Breast Cancer risks/ screening while BF-anyone?

[westchicagomom]

Unfortunately my family's joy at the birth of my DD turned to sorrow w/ the diagnosis of my 32 year old sister's breast cancer just one year after the birth of her DD.

The announcement came the day I was headed for my 6 week PP check. When I told my OB, his whole demeanor changed and he scared me into thinking I would need to truncate my 6 month BF goal. Fortunately he sent me to a specialist who said that was unnecessary as the chances of my getting it w/in the next 5 years are very small. They wouldn't even do a manual exam since I was BF.

Well we are going on almost 10 months and while I have been trying to wean DD since 6 months, she is very much a comfort nurser. Her main caloric intake is formula w/ a small % being BM - particularly during the middle of the night.

I guess I have a few items that I am hoping someone can address:

1. Has anyone been screened for BC while BF? I know LLL says mammograms are possible, but has anyone actually done this? Incidentally from what I understand in premenopausal women, mammograms are not effective diagnostic tools. My sister had a 1 inch square tumor that was shown to be nothing on the mmg - the ultrasound was what clearly showed it. If anyone is in the Chicago area and has a doctor reference that would be great too as this specialist wasn't planning on doing an u/s and didn't want to see me until 2 months post BF.

2. Her oncologist said that having a first baby after 30 can be a trigger. I did some research and unfortunately that hypothesis seems to have some merit based on the number of pre-menopausal women getting BC (it has to do w/ mature vs immature breast cells being hit w/ a lot of estrogen). We have NO history of BC in our family - however everyone to this point has had a first baby before 30 (except me (35) and my sister). Has anyone done any extensive research on this topic?

3. I know BF supposedly provides some BC prevention benefits, but from what I understand you must BF for more than a year and the benefits have to do w/ number of AF's you have over your lifetime. Well AF returned 3 mos PP so are my benefits limited at this point? It seems like there has to be more to it (my sister BF for 3 or 4 months).

This is all just so scary. My sister's tumor, as big as it was, had only been growing for 2 months and had already spread to two lymph nodes - it was that aggressive (do your monthly checks!). And even beyond the screening - it affects my thoughts about having another child too. I have heard so many stories recently about women in their 30's getting BC not long after having their first baby - one even while BF.

Anyway - thanks to anyone who can provide some insight/information.

[Melanie]

I've had manual exams done but was told a mammogram would be useless as it would just all show up white (by a GP, or OB/GYN I think...can't recall).

I'm so sorry about your sister and I applaud you for doing your own research and not weaning early based upon one man's opinion.

[sntm]

I'll try and research this some more for you. I don't know where you are, but there is a newer imaging modality that is fabulous but more expensive, so not feasible for screening of everyone but might be in your circumstance. Ask your doctor about a breast MRI. I don't know if there is any research about breast MRI during lactation but I will try this week to find out.

I would also say that any breastfeeding will have a positive influence on BC risk -- it's just that in the studies, at 1 year it is statistically significant (you would otherwise have to come up with a physiologic reason why on your babies first birthday, your breasts change -- it could be different milk production, etc., but that's less likely.) The most commonly accepted explanation is the effects of estrogen, although people have talked about the effects of the different functionality of the ductal cells, and that doesn't change. Also, even with AF back, your estrogen levels may still not be what they would have been if not BFing.

I'll try to look this up this week. PM me if I don't post back (busy week at work, as always!)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[missym]

Hi Pam,

I'm so sorry your sister and your family are going through this. You might want to consider joining an online support group. These often include healthcare professionals, cancer survivors, current patients, and their families. An online group can be a tremendous resource for information and support.

Here are 2 you might want to check out:

http://listserv.acor.org/archives/brca.html - Breast Cancer Electronic Support Group

http://listserv.acor.org/archives/breast-onc.html - Current Advances in Breast Cancer Treatments

Also, this web site seems to be a good compilation of information:
http://www.breastcancer.org/

Missy, mom to Gwen 03/03

[COElizabeth]

I am so sorry to hear about your sister! I hope that her treatment goes well.

I have had a manual breast exam while nursing. I was also told that mammograms are useless while lactating (and for about 6 months after weaning) because the presence of milk in the ducts makes looking for a tumor like looking for a "snowflake in a snowstorm." I look forward to hearing from Shannon about whether the MRI or ultrasound is an effective screening tool while lactating.

Elizabeth, Mom to James, 9-20-02
EDD #2, 10-30-04

[sntm]

Pam, I emailed one of my favorite attendings (a breast surgeon) and will also contact a radiology resident I know well.

FWIW, a mammogram at age 35 even in a non-lactating woman is not all that great, but I will see what they say about the other imaging.

One thought I had too was if your sister had had any genetic testing. The fact that you have no other family members with BC suggests that this was either a random mutation or more of a polygenetic source, but if she tested postive for one of the known genes (BRCA1 and BRCA2 are the main ones, there are some other syndromes as well where you also see family members with colon cancer, ovarian cancer) then you could also be tested and if negative, that might put your mind at ease.

I think you definitely could still have a manual exam, particularly if you nursed or pumped right before the exam. I'd call around and see if you can find someone who has seen a breastfeeding woman before. I can post for info on Lactnet also, if you would like.

One other thing, don't let it worry you about having another child. The fact that people are getting diagnosed soon after having a baby or BFing is just because they are at an age when a lot of people are having babies or breastfeeding. It's just a coincidence of timing.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[celfsh]

Pam,

So sorry to hear about your sister--how scary! I'm not sure how much I can help with your specific questions, but I did want you to know that you are not alone. My sister was diagnosed with breast cancer about 5 years ago at the age of 31. For what it's worth, she had already had 4 children by then, so in her case the cancer had nothing to do with giving birth after age 30. I think it was Shannon who mentioned genetic testing. Coincidentally, my sister is having that done this week. Her results will determine whether or not the rest of us (there are 6 sisters total) will undergo the testing as well. As far as getting screened while BF, I don't know a whole lot about that, but I will say that I was told that using ultrasound for a pre-meno woman is standard due to the breast tissue being too dense for a mammogram to be an effective screening tool. I've had the ultrasound done (about 9 months post BF) and it is no big deal, although I will say it is a lot less fun than the ultrasounds I had done while expecting DD! :)

My thoughts and prayers are with you and your sister. Please know that it can be beaten! My sis has been in remission for 5 years and has gone on to have another child since she was diagnosed. Also, my mom was diagnosed with breast cancer just a couple of months ago and is expected to make a full recovery.

Take care and please keep us updated!

celeste
mom to olivia (09/02)

[Sarah1]

Pam,

That is SO scary. I don't have any advice, but my mom was diagnosed w/pre-menopausal BC when she was in her early 40s (she had my sister and me in her early twenties, and never nursed, btw). Although her cancer was also really aggressive (had spread into her lymph nodes), she has been cancer-free for 10+ years now and is doing better than ever.

Your post was kind of a wake-up call to me, though, that I'm in my thirties (I'll be 33 in Sept.) and I should probably be more vigilant about my self-exams, and since I have a family history (my great-grandmother also had BC), I should probably see a doctor about it.

Please keep us posted on everything, and again, I am so sorry about your sister, and I hope things go as well as possible with her treatment and recovery.

[barbarhow]

Pam-so sorry for what your sister is going through. She is way too young to be dealing with this. Not that any age is a good time, but it must be very hard to be so young with BC.
I have a strong family history of breast CA and went to my PCP last fall armed with many questions as I was bfing and wasn't ready to stop. I have been and remain concerned that it has been more than 2 years since my last mammo and is will likely be another 2 years before my next. I am still bfing-DS is 15 months and we are going to start TTC next month. My PCP spoke with the director of Oncology who felt that even given the family history my chances of developing BC in that time period were very small. I haven't wanted to wean. so I am saying my prayers that everything will work out fine.
Good luck to you.
I, too, am looking forward to your info Shannon. Thanks.
Barbara-mom to Jack 3/27/03

[westchicagomom]

Thanks so much for taking an interest in this Shannon. I tried to do research when we found out, but w/o having access to on-line med journals (which as a science teacher I can sometimes understand) the info out there is pretty superficial.

The specialist I went to handed me a pamphlet regarding breast MRI's and said this is the best tech for diagnostics but they said it wasn't available yet. I am not sure what they wanted me to do w/ that info????

My sister was going to have genetic testing done to see if her DD was going to predisposed but I don't think she has done that yet. They did test the tumor for a few things. Her estrogen receptor test was right on the borderline so they wouldn't say w/ certainty whether it could have been pregnancy induced.

When I told my OB he actually did a manual (when I was full of milk - ouch!), but I don't understand why the specialist wouldn't touch me (other than doing an u/s on part of my breast because I had mastitis and they wanted to make sure it hadn't abscessed).

Thanks again for any info you can provide.

[westchicagomom]

Missy - thanks so much for those links. This was particularly hard on my parents - I will pass them along too.

[westchicagomom]

This specialist is part of a very well-known breast cancer center and I don't understand why they don't just automatically do ultrasounds. It sounds like mmg's could just give pre-menopausal women a false sense of security.

I am so sorry that your family has to go through this also. I am sure the genetic testing will be nervewracking too. Fortunately I guess there are drugs you can take if you are shown to be genetically predisposed.

I know my sister wants to have another child. Did your sister have to go thru chemo? I know she is worried about whether her eggs were affected. I also know a women who was told that her pregnancy induced her cancer and was seriously weighing whether to take the risk of becoming pregnant again.

I am so glad it all worked out for your sister - it definitely gives me hope.

[westchicagomom]

My sister actually has been through a mastectomy, 3 painful rounds of chemo (they couldn't get her drugs adjusted right to manage the side effects) and 30 days of radiation. She finished her treatment in late June and fortunately now has a lower risk of getting BC (6%) than I and the rest of the female population does. They were dark days though - as fate would have it, her husband lost his job the day after she was diagnosed. Since then he has found a better job and they have only hopefully sunny, cancer-free days ahead of them.

Ironically she does cancer research and I know that she survived this in order to find a cure for this awful disease.

I have been mulling these things over for 9 months now and I should have posted earlier as I feel much better after hearing what you all have had to say.

Thanks so much for taking the time to share.

[sntm]

Here's the response from my fave breast surgeon:

That's certainly a frightening situation to find oneself in. Not much is known on the efficacy of either U/S or MRI in lactation. Some sonos look pretty good, others look like a snowstorm. MRI is still not a screening tool in general and should be used judiciously in women who are legitimately high risk as an adjunct to mammography and sono. Mammography can be used quite well if the baby is > 8 months or so - milk production starts to decline as solid food intake increases. She should be advised to nurse/pump both sides prior to mammography. This may be the best screening tool to start with. A screening strategy for her overall should also be constructed in light of the rest of her family history. The early age of onset of her sister is reason alone to consider genetic counseling for the family, if interested, but there may be additional details which make the argument for counseling +/- testing stronger and may help stratify her risk better. Regardless, we would recommend that she start screening now at 35 rather than waiting to 40 given this unfortunate development in her sister.

So, sounds like you should be able to get a mammogram and an exam if you pump/nurse right before, especially as you are only nursing at night. And see a genetic counselor, even if your sister hasn't gotten tested yet. The estrogen receptor positivity would not have told you whether it was a cancer syndrome or not.

By the way, I appreciate everyone who shared their stories about relatives with breast cancer. I know it was more for the OP, but it meant a lot to me to read them. I've been considering breast surgery as a specialty lately (there are some drawbacks to it (little respect from other surgeons, less money, surgeries aren't technically exciting), though the lifestyle is much more suitable to seeing Jack than the other things I was considering) and reading the posts emphasized to me how important it is to the women affected. Thanks.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[COElizabeth]

Thank you for posting this, Shannon! Very helpful! And I think you would be a marvelous breast surgeon!

Pam, I am glad your sister is doing well and hope that things are only looking up for her and her DH now.

Elizabeth, Mom to James, 9-20-02
EDD #2, 10-30-04

[MinnieMouse]

My mom was diagnosed w/ breast cancer at 39yo. She actually discovered the lump herself, had a radical masectomy and then it metastized in less than a year. Mom battled for 10 years and had most of the treatments at one time or another (2 different rounds of chemo, radiation multiple times and 5+ years on Tamoxifin). This was a LONG time ago (diagnosed in 1981, passed away in 1992) so the treatments are different now.

Mom was the ONLY one in her family to have breast cancer so genetically it isn't thought that my sister and I are at risk. We are both VERY proactive about it though. Both of us had lumps removed (both benign) before we were 25yo and we also have had fairly regular mammograms/ultrasounds from before 25yo.

Sis and I are both in our mid 30's now, just scant years away from the age Mom was when she was diagnosed and to be honest it scares the HELL out of me (can I say that here?). When I was pregnant w/ Bethany I found a lump, a fairly large one compared to my others (I have mild fibrocystic breast disease). I FREAKED. I discovered it at about the 3rd or 4th month and the midwife wanted to monitor it a bit so by the 6th month it hadn't gone away or reduced in size so they sent me to the breast surgeon. (The wait was because there are so many changes w/ the breast during pregnancy they wanted to make sure it was really a lump.)

The breast surgeon was really great. She felt it right away (I have a history of finding radiologists that are morons and can't feel the lumps...the one I had removed ...2.5cm one...the radiologist told me DESPITE my family history he couldn't find anything and not to come back for 10yrs...I almost hit him!) and sent me downstairs to the radiology dept in the hospital for an ultrasound of the area. The clerks there kept telling me I had to have a mammogram...despite my 6+month pregnant belly! The technician was awesome and told me straight out that it was just breast tissue, took lots of pictures and sent me back up to the surgeon who concurred w/ the technician.

The surgeon told me that I should come back and get another mammogram AFTER I was done nursing. Since I've been actively nursing Beth for over 2yrs I haven't gone back, which I should have done. This is going to spur me to make my appt today, so thank you.

I KNOW how scary this all is. If nothing else I would find a really great breast surgeon and get an appt. They can really do an exam and recommend an ultrasound if necessary...or a mammogram if they think it would be helpful. To be honest, I started having scans so young that they always automatically gave me an ultrasound each time I had a mammogram. I really feel a lot more secure going to my breast surgeon for my breast checks, even though my OB and now my midwives are great (and very supportive of going to the surgeon BTW).

Hugs to you and know that there are others here to talk to if you need to.

Christine

[westchicagomom]

Christine, thanks for posting your experience. I really liked the specialist I was sent to (well the surgeon was just okay - the PA and everyone else that worked in that office was wonderful) so hopefully my new insurance will cover a visit and they will be willing to allay my fears w/ an u/s.

You are really smart to be so proactive - the one benefit from my sister's experience is that me and hopefully my younger sister (although she isn't worried at all) will be able to catch the cancer much sooner if it occurs. Since we had no family history I was definitely not dilligent about monthly checks. Interestingly in the limited research I did, I kept seeing that almost 75-85% off diagnosed BC's were in women that had no family history. That seems bizarre to me since so big a deal is made of genetics.

Thanks again and I may be p/m ing you!

[westchicagomom]

I am completely stunned and feel a bit irresponsible that I let this happen under the circumstances (although the odds of this happening are *really* and I mean *really* slim IYKWIM) Obviously predicting ovulation while BF is not an exact science even though AF has been back for 6 months!

It is about as early in a pg as you can diagnose and I have had a m/c before so I am in quite a bizarre state of mind at the moment. PG while nursing was never the plan either. I believe things happen for a reason, so there must be one....

Shannon -
It frightens me a bit that your surgeon thinks this is a frightening situation although I may be taking his comment the wrong way. I will definitely have to figure out what to do now - I didn't really like or trust my ob so maybe this is an opportunity to find one that will be better under the circumstances.

And I read a lot of your posts so I feel I know you a bit - I too think you will make a wonderful surgeon. The surgeon I went to had surrounded himself w/ wonderful people and created an atmosphere that was unbelievably caring and reassuring. I hope you are able to do the same.

[Puddy73]

Pam, I'm so sorry that your sister is going through this. I had a mammogram when DD was six weeks old because I had very bad mastitis that did not respond to two courses of antibiotics and my doctor wanted to rule out inflamatory breast cancer. You are a great sister for doing all this research. When my doctor mentioned the possibility of cancer, I was too upset and freaked out to even do any research. I got the mammogram two days later and met with two breast specialists. They both said that a mammogram can be a useful even for lactating women. I fed DD before the mammogram, but the pressure was still somewhat painful.

I hope that your sister's treatment goes well.

Jennifer
Mommy to Annabelle Mae 9/8/03

"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

[missym]

I know this has to be an emotional rollercoaster for you, but I just wanted to say congratulations! I also believe everything happens for a reason. Maybe this will convince a doctor to give you an u/s screening instead of the traditional mammogram? Anyway, good luck with everything!

Missy, mom to Gwen 03/03

[sntm]

Pam, don't worry! I'm PMing you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
shannon
not-even-pregnant-yet-overachiever
trying-to-conceive :)
PREGNANT! EDD 6/9/03
mama to Jack 6/6/03

[pritchettzoo]

Wow--congratulations! I have nothing useful to add; I just wanted to let you know I'd be thinking about you. Good luck.

Anna

[Sarah1]

I agree with Elizabeth--Shannon, I think you would be a fantastic breast surgeon!!!!!! Thank you so much for posting that info.

[pixelprincess]

Pam, I am sorry about your sister and what she has gone through. I can imagine it must be difficult for all of you.

I wanted to share a story of one of my friend had breast cancer in her early 30's that recently had her baby. She had a hard time conceiving after her cancer was in remission and turned to invitro. She did several unsuccessful cycles and finally got pg through a donor cycle (her sister) and gave birth to her beautiful baby recently. She has also been BF-ing the baby and it has been quite an amazing journey for her. She is has been a source of inspiration with her courage and positive attitude.

wishing you and your family the best,