Concerned about my children, any advice would be appreciated!

poeticrevolver · July 2010

Hello, I have been dx with IDC. Lumpectomy and SNB and dissection on July 20th.

I am very concerned about my kids. I have two daughters, 12 and 14, and my youngest, my son, is 9. I am, as far as we know, the first person in my family to have bc.

My daughters are very physically mature for their age. I feel like maybe I should demand that they be tested, and soon. I was 27 when my mammo was first abn. Was'nt dx util just recently. I went through hell just getting my dx. The docs all said that I was too young, and had no family hx. Actually blamed it on anxiety.

After me demanding a breast MRI and biopsy, we found the cancer.

I just worry about my kids.

Any advice on when they should be checked?

I know that today my mammo looks normal, I never even felt a lump.

So, when should I have my children tested??

Oh, fyi, I tested negative on the BRCA testing.

Thanks!

Isla · July 2010

Firstly I want to say that I do understand your concern. However, and this is just my personal opinion I do not think that your daughters should even consider getting tested until their 20's. Looking at the facts i) you are BRCA negative ii) you have no family history. Therefore statistically your daughters have no more likelihood of getting breast cancer than any other member of the population., that is at 20yrs a 1 in 2152 change of developing it OVER THE NEXT 10 YEARS (not of having it age 20) Per 100,000 women per year ZERO % were diagnosed with breast cancer UNDER the age of 20 yrs ( SEER statistics between 2003-2007) In Dr Susan Love's Breast book she writes that the youngest patient she ever diagnosed was 23 (with a BRCA + history)

I think that to have your daughters tested at 12 and 14, even assuming you could find a facility to do it, would be very detrimental to their psychological and emotional state. They could start to 'assume' that they too, like their Mum had breast cancer. I think this is especially relevant as they are about to witness you go through your surgery (and associated systemic therapies)

I am not dismissing your concern but I believe that, at this stage you should concentrate on yourself and your treatment and think positively about the many many years you'll be a BC survivor to enjoy your lovely family

Colette37 · July 2010

Being diagnosed with BC is one of the most scary things that a person may ever have to go through.

The Pacific NW has increased risk of BC, and BC has started happening to younger and younger women. They know that for a fact. There was a 10 year old who was diagnosed with BC BEFORE puberty! My guess it is all the 'stuff' that they keep putting in our foods and atmosphere...all of the estrogen mimicking cr*p that makes our hormones go wacko.

The point of where Dr. want to start seeing and doing testing of children of women who have breast cancer is 10 years prior to the mother's diagnosis. This sounds disheartening, but there are many things that you can do to help with their breast health.

1. Make sure they are on a low fat..high fresh fruits and vegetable diet.

2. Check out the Vitamin D..it is an amazing vitamin that helps SO much..it helps many different kind of cancers..not just for strong bones.

3. Help them enjoy being active.

4. Decrease High Fructose Corn Syrup and MSG...They are food additives that make your body go out of whack or makes your body think you are still hungry when you are not.

5. Don't use the microwave because it changes the food protein...the words "You are what you eat" are so very true.

Little bit of info about Vit. D from the "alternative, complementary and holistic treatment" board:

http://www.grassrootshealth.net/media/download/garland_vit_d_cancer_prev.pdf

http://www.oncologystat.com/journals/review_articles/AEP/Vitamin_D_for_Cancer_Prevention_Global_Perspective.html

http://ajph.aphapublications.org/cgi/content/full/96/2/252

http://www.vitamindcouncil.org/research.shtml

http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

http://www.vitamindcouncil.org/vitaminDToxicity.shtml

http://www.vitamindcouncil.org/vdds.shtml

http://www.vitamindcouncil.org/treatment.shtml

http://www.vitamindcouncil.org/news.shtml

Arne-N-Gjorgov · July 2010

To Breast Cancer Organization

Reply to poeticrevolver post

Ardmore, Pa.

July 15, 2010

Dear Madam:

Re: "Topic: Concerned about my children, any advice would be appreciated. Forum: High Risk Women." Breastcancer.org, July 15, 2010. Reply with three relevant to the inquiry references

I feel moved by the sincere concern of the poeticrevolver mother who asked for help as to how to protect her teenage daughters from breast cancer suffering.

By this token, please look at three most recent studies of mine on the subject matter:

♦ Reproductive Health of Women: An Attempt to Define Breast Cancer Prevention. Macedonian Journal of Medical Sciences, 2010; Jun.15, 3(2): 169-179

http://www.mjms.ukim.edu.mk/Online/MJMS_2010_3_2/MJMS.1857-5773.2010-0104v.pdf

♦ Breast cancer risk assessment to barrier contraception exposure. New Approach.

Contributions, Sec. Biol. Med. Sci. MASA 2009; XXX (1): 217-232

Web: http://e20.manu.edu.mk/prilozi/16ag.pdf

♦ Anorexia and Bulimia Nervosa in Young Female Patients and Barrier Contraception Practice

ASKLEPIOS - International Annual of History and Philosophy of Medicine (Sofia) 2009; Vol. 3 New series (XXII old series): 97-108. (The publication is not available in digital format; the full study, with tables would be available from the author.)

With Best Wishes, I appreciate the opportunity to be able to try to be of assistance.

Sincerely yours,

Arne N. Gjorgov, M.D., Ph.D. (UNC-SPH, Epidemiology, Chapel Hill, NC)

Author of "Barrier Contraception and Breast Cancer," 1980: x+164 (Research carried out at the Univ of Pennsylvania School of Medicine and Hospital, Philadelphia, PA, in the mid-1970s.)

E-mail: arne.gjorgov@yahoo.com

Isla · July 2010

Actually poetirevolver in her first post did not "asked for help as to how to protect her teenage daughters from breast cancer suffering" She specifically asked 'when they should be checked?'

My reply addressed that question and I stand by it - I do not think that, with the OP undergoing treatment for her breast cancer it is psychologically wise for her daughters to be tested at this time.

The question of what, if any, lifestyle / diet changes poetirevolver wishes to introduce into their lives in order to possibly reduce the liklihood of breast cancer is a different matter.

Colette, I am intrigued by the <<span style="font-family: Arial, Helvetica, sans-serif; line-height: 18px; font-size: 15px; border-collapse: collapse" class="Apple-style-span">10 year old who was diagnosed with BC BEFORE puberty> can you please provide a link to the source of that report? - thanks

Anonymous · July 2010

Isla - the 10 year old that was diagnosed last year is named Hannah, and she lives in So. Calif. If you do a search on "10 year old with BC" you will find plenty of coverage. I initially saw her parents post on here, as they were SHOCKED that this was happening....eventually it was on the today show, Katie Couric National News, and even our local news picked it up. I believe she had triple negative BC and yes, was pre-puberty. You can also search on here - there was a couple of threads on this - one started by her father, and one by another member. I know she had surgery, chemo and I believe is doing well!

Poeticrevolver - your question is a good one. Good that you tested negative for the BRAC gene - although we all know there are most likely other genetic markers that haven't been identified yet. I, have a 13 year old daughter - and I had my first abnormal mammogram at 44 when diagnosed. I will encourage my daughter to start checking in her early thirties at the latest. I also agree that right now with your diagnosis I would not get your girls to over focus on what this means to each of them. Like Isla wrote, most women I know with BC have no family history - and that included me. I made sure my daughter knew that I am the only woman in our family (of MANY women) to get BC so most likely it is not hereditary AND in my case early detection found it.

I agree with much of what Collette wrote - vitamin D is a big issue for increase in cancer, breast cancer and other health issues (I too live in the Pacific NW). I was deficient and my entire family now supplements. We already did organic milk, meat and most of our veggies, so that didn't really help us out. I also have avoided foods with corn syrup - and still do for the whole family.

My sincere hope is that we will find a CURE for this in our lifetimes - and that will protect our kids. I think that we will find more tests like the oncotype, and BRAC to pinpoint and treat each of our cases as individually as possible. My oncologist told me that breast cancer is really like 6-8 completely difference diseases.

I'm sorry you went thru hell getting diagnosed, and hope that you are doing okay with your treatment plan.

Kristian · July 2010

Hello poeticrevolver,

I, like you am going through the same concerns right now about my daughter. She is only 3 years old, but I was diagnosed with breast cancer at the age of 38, and I have a history on my father's side. Also my husband's family has a history of breast cancer. I have been tested for BRAC1 and 2 and was not positive, but in the "gray" area where there is a mutation, but they cannot link it to cancer. My husband's sisters have been given the opportunity to be tested, but they have not, so for all I know, my husband could even be carrying the gene.

I recently had a recurrence of my cancer, and the stress I have been through has been significant. I do not want my daughter to have that stress in her life, and it makes me sick to think it is a possibility. Catching early is so important, but I do not want her to go through what I have been through in the last couple of years.

In answer to your question, I am no expert by any means, but I have heard that if your mother has had breast cancer, you can be tested 10 years before your mother's age when she was diagnosed. So for my daughter it will be 28. I have also heard that it is very difficult to see anything through imaging before the age of 40 because the younger you are the more dense your breast tissue is, it becomes more "fatty" as you age. That being said, who knows what technology will bring over the next 10 years.

I don't have an opinion as to what you should do with your daughters, except to seek medical advise, get as much info as you need to make an informed decision, and base it on what you think is best for you and your daughters. I know that is hard, I have had to make several difficult decisions about my health and I knew nothing about breast cancer until I had the disease, but every individual has their own experience.

Good luck to you. Even though cancer treatment can be difficult at times, the support is unbelievable, and the courage you will have will surprise you. I know that I will fight this all the way, for myself and my family.

Take Care! Smile

bebe51 · July 2010

I, too agree with Isla. My mother was dx with bc in 1978 and she was the first that we knew of. Until we researched further and deeper to find my great-grandmother's sister had bc. Seems it was from my grandfathers side. Not everything comes from the woman's side. My mom was 38 when dx. Of course, back then we didn't have BRCA testing. Remember, this is just my story and how I dealt with things. When it happen to my mother it put me in a tail spin. It put me and my sister at a higher risk. I was 20 when mom was dx and my sister was 17. We were told that at age 30 we needed a baseline mammogram and then at 40, it would be once a yr. One by one my mom's sister's were being dx with bc, some with the BRCA2 gene, mom being one of them and one negative for the gene. I am 52 (9 yrs older than my mom at dx) and was just recently dx with ADH. Bottom line for your girls, don't stress them out, I was 20 and was stressed, I can't imagine being 12 and 14. They will have questions and will need to talk about it I'm sure, but having them tested would only add to their stress. I don't feel that at 12 and 14 they need to be tested. Just my opinion though. Take care!

bebe51 · July 2010

oops, got my mom's age wrong at dx. She was 43. Now the numbers work. Embarassed

Annabella58 · July 2010

Hi, I can understand your concerns, I was very early period (9) and still not in menopause at 53 when I had my ovaries out. I had my daughter late (30) and she got her period at 11.

She was 12 when I had cancer the first time. Since the breasts are so very dense, I would not put your daughters thru a mammogram, as they cannot see anything nor do I believe any doctor would let you have a script for that. I would wait and when they are older, encourage them to get mammograms when they feel the need to. But I was told that no one, unless they have a mom or a strong family cancer history (we did not, I am the first I know of), needs one until at least 30.

Since I was 35, I am leaving it up to my daughter to get one when she feels she should. If she wanted to start at 28 or so, well, that is her choice. Earlier, if she wants to, and someone will give her a script.

I certainly wouldn't subject your young girls to anything of the sort. They are unable to test for BRAC gene until they are 25 anyway. That's just my opinion, but good luck. My hope is that in the next five or ten years, there will be a better answer for our daughters. I know mine is already scared, and she is only 21.

I would share with them that there are things they can do for now to keep them healthy.....when they develop breasts, they can self check them. They can eat healthfully with lots of fruits and veggies. They can omit alcohol. They can not smoke. They can stay away from the pill as contraception. Hopefully these things can empower them to not worry so much.

My heart goes out to you, as mine was the same age....tell them mommy is a Viking warrior and that you are going to win, and that's that. In your own head, tell it just to get the He** out, wrong girl, period.

Good luck!!

Annabella58 · July 2010

...oops from me, I was 45!!

Colette37 · July 2010

annie...where did you see that it was 25 for BRCA testing? I know that my Oncology office have treated women as young as 19! I guess what I don't quite understand is that BRCA is based on a gene and as long as they have hit puberty, then the genes wouldn't have changed. I could see a genetic specialist allow for the girls to have this test if they had been through puberty. I know a Dr. would not pursue anything further than this because they are so young and why possibly damage tissue and subject them to radiation, when unless there is a lump or any other signs, not very useful..and may freak them out.

I do hope your kids are well, but as others did point out is that their chances of having cancer at a young age is very slim.

Katey · October 2010

Poeticrevolver, I'm concerned too for my daughter. I'm brca neg, but am on my second time around. First time, daughter was 2, I was convinced there'd be a cure by now. Now she's 10 years younger than I was at first dx, my bs said it's too early for her mammos (22/23), suggested she see a high risk specialist. I was dx'd last year with a new primary 20 years after first, my sister dx'd 2 months later, my brother dx'd with prostate 2 years ago, so we are thinking there has to be another link besides BRCA. I'm going to search out specialists in her area, and gently encourage her to go. Btw, her gyn told her not to worry since I'm brca neg. Lot of misinformation out there, and as you discovered difficult at times for testing. I would keep the conversation going with your onc, and encourage a healthy lifestyle for your children till they're old enough for any tests.

focusoncures · October 2010

I wish u and daughter the best and think that the cure is coming soon. Please visit us at focusoncures.com and download our breast cancer awareness photo to show your support. We want nothing more but to find the cure!!!

leaf · October 2010

Scientific literature knows there are probably as-yet undiscovered inherited breast cancer genes.

This is from 2005

Between 9,000 and 18,000 new cases of breast cancer per year in the United States are associated with a genetically defined predisposition. Mutations in BRCA1 and 2 account for greater than 60% of inherited breast cancer. Mutations in additional undiscovered high and low penetrance genes may account for the other 40% of inherited breast cancer cases and possibly a subset of familial breast cancer cases that lacks an autosomal-dominant pattern of inheritance. http://www.ncbi.nlm.nih.gov/pubmed/15648188 (emphasis mine)

BRCA 1 and 2 are autosomal dominant, higher penetrance genes. (Penetrance means how many people have the gene mutation and the affected genotype. A high penetrance gene in breast cancer risk means many of the people with the deleterious gene mutation will eventually get breast cancer.) You can have low penetrance genes, where most people with the deleterious gene will NOT get breast cancer. You can have deleterious gene mutations on the X chromosome (such as in some types of hemophilia.) There are different patterns of gene inheritance.

DianaWolfson · October 2010

My docs told me that I shouldn't test my daughter until she was 18 or so. Before that, there's not much we can do.

Laurie08 · October 2010

I have boys and for what it's worth I'll pass on what my doc said. Have their pediatrician check them for abnormalities and by the age of 25 start being checked regularly. They are 10 months and three years old and I hope that by the time they hit their 20's we will have so much more knowledge. I am so sorry for your fears, but they are justified and I pray unfounded. Good luck.

Anonymous · October 2010

I agree maybe when they reach 18 is the best time for them to be checked.

psychologist northern beaches

Beesie · October 2010

blazer is a spammer. All his posts include a link to his counselling service.

Annabella58 · October 2010

My genetic counselor told me that my daughter has to be 25 before they will test her for BRAC.

Annabella58 · October 2010

oops, sorry, yes, young girls can and do get cancer. But they cannot test for BRAC until 25.

Self exams are the line of defense for young girls, my daughter is 21, I am two timer (non BRAC), and they won't even do a mammo on her yet, as young breasts are too dense.

She will get the test she says when she is 25. She is wanting to begin mammos earlier, but they won't give her a script without her being older.

I'm thinking younger woman can get an US tho....I may ask my oncologist about this

eileen1955 · October 2010

Just read the 7-15-10 post on this thread; an "apparently" scholarly response to the initial question posed by poetic revolver. I cannot believe I just wasted ten minutes of my time reading ridiculous research indicating that condom use is a factor in women getting bc. Somehow the author intertwines condom use with parity (# of children) as a causal link on the Gail scale of bc probability.

Two points; condoms prevent world-wide spread of AIDS. Second, "withdrawal" is not a method of barrier contraception. However diaphrams are. The information is incorrect.

I cannot believe someone would use our website to promote some "anti-condom" platform. I am a high school school nurse and encourage kids to maintain resonsibilty for any sexual-activity by using condoms. I hope none of them comes across this ridiculous assertion that condoms would somehow cause bc. Teens would want to believe it!

As for the original question, my 20 yr old is scheduled to have an breast ultrasound d/t an abnormality. The NP on campus assured me that it is most likely a fibroadenoma or a cyst. My bc will see her.

eileen1955 · October 2010

Bump (I've never bumped b/f) I really want that 7-15 post from Macedonia removed so no one thinks condom use is a factor in bc. It's bogus.

Concerned about my children, any advice would be appreciated!

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