debating getting pregnant as high risk woman

kibbles

I consider myself a high risk woman for many reasons.  I've had two excisional biopsies that revealed fibroadenomas, have additional small fibroadenomas still in my breasts, have some relatives with breast cancer, have a family history full of other cancers, including ovarian, was exposed to radiation as a teen, have never been pregnant, and have complicated fibrocystic breasts as according to my breast surgeon.  Additionally, I've had both cyclic and non-cyclic breast pain continuously since I was 14, and started my period early.  I have not pursued genetic testing yet for BRCA.  I'm 31. 

 I am contemplating getting pregnant but there is an association between pregnancy and having a higher risk of getting breast cancer for a number of years after giving birth.  I am wondering whether or not the risk is worth it, as I am open to adoption or surrogacy.  Is anyone else wondering about this?

Emily2008

From what I've read, preganancy and breast feeding are actually protective against breast cancer.  The exception to this is for women (like me) who are BRCA pos.  In our case, pregnancy and breast feeding can trigger the gene mutation which keeps our bodies from naturally killing off cance cells.  IOW, we know that everybody's body produces cancer cells, but most people's immune systems target the rapidly dividing malignancies and eradicate them before they cause trouble.  In BRCA people, they mechanism that instructs the immune system to attack the cancerous cells doesn't work properly, or (in my case) is deleted.  Something with the increase in estrogen during pregnancy and lactation exacerbates this, but like I said, this is in BRCA women.  I don't think the same rules apply to every woman.

I was dx after having 3 kids, so I was done anyway.  If I hadn't had kids, and knew then what I know now, I might consider adopting rather than getting pregnant.  But that's just me, and my own set of circumstances.

ETA:  The research has shown the risk correlates more for BRCA 2 pos women.  I should add that I in no way regret having my kiddos, obviously!  Like the other poster said, I'd give up any body part just to have them.  Most days I think I've given up my brain, LOL!  However, for a woman who has not yet had kids and is considering her risk of bc and its association with pregnancy, it is most definitely something to consider.  I agree that speaking with a CGC (certified genetic counselor) is the way to go to make an informed decision.

SandyAust

I think that is a very personal choice.  However for what it is worth this is how I look at it.  I got breast cancer at 36, four years after giving birth with twins.  I didn't know it then, but now I am classified as high risk based on my bc, mothers bc at young age, and aunt with ovarian.  However it is a risk and not a certainty. If I knew then what I know now would I choose not to have my kids - NO WAY.  They could have my other breast and a leg too before I would give my kids back. 

However after being diagnosed with breast cancer I chose not to have a much wanted third child as I felt the risk was too great.  I believe this is different.  Just my opinion, it doesn't mean I am right.

Perhaps you need to talk to a geneticist and determine just how high your risk really is.  But remember it is risk not a certainty and you can always do your screening for early detection.

Good luck.

Sandy

Anonymous

Since you don't have children I would say go for it. I wouldn't want you to have regrets. Can you not take a very watchful stance ?

Adoption is not easy - speaking from experience from years and years of waiting and I still don't have a baby in my arms.

Leah_S

I think talking to a genetic counselor would be your best move right now.

What you also should ask yourself is - do you want this risk to be something that keeps you cautious or that runs your life? In other words, how much is fear making this decision? How much is a real risk? From what I understand, the family history is relevant, but the fibroadenomas and breast pain are not precursors for cancer. You also said you got your first period "early". What's your definition of early?

I wish you all the best with your decision.

Leah

kibbles

I guess my recent experience (2 months ago) with the horrible feeling of finding a lump, not knowing what it is, getting it surgically removed, and the recovery has made me horribly wary of doing anything that might increase my risk of breast cancer.  This experience really negatively affected me, and I worry about increasing my risk by getting pregnant.  My breast surgeon tells me that he does not think I have much of an increased risk in terms of family history, but my grandmother had ovarian cancer, and cancer is rampant in my family in general.  As for my period, I was 11 when I got it.  But I am most worried about my radiation exposure as a teen, exposing developing breast tissue to radiation.  I have three fibroadenomas diagnosed in the past year--the worry surrounding this has been hard for me, as I am a huge worrier.  I don't know if I can handle the "what ifs" of getting pregnant.

 I do take a very watchful stance--I get clinical breast exams from my breast surgeon three times a year, and have ultrasounds every 6 months.  This year alone due to all of the fibroadenomas I've had about 6 clinical breast exams, between my breast surgeon and gyn, and I found a new lump (2 cm.) one month after my last clinical breast exam--I could not believe it and the concern about this turned me into a basketcase until I got the path report from the excisional biopsy.

 My breast surgeon does not recommend mammograms for me due to my extremely fibrocystic breasts and thick areas.  I have never smoked or drank, an I am of a normal weight, and eat a vegetarian and low-fat diet.  I also don't even wear a bra.  But I seem to be prone to fibroadenomas, fibrocystic breasts, and "complicated" breasts as according to my breast surgeon. I have had horrendous cyclical and non-cyclical breast pain ever since I was a teen.  For three out of four weeks of the month my breasts hurt, sometimes severely.  I know this has nothing to do with breast cancer, but I feel that my breasts exhibit some unusual issues, such as this.

I think I will go to see a genetic counselor, but my breast surgeon said that they would need blood samples from the older relatives who have breast cancer to see if they have the gene, and that is not going to happen as I barely know them and they wouldn't agree to it.

I am really not sure what to do.  My husband is pressuring me into having a baby, but I am concerned about the ramifications for my health.  If it were up to me, I would probably just say let's adopt or maybe use a surrogate (not my eggs though).  But he wants me to have a child.  

Emily2008

To see if YOU have the gene, all they need is a blood sample from YOU.  It's a fairly simple process, once you get connected with a counselor.  You go through "genetic counseling" where you basically describe your family tree (relatives, when and how they died) and the counselor can give some insight into what your BRCA risk is.  Then, it's a blood test and within a couple of weeks you should know.  It's an expensive test, but the lab (Myriad in the US) works with insurance companies to get all or most of it covered.

So, start there and then you'll know what you're dealing with.  Right now it's all theoretical since you don't even know if you're gene positive.  I know the decisions that go along with this are agonizing, especially as you're debating getting pregnant.  I would just say that until you know your genetic status, don't make any firm decisions either way.  Even if you find out you are BRCA positive, you need to find out your risk level and how pregnancy affects it.  Arm yourself with the knowledge before you make any life altering decisions.

roseg

I wouldn't let the mere fact of being high-risk deter me from having children. 

Everything in life entails some risk. If you don't want children don't have them, but don't say it was because you MIGHT get cancer.

That's letting cancer rule your life and you don't even have it!

kibbles

My breast surgeon did not advise me to get tested and doesn't think I'm high risk for BRCA.  But the more I read about BRCA the more I think I am high risk and should get tested.  It's a scary proposition though.  I guess the first step would be to talk to a genetic counselor.  I guess, though, that getting this taken care of before deciding whether or not to get pregnant would be a good idea.

 I don't know--I think the fact of being high-risk confirmed with a BRCA test would deter me from having children.  

Rachel_BC

I had no idea I would get breast cancer - as 90% of breast cancer patients, I have no risk factors save for an early period.  I STARTED trying at age 45, because of bad advice from my OB GYN, he said I didn't have to start worrying until I got to age 45... ok so that ship had sailed.

The guilt I feel at having this disease as an older single mother by choice is bad enough - my first thought was that I had picked great people in my Will to care for him if I died.  But this is not why I had a child- to give him to others to raise.

The separation we suffered during my treatment was horrible- and I had it easy: no chemo, just lumpectomy and RADS.  If I had had to do 6 months of chemo and not be able to care for him myself for that long, from the age of 1 to 1.5 years at least, I'd have missed half his life, and I already missed seeing his first steps- I was at radiation, the nanny told me about it. Still, I could not pick him up sometimes when he was crying, I was not at all the mother I was before.  I will be taking Tamoxifen and Zometa for the next five years and I worry about if I have mood swings- I don't want to subject him to that!

When you become a mother you start thinking of the kid's needs first- even though having children is a selfish thing to do.  

My view is that since you know you are high risk, you will do your children a favor by not using your genes.  Why would they need to worry like you do? You will also do them a favor if you can use a surrogate, because you have to take hormones to carry the donor egg. YOU are important to your child!

The best thing was part of the process, they make you go through a psychological interview before you do IVF, and the shrink assigned for me is the co-chair of the American Fertility Association, Patricia Mendell.  She was an amazing help in every step of this process, and when I got breast cancer I called upon her again, and discovered she had a background in cancer counseling.

Patricia finally has her own web site: PatriciaMendell.com

I'd also consider getting a second opinion, this idea of not having mammograms because your breast are so fibrous sounds ...odd.  But then, you already have a breast surgeon at 31... my friend is 42 and she started having excisional biopsies since she was 17, and again at 31.  Now at 42 she's got DCIS and 2 beautiful girls aged 6 and 9.  Even though she herself is a surgeon, she is pretty much going crazy over the whole thing.  It's been a month since her dx and she can't decide between mastectomy or lumpectomy.

I am sorry to say the story from your genetic counselor sounds pretty odd too.  My genetic testing was done at Cornell Weill by Dr. Peter Pressman.  I didn't need anyone else's blood sample, only my own.

The part with your husband pressuring  you to use your own eggs is a really tough area.  Makes me happy I am single- sorry!  It sounds overall like what you need is fertility counseling like Patricia does, and for both you and your husband.

One wonderful thing is that you and your husband are thinking and caring about how you start your family!  You are going to be great parents.

Good luck! 

ElaineD

Kibbles, I think your statement , that IF you were positive it would deter you from getting pregnant, is very sad indeed. This is really allwing the fear of cancer to dominate and ruin your life. Let's assume, "worst case scenario". You discover that your do have a gene misprint-despite being regularly reassured that this is extremely unlikely. You fall pregnant in the next year- and you have 30 years beyond that before any gene misprint in you children becomes a major concern-if indeed they inherit the misprint-and of course, even if you have it, there's a 50% chance that they won't. There is a huge amount of progress being made at present in the genetic field, and it's not unrealistic to hope that gene defects such as this will be isolated and dealt with in the not too distant future. You can't possibly factor in every single risk in your life to this type of decision. In fact, as your husband is "pressuring " you, I find myself wondering if you are actually wanting to have a family?

I agree completely with roseg-there's a fine line between being watchful,and allowing the possibilty of an illness to sway your decisions. For the meantime, pursue the testing, if you feel it would help, but perhaps delay any firm decisions until much further down the track.

kibbles

Thanks for your responses.  Why is allowing the fear of cancer to dominate your life so bad?  I know most people probably aren't like this, but I grew up in a family riddled with cancer, where I was constantly reminded how so many of my relatives had/were getting treated for cancer.  Growing up like this where there was a constant worry that even as a child that I would get a serious illness like cancer was difficult, and this worry has persisted into my adult life.  As a child (and even as an adult) my parents are always talking about how they will end up with cancer and don't have many years left.  My father did indeed get cancer but it was caught early and cured.  As a result, I have a huge fear of getting cancer.  It is dominating my life.  And it would deter me from getting pregnant.  I don't know, maybe I should see a therapist about this?  My recent run-in with finding a breast lump/having it surgically removed didn't help this anxiety problem. 

ElaineD

Having a  fear of cancer, is normal, but when it dominates your life, then really it may be worth getting some psychological counselling. Placing such stress upon yourself in itself is not good for you. I'm not sure that I believe that stress causes cancer-but if it is a contributory factor, by dwelling on it to this extent, you are potentially causing yourself more harm than a genetic misprint could do. So please try to look for additional help to deal with these fears.

Incidentally, I too grew up watching most of my close family die of cancer-and I was diagnosed with BRCA2 several years ago. But in all that time I categorically refused (and still do) to allow cancer to dominate my life. I now have metastatic spread to pleura, liver and bones, so there will be no miracle cure for me-despite doing everything I could to minimise the risk, I still find myself in this situation.So there is no straightforward answer-but your well being and happiness is paramount-and to find some strategies for coping-either acceptance if you do discover you have a genetic misprint-or confidence not to "expect" to get cancer at some stage in your life-would both be beneficial to you. Good luck!

Rachel_BC

Kibbles- follow your heart!  Talk to a counselor!  If you don't know one, Patricia can recommend one to you in your area, or use the AFA web site.  None of our opinions matter as much as yours, no one else is raising your kid or living your life.  It doesn't sound to me like you are living your life in fear.  Anyone who has been through BRCA testing knows the counselors leave the decision up to you regardless of the results. I think your concerns are reasonable and well-founded, I know these other posters feel strongly about "living in fear", and that's what you would be if you mindlessly went ahead to have a baby with these concerns.

There's a 10 year old kid with Breast Cancer on this board- she's been on GMA her web site is ourlittlesweetpea.com/ 

one of our mommies in my mommy group has a 5 year old with brain cancer, she started an organization called cookies for kids cancer

another mommy in our group (this is NOT a cancer group, its just a mommy group in NYC) has a 5 year old looking for bone marrow for his cancer- see article in yesterday's NY Post 

It's not only your possible breast cancer that is at stake.   

Ignoring valid concerns is not bravery, attending to concerns is not living in fear.  If taking preventative measures for your child and your family's safety - and  your own was "living in fear" then no one would do chemo or radiation or hormone therapy- that's "adjuvant" therapy (except in a small group of breast cancer patients)- it's given to people who had their cancer removed to prevent it's return. Is that "living in fear"?  

I was going to make this thread a favorite, but now that I see these women are pushing you so hard, I don't want to make this into some sort of argument.  You know what they say about asking for opinions...

It's time to take this to professionals- too many people here (including me) have axes to grind of their own. 

CorasMama

I'm also high-risk. I haven't had the BRCA test, but my mother was diagnosed at 53, already stage IV. They said they thought her tumor had been growing for about 20 years by then, and I'm in my mid-thirties -- eek! Her tumors never showed up on her mammograms, because like you, and like me, she had very dense, fibrous breasts. So yes, I have heard the recommendation not to have mammograms. Since I had a benign lump last fall (showed up only on u/s and mri) removed, my doc schedules me for ultrasounds with my mammograms automatically, and is considering alternating u/s and mri (my scans are going to be every 6 months.) The only reason I'm getting the boobie origami, er, I mean, mammograms, is that the insurance won't pay for an u/s or mri without a mammogram that has a "gee, we can't see shit in here" result, which, of course, will happen every time. It's a ridiculous waste of the insurance's money, but whatever.



In regards to pregnancy. I'm going to be trying to conceive our second of hopefully 3 children as soon as I get my next set of scans (soon), assuming they give me the clear. Because we want 2 more children, and I am unwilling to get a prophylactic mastectomy and oophorectomy, we are waiting to get the genetic test until after child #3. I see no reason to have that hanging over my head for years, when I'm not ready to do anything about it. Also, my understanding is that the BRCA-related cancers are unlikely to show up until after 40, anyway, and that's about when I'll have my last child, hopefully. My hope is that they will have something better to offer by then, than prophylactic mastectomy and oophorectomy. But if that's still what they recommend, then I'll get my oophorectomy after the last baby is 6-12 months old (so as to hopefully not interfere with breastfeeding), and mastectomy after the last child weans him/herself.



I am not as concerned about passing on potentially bad genes as others are. If you look at the state of breast cancer treatment now vs 20 or 35 years ago, and consider how much is even now being done in regards to bc prevention and treatment, I am hopeful. And everyone has bad stuff they COULD pass on, but they usually just don't know it. I'm glad my mom had me, even if she did possibly pass on this risk.



Good luck, and do what's right for YOU, not me or anyone else.

phoenixsmom

You know what?  I am soooo  glad I had my son!  I'm 31 now and he is 2 but I'll tell you, he is the reason I'm fighting this cancer sooo hard!  I had no idea of how high risk I was until I found out I had cancer this year, and its a good thing, or I wouldn't have the greatest reason in the world to live.  I pray to God that I don't have to leave my son for a long time, but I am so happy to have him in my life.

I now see a naturopath as well as doing conventional treatment, but if I was aware of the risk like you are, I would have seen one BEFORE I got pregnant to see what I could take to keep me strong and help ward off the cancer so it would never have a chance.  Mine showed up a few months after I finished breastfeeding.

 Good luck in your decision, but remember, we could all die in a car accident any time of any day too.  You just never know.  You can't stop living just in case because there's always a just in case.

ElaineD

Great replies Cora and Phonix's Mums! We simply can't factor every possible risk into our decision making-sometimes we have to take chances. Those of us parents with genetic misprints wouldn't be without our children, and the thought of not having had them saddens me beyond belief.