Pregnant 1 year after BMX for DCIS. Need success stories.

August2015

Hi everyone. Need your help again.

I was diagnosed with DCIS, about 1cm, a mix of Grade 1&2 ER/PR+ Her2- in my right breast in August 2015. I was 39 at the time. Had a lumpectomy/breast reduction in Oct. 2015. Was told clear margins, no micro invasion. I am BRCA2+. So the only reason I had lumpectomy with reduction was to move up my nipples in order to have a nipple sparring mastectomy. In fact I was here asking for help with that decision at the time. In March 2016 I had my BMX and 3mm more DCIS was found in the same location of original DCIS (despite the clean margins), no micro invasion, and good post MX margins. I did not have lymph nodes removed at all (no SNB) because I am high risk for lymphedema (i have primary lymphedema in my right foot and there was no way I was putting myself at risk for lymphedema in my other right extremity unless I absolutely had to). Aug 2016 I had my exchange surgery.

Surgeries were uneventful as far as recovery and healing.

Today is exactly one year since my mastectomy and I find myself pregnant. It's very early in the pregnancy and I'm had some spotting so I am not sure this is gonna stick. After all I am forty and a half. The HCG bloodwork confirmed pregnancy and the number is good for where I am. Of course even if it sticks I have a ton of tests and scans in front of me, the amnio, etc..

I know DCIS is supposed to be non-invasive but I am extremely scared about distant recurrence. In fact that is all I'm thinking about. I had very long time between my original biopsy and lumpectomy (3mo) and from lumpectomy and mastectomy (4 mo). And what if God forbid some cells have escaped somehow. There is a weird article circulating on the internet about that DCIS cells can still spread before they form a tumor (inside a duct, presumably (weird)).

On the other hand, all the doctors I talked to told me that it's fine for me to become pregnant. In fact, one said that what I had was 100% survivable.

But because the hormones for which my DCIS receptive to are about to flood my body, I am completely freaked out.

I wanted to have another baby so badly ever since I had my son. I was never maternal in my 20s and only realized what a blessing it is to have children was after I had my son, which is when I was already 34. Soon after that, I learned that my mom was BRCA2+ and what that meant. My mom was diagnosed with invasive BC at 62 so I never knew until that time that there was a BC risk in the family. Of course I know that in my mid 40s I will be removing my ovaries as well.

I refused genetic testing for myself because I was not ready for prophylactic mastectomy. Partially because my mom was diagnosed later in life. I was doing increased imaging but not as intense as some BRCA+ patients. DCIS calcifications were picked up only on my 2nd mammogram. Believe it or not, the MRI which I had on the same day as the bad mammo, was clear in my DCIS-affected breast.

When I learned I had 50% of carrying the mutation I was very cautious about having another child. For BRCA2+ patients, pregnancy actually increases the risk of breast cancer, not decreases it (I don't know what that means if my breasts are already removed and if DCIS was truly non-invasive). I wanted to have more years go by between children, but I was certain I wanted another baby very badly. So between breast-feeding for over 2 years (didn't prevent bc, unfortunately), one miscarriage, and all the 6-month imaging follow-ups that I had to go through (all negative in the end), five years went by before the DCIS was found.

And now I am pregnant. I don't know whether to be cautiously optimistic or cry. I have one son that is the love of my life and the husband I couldn't be happier with. Am I risking my life here? In some ways I feel like every day of life is a risk but am I doing something irrational?

I would love to hear from those who have been here or those who can relate. Thanks.

LAstar

Congratulations on your pregnancy! I can imagine that you are still trying to negotiate all that you have been through, and it's completely normal to be worrying about distant recurrence even if you were not pregnant. I imagine that you felt very confident about your decision to have MX after more DCIS was found. With your good margins and low-to-intermediate grade DCIS, I would feel pretty confident moving forward that you have the best prognosis. You will worry, but you will worry less as time goes on, especially when you are holding that sweet baby and hoping for a nap! I vote for optimism! I was hoping to have a second baby but my diagnosis put an end to that dream. I'm so happy for you to have this blessing, and I hope that you enjoy your pregnancy as a gift for all that you have been thorugh.

August2015

Dear LAstar,

Thank you from the bottom of my heart for your kind and optimistic words. I am still very early on with the pregnancy so everything could change overnight, but my feelings are pulling me in opposite directions. I am basically just taking it one day at the time.

I have never gotten a second opinion on any of my pathology slides, and now I wonder if I should have. My surgeon told me that it wasn't necessary but being the paranoid patient that I am, I am tempted to have someone look over them now. Of course if the discrepancy is found, it could open up a huge can of worms.

So I will see where I'm gonna be a week from now and take it from there. Thank you so much again for your support.

Annette47

I agree with LAStar - I think it is normal to worry, especially with your BRCA status, but I also think that your chances are excellent. And going forward you will be monitored VERY closely, so if anything does come up it should be found quickly. You could also ask about going on Tamoxifen after the baby arrives to tide you over until you get your ovaries out. I’m not sure it’s necessary, but if the pregnancy makes you at higher risk, then maybe the Tamoxifen can kind of even it out - something to ask about, anyway.

Just a quick aside that it’s very unlikely that a second opinion would have made much of a difference unless the original pathologist was completely incompetent. Even if something invasive was missed it would almost certainly only be a tiny micro-invasion (or else it wouldn’t have been missed) and that doesn’t change your treatment at all.

August2015

Thank you, Annette, I really hope you are right. I will mention Tamoxifen to my doctors. Taking it one day at the time here :