for screenings, it took me a few years to get past the fear, but each year it got better.  At my first 6 month mammo, I started to get nervous weeks before my scheduled mammogram. At my next screening 6 months later, the nerves kicked in maybe a week before hand. The next time, it was just a day or so. Finally one day as I sat there in the hospital gown waiting to be called in, I realized that I wasn't worried at all and I hadn't thought about it in advance even for a minute. These days I worry less than I did before my diagnosis, because I know the process and I know what to expect.

I know that you are struggling with the decision on what to do. Only you can figure out what's right for you.  My only advice is to not make the decision out of fear. Fear is temporary. You've just been diagnosed, you've just had the rug pulled out from under you... of course you are scared.  But don't let the fear drive your decision, because the fear will fade with time, whereas the decision is one that you will live with for a long time.  So weigh the pros and cons of each of the options (lumpectomy, MX and BMX), understand the facts about your risk and the risks and side effects of each of the treatments and think about the impact of each option both over the short term and over the long term.  Then make the decision that's right for your life, not just today but over the long term.  

Claiire

I am going to have my 10 year diagnosis anniversary on October 2nd.  I have my mammo every year and they make me wait and wait for the radiologist to read it before they decide if I need an ultrasound.  I aways get sent on my way and told to come back next year.

This year for some reason I keep putting off my appointment.  Maybe it is the 10 year makr that scares me. 

I've been gone from here a while. I was very involved for a while and then had to get away from the concentration of BC.

Claire

Mom_To_Three

No fear... What a wonderful thing to look forward to.

I love the reminder that they will be extra vigilant for former BC patients. I still am always reminded of my dear friend who not only had cancer come back in her other breast, but when she did the BMX, they found another area that they haden't even detected. She had to go through a lymph node removal and chemo therapy. She admitted that if she had known 12 years ago what she would have to go through this time, she would have had a BMX the 1st time, but she did say it wasn't even an option for her then. So scary... I talk to her again tomorrow and hopefully will get the low down as to exactly what her 1st and 2nd diagnoses were. As you always say, every one has her own situation, Dx, story, etc.

Thanks again, Beesie!

LAstar

Thanks for giving us a glipse of life on the other side!  Smiley faces are quite encouraging!

malleycat

I almost didn't click on this topic for fear that it was going to be bad news.  I'm beyond thrilled for you that it's great news instead!  Thank you so much for sharing it with us!!

xtina

Thanks for posting that Mary D! I am glad that you are doing so well, and I look forward to being in that club with you later on, oh yes I do! 

CTMOM1234

Mary D - Congratulations and thank you for taking the time to share with us that all is well! Big Happy Face!

Looking forward to doing the same in 7 years from now!

Janet456

Great news.

Infobabe will you have mammo's every 6 months or yearly in future?

My first one will be a year after as they said it would look like a car crash at the moment. xx 

Lolalee

Congratulations Mary we need to hear more of those stories. Indeed a lot to smile about. 

Best wishes, Lola

lisagwa

Thanks for sharing your positive situation.

Catherine

Congratulations!  It's been nine years for me and I am also fine.  I did not do radiation nor Tamoxifen, but I am doing great.

mishka

Bessie,

I swear, you took the words right out of my mouth. I was just telling a friend today that in the event that dcis shows up in the other breast I know what to expect. I also said dcis has taught me that I don't have to fear mamms anymore because we are so closely watched we now have an advantage over women who never had Bc. I like the six month checks because more likely to catch it early. It taught me that my fears were brought on by the unknown and my mind calmed by knowledge. Only decision I have left is if I am going to do radiation. You said it well Bessie..,