6 years out

lovestorun

Six years ago this week I got a call from the radiologist with a diagnosis of DCIS. These boards were invaluable to me as I learned more about what DCIS was and wasn't, and then navigated treatments and recovery. I wanted to take the time to write in to say: it gets better. It really does. I am not someone who went through the experience and felt this positive life changing transformation. More power to those who did and do. 6 years out, here's are my takeaways to they extent they may help one of you reading this or resonate in some small way.

-The diagnosis was scary and confusing. Is it good bad news? Is it bad good news? Is it cancer? Is it not cancer? While I was very grateful not to have to endure end-of-life discussions, or even think about chemo, I felt betwixt and between. I knew I had it good compared to others, and I knew I had choices and not all do. But that also made it hard in other ways, and I felt I needed to keep a chin up attitude at all times, even when I was tired or sad or frustrated or scared. It was weirdly hard to have choices, if that makes any sense.

-My chosen path was lumpectomy + re-excision (my wire placement did not go well) + radiation + 5 yrs' Tamoxifen. One and done radiation/lumpectomy was still relatively new, and even then I would likely not have qualified due to age (I was 45 at diagnosis). I had a kick ass team, soup to nuts. Awesome surgeon, down to earth radiation oncologist, fantastic radiation team, and kind and humane oncologist for the tamoxifen.

-Exercise was my savior. I loved distance running and ran as long as I was able. I aquajogged until my skin couldn't tolerate the pool. And then I walked when I could. That may not be for everyone, but for me, it helped.

-Be frank with your medical professionals. It's okay to ask them the same question more than once if you don't remember the answer. It's okay to push back a little if you get an answer you don't like. Sometimes you will get the same answer. Sometimes they might hear you on something and work with you a little.

-I found it very hard to be in the space after surgery and before radiation. Something about healing in order to then be zapped just was hard. No great advice, just acknowledging that being there was challenging.

-Radiation is not awful. It found it insidious in terms of getting tired. For me, I was run down and low energy, but not flat out exhausted and oddly enough it took me a while to make the connection.

-Tamoxifen terrified me. I was fortunate and side effects were minimal. Stayed on it for five years. They became my floaty-wings at the cancer swimming pool : )

-Laugh. Seriously. It's okay to make jokes. Really.

-Friends and even s.o.'s will go wonky. Some people just don't know what to do or say and will kind of disappear on you. It happens. It's hard, but it happens.

-Others will say the darndest things in the name of being well intentioned.

-Gifts will come to you from strangers and people you know in unexpected ways. Thank them. Try to pay it forward later. I'm sure I haven't succeeded 100% but I'd like to think I tried.

-Random stuff: if you can, in the beginning, bring a trusted friend/partner with you to appointments to take notes. It's really hard to hear the doctors when your brain is spinning like the tilt-o-whirl at an amusement park. Personally, Rad-X really helped me with radiation skin. I wore a lot of loose, inexpensive camis with big shirts / sweaters over top. I also returned to work as soon as I was able post surgery, and worked through radiation (that was important to me mentally / emotionally). And whatever you do, don't consult dr. google at 2 in the morning. Nothing good comes from that.

-Finally, sites like this! This community can be very helpful. Do bear in mind that many people move off of the site and stop posting once they start to feel better and heal. We are out there - in your offices and grocery stores and churches and synagogues. At your local 5Ks and charity walks and HIIT gyms and parks. Some of us actively identify with the experience. Others of us don't. But we are there!

Be well and blessings to you.

(p.s. I *still* don't know what box to check when a form asks if I've had cancer)

Kkubsky

I just had my 3 yr post dx mammo/us and all good. I don't know why but this year was harder than last as far as "scanxiety" goes. But feeling much relieved now. It is always nice to see some "oldtimers" post that things are going well. In the beginning it is hard to get through even a minute sometimes.

I know more about breast cancer than I ever wanted to know but am grateful that I did have DCIS and did not have to think about chemo etc. And even now new discoveries are being made regarding DCIS.

For me lumpectomy was not bad at all. Even radiation was not terrible. Not that I ever want to do it again!! I did have skin issues towards the end and for a short time after but it all eventually cleared up. I had and sometimes still have odd pains in my left breast and my muscles feel tight sometimes but no biggie.

Yes stay away from Dr Google. I have given myself more panic attacks that way. Of course it is easier said than done and I am still guilty of seeking out Dr Google every now and then. This site has been amazing and very helpful.

I struggled with what box to check too....Now I just check "yes" and write DCIS next to it. That was a very hard thing to do in the beginning for me.

I have certainly come a long way from the initial bombshell diagnosis. Still have a ways to go. I developed major anxiety attacks and felt so totally out of control at first. Three years later the anxiety is finally getting under some kind of control as I slowly am learning to trust my body again. I felt like it betrayed me. I remember feeling contaminated in the beginning. I still can get my gears going with the "what did I do or what didn't I do to make this happen?" And I tend to get a bit too into my own head thinking about recurrence. But I guess I can't control everything...my genes are what they are....my past habits are what they were... I can only control the now...so trying to exercise and eat healthy. And see my drs when I am supposed to.

One day at a time.....

april485

Me - 6 years out also. Still struggling with the "had cancer vs. pre-cancer" question as well. My understanding is that it "IS" indeed cancer that has not morphed enough to break out of the duct yet so "very early" stage of cancer is what I am going with and damn lucky to have had that diagnosis in comparison to others who were not as lucky.

It still cost me most of my left breast (I am a small breasted person) through two surgeries (margins) and I endured radiation as well as the struggle I had to stay on the AI. I tried two of them. I ended up staying on the second one for the rest of my five years. I still feel as though my joints/bones/life changed with that little pill.

I am thrilled it has not returned but I know I must be ever-vigilant. As Kkubsky so ably put it....One day at a time...

Kelbug

Thank you

GreenHarbor

I was diagnosed last summer with IDC. Thanks for sharing your experiences- it’s been so beneficial for me to hear from people who are several years out and are doing well!

striveforhealth

Lovestorun,

Thanks so much for checking back in here at your 6 year post diagnosis and treatment for DCIS. I appreciated reading your thoughts and it made me feel like I'm going to get through this too. I've only been on this site for over a week and I have found so much information, and of course this great forum. Thank goodness for folks like you who like to share. It helps to not feel alone with a situation that you never thought you'd ever deal with. When I was heading to my consult with the breast surgeon last week I felt like not only didn't I prepare for some kind of a test, but I must have not gone to the classes either! lol Fish out of water a week ago and tonight I've learned so much by just coming to this site. I feel so much more prepared for the consults with the other docs now. Blessings and continued good health for you and the rest of us ladies.