Fertility treatments with Stage 3 breast cancer history

sweetbean

Hi everyone!

OK, I'm almost seven years out from Stage 3 BC (yay)! I got married in 2015 and am considering having a baby (I have never had one). I have three lovely step-children, but it would be nice to have my own baby. I'm 43. I did egg harvesting when I was diagnosed, so I have seven frozen eggs. Does anyone have an opinion about whether this is too risky for someone with a history of advanced BC? Be honest, please. I would like a baby, but I don't want to die.

Thanks!

LeesaD

Don't really know the answer to this but just wanted to congratulate you on being seven years out!! That's awesome! That's great that you had the foresight to harvest your eggs and if your doctors decide too risky to carry you can always use a surrogate to just carry. All the best to you!

Shellsatthebeach

Since you are positive for estrogen receptors, I would definitely consult with your doctor. Congrats on your seven years out.

Kathleen26

You definitely need to talk to your MO about that one. A lot depends on your capacity for risk. I did a couple of rounds of IVF after a DCIS diagnosis back in the 1990's, and had a local recurrence about a year later. A simple mastectomy took care of that one, but I didn't try again after that. I don't know if I would have even had the nerve to try if I had had the Stage III diagnosis I got much later. I think it makes a difference that you are trying to implant embryos you already have rather than trying to generate and harvest new ones.

Best of luck to you, I hope you get the answer you want to hear from your doctors.

SSInUK

its very tricky and none of it ideal to say the least - but the surrogate option could really be the thing. We get you and your baby alive...That's the big win. Sad in theory to miss pregnancy - but I was sick daily for nine months and HATED mine! - and itis so irrelevant and so soon forgotten if you have your baby at the end of it. Huge good luck. You deserve this

Waronbreastcancer

My doctor says that studies point towards that pregnancy does not involve a greater risk for recurrence - even for stage 3. He thinks that it is a possibility that that I can become pregnant later even though I was stage 3 with many nodes involved. What does your own doctor say?

hopefour

Congratulations on your marriage and seven years. How wonderful to hope for a child and I think finding a way that is both safe and gives a healthy baby is the end result you want. I would research deeply about pregnancy and recurrence…I haven't researched this topic so have little to add to this decision, but am hoping all the best for you!

Outfield

Does IVF (which is what you would have to do) involve greater hormonal manipulation than a naturally occurring pregnancy? I don't know the answer to that, but it's a relevant question. Also, I see an above poster says there are studies about pregnancy being safe for women with a history of stage III. I'd want to see those studies and have my own MO look at the literature. You would want to know if those women with stage III were similar to you. Did they have ER+/PR+ cancer? Were there enough of them that you are convinced of the data? How long after the pregnancy were they followed? Things like that.

I have to say, because this part I don't think you can imagine unless you have a kid, THE hardest part of being diagnosed when my kids were 2 and 3 was the fear that I would not be around for them. Being afraid of dying wasn't even as bad as that.

Peregrinelady

My twin sister did 3 rounds of IVF, then was diagnosed within 2 years with stage 3c cancer. The IVF was unsuccessful, but the son she had naturally (she was trying for a 2nd child at 40) was 10 when she passed away. I believe our cancer is genetic, but I don't think she would have been as advanced if she hadn't done the IVF. That is just my opinion, but I do know that she had hormone injections and her cancer (and mine) were 100% ER. Also, I have noticed that now doctors will order mammmos between rounds of IVF. They did not do that with my sister, although I tried to get her to do it. So, even though they don't admit the risk, I think it is there. I like the surrogate idea.

sweetbean

Wow, thank you for all of your input! I really appreciate your thoughts!

Peregrinela, I am so sorry about the loss of your twin sister. I'm a twin, too.

Kathleen26, thank you for sharing your story - I'm so sorry that you had a recurrence.

Here are a few updates:

• There aren't any studies, per se, on this, because it would be impossible to study. You would have to find, say, 1000 women with BC, get 500 of them pregnant, and see how many recurrences happen between the two groups. (It's the same reason that there aren't definitive studies on whether different chemicals cause cancer - you can't knowingly expose people to risk like that.) However, I just saw my onc today and he said that, anecdotally, there wasn't really any thing that suggested that fertility treatments put you more at risk for recurrence. In his practice, he had seen people recur after fertility, but he also had patients that were fine. But he also said that, if I were his wife, he would want me to do ten years of Tamoxifen before trying. He was quite clear on that.
• Sadly, surrogacy is not really an option, due to cost. None of this will be covered due to my age (I'm 43), so I have pay cash. Pregnancy will be covered, but not for a surrogate.
• I have a "suspected deleterious mutation" on my BRCA 2 gene. It's basically the step before they declare you BRCA 2 + - they just need to see more people with the mutation. My onc said it was a matter of time. When I was diagnosed, the mutation was called "Undetermined significance," but then it got upgraded. Definitely something to factor in.
• This confirms what we all know - when it comes to cancer, all of the options are crappy. And you can't even choose the least crappy one, you have to choose the one that will give you the best chance at life. Argh!

I'm going to talk to my other oncologist (I have two, due to an insurance change, so I figure I will pick everyone's brain.) I could also talk to the fertility doctor, but her consultation is $740 (!!!!). That is a lot of money for an opinion.

Thanks, ladies! You are the BEST!

sweetbean

Holy crap, the only person I know in our situation used a gestational carrier (surrogate) and the cost was between $80,000 - $100,000! That is simply not possible for me. My friend was told by her oncologist not to come off of the Tamoxifen for ten years.

Blown away by the cost! (she does have a super cute little boy now, though!)

Waronbreastcancer

There are studies dealing with this subject, so that is not completely true.

https://www.wcrj.net/wp-content/uploads/sites/5/20...

I get very different advices from my doctor than you are... That being said, I don't know if I think I could handle emotionally going through a pregnancy.

SSInUK

My best friend is a kind wise Onc - and she always says - what outcomes can you live with? If you got pregnant had a kid and the cancer came back a year later - could you accept that or would you be tortured with regret? Then again, what if you never had a kid but lived long and healthily? Tough tough choices - but the 'could I live with it' I find a helpful approach.

Of course once you have the children it's not just what can you live with yourself - you've made choices for them too. I had my DX five years after IVF and often wonder if I put my daughter in this position.

I know anecdotal evidence is a bit pointless but.. I had a friend who had a stage 1 DX a year after her first baby was born - I think she was late 30's/40. She was NED after lumpectomy, and came off tamoxifen to have a second baby 3 years later - and the year after had a recurrence,. laterc progressed to Stage 4.Were these events related? Who knows. I know what her husband thinks. But his children are the joy of his life. The amazing deep mystery of children is that both the greatest wonder and joy of life, and its greatest tragedy, are tied up with them - even without BC.

Don't give up on kids - but please don't risk your health either - because they'll need you. Before you abandon the surrogate idea - do you have a sister? A friend? Someone out there who'd do it for human kindness and love? Wonder if anyone on these boards knows...,I'm minded to start a charity... what a wondrous thing to do in memory of a loved one lost to bc - carry a baby for another woman with the same disease...

I applaud your hopefulness in wanting to make life and hope very much for a baby for you if that's your choice - please come back and post pics!!

sweetbean

Waronbreastcancer, thank you for this study - it is super helpful. I'm printing it out to read thoroughly later.

SSinUK, Honestly, I don't think anecdotes are useless - I based my decision to have Reverse Arm Mapping (which was in clinical trial at the time) because I read anecdotal evidence that that surgery was preventing lymphedema. I had 15 nodes removed and don't have lymphedema. I highly recommend this procedure (although I think it is still in clinical trial.) Sometimes anecdotes are useful in that they help fill out the picture and clarify things.

Your question, "What outcomes can you live with?" is a good one. I would really like to be a mom, but I definitely don't want to die. I have three stepchildren and an awesome niece and nephew and even though it's not the same, it's not like I don't have great relationships with five children in my life.

Sadly, I have a twin sister who is also BRCA 2 + - before we got that confirmation, she was willing to carry, but now she is nervous. I am, too. I love her and don't want her to risk anything for me. My best friend, who also offered to carry, was diagnosed with a severe heart condition, so that is out of the picture as well.

Right now, I'm investigating adoption as a possibility. I'm going to keep my eggs frozen in storage, though.

Waronbreastcancer

Sweatbean - I just discovered that surrogacy is much cheaper in Georgia (the country) 🇬🇪 Maybe an idea! Are you brca2? I am too and also had ILC!

sweetbean

Waronbreastcancer,

I have a "suspected deleterious mutation" on my BRCA 2 gene, which they treat as positive. When I was diagnosed, it was labeled "undetermined significance" but then was upgraded. Lucky me! (Argh.)

I had IDC and ILC and I was triple positive. I guess I didn't want to miss out on any of the fun!

I'm afraid even half price surrogacy would be out of the realm of possibility for me. But thank you for the suggestion! I just need to win the lottery.

Momine

I have no experience with this, but I would be very reluctant.

SSInUK

adoption is a very interesting option too. I didn't give birth to my dog - but she's part of our family,my dog and no one else's!!

sweetbean

Yes, SSinUK, we are looking at that possibility. I could definitely adopt - I have always loved the idea. It is also quite expensive, it seems. But it seems like the most viable option at this point.