Pregnancy after BC

Hello Ladies, I have a question for anyone about pregnancy after BC. Has anyone gotten pregnant after and has done okay? I'm 2 years out and am seriously thinking of starting a family. My onc said she'd like to see me wait till I'm at least 3 years out because I'm HER2+. My question is how dangerous is it to get pregnant if you're her2? I was diagnosed stage2a, 1.8cm, stage 3, er+pr+, diagnosed 12/03. I know that it's not as tricky if you're er- her2 neg. Of course my onc basically said it's a very personal decision one that I'd have to make so I'd like to do my own survey of how everyone has done.

cheers and HAPPY NEW YEAR!

[Sheila]

Linda

A friend of mine from my local support group had a mastectomy, chemo, repeat mastectomy for the other side 9 mos later then taxol....she gave birth to a perfectly healthy girl 11 mos after finishing taxol....she was elated at 27 years old...so there is hope...I do not think she was Her2 +, but I will call her and see. I do know there is a concern that you be off chemo for a while before becoming pregnant....she was lucky the baby was fine. Hope this helps.

[kristen]

Dear Linda,

This disease robs us of so much, it shouldn't be able to rob us of something that comes very natural and instinctual to us.

I hate the BUT part.... My understanding was because you are er+, that you have more concerns because you will be increassing those levels if you become preg.? That's the tricky part I have heard of, not being Her2. Your onc, might be referring to the
"if " it comes back, Her2, it usually did it within the first 2-3 yrs. Right now, with the help of Herceptin, those are the answers we are waiting on. The women that I know who struggle with this concern have had to be on Tamoxifen to shut down there ovaries because they were er+ for a number of years. The 3-5 rule your onc. was talking about. Have you discussed this with your ob/gyn?

This is a tough one, but I too have heard the wonderful stories of women having children after chemo. I wish you the best in finding the answer to a very personal decision. I think you'll know if it's right for you or not after you have talked with others in your situation and your medical team and most importantly your husband.

Have you ever gone to the YSC board? Young Survival Coalition? This is a group of women who have had BC from there early 20's and up and have regular discussions on this topic.

[saleboat]

The sad thing is that this topic is just not well studied and therefore difficult for Oncs to make recommendations. For my own personal family planning, I would like to wait until I'm 3 years post-dx-- based on the early-stage Herceptin studies that were recently released, it seems as through the recurrances level off past the 3 year mark. It is such an individual decision, and maybe I'll change my mind.

Jen

thanks you guys..... yes, I have been on the YSC board. It's pretty informative as well however the "pregnancy" topic only has her2 negative responders. I've been on tamoxifen since sept '04. Funny enough, this could solve everything. My periods haven't come back yet but when I go for my ultrasounds at my obgyn, it's all systems go. My uterus is still functioning and I'm still developing eggs just not having my periods. It's been alittle baffling to my onc. because he thought this would be the case for awhile then it would come back.... I'm sure it will once I'm off the tamox. At least I hope so! I forgot to mention I had TAC for 6 months and radiation. Thanks for all your responses. It's helping me alot. I'm thinking of going off tamox around march then possibly start trying. My husband's been very supportive of all this but I know deep inside he'd like a child as would I.
cheers,
Linda

Here are some links that may be of interest.

There is also some pertinent material on the post on return of the menstural cylce below including two sites that specialise in fertility issues - Fertile Hope and another - the perspectives of younger sufferers etc.

Statistics on fertility paint different pictures dependent on which report you read, and are not easy to find

RB




http://www.asco.org/ac/1,1003,_12-00...-004265,00.asp

ABSTRACT


“Background: Many young women with breast cancer are interested in preserving fertility. We evaluated fertility outcomes of breast cancer survivors with the Young Survival Coalition (YSC), an advocacy group for young women with breast cancer. Methods: We developed a survey about fertility issues for women with early breast cancer. A link to the survey was emailed to all registered YSC survivor members (N= 1702). Eligible members were asked to complete the survey. Email reminders were used. Results: 657 women completed the survey. Mean age at breast cancer diagnosis was 32.9 years; mean current age 35.8 years. 90% of women were white; 62% married, 23% never married; 76% college graduates. 93% were having regular monthly periods at diagnosis. Stages included: 0 (10%), I (27%), II (47%), III (13%). Only 24% of women reported that, at diagnosis, they did not want a future pregnancy. 12% of women took steps to preserve fertility through treatment. 86% received chemotherapy, 43% tamoxifen, 3% aromatase inhibitor, and 14% ovarian suppression; 9% received no systemic treatment. At a median follow-up of 1.8 years, 8% reported recurrent disease. 78% of women overall, including 78% of the women who received chemotherapy, were still menstruating. 12% of women had been pregnant at least once, with 2% reporting spontaneous abortions and 2% therapeutic abortions; 7% had at least one live birth. Only 18% of women who wanted a future pregnancy at diagnosis had become pregnant. 10% reported having tried to become pregnant since diagnosis and 58% of these women reported at least one pregnancy. In a multivariate model, pregnancy after breast cancer was associated with younger age at diagnosis (age <30 vs. age 30-35, O.R. 0.76, p = 0.37; age <30 vs. age >35, O.R. 0.30, p=0.002), longer time since diagnosis (per year O.R 1.21, p <0.0001) and no tamoxifen treatment (O.R. 3.49, p <0.0001). Nonsignificant covariates included stage, fear of recurrence, chemotherapy, and prior fertility history. Conclusions: Most young women continue to menstruate following treatment for breast cancer, including chemotherapy. A relatively small percentage of women in this series have become pregnant, however the median follow-up is short.”



http://www.breastlink.com/optimal_care/article10.aspx

http://my.webmd.com/content/article/95/103281.htm

http://www.fertilehope.org/uploads/p...Transcript.pdf

http://www.moffitt.usf.edu/pubs/ccj/v6n3/article6.htm

http://www.meb.uni-bonn.de/cancer.go...000062770.html

http://www.dana-farber.org/abo/news/...ive/120503.asp

http://66.249.93.104/search?q=cache:...ient=firefox-a

http://medicineworld.org/cancer/lead...fertility.html

http://www.komen.org/stellent/groups.../spbcyoung.pdf

http://www.cancernews.com/articles/cancer&fertility.htm

[al from Canada]

Dear Linda,
Given all the uncertainties in life, why wait? Having said that; You really can't ignore the stats, (as much as I preach that they don't mean much) and, I would make absolutely certain you have a guardianship plan written in stone so if anything ever does happen to you..... your legacy is well provided for and taken care of. Unfortunately, you are in the position of having to prepare for your child's upbringing in a post-mortem sense, much more so than most moms would. You didn't mention if there was a significant other and their views. If I were in that (his) position; I know which way I would vote!
Wishing you all the best,
Al

[Michelle]

Linda,
Breast cancer robs us of so much. From the day of diagnosis we never know where this road will lead us. Listen to your heart , it will lead you in the right direction. I was diagnosed her2+++, er+/pr+ and my onc has asked me If I plan on anymore pg's. He has never told me not too, but it is not something I'am pursuing right now. I can tell you motherhood is a beautiful gift, and I wish you the best.
Michelle

[julierene]

From my own experience, I kinda wished I had known about all the gene issues before I had my children, because now I have 3 children with the same gene mutation and a huge chance of getting cancer before the age of 16. I also am so worried because I was stage 2a too, and I kept telling myself that I was practically stage 1, then 23 months later I find out I have liver and bone mets - just like my mother (who died at 33).

My advice would be - to find answers to these questions...
1. Can you be happy with the "worst" case scenario?
2. If you got cancer again, and you were told you were Stage 4, how you would feel about this baby?
3. If you were told you had a genetic condition, that your new baby tested positive for 3 months into the pregnancy, how would you handle that news? 4. Even if they didn't find the gene now, how would you feel if your daughter had the same risk as you? (My mother and I both got er- early stage bc during pregnancy at age 28 - then both of us were stage 4 even though it was "early")

I hate to rain on the parade, but bringing a baby into the world, with all the risks probably would have made me make a different decision if I had known. Because now my children run the terrible cancer risks (my 6 year old daughter is battling adrenal cortical carcinoma as we speak).

I would probably wait 3 years, and then find out about genetic testing before conceiving. If you are under the age of 40, I would greatly suspect genes.

The ER+ thing would make me VERY nervous with only 2 years out. Did you have a bilateral mastectomy + radiation? If there is no breast tissue left, you might be ok. But I have long said since both my mother and I got dx during pregnancy, that it is very risky to mix pregnancy and BC. Though no docs have ever really backed me up on it.

Good luck with your decision, I wish I had the chance to do it all over again.

[Celina]

Linda,

All the best with this very difficult decision.

Julie,

Could you please let me know what genes were tested for you and your children. Was it the usual BRAC I and BRAC II? Also, I'm curious to know what you've heard about the percentages..I was told that less than 10% of breast cancer patients test positive for the gene mutation, including those under 40 yrs. old. Although, I've also been told that in order to determine the risk factor many more genes would need to be tested...apparently much too time consuming and expensive.

Celina

[julierene]

p53 was the one we were tested for. My brother died from rhabdomyosarcoma at age 12, he got it at age 5. My mother and I both got breast cancer at age 28, and my daughter got adrenal cortical carcinoma at age 5. It's very difficult to figure out what testing should be done. But that was a side note, to the already perplexing amount of information that is available about genetic cancer.

I believe the number is much higher than 10% in women under 40. Maybe 10% have the BRAC mutation. There are so many genes, other than BRAC 1 and 2 though. 12 years ago, they tested our p53 gene, and found nothing. It took 12 years to find what had been causing our problem.

One thing they don't deny is that family history is a huge factor. Basically, your children have a 50% chance of inheriting the genes that you got to cause your body to be susceptible to cancer. The docs have only mapped out certain genes that are "known" to be problem areas. Just because they don't have a test, doesn't mean the information of your cancer dx won't be extremely important to your children.

I grew up thinking my risk wasn't big because I thought I would take better care of myself. No smoking, hardly ever drinking, and when I had a drink (nothing to get drunk over), no birth control pills, eating right, not being overweight, etc. It didn't matter. I feel the same way about women under 40 who get BC - and even moreso for those under 35. I think it will take another 20 years before that can be realized through the genetics testing.

If you don't have a specific gene in mind for your family history, I wouldn't recommend any kind of testing. Chances are, they won't find anything and you will get a false sense of security. Ugh, what a yucky thing to say. But I have never been the type of person to sugar-coat anything - no point starting now.

Here is a post on gene array testing.

If as suggested such tests are more reliable it may help in the determination of your decision.

There are at least two on the market.

I do not know if they will give you information on inherited risk traits as well.

RB




http://www.sciencedaily.com/upi/inde...microarray.xml
Gene array predicts breast cancer outcome
By ASTARA MARCH
WASHINGTON, Oct. 4 (UPI) -- Researchers in Sweden have identified 64 genes that can predict who will respond to breast-cancer treatment after surgery more accurately than the currently accepted prognostic markers for the disease.

This genetic information could be used to design precise therapies for patients that could be far more successful than conventional approaches, the researchers said.

The team was led by Jonas Bergh, a professor of clinical and molecular oncology at the Karolinska Institute in Stockholm. They extracted tumor samples from 159 patients with breast cancer and analyzed each tumor's genetic make-up using a process called DNA microarray analysis. The technique allows researchers to study thousands of genes simultaneously and analyze the expression of those genes.

When they correlated their data with what happened to the patients five years after surgery, the researchers found the 38 patients who had experienced a relapse of their cancer, or who died from any cause within that period, shared 64 genes that differed from the patients who survived.

It turned out the expression patterns of those genes provide a much better guide to breast-cancer prognosis than all existing accepted indicators, such as histological grading, tumor stage and patient's age. The microarray even could predict who would do well if no therapy were offered.

The researchers also used gene-expression profiling to study the 121 patients who did well, with or without conventional therapy.

Writing in the current issue of Breast Cancer Analysis, the Karolinska team suggested their discovery could be used to spare many women from treatments that ultimately would be unsuccessful and would subject them to painful side effects that could produce more harm than good.

There may be ethical concerns about the approach, but it could reduce the waste of healthcare resources, they added.

Astara March covers healthcare research and technology for UPI. E-mail: sciencemail@upi.com

Copyright 2005 by United Press International. All Rights Reserved.



http://www.ferticon.de/newsletter.php3?id=95&la=en

[Rozebud]

Linda - the posts on the YSC board are from people with all sorts of pathology - if you go to the pregnancy/fertility board you will see I've responded to several and I'm her2+. I am er- but pr+ (only 23%).

My oncologist says that if you are either ER/PR+ OR have positive nodes, children should be out of your future. But she also says it's a very personal decision. I am blessed with 2, but as Kristen (who posted earlier) knows, 2 years after dx, I'm still struggling with the likelihood I won't have anymore. So we're hoping we'll be able to adopt when I hit the 5 year cancer free mark and I'll have my ovaries out.

How highly ER/PR positive are you? I did my own "research" and found 4 ER/PR positive women that went on to have post bc babies. 2 recurred and 2 did not. Not a statistical sample, but 50% seemed too much of a risk for me, so I'm working at having my mind convince my heart that no more babies are in the cards for me.

[Annemarie]

Hi,
I was 32 years old at diagnosis and trying to get pregnant when diagnosed. I found the fertility issue to be much more devastating than the bc part. It was always our dream to have a family. Well bc has not made me stop living. We did have a baby but we used a gestational surrogate. For us we felt it was the safest way.

By the way I did get pregnant after chemo but miscarried. Studies do show a higher m/c rate among chemo treated pts. with bc. The egg production is another issue after chemo. Even if you are producing eggs your FSH levels have to be below about 10 to get a decent outcome. Mine went up to 99 and then returned to below 10 after over a year after chemo. I started with an FSH of 6 pre-chemo. So once your periods return you should get these numbers tested. When you do not have a menstraul cycle your FSH levels are higher than 32 but that can change from month to month. I lost my periods for 14 mos. and then everything went back to normal. I am er/pr+ and her2+++. Since I did so much research on this topic I did learn that if you do need treatment during pregnancy you can get chemo once you are past your first trimester. It is whatever you and you husband decide. I wish you the best of luck!

[Barbara H.]

Hi,
I had my children before I was diagnosed, but I have read that Eric Winer at the Dana Farber is or will begin a program for young women with breast cancer. It might be worth while to call the Dana Farber and and see if you can get his opinion. I had 9 out of 11 positive nodes and it took me 6 years for my cancer to metastasize. Unfortuantely, I was unable to receive Herceptin for early disease in 98.
Good luck!!!
Barbara H.

[chrislmelb]

i'd also like to know what you have been tested for as i am under the impression that HER-2 is not inherited. I too have been tested but, as i expected, i came back negative.
Which brings me to the question, who out there has been tested for the gene and is HER-2 ?
Take care
Christine

[kristen]

Chrs,
No-one I know of....
This is just my thoughts on the testing of genes. Are you referring to the BRCA test?
There is what? 16% that they don't know what the gene is made up of they call it being suspect? They can't tell you if it's BRCA 1 or 2, but it's the piece of the pie they can't name. I can't remember the exact percentage or if they call it suspect but it's pretty close. ( chemo brain, menopuause brain here,) but just about everyone I know who has been tested for the BRCA gene is neg that is HER 2+++.

I am no scientist but from what I have read over the years, her2 is an oncogene (that is a different gene the the DNA they test for with BRCA) that everyone has and for some reason, ours goes nuts and we get cancer. My genetisict told me that her 2 is NOT a factor in the BRCA test. I think someday and here soon, that they will find a gene that will show up in that test for us that will relate to her2. That being in the remaining 16%???
The other test they were talking about reminds me of the Onco DX test. Which will tell you about treatment but not passing on the gene(s) to your children or grandchildren.
I think Julieren has a very specific gene they can look for something that has been in there family and has been found by very sad circumstance. I look at it like having Ataxia, it has it's own gene they can test for and until we know what gene that is for her2 that makes it go crazy, the BRCA one is the only one I have heard of....
I could very well be wrong about gene testing, I had the BRCA test done and it was neg also. But my limited mind and researching has left me with that thought.
I am open to hearing anyones else's thougths on this.....

It's a personal decision. But I need to tell you about my freind; she had BC, ER/PR+ at 36, 5 years after surgery, chemo and radiation, she decided to have a baby, for the first one she had to have an abortion, because they did find out there is problem with baby(becuase of chemo) then she tried again after 7 month, and now she has a 1 year old beautiful baby girl and healthy, but the cancer is back so now she is stage 4, in pain...
Make sure you are preapred to have to someone to take care of the baby, if BC comes back.
Best luck to you.

HI there everybody! Happy New Year!
I just got back today from a grand new years weekend. My husband and I rented a secluded cabin in Zion National Forest. I get away to nature now as much as I can. It puts such a perspective on things and I don't deny myself anything anymore. I was surprised how many more responses I've recieved regarding my question. THANK YOU everyone! You've all given me alot of information and things to think about. I don't have a history of BC in my family. Prostrate on my dad's side though. Don't know if there's a link. It's expensive, but I'm leaning on a syrogate. Can/does anyone know of a good reputable place I can start doing research by any chance?

Thanks again everyone..... God bless

[Becky]

I was tested for BRCA 1&2 and came back with no mutations. Strong history on both sides of my family (with my father's side being Jewish which is strong for the BRCA 1&2). My mom and 3 of her sisters have bc (but just hormone driven not Her 2) and my dad's mom and aunt had ovarian cancer.

However, most BRCA 1 breast cancers are hormone negative (but not necessarily Her 2 driven).

Warm regards

Becky