DCIS in a fibroadenoma at 25

rebeccasmith

Hi there,

A few weeks ago, I had biopsy and came back as atypical duct all hyperlasia on a fibroadonoma. Post surgery, it was biopsied and came back as DCIS. They did a breast MRI, another biopsy and everything else came back negative. They also did genetic testing and it came back back as BRIP1--variant of unknown significance. Now, we are trying to figure out the next steps since it was a minimal amount, however extremely rare to have this at 25 years old and in a fibroadenoma. Has anyone had something similar? They are discussing more surgery, radiation and tamoxfin...I don not want to take this one at all. I appreciate any help!

Blessings to all of you!

Annette47

I don’t have any specific information relevant to your case, having been 20 years older than you when diagnosed. I did want to say that I am sorry you have to be here - 25 is very young to be dealing with this!

As for what to do, only you can know your comfort level with the various options. I would suggest that you get a second opinion, just to have other perspectives on your options. The main thing you need to be thinking about are what are the risks associated with each procedure (both of side effects and of more cancer) and what can I live with? So gather as much information as you possibly can, and then go with your gut.

Also be sure to ask what the surveillance plan is going forward, as it’s not this cancer that will be the problem for you - a small amount of pure DCIS is easily dealt with. The problem is that your breasts have demonstrated that they are prodigies at growing cancer, so the question is will it happen again and what will best prevent that while maintaining a quality of life for you. There is no one right answer to that, as much depends on your individual preferences, which is why I recommend educating yourself thoroughly before making any decision.

delbo

Hi Rebecca,

I'm so sorry to hear about your diagnosis. I can truly say that I empathize, because I was in a very similar situation to you a year and a half ago-- DCIS in a fibroadenoma found unexpectedly during a biopsy at age 27. I also have a genetic variant of unknown significance and a strong family history. I absolutely agree with Annette that the most important thing to do is to educate yourself as to what your choices are, and this advice is even more essential when you're in your 20s with DCIS. Balancing finding the best way to treat your cancer while also having a perspective on living with the decision you've made for the rest of your (hopefully and very likely healthy!) life is not easy, so my very best advice is have your own convictions about the route you take, whichever it may be.

I'm assuming that your two options, like many of us with DCIS, are to either have the lumpectomy with radiation and Tamoxifen for 5-10 years or to have a mastectomy (unilateral or bilateral). Both have equal survival rates, so most surgeons will tell you, especially at such a young age, that each is a reasonable choice. I hope that someone else will be able to answer and tell you about the choice to have a lumpectomy, but I can give you the background on my choice for a bilateral mastectomy with implant reconstruction, and how I'm living with that choice a year and half out from diagnosis (spoiler alert: out of the choices I had, I think I made the best one), if you'd like to send me a private message.

In the moment of my diagnosis, the most important thing in my mind was to deal with the cancer as aggressively as I could, at whatever cost. Looking back now, I see the equal importance of making a choice that you feel comfortable living with after the cancer is gone, especially because DCIS has such a great prognostic outlook. I was lucky to have family members who had that rear-view perspective when I was making my choice, and that was a big part of my decision to have the bilateral mastectomy. Everyone is comfortable living with different things, so if you educate yourself and be honest with yourself with regard to the choices you're now faced with, you're doing the best you can with a crappy situation.

One last thing, if you haven't heard of Young Survival Coalition, you might want to check them out. They deal exclusively with women diagnosed with breast cancer under the age of 40, have lots of local meet ups, and have free materials and workbooks to help you map out all of the information and choices that you will have to deal with.

Again, please don't hesitate to reach out if you want any more of my perspective! DCIS in your 20s can be a lonely and disorienting experience, but there's a community of kind women out there who are happy to give you as much support as you need.

rebeccasmith

Annette and Delbo, thank you so much for your advice and words of wisdom! All of this really made me think. It's funny how words can be so profound during this times. Especially what you both had to say about listening to your gut. I was quoting you both today when I was talking to my family! haha! Again, thank you!

Blessings,

Rebecca