Want another baby, DCIS, ER/PR+ HER2+
But so worried about high recurrence risk with DCIS, ER/PR+ HER2+. I am assuming since my cancer wasn't invasive that is the main reason why I wasn't put on tamoxifen even though my ER was positive??? We really want to try and get pregnant with our second baby, but we would have to go through IVF which scares me because I was ER/PR+ and HER2+.
Anyone have this BC diagnosis and gone through pregnancy?
Thanks! Jess
Comments
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How long ago was your diagnosis? Did you have Herceptin?
I'm not in your situation but I think you should talk it over with your oncologist. You could ask him about the Tamoxifem as well as the effect of IVF.
Best to make an informed decision. I hope it works out for you.
Macc
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Thanks Macc for your reply. I was diagnosed on Oct 7, 2009 and had a bilateral mast on Nov 5, 2009. Since my BC was DCIS, I did not have to go through any kind of treatment including herceptin. And since I was DCIS, I did not have to see an Oncologist. I just still feel like I need to see one so I can ask my questions and I feel like I still need drugs/treatment to treat my er+ and HER2+....i dont know, I am just so confused, wish I could find women out there that have the same diagnosis as me.
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I am no expert and I certainly would reccomend that you speak to an oncologist to talk about your risk, however, from what I understand of DCIS, once you remove it (as long as everything is removed), it is suppose to be gone, therefore no reoccurence as it is not invasive and wouldnt have travelled anywhere else in the body). I believe your risk would maybe be for a new cancer showing up especially with the IVF? If everything has been removed, and if you had mastectomies it most likely is.. then being treated for the ER+ and HER2+ is not necessary as you have no cells left to treat...again this is my understanding. I had IDC 20% PR+ and had one mastectomy, they didn't even bother to give me radiation as they were 99.99% sure that the cells were all removed from the area, had chemo to ensure that if any cells were left lingering in the rest of my body, they would be caught. A year after treatment my oncologist gave me his blessing to get pregnant. I am now 15 weeks and couldnt feel better!
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Jess,
I would highly recommend talking to an oncologist before you make any decisions. My story is a bit more complicated but I feel that I should share.
I was dx with stage 1 breast cancer in 2000 at 28 years old. I did lumpectomy, chemo, radiation and tamoxifen for 5 years (as well as ovary supression). In April of 2006, my oncologist told me that I was cleared for pregnancy and that there was no reason to think it would make my cancer come back.
I ended up having to do shots (Follistim maybe?) and Articificial Insemation because ovulation was a problem for me. Thankfully, I got pregnant and have the most wonderful 2 year old boy.
In 2009 - when my son was 9 months old - I learned that my cancer had come back but this time was metastatic - and spread to my lung. I am currently on chemo but it's not too bad. I did have to have a hysterectomy (being ER+) so no more children for me.
So would I do it over? ABSOLUTELY. It's a very personal decision and I know that firsthand, I don't know if the hormones I took during fertility treatment or the hormones from pregnancy made my cancer come back - there's no way to no for sure. I knew I wanted a child - and nothing was going to stop me.
That being said...............if I was able to have another baby biologically now, I would probably not do it. I would be more apt to look into adoption. Less risk for me and my family being the main reason why.
Sorry that this post got so long. It's a topic that I am VERY passionate about. It's a personal choice.
Wishing you the best of luck!Jessica
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Hi Jess, I thought I'd share my pregnancy story seeing as Jessica did too.
I was first diagnosed in 2006 at age 30 with stage 2b breast cancer, 3.5cm, 3 nodes involved, ER+/PR+, HER2-. I found out a week later that I was pregnant with my first baby (planned). I had a mastectomy hoping to be able to put off chemo until it was safe for the baby, but seeing I was very ER+ all my doctors recommended terminating the pregnancy so I (very, very relucantly) did so. That decision was the hardest of my life and haunts me still.
Before doing chemo, though, I did the first half of IVF - egg extraction and fertilisation. We ended up freezing 15 embryos. I did chemo, radio, 1.5 yrs of tamoxifen and 1 yr of zolodex. I should have done 5 yrs of tamoxifen but I was just so depressed at having lost the baby that I decided along with my husband to try for another baby early. My oncologist did a bone scan and a ct scan a month after I came off tamoxifen and the tests were all clear. That was October 2008.
I got pregnant using some of the IVF embryos (it took five frozen embryos to get a viable "defrosted" one) in January 2009 and gave birth to a beautiful baby boy in October 2009. I had back pain since the third trimester which didn't go away, and I ended up being diagnosed with bone and liver mets on the 7th of January 2010.
Do I regret going off tamoxifen and having a baby? No, absolutely not, he is the shining light of my life. My oncologist has said that it's likely that my cancer would have always come back, due to how quickly it came back, but the high levels of estrogen during pregnancy certainly would have sped it along.
But, like Jessica, I knew I wanted a child and nothing was going to stop me. I was so unhappy not being pregnant and not having a baby, and I know the mets diagnosis would be so much harder for me to bear without my baby. I'm sad that I won't have any more babies (even though we have 10 frozen embryos left I'm not allowed to get pregnant again) but at the moment I'm more concerned with how much of my son's life I'll be around for.
Thanks for listening to my story,
Kate
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Jess,
Thanks for posting. My wife was diagnosed in July 08 with DCIS. Bilateral mast in Aug 08. Like yours it was ER+/PR+. We already had 2 kids, but we were planning on a third. After a year we decided we were going to try. Oncologist and breast surgeon both said there was no reason not to. All tissue was removed so no worries. Worries will always be there though. We found out we were pregnant in Jan 2010 (although it is looking like it will miscarry). Her OB put her on progesterone as her levels were low. This worries us more than anything. Taking a hormone that the cancer feeds on. She is having a tough time as she has a constant worry there could be a cancer cell and it will be triggered by this drug she is taking.
We go in this Thurs for another sono to see if there is a heartbeat. Doc says there should have been one last week, but there was not. He seems to be 99% sure it is a failed pregnancy. If it is we will not try again as it has been too hard on my wife. If she did not need to take the progesterone she would not be so worried.
Not sure that was much help, but we are in the same spot as you with the same diagnosis.
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I thought I should post on here just to give a hope story, I have just passed my 20 years free from breast cancer and I found my lump when I was pregnant with my first child. It was thought to be blocked milk duct and not found to be cancer till my baby was 6 weeks old. I did mast/chemo and silicone implant. Just over 2 years after my chemo I became pregnant with my second daughter, no complications and another healthy daughter born 3 years to the day of my mast, she just turned 17. I was very lucky to fall pregnant, actually fell first time I tried with her. I have had many ladies say I was selfish dah dah dah wanting to have a child after bc, it just gave me more reason to want to live, to be there for my girls, I have always thought I could die of something different than cancer any day, why should I look at it all different, I had bc, I had it removed and did the best to keep it gone, I never dwelled on it, just went ahead in life doing what makes me happy. Good luck to you all, oh p.s. I too have had a blind pregnancy my very first pregnancy, it hurts like hell, however I fell pregnant straight away again and she is now 20. Hugs to you all and will add you all in my prayers for health and happiness. kj_andrews@hotmail.com just in case anyone would like to ask or chat. Kathy
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I just spotted the title of this thread and realized that I had just read a posting in an active thread on the DCIS forum that is pertinent to your inquiry, the poster, CAMIAM is in her 30's and has had two pregnancies since diagnosis, this is her profile http://community.breastcancer.org/member/92609/profile
perhaps you can pm her?
Julie E
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Jess, I am not ER/PR+, but strongly HER2+. I was dx in 2005, while trying for another baby. Went through all the tx and a year of Herceptin. Innitially we just accepted that we can't have another baby. But last year, after a dream where a baby told me it is time for her to be born, I decided to try again. It took about 4 months to fall pregnant, but that pregnancy ended as a blind pregnancy as well. Fell pregnant a month later and was put on PR to keep the pregnancy. It worked and I am now 14 weeks pregnant! The fear is very real that the PR will trigger a return, but my desperation for another baby is bigger. We are being pro-active. Seeing onc every 3 months for physical and Tumor Markers. We'll do all the scans again when the baby is born.
@Tjfree, good luck to you guys. I was devastated when I lost my pregnancy and immediately after the D&C started intensive Reiki to try and improve the quality of my eggs. I am convinced it worked, but even more convinced that this baby just had to find a way into my life. I have fears of all the chemo and stuff somehow affecting it even after all this time, but somehow have a peace in me that this baby will be perfect to me.
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