BRCA Testing
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Topic: BRCA Testing
Posted By: dragonwing
Subject: BRCA Testing
Date Posted: Feb 23 2009 at 3:02pm
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Hi Everyone! I am still new not only to the TNBC Forum, but new to understanding all that being a TNBC survivor entails. On March 17, I am have the BRCA test done. Now, from what I understand is that this is a blood test that is done to see if I have the genetic whatever that could possibly make my TNBC hereditary. Can someone please explain to me in laymen's terms what this is all about and what results I want to have. Obviously, I am hoping not to pass anything on to my daughter or grandchildren. The main reason I am having this test done is because I am adopted, and I know that my birth mother was also adopted so there is no family medical history and the Wonderful State of Michigan tells me that my family history is none of my business!  Personally, when it comes to medical needs -- I think that should trump any adoption confidentiality, however, obviously Michigan doesn't agree with me. ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Replies:
Posted By: CarynRose
Date Posted: Feb 23 2009 at 3:17pm
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Dear Joyce,
I'm so sorry that you are going through this now. Your and your medical team are smart to check out a genetic mutation. While not all TNBCer's have the BRCA1+ mutation, 85% of BRCA1+'s who get cancer are TN.
The risks can be different from BRCA1 and BRCA2. For instance, BRCA1 risk is around 87% in a lifetime for BC and about 50% for OVCA. It tends to hit earlier in life (premenopausally). BRCA2 tends to hit later in life and also is more likely hormone positive. The odds of a man having BC are higher with BRCA2 than BRCA1.
There is a 50% chance, if you are positive, of passing the mutation on to each of your children.
It's difficult with being adopted, but a certified genetic counselor can tell you a lot about what it means to have the mutation.
I also HIGHLY recommend the FORCE website where you will find HUGE amounts of information about BRCA and other hereditary mutations. http://www.facingourrisk.org - www.facingourrisk.org
I hope that this helps.
Caryn
------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: ChrissieD
Date Posted: Feb 23 2009 at 3:22pm
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Hi Joyce -
The genetic testing test for 2 gene mutations BRCA1 and BRCA2. It is a simple blood test providing you tolerate having blood taken okay. Results take up to 2 weeks to come back. You want to test negative for both which means your tumor was not caused by the BRCA1 or BRCA2 mutation. There are more significant implications if you test positive.
Did you meet with the genetic councelor yet? You want to be sure to do that before they do the test. Mine happened to be the nurse practitioner at the breast center of my hospital. He or she will go over the statistical implications if you were to test positive and possible next steps to consider (i.e., oopherectomy, etc.) She was the one who ordered my test the day I met with the oncologist and radiologist following my surgery and pathology coming back.
Hoping you test negative!
Chrissie
------------- 39 from MA, Mom(8.5 and 6), Lumpectomy IDC 1.5cm Stage I, Grade 3 ACx4 Taxolx4 dose dense started 11/17; Bi-lateral Mastectomy with expanders scheduled for 3/24/09 God is carrying me through ! |
Posted By: Nancy
Date Posted: Feb 23 2009 at 3:24pm
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Joyce,
You are hoping for BRCA1- and BRCA2- without a variance. That means that your cancer is not hereditary/not genetic.
If you have time please go to the FORCE web site. There is a ton of info there as to the BRCA gene mutation. 85% of BRCA1+ are triple negative. I am not certain as to the % of BRCA2+. Caryn will see this and respond, and trust me she is the expert on the BRCA status.
It is http://www.facingourrisk.org - www.facingourrisk.org
I think that the state of Michigan is still living in the 18th century. Medical information is so very important. Probably more than half of PA's laws are obsolete also. Laws that were passed in the 1800's, and are still in effect.
Nancy
http://blue.regence.com/trgmedpol/lab/lab10.html - http://blue.regence.com/trgmedpol/lab/lab10.html
http://www.imaginis.com/breasthealth/brca.asp - http://www.imaginis.com/breasthealth/brca.asp
http://www.myriad.com/products/bracanalysis.php - http://www.myriad.com/products/bracanalysis.php
see...I told you she would reply as did Chrissie...all in the time it took me to type!!
 ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: dragonwing
Date Posted: Feb 23 2009 at 3:25pm
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No, I have not met with anyone yet, but I have gotten a ton of paper work to fill out already -- of course, 4 pages of it, I can leave blank since I have no family history... I the starting point!
------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: Nancy
Date Posted: Feb 23 2009 at 3:27pm
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Joyce,
It took less than 2 weeks for Lori to get the results....but it was 2 agonizing weeks.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sibu
Date Posted: Feb 23 2009 at 5:25pm
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Hello Joyce and welcome! Lots of good information out there about BRCA testing, I'm sure you're reading up. From a practical standpoint, you and your doctors will often take this status into account when deciding on treatments. For example, since there is an increased risk of ovarian cancer with BRCA+, many women choose to have an oopherectomy (ovaries out) or a complete hysterectomy after their bc treatments. If you are positive, your daughter will likely choose to be tested as well, and may want to be very proactive with mammograms, etc. You will run into recent articles stating that family history often trumps BRCA- status; in other words, since you have been dx, even if your BRCA test comes back negative, your daughter and grandchildren should be on heightened alert and vigilent about prevention. It's a lot to take in! Best of luck with everything. Come back often. Love and light, Donna ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: vickyann
Date Posted: Mar 06 2009 at 2:57pm
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The BRCA testing in Texas is 3000.00 dollars. Is there any place you can have it done cheaper? I do not quailfy for assistance. My insurance does not cover it.
If I test positive I want to have my other breast removed. Am i crazy or scared?
vickyann
Dx12/2007
stage 2
no nod,single mast
chemo 6 tac
I have not had recon yet
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Posted By: dragonwing
Date Posted: Mar 06 2009 at 3:00pm
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Well, unfortunately, my daughter is one of the many here in Michigan with no insurance and no full-time job so unless she can find a place that will test for close to free, she won't be able to afford testing. ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: Nancy
Date Posted: Mar 06 2009 at 3:05pm
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Joyce,
If you test positive Donna (sibu) told me that you can talk with the people at Myriad, and there is s possibilty that they will test your daughter for free. I will have to email her to ask. I will get back to you.
Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: dragonwing
Date Posted: Mar 06 2009 at 3:22pm
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What is Myriad and where is that?
------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: shellieh51
Date Posted: Mar 06 2009 at 3:42pm
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Ladies, Please don't forget that the BRCA genes can be passed down through the father too. I tested negative but my husband's mother (who was adopted) died of BC at the age of 51. When I had my counseling, I was surprised at attention given to my father's family history. Best wishes for a negative result. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: dragonwing
Date Posted: Mar 06 2009 at 3:47pm
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Yeah, I met with an instructor at the college I teach at. He teaches genetics and biology, and he was telling me that also -- that 1/2 of our DNA comes from Mom and the other 1/2 from Dad so there is a potential to get 2 positives, 2 negatives, or a positive and a negative reading, but all you need is one positive to be a "carrier" so to speak.
------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: Nancy
Date Posted: Mar 06 2009 at 3:53pm
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Joyce,
Myriad is the genetic testing labs. I have a few links for you. This is where they send your blood to test for the BRCA gene mutation.
Nancy
http://www.myriad.com/ - http://www.myriad.com/
http://www.myriad.com/products/bracanalysis.php - http://www.myriad.com/products/bracanalysis.php ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: vickyann
Date Posted: Mar 06 2009 at 4:29pm
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Nancy,
Is the cost the same in every state? Is 3000.00 reasonable?
vickyann
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Posted By: kirby
Date Posted: Mar 06 2009 at 4:34pm
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$3000.00 is what it cost for testing in 2000- 2003 so the price hasn't gone up at all. So that may now be considered a bargain considering inflation/our economy !
When & where I had it done it, included several [at least 3] meetings with 2 geneticists, with them telling me to call them with any little questions, several meetings with a therapist, to ensure handling of information. I assummed that was standard but I have never heard anyone else mention this.
------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: vickyann
Date Posted: Mar 06 2009 at 4:37pm
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Thank you...Kirby
vickyann
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Posted By: Nancy
Date Posted: Mar 06 2009 at 4:57pm
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Kirby,
Lori had paperwork to fill out and then she had a...what do you call it...where you sit and talk to someone with screen in front and you can see each other? Oh crap...my mind is a blur tonight. That's all she had, and then went to the lab for the blood work. She got the results in 2 weeks, and they thought that my husband's sisiter (dx with bc 14 years ago) was a closer family member than my maternal grandmother who died of OVC. Lori tested negative and not even a variance.
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Nancy
Date Posted: Mar 06 2009 at 5:00pm
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Vickyann,
There is only one place that does the testing and that is Myriad. It is in Utah. So I am guessing that there is a standard fee? You can check the FORCE site and maybe there is more info.
Nancy
http://www.facingourrisk.org - http://www.facingourrisk.org ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: Crystal
Date Posted: Mar 07 2009 at 2:13am
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Hey everyone! I am new to this site and have found it very helpful and it gives me hope. My mom has TNBC. She has not had the BRCA test. How does she go about getting this test? Does she need to have her doctor request it? Does insurance pay? Any info on how to go about this would be helpful.
Thanks,
Crystal
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Posted By: NancyJane
Date Posted: Mar 07 2009 at 3:07am
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Hi Crystal:
The BRCA test is usually ordered by the gynecologist or breast specialist for a patient. Because the test is so expensive, about $3,000., it is not usually ordered unless there is a strong family history of breast cancer, ovarian cancer, to a lesser degree colon cancer and in men prostate cancer.
They will look for close familial ties with cancer first: mother, father, siblings than to further family ties: grandparents, aunts, uncles, cousins, etc... If the geneticist does not think the family history is significant, they may not recomend the test, especially if the patient does not currently have a BC or OVC diagnosis (my sister tried for years to get tested and her dr. would not authorize it, so insurance would not pay). As soon as I was diagnosed with BC, my Dr. agreed I should be tested, my mother died at 36 of OVC and her mother died at 45 of BC.
You can call Myriad directly and they will send a test kit to any lab you ask, I did this myself just in case my dr. did not order the test, I wanted to be able to get it done. The cost still remains the same. ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: dragonwing
Date Posted: Mar 07 2009 at 3:31am
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Well Crystal, As everyone on the site advised me -- make sure that your insurance will pay for the test cuz it "ain't cheap!" Once I called my insurance company, they said since I've had breast cancer, yes, they will pay for the testing so when I saw my onc., I told him about it, and of course, before he had told me the same thing -- make sure your insurance will pay for it because he said (in Michigan at least), it's about a $5,000 test. My onc. contacted the West Michigan Cancer Center here in Kalamazoo -- they do genetic testing there so I have an appt. for March 17th for it. ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: dragonwing
Date Posted: Mar 07 2009 at 3:50am
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Now, in my case, my insurance said they would pay for it because I've had breast cancer. Of course, the ones I'm concerned for is my daughter and grandchildren -- am I passing something on down to them that they need to be paying close attention to. I'm adopted so I have no idea if there is any family ties to my cancer. My birth mother was also adopted so unless the State of Michigan gets their head out of their butt, their answer to me when I try to get identifying information so I can get any medical information is "it's none of your business. No." ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: Crystal
Date Posted: Mar 07 2009 at 4:02am
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Thank you guys so much. My mom has TNBC and my grandmother also had BC. I will talk to my mom about getting tested. One more question can the BRCA gene skip generations? For instance, can my mom test positive and I test negative but my daughter test positive. Does this make any sense?!?
Crystal
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Posted By: CarynRose
Date Posted: Mar 07 2009 at 10:53am
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Hi guys.... I think I can chime in here. I've skimmed this topic, so pardon if I'm repeating anything.
If you have had breast or ovarian cancer, your insurance must pay for the Myriad full panel test. (Myriad holds the US patent for the test and so they keep the price at $3400).
For those who have children that want to test, if YOU test positive, then they may just test that location, and so the cost would be less. HOWEVER, My cousin, whose mom was BRCA+ at one site was tested only at that site when SHE herself got BC. What we didn't know is that her late father was also BRCA+ and she inherited the mutation from him. That's why a good genetic counselor is important.
Now, if you don't have insurance, you can contact Myriad. I believe they have a program for those who can't pay.
Crystal, If you tested negative and your daughter tested postitive, she may have gotten the mutation from her father, like I did.
This happens a lot amongst Ashkenazi Jews where the incidence of BRCA is a lot higher than the general population (General population is 1/800; Jewish population is 1/40). We know that my mother's mom was BRCA+ and she passed it to her son, but not her daughters, so my mother is negative.
I hope all this makes sense. I can tell you that the BEST place to go to get all the information you would need on this would be http://www.facingourrisk.org - www.facingourrisk.org
It's the FORCE (Facing our Risk of Cancer Empowered) website and you will be an incredible support there.
Love,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Crystal
Date Posted: Mar 07 2009 at 1:51pm
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thanks so much Caryn. I will talk to my mom and let her know she can be tested and it be paid.
Crystal
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Posted By: trip2
Date Posted: Mar 07 2009 at 2:10pm
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I will also throw out that in 07 my test was $3300.00 and insurance picked up all but 10%.
Once I learned I was positive my oldest daughter and sister were able to be tested for my mutation for around $300.00 a whack. My youngest daughter who is 22 took it upon herself and found a large hospital in a big city near here and was able to have her genetic counseling and testing done for free.
So those of you who do not have the funds please check with your larger medical centers or hospitals and I bet you will come across places you can do this for free. You may have to qualify. I did not ask my youngest that, she is a full time college student working part time. If I remember correctly she did not have to qualify but not sure. I do know the genetic counseling was free as a service thru the hospital for women.
As far as I know, Myriad in Utah is the only place doing this type of test. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: vickyann
Date Posted: Mar 07 2009 at 4:05pm
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Thank you Pam! Very helpful information. I have a daughter in college too. I need to have the test for her and her sister. College is taking all our extra money. ( And deductibles on doctor visits.)
Good Information girlfriend!!!!
Vicky
dx12-70
mast stage2 3cm
no recon..yet
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Posted By: vickyann
Date Posted: Mar 07 2009 at 4:10pm
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I am triple negative, with no history in my family. My insurance said without a history they would not consider me for the test. I will go back again and be more forceful. Thank you thank you...vicky |
Posted By: Nancy
Date Posted: Mar 07 2009 at 4:18pm
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Vickyann,
Found this, and I was under the impression as is Pam, that only Myriad did the testing, but apparently not?
Nancy
http://www.dnadirect.com/web/article/testing-for-genetic-disorders/breast-and-ovarian-cancer-risk/18/insurance-coverage - http://www.dnadirect.com/web/article/testing-for-genetic-disorders/breast-and-ovarian-cancer-risk/18/insurance-coverage
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: CarynRose
Date Posted: Mar 07 2009 at 5:17pm
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Vicki,
Definitely be more forceful and persistant. Often with insurance it's the squeakiest wheel that gets the grease.
Nancy, Yes, you can get a BRCA test at a particular site, or for say, the 3-Ashkenzi founder mutations, but Myriad has the patent on the full panel test.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: vickyann
Date Posted: Mar 07 2009 at 7:29pm
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Full panel?
So when you get your genetic testing, is there one choice or several test. I am confused.
vickyann
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Posted By: dragonwing
Date Posted: Mar 08 2009 at 6:33am
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Now, I know that I have excellent health care insurance, but since I'm adopted, there is no history, but my insurance said since I've had it, they will test.
------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: CarynRose
Date Posted: Mar 08 2009 at 6:35am
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In the full panel, they test both BRCA genes completely at all sites. That is the test that Myriad had patented in the US.
Partial testing can be done on specific locations on the BRCA genes. For instance, 187delAG on BRCA1+ is a popular site for a mutation in the Ashkenazi population.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Bunnysmama
Date Posted: Mar 13 2009 at 10:51am
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I thought that if no one in your family has been tested before so they don't know which, if any, of the mutations they may find, you had to have the full panel. Then if other family members want to get tested and they know what to look for, partial testing could be done. Is that not the case?
I was the first in my family to be tested so I had the full panel done. I was found to be BRCA2+ (6174delT, which is one of the founder mutations in the Ashkenazi population). Then my mother got tested, and she was only tested for that specific mutation. She is not Jewish and tested negative, so we know the mutation was passed down through my father. ------------- Dx 11/06 @ age 37 IDC Stage I, Grade 3 BRCA2+ |
Posted By: trip2
Date Posted: Mar 13 2009 at 1:15pm
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Bunnysmama,
That is the way we did it. Mother had already passed away back in 71 w/ovca, dad had passed away so I was the oldest living one left who had had bc so I got the full panel, then my sister and both daughters tested after me for my mutation. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 13 2009 at 4:20pm
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Of course, my family would have to be different. As you know, I got cancer and then, using the full panel, tested BRCA1+, at the 187delAG site. About a year later, my maternal cousin got breast cancer. Her mother (not related by blood to me) was fighting OVCa and was BRCA1+ at the OTHER Ashkenazi founder site.
So, it seemed logical that they would test my cousin for her mother's site. And that is what they did. My cousin came up negative and made her choices based on that information. She had a lumpectomy and began preparation for chemo.
I told my cousin about my BRCA status and suggested that they might want to test my site too (since our grandmother -- her paternal, my maternal --- died of BC at age 56). Well, it turns out that my cousin was also BRCA1+187delAG!! Apparently, my grandmother had the same mutation I had and passed it down to my cousin's father, who passed it down to his kids.
To make a long story longer, when my parents tested, my mother was NEGATIVE and my father also had the BRCA1 187delAG mutation.
If they had tested my cousin with the full panel they would have discovered her mutation up front and she would have proceeded differently.
Just something that CGC's need to keep in mind when working with certain populations.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Mar 14 2009 at 8:53am
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Caryn,
When she, your cousin, had her counseling wouldn't they have discovered there was history on the father's side? Her/your paternal grandmother? Was her mother tested and negative?
I do not understand why they didn't go with father and mother history and do a full panel on her since she obviously had history with your/her grandmother and her mother? Am I missing something here? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 14 2009 at 3:18pm
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I guess they thought that since her mother had OVCA and was BRCA1+, and her maternal grandmother also died of OVCA, that this was as far they went.
I would think that they would have explored her father's side since our grandmother died of BC, and I had BC.
I don't know, maybe there was an insurance issue and they had to test only one site? I wonder why they didn't test the 3 founder mutations. I'm glad that I suggested that she test my BRCA1 site. It was after her surgery. She would have had a mastectomy had she known her true BRCA status. Instead, she had a lumpectomy.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: cg---
Date Posted: Mar 14 2009 at 4:10pm
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Dear All,
I was denied OHIP paying for my testing. We do not have any breast cancer in my family except for me. Not one of my mother's sisters, not any of the many, many female cousins - just me. Colon, brain, melanoma on my mother's side.
My father was born in Warsaw, Poland - his mother's maiden name was Rachman.
My father was diagnosed with prostate cancer at age 53 and I was diagnosed with breast cancer at age 53.
My father's mother did not have breast cancer. I have no information on any family from my father's mother side of the family and never knew of any family when I was younger on my grandmother's side of the family.
My concern is that I got it from my father's side. But the genetics counselor said there is not enough to warrant testing.
The genetics counselor asked me why I wanted to be tested and the ramifications for other people if they were tested and found positive - it could potentially impact their ability to get employment or insurance.
I told her I just wanted to pass on my dishes to my children - not a bad gene.
Once again I will have to pay for anything in the way of testing.
Connie
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Posted By: CarynRose
Date Posted: Mar 14 2009 at 4:48pm
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It blows me away that a genetic counselor would look at the history of your family on both sides and not think that you might have the mutation. Colon, brain, and melanoma cancers are some of the other cancers that can also be caused by the BRCA gene (more BRCA2 than BRCA1). With your father from eastern Europe, couldn't the counselor think that there is Jewish heritage in your background?
Insurance should pay for it 1) you had cancer 2) there is enough family history for them to cover it.
Regarding employment or life insurance, best to get life insurance before testing. The GINA Act which was passed by Congress last year will prevent any discrimination based on genetic testing.
Cheers,
Caryn
------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Suzanne
Date Posted: Mar 14 2009 at 5:59pm
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I just wanted to add that persistence sometimes pays off. I was at first turned down for genetic testing but had my doctor reapply, indicating that even though there was no history of cancer in my family, my mother was adopted and I had few fraternal relatives. I got the test.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: JanetK
Date Posted: Mar 14 2009 at 7:57pm
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Ok, so I went to that site. I see nothing that refers to "diagnosed with bc" it seems that everything is based on "if you are more susceptable to GETTING cancer" What benefits, other than knowing that I have the gene that could be passed to my daughter, (which of course is a huge thing for her to know)in my treatment decisions? ------------- TNBC feb 13,2009 2.6x 3.5 neoadjuvant chemo 8 rounds Lumpectomy successful Oct 09 axillary node dissection Nov 09 still awaiting results |
Posted By: cg---
Date Posted: Mar 14 2009 at 8:07pm
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Well, I am sitting with one remaining breast, two ovaries and a uterus. If I had the BRCA1 gene I would be booking excision of the remaining breast, the ovaries and uterus.
My mother, her three sisters, my only sister and every female cousin had hysterectomy and ovaries removed in their early 40s. I am the only one with breast cancer, with ovaries and uterus still intact.
Connie
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Posted By: JanetK
Date Posted: Mar 14 2009 at 8:28pm
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Not to be inconsiderate, but I still don't get what benefit it would be to me, recently diagnosed with tnbc, to know if I have the BRCA mutation.
------------- TNBC feb 13,2009 2.6x 3.5 neoadjuvant chemo 8 rounds Lumpectomy successful Oct 09 axillary node dissection Nov 09 still awaiting results |
Posted By: krisa
Date Posted: Mar 14 2009 at 9:11pm
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nothing is a slam dunk about any of this cancer journey-what to do and what not to do. you gather information and do what is best for you, and then cross your fingers and toes and hope you made the right decision. i am going to contact a genetic counselor and discuss my situation. i have two daughters, two sisters and a niece and nephew, plus, two breasts and a uterus.  |
Posted By: trip2
Date Posted: Mar 15 2009 at 3:29am
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Janet,
Because if one is positive for one of these mutations you might want consider and I say consider, mastectomies, hysterectomies, having your tubes, uterus removed, ovaries. Being positive for brca 1 for example is a high risk for breast and ovarian cancer.
If you are positive than your daughter and/or family might want to be tested to see if they have your mutation. If they are positive than they might want to increase their vigilance for one thing and possibly consider surgeries at a time when they are ready to greatly reduce their risk. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: NancyJane
Date Posted: Mar 15 2009 at 3:57am
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Janet:
It was explained to me by the genetic counselor and gync onc that even if we "get" all of the cancer I have now, God willing, I still have an 80% chance of having ANOTHER breast cancer in my lifetime, totally unrelated to the cancer I have just fought.
In addition, I have up to a 40% chance of having ovarian/falopian tube cancer in my lifetime.
Given these high and very stagering odds and watching my mother die of ovarian cancer at the young age of 36 (I was 6-8 yrs old when she fought this) I am eager to remove these organs from my body. Consequently, I am having these prophylactic surgeries on March 30th.
I am so glad I was tested for the BRCA mutation. I feel as if I have taken control of my genetic cancer risk and am doing something about it.
I hope this information helps. Please know that all of this involves highly personal decisions. I am just relating my opinion. Each of us must consider our risks and benefits individually and go from there. Much love and light to you.
Nancy Jane ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: trip2
Date Posted: Mar 15 2009 at 4:10am
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Thank you Nancy Jane,
You just answered one of my questions. After having a breast cancer and being brca 1+ you still have a 80% risk of having another one. I had been trying to find an answer to this question.
I wonder if you get that second cancer as I did does the risk continue to be high?
I did go with the bilateral mastectomy so I wouldn't think my risk would be high now. I hate to type that, it is like if I say I wouldn't think than it will happen, eek! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: NancyJane
Date Posted: Mar 15 2009 at 8:54am
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Pam:
From what I understood of the genetic informatin for BRCA1+ (it is different for BRCA 2+) the risk remains as long as you have breast tissue (or ovarian/falopian). The only real reduction is to remove as much of the tissue as possible. That is the best we can do. ------------- 41yr dx 7/25/08 Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08 T2 grd 3, N0, TN IDC BRCA1+ ACx4,Tx12 10/08-3/09 prophylactic hyst, ooph,mast & one-step recon 3/30/09 |
Posted By: CarynRose
Date Posted: Mar 15 2009 at 9:20am
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Nancy Jane and Pam,
You afe right about reducing your risk of a second primary by removing all possibly effected tissue. If another primary breast cancer arises, it can also be a different pathology. Then what do you do? How do you treat triple negative AND hormone positive?
The odds of recurrence are higher too. I"m an example of that.
BRCA1+ is nothing that you want to fool with, especially my mutation (187delAG). Seems it's very aggressive and tricky.
Love,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Mar 16 2009 at 4:26am
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Thanks Nancy Jane and Caryn for your comments.
Caryn my daughter was diagnosed multi focal, one tri neg, one er+, brca 1+, on one side, they treated her for the er+ since her Onc felt that was the worse of the two.
Caryn when you say odds of recurrence are higher are you referring to distant or local? Or both?
Oh why did we have to be so lucky?
 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 16 2009 at 6:46am
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I'm not sure if I mean distant or local. In my case, the recurrence hit the axillary lymph node adjacent to the affected breast, but none of my doctors detected it until it had grown to 3.3 cm and by that time it had spread to my lungs, making it "distant".
I think I mean local because if I'd removed the breast (like I wanted to at the start) and had all the lymph nodes removed, I might be dealing with some lymphadema, but the cancer wouldn't have come back.
I think for triple negs' like us, mastectomy with removal of lymph nodes on that side is very important to survival.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Mar 16 2009 at 8:28am
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So would I be correct in saying then that the axillary lymph node affected on you was so deep it wasn't palpable? If so that does boost up the feelings of getting rid of high risk areas.
Well you know Caryn if you had had a mastectomy and some lymph nodes removed it still might have come back. Look at the women that go thru that. I thought I had read and my surgeon had also said they don't take out all of the lymph nodes so that just leads to more questions.
Good grief are there really any safe path's to take?
I have to agree with you, triple negs atleast for the brca1 ladies, mastectomy is the way to go although I hate it that this disease
backs one into a corner and causes this kind of pressure on a woman!
It probably is the best for all tri negs because it is so aggressive. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 16 2009 at 12:39pm
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My current doctors told me that when the breast surgeon performed a sentinal node biopsy, where they took only 3 nodes, that there may have been a number of sentinal nodes and they only took one that appear to be normal. They probably missed another of the nodes that went on to grow and send cancer cells throughout my lymph system.
I'm also thinking that this sucker likes to play with your brain.....literally. I got the results of the latest CSF puncture and with all the chemo, with all that WBR and spinal rads, there are still 'rare atypical cells' there. I have to think that they may be the cause of my latest hand and foot tremors. I can't hold a dish because my hand will suddenly jerk and I toss it on the floor.
It's amazing that I can still type (lots of backspacing and deleting).
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: trip2
Date Posted: Mar 16 2009 at 1:05pm
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Caryn you are doing a great job!
Both times I had nodes removed I asked, how many and my surgeon would say "oh a hand full". Good grief! Ok.
I can only imagine Caryn why you must think it plays with your brain indeed after all that you have done to erradicate the monster.
It plays with our brains if we don't have mets cuz there just doesn't seem to be any answers popping up anywhere and it is discouraging. The news of the day, articles, studies and the comments at the end, more needs to be done but good cow are they doing anything??
Will you go back for more treatments soon Caryn or are you done for awhile? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kirby
Date Posted: Mar 16 2009 at 8:08pm
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Pam, do you really not know how many nodes were taken out ? Your surgeon did not tell you and it wasn't written up ?I know I really shouldn't be so surprised.Caryn, are you saying only in your case, or do you think as a general rule more than sentinal nodes should be taken for TN? ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: trip2
Date Posted: Mar 17 2009 at 5:21am
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Good morning Kirby,
No idea. The first time was a lumpectomy and the second time I had a bilat but was never given a number of nodes removed nor did I read it on my path reports. When I asked my surgeon, same one for both surgeries that was his answer, oh a handful. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Mar 17 2009 at 5:43am
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Kirby, I think that if they are doing pathology from biopsies and they see that someone is triple negative, they should as a practice do the lymph node dissection. Evidently there is more than one sentinel node and if the ink goes to one and not the other, I think you are screwed. So, yes, I think every TN should have node dissection to prevent micro mets.
Pam, I am currently in treatment. Every three weeks, I go to CTCA for an infusion of Avastin/Zometa. In addition, I'm starting my second round of Xeloda oral chemo. Tomorrow, I also intend to discuss with them finding the cells in my CSF and the tremors I'm having.
Yeah, I'm a little scared.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: outnumbered
Date Posted: Mar 17 2009 at 6:12am
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Caryn,
I will keep you in my prayers! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: trip2
Date Posted: Mar 17 2009 at 9:51am
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Caryn,
I posted earlier a study result from comparing the SNB with an Axillary Dissection, about the same results. After reading a few articles and information on both I frankly am not comfortable that they do a complete job with either one of them!
I agree with TNBC they should do more than a SNB now that I've looked into it a bit and maybe even come up with something even better.
Caryn, you have alot of arms here holding you up and praying for you.
Let us know what you find out tomorrow, we will be right here.
I'm just guessing here but is there any chance maybe that the tremors could be from the initial mini stroke? I do not have MD after my name so fishing around here. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: jody
Date Posted: Mar 18 2009 at 6:37am
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Hi All,
I had my genetic counciling at UCLA medical center two days ago. One of the things that the councilor told me is that if they discover that I have either mutation, that it will help me when it comes to getting my insurance to agree to any and all tests that I want to have done. My insurance is reluctant to pay for MRIs and Pet Scans and other scans. If I come back positive, I just have to wave my results in front of them and according to my genetices I will be able to get approval for pretty much everything.
Also, just an interesting note. The councelor made a huge family tree( I had tons of info about close and distant relatives). and not only was it obvious that (if I have the gene) that it not only came to me from my father, but there is an obvious pattern that it is ONLY the MEN in the family that are passing along the mutation (several of my relatives have already tested positive). It was really interesting to see that. (My poor dad feels guilty...I told him not to feel that way). ------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: dragonwing
Date Posted: Mar 18 2009 at 7:01am
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Hey Jody: I had my genetic counseling yesterday at West Michigan Cancer Center here in Kalamazoo, MI. Along with the family tree stuff, she also told me that if I come back positive, my daughter, who does not have insurance, will qualify for several different programs to help with free screenings, free mammograms, and so forth! ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: trip2
Date Posted: Mar 18 2009 at 8:41am
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Yes Joyce and if you are positive your daughter can get her brca testing done free.
My youngest was able to find a hospital in a larger city here and they had a clinic where she was able to get her brca test for free. I bet there are places all over the Country where this could be done if one were to look around.
I have also noticed that some of the large hospitals tend to have free clinics for mammos and such, we really need to dig but that help is out there for those who are not insured. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Marolyn
Date Posted: Mar 19 2009 at 6:23am
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Hi, I had BRCA Testing done last year. I'm a 1 1/2 survivor. Praise God! I was blessed with grant to pay for mine. This was done at Emory in Atlanta GA, but I'm sure other facilities may have this option as well. There was no income or credit check. I just told them I cannot afford anymore medical bills and this is what they offered. I did not pay one dime; For that I was truly grateful. It never hurts to ask. I wish you the best. Marolyn
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Posted By: trip2
Date Posted: Mar 19 2009 at 7:31am
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Wow Marolyn, this is interesting. I'm so glad you were able to get this test done and I know there are women out there that need to but cannot afford it. I agree, it doesn't hurt to ask. We might be surprised at what might turn our way. Thanks! So what were your results? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Marolyn
Date Posted: Mar 19 2009 at 11:09am
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Oh, I'm sorry I forgot to give my results. I tested negative to both BRCA 1 and 2. Thank God. I'm truly grateful.. Marolyn |
Posted By: Diamond2Wheels
Date Posted: Mar 19 2009 at 11:55am
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Hi everyone,
Ok, I know its been a long time. I took the BRCA test and I'm negative.
C-me on other sites...more 2 say!
Hugs of Love,
Tia ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
Posted By: trip2
Date Posted: Mar 19 2009 at 1:20pm
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Marolyn,
Good to hear you are negative!
Tia, good to hear you also are negative! Other sites? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: Apr 24 2009 at 7:54pm
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Hi all,
I just read this important thread from the beginning and just had a couple of comments- for almost all practical purposes Myriad is the only place in the U.S. where you can have the BRCA test..you can also get it at dnadirect but it is my understanding that dna does all its testing at Myriad. However there are a couple of exceptions. Memorial Sloan Kettering's Clinical Genetics Dept. and Dr. Mary-Claire King's breast cancer research lab at the Univ. of Washington are able to perform the BRCA test away from Myriad. As far as I know they are the only two places in the country who are able to do that. When my daughter had surgery at MSKCC they did another BRCA test to reconfirm the BRCA test results she had received from Myriad. We were told that they like to "doublecheck" when a woman is having surgery. They both showed she was BRCA1(187delAG)+. I believe you have to be a patient at MSKCC to have this done..I believe at no charge...and if you are part of Dr. King's study you can have the test done without charge as well.but you have to qualify to be in her lab's study..you can't just get the test and not pay. The study I am referring to is called "mystery families". Also, Nancy, I think you said the chance for a recurrence or new primary was 80%. It is my understanding that that figure only applies to the lifetime odds as a BRCA1+ woman. I believe the chances are 40-50% for recurrence or new primary after having an initial dx of breast cancer. Of course if a woman has bi-lateral mastectomies after the initial dx her odds of getting breast cancer again are reduced about 90-95%. By the way it is my understanding that Myriad does not have the same monopoly testing rights in Europe regarding BRCA1 that it has here. Seems the Europeans have the approach that something that happens in nature should not be patentable. I wish that was the case in our country as well. I think Myriad's $3000 cost for a "full panel" in unconscionably high. I can now more fully appreciate the support my friend, CarynRose received/is receiving here by reading this thread. TNBCF is a marvelous resource. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: dragonwing
Date Posted: Apr 25 2009 at 4:51am
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Steve: I just have my BRCA testing done -- thankfully I was negative -- but when I went to the West Michigan Cancer Center for the genetic counseling, the lady who does the counseling told me the test was about $4,500 for me. Now, THANKFULLY, I have great insurance -- I have not been billed 1 dime for the test yet, and Myriad did not call me (which the counselor told me they would do if there was any problem with the amount my insurance would pay). She also told me that if I were positive for my daughter to be tested would be about $450. -- big difference! I am counting my insurance a blessing! For example, each chemo treatment I went through* (BEFORE all the discounts for being a participating member), was about $11,000 -- out of all my 6 treatments, 6 Nuelasta shots, blood work, and doctor's visits -- my out of pocket has been less than $600, including my beginning of the year deductible! I am so thankful for my insurance through work! ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 5:34am
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Dear Joyce,
I have a bunch of things to say and I am struggling to try to keep them in an order of priority but I think that is impossible so here goes.. I am very sorry you are fighting this beast. I am delighted you are BRCA negative. Very glad that your insurance has worked so well for you. Thank you for your update on Myriad costs. If I felt $3000 was unconscionable you can imagine what I think $4500 is. I can't use the word I would like to use...and testing your daughter, if you were positive, is drastically reduced because they would be testing her, solely, for your mutation, your allele...and $450 for such a test is also much too much in my view. These prices are what they are because of Myriad's monopoly position. Having said what I did above I feel the price of the full panel is about $3500 not $4500 but my information may be old. I will check and revert. In any event, it is too expensive, in my view. As an aside, I think my daughter and I each paid $300 or $350 when we were tested in 2004 for what is called The Ashkenazi Founder's mutation. Often, because Ashkenazi Jewish people have a 1 of 40 chance of being positive it has been shown to be effective to do the Ashkenazi panel because so many Ashkenazis (but not all) have one of three mutations- BRCA1(187delAG)...that is what I and my daughter have BRCA1(5382insC) BRCA2(6174delT) In any event I know several women personally and have read about others on this forum who cannot afford the cost of genetic testing and their insurance companies or Medicare will not pay. This is a tragic situation and each year many lives are put in jeopardy because of the lack of definitive knowledge that a test can provide..and often siblings, parents, children are put in jeopardy as well because the family cannot afford the test. This all saddens me and makes me angry at the same time. Sending you my prayers and positive vibrations as you fight the fight. in your corner, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: dragonwing
Date Posted: Apr 25 2009 at 6:20am
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Thank you Steve for your prayers. They are appreciated! I know exactly what you are saying, though, about the cost of things. Like I said, I am one of the fortunate ones with very good insurance.... when I saw the break down of my first chemo treatment -- how much it was, how much the discounts were, and how much my insurance paid, I thought to myself, how can anyone without good insurance afford to fight cancer? Now, I'm never going to say that nationalized or socialized medicine is a good thing, but I think we need something here in the U.S. to help with insurance costs and with insurance companies taking control of things like how long a person can stay in the hospital for this, that or the other thing -- doesn't the doctor know better? I mean, my goodness, my lumpectomy -- and the doctor took 20% of my right breast in this lumpectomy -- was done on an OUTPATIENT basis! I went home that afternoon! Same thing when I had my gallbladder removed last year -- in and out in 1 day! Now, the reason why I am so against nationalized/socialized medicine is because my Aunt Peggy who lived in The Netherlands died in her 40s due to complications of diabetes -- it started with an ingrown toenail..... by the time she got treatment, they were amputating her foot off! Well, gangrene set in, and she died! If she would have come to the U.S., even though she would have had to pay for the trip over and treatment, she'd still be alive! From what I hear from all my relatives in The Netherlands, if you want good health care, you pay the Dr. under the table! That's not right either. The main reason I had the testing done, Steve, is because I'm adopted, and the wonderful State of Michigan tells me my adoptive records/family information is none of my business! Ain't that a kick in the pants! You see, back in the 60s when I was born, they didn't take good medical histories so the only thing I know about my birth parents is that my birth mother was ALSO adopted, and she wore glasses and was 5' 2" and very creative. My birth father was 6' 2", wore glasses, and was asthmatic, and his family was of European descent. So I had the testing done for my daughter and my grandchildren so they would know because as we all know "Knowledge is Power!" For me -- I am too young, have too many things to do, and have 3 precious grandchildren who need their Gramma. So I plan on winning this war! ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 6:53am
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Joyce,
my money is on you!!!!!!!! good luck and enjoy those grandchildren..I have two and they add so much to my life... quick story- I took my 8 year old granddaughter to see Ratatouillie and I kept looking at her face and her reactions of laughter and delight..."Grandpa, how come you aren't watching the movie?"..."I am am, sweetheart, through your eyes"...."Grandpa, can I sit in your lap?"..."sure, sweetheart"...about 30 seconds later her little voice..."Grandpa, I love you"... doesn't get much better than that, huh? enjoy!!!!!! and keep fighting!!!!! all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: dragonwing
Date Posted: Apr 25 2009 at 8:04am
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You are so right Steve! It doesn't get better than that! About the same time my hair fell out (December 30, 2008), my 4-year-old grand daughter stopped eating and was drinking NONSTOP. I mean she would even steal water! She has had numerous tests run and has been to see a kidney specialist, has been tested for diabetes, and everything under the sun! When this started she was 38 lbs. Now, she is 31 lbs. and just looks so pale and thin. FINALLY, the doctors have ordered an MRI which is going to be done on May 5. I am planning on taking off work to be there for her. Anyway, last Tuesday, we babysat for awhile, and my husband, Michael had just heated up some lasagna for me. Well, Rayne (that's my grand daughter's name) was sitting on my lap and wanted to try to lasagna so I shared with her.... she must have eaten 1/4 of it (which I was happy about!) The doctors can't make up their minds if its "psychological or sympathy" for me or if it is really something medical.... but I know what you mean about seeing through their eyes because my heart just hurts for her..... I'd rather go through EVERYTHING I've been through since October again than have her go 1 more day through what she's going through. ------------- Joyce http://dragonzwing14.wordpress.com/ Infiltrating ductal carincoma w/ focal papillary features Stage IIa, 3 cm S Node neg, Taxotere/Cytoxan x 6 33 radiation BRCA neg Praise God! |
Posted By: vickyann
Date Posted: Apr 25 2009 at 10:38am
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I got great news late yesterday. I am BRACA 2 negative. When they called me with the results I was thrilled...Then they said they did not see any reason for testing for BRCA one....... What does that mean..Why do they get to decide........Grrrrrrrr..
Thanks for listening. Isn't the brca one more for breast cancer and BRCA two more for oviaran cancer....... ------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Nancy
Date Posted: Apr 25 2009 at 2:46pm
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Vicky,
I thought that they tested for both at the same time? Where did they do the testing? It is great news that you are negative for BRCA2!!
I sure hope that Caryn chimes in here...
 Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 3:45pm
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Dear Vicky and Nancy,
The only reason I could see for you being tested solely for BRA2 is that your mother or dad were BRCA2+ and they tested you for that specific allele. Otherwise it makes no sense to me... If you do not have a confirmed history of BRCA in your family and are Ashkenazi they might start testing you for the Ashkenazi Founders Mutations which encompasses 2 BRCA1 mutations and one BRCA2 mutation. If they were to test you for the "full panel" you would be tested for multiple BRCA1 and BRCA2 mutations.. regarding risk % I think the following from FORCE explains some of the risks involved...Summarizing the highest risks seem to be for the Ashkenazi mutations and in the general population BRCA1 is more prevelent for both breast and ovarian cancer. Being BRCA1+ seems to subject a woman to earlier-onset disease(both breast and ovarian cancers) than BRCA2 and is particularly difficult because approx. 85% of BRCA1+ breast cancers are triple negative. http://www.facingourrisk.org/risk_management/breast_and_ovarian_cancer.html all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Nancy
Date Posted: Apr 25 2009 at 5:53pm
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Steve,
Wanted to make that link hot so no one has to type it in.
Hugs,
Nancy
http://www.facingourrisk.org/risk_management/breast_and_ovarian_cancer.html - http://www.facingourrisk.org/risk_management/breast_and_ovarian_cancer.html ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 6:11pm
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thank you Nancy...much appreciated..
all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: vickyann
Date Posted: Apr 25 2009 at 6:18pm
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Nancy,
I do have a relative who tested positive for BRCA2. My insurance agreed to the brca test. I never dreamed I would not be tested for both. I wonder if they have a sample and if i could call. I wish the ppl who made these calls realized it is comforting to know where you stand and learning the BRACA results still feels unresolved without the results from both.
I had the test for myself and for my two daughters.
You try to stay on top of things with triple negative, to prevent recurrance and save your own life, take charge and fight this and when something like this happens it is frustration.....
I do not have the contact information yet the oncologists office called with the results and they are mailing it to me, at which time I will call... I think it is to late with the blood results...
I am grateful, happy, and hopeful with the braca2 results... I feel my plate is still full. Thanks for listening ya'll:-) (Ya'll meaning all of you):-)
I wish I could whisper in the ear of the ppl who make the judgement calls for insurance the fear we all know so well...
Till that day I am blessed to have each of you here to listen to my out cry. I know you understand in a way no one else could. Thank you with all my heart I appreciate you.
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: SagePatientAdvocates
Date Posted: Apr 25 2009 at 6:47pm
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Dear Vickyann,
Don't mean to get you further upset..You are rightly concerned to try and make sure what is going on...for yourself and especially for your children if your relative was your sister...maybe...but just maybe in my view....but if not I would demand a full panel testing... I don't think you have been properly advised...just my opinion. I have a dear friend on the FORCE board who is BRCA1+ and BRCA2+...it is rare but it happens.....Being triple negative is a clear hallmark that calls for BRCA1 testing in my view..I would fight for additional testing.. good luck to you!!!! all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: Nancy
Date Posted: Apr 25 2009 at 7:49pm
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Vickyann,
Do not be upset sweetie. I would think that someone can make a call and inquire just why they did not test for both. I wonder if it was the onc who ordered the test. Who did order the test?
I don't just want to whisper in the ears Vicky..I want to scream it from the roof tops. Those people siiting in the cubicles who make desisions which impact all our lives, need a rude awakening. Steve said it well in another post about Taxol. You need a magnifying glass to read even the warnings as to the drugs. Done purposefully...you betcha!!
If we actually had someone explain in laymen's terms what the warnings mean, I doubt anyone would be taking these drugs. We have had several women report serious side effects as to Taxol and Taxotere. English Jan was one. She thought she was going to die.
It may not be too late Vicky.
Many hugs,
Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: vickyann
Date Posted: Apr 26 2009 at 3:03pm
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Nancy, I went for genetic testing at my onco ofc. I took the BRCA test results on family member so my insurance would pay. When they called me with results (and to tell me they would also mail the results but wanted to give me the good news). She said they did not test you for BRCA one, her words were I trust their judgement and they (BRAC test center) did not see the need....... My emotions at that moment was I should be so happy, then I thought why..what ..ok...great news..thank you...yes i am happy..I hung up and my husband said was it good news and I said yes..he said you don't sound excited and you have been praying for this..he seems displeased with my lack of joy.... I do not think he understands it is comforting to close a book on any part of this journey. Because the BRCA one was not tested the book is open...When I get the paper results I will call and ask.... I agree with everyone else about the toxins in chemo, I was very sick and had to go get things in my port for nausea. I wanted to live and did not have a choice.
Nancy, I went to Houston for the test for polyphenon E study. I did not qualify because evista for bones could be a benefit. I had to stop the drug and return to Houston May5th to try again. I hope this is a good choice.
I am hoping to build up immunity. There is a chance i could get the placebo. The good part is they give me a complete work up, mamogram, biopsy of my healthy breast, blood test etc.
i see the onco also. I feel someone will be watching me for the next six to nine months . That will get me to almost Christmas and that will get me to the 2 year mark. Then I will work on getting to year 3.... Nancy, God Bless you for caring about us..
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Nancy
Date Posted: Apr 26 2009 at 5:04pm
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Vicky,
There are things that you can do to help your immune system and one is Vitamin D3. Such a simple but very effective little vitamin to take. If you haven't had your D levels done please do so. They are to be around 80 for someone dx with cancer. That would probably be way after you have taken it for a while. Lori takes 5000 iu's a day, and has been doing so for a very long time now.
Do not let any Dr. tell you differently. They simply do not know, as they probably had only one hour of training on this in med school. The pharmaceutical companies write the medical books, so what can you expect. And...the doctors are bribed.
Lori contributes the muscle and joint pain she had before dx to low D levels. The pain during chemo to the drugs and the fact that they were telling her not to take any vitamins, the pain after chemo, until she got her D levels up was also bad. She just ran 2 miles the other day and said that was the fastest she has ever run 2 miles.
Lori has never gotten on any bc site, but now...all of a sudden...she is researching everything that she can. The lymphocytes, the immune system, the thymus, all the ways she can fight this damned beast so it will not come back. Not with drugs Vicky, with all the things that have been around for thousands of years. She is also going to do the biodentical hormones. If you can, take Selenium also...and I know you have to check with the onc before doing so.
She too will be at the 2 year mark in June when she was dx. She is worried that due to the fact she had rads...did that damage the thymus to the point where it will not function properly? They don't tell you that when they say you have to have rads. Lori is a nurse also, so all of a sudden the nurse in her is waking up and remembering all that she was taught about the human anatomy.
Ronda does not get on the site much anymore, but she was telling us about the D when I frist joined in July of 2007. No one is listening, and yet it was on the news for a while, and is now gone bye bye. The pharmaceuticals cannot market the D, so the media just is told not to hype it. Heaven forbid that there wuld be such a simple solution to so many diseases. I'm sure some one would be out there screaming that the D will damage your body.
There are very few cancer clinics here in the states which prescribe complimentary medicines/vitamins when you have chemo. That is so very very wrong. I don't care what anyone says!! Who do you think tells them not to prescribe it? The pharmaceuticals!! They say they will interfere with the chemo, and yet there are no studies proving that they do.
All of you women are going to have to start researching what you can do to heal your bodies after this chemo. Do not allow your doctors to tell you that this is "the new normal". That is total BS!! They only want to prescribe another damn drug and then the drug has a recall or there are lawsuits because many are dying from taking it.
I had a woman say to me the other day that she thought since all the products coming from China were somehow/some way tainted, that China was trying to kill us all off. I said that we don't need them to do it, our government is doing a great job!
Are you saying that you were taking Evista? That is like Fosamax, right? I refuse to take the Fosamax anymore. I stopped a month ago, and guess what? I can now swallow without difficulty. Gee....do ya think it might have been the fosamax? It has a warning form the FDA. Of course that is buried in the news!
Sweetie I know that you want to live, and so does Lori and every person ever dx with cancer. It is just a damn shame that you have to destroy your body by taking the drugs they say will kill the cells. Oh but the drug comapanies do not give a rats a$$ if you are never the same. Ronald Regan went out of the states for treatments. What does that tell you?
Bev...Yankeespie and I email or talk on Paltalk or on the phone almost every day. She had a bilateral, and that's all she will have done. And even though she always had a pretty healthy diet, she had added more things and will do everything she can do.....naturally to fight this beast and to make her body healthy.
Your onc was wrong for not insisting that they test you for both gene mutations. Dead wrong!! You need peace of mind!
WOW! I just wrote a novel...felt good...now take care sweetie.
 Hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: vickyann
Date Posted: Apr 26 2009 at 6:50pm
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Nancy,
You may not understand how your letter spoke to me, I have had a so much pain in my legs. When i get out of bed I feel 100 years old. It gets better in a few minutes but it hurts all the time. I do not take anything for the pain. I make myself go walk and it gets much better. I walk jog for about an hour. Lately my back and shoulder feel stressed. I think your letter and mention of Vit d3 is a great suggestion. I know your letters touch so many ppl and certianly have help me.
I feel from all who write, the main fear is recurrance. Once you have gone thru chemo you think you can do anything....but chemo again. So many brave women here have done it. I admire all of the people here on this site. For I know for sure if you come here you have hope and you are a fighter....
Thank you for the interesting letter. Very informative.
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Nancy
Date Posted: Apr 26 2009 at 7:52pm
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Vickyann,
One other thing you may want to get is Turmeric. Organic ground turmeric. You mix about 1/2 teaspoon with a little olive oil and a pinch of black pepper. Put it on everthing,. Eggs and in soups and meats, and on vegetables. It is great for the joints, and has been around for thousands of years, and is a cancer fighter!!
You can get the capsules, but it is not nearly as potent. Get the book...Anti Cancer, A new Way of Life by David Servan-Schreiber. Many great suggestions on fighting cancer. He has had brain cancer 2 times and beat it.
Eliminate all sugar and white flour from you diet. Cancer cells feed on sugar. Get that D3...at Walmart, Twin pack, 100 tablets each and 1000 iu's each tablet for $6.00. It has to be cholecalciferol. I did post an article on D3 in the news forum a while back and it is on the first page. I also have updated articles on D that I will send to you. BTW...I am not working for a vitamin supplier!!
Bev...Yankeespie, is taking 10,000 iu's of D a day. Ronda told her to take that. You also should take magnesium, as that goes hand in hand with the D3.
My husband has had psoriasis since 1966, covering his entire body, with the exception of his face. He and I started taking D3 June of last year. He was taking 1000 iu's and then in the winter has been taking 2000. He does not have one place on his body where there is any psoriasis. It is the immune system. He has done nothing differently other than the D.
Do not rely on your doctor to get your body well, they will only prescribe more drugs, and you body does not need any more drugs. Take matters into your own hands...your body...your life.
Many hugs,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: sibu
Date Posted: Apr 26 2009 at 8:11pm
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Random comments-- Turmeric is a wonder!!! I just buy plain capsules, not Nancy's organic mix-it with oil type, but it has helped tremendously with the muscle/joint pains. It's also a natural immune boost. Nancy, you'll be glad to know that the vitamin D connection was covered in the tnbc teleconference the other day. As far as after-chemo treatment, I'll keep shouting from the mountain tops that bioidentical hormone replacement therapy has saved me. Joint and muscle pains are often directly related to a loss in progesterone and bhrt is more effective than Fosomax for bone health, without the side effects. ------------- Donna, age 42 Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
Posted By: vickyann
Date Posted: Apr 27 2009 at 7:05am
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Donna,
Great information.
I was wondering if our hormone receptors do not work and we take bio hormones do we run a risk of getting positive cancer. Do you know if we have any danger in this area? When you went to doctor to get on bio did they have mention anything to be cconcerned about?
Does anyone have an opinion about the green tea study (polypheon E study)
Thank you all for helping on my self help program..:-)
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Jennine
Date Posted: May 03 2009 at 11:22am
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Whooo Hoooo Nancy, you go girl!!!
I've been talking about these types of supplements too! Tumeric is awesome, it helps me with mild arthritis. Vit D3, I take it in liquid form, it's great. 2 tsps have 1000 iu and I take it 3 times a day. I take green tea, I eat lots of ground organic flax seeds. I also take flax oil...hmmm lets see.
I take lots of Vit C...I don't care what they say, it helped me heal up nicely from my surgery, I know it did! I take B-100 complex, great for folks on chemo..(but of course talk to the onc first, always) and...resveratrol. I eat as much organic fruits and veggies as I can.
Also eat lots of alkalining foods. Almond milk is great, did you know, parsly is a super food?? Who knew...eat it like you eat celery, put it in your salad, lots of it. Cancer simply cannot live in an alkaline enviriornment. Read, The Acid-Alkaline diet for optimum health..by Christopher Vasey, N.D. Also, Immune for life by Arnold Fox, M.D.
I also test my PH during the night (saliva or urine) you can buy the ph strips in the health food stores.
A great hot healthy cereal is Bob Red Mills, Hot and Tasty Cereal, it's excellent, gluten free and sooo darn good for you.
Point, there are so many good things we can do, natrually, without drugs to help our poor immune system. Especially after it has been so compromised by cancer and chemo..oh that "c" word, speaking of it,
I start on May 11th..bahhhh hummmm you know!!!
 Hugs to all,
Jen ------------- Age 44; DX 3/25/09 IDC TNBC Lumpectomy 4/10/09 1.8 cm Grade 3 Stage 1 Node Negative/Clear Margins No vascular invasion Rt breast |
Posted By: outnumbered
Date Posted: May 03 2009 at 12:23pm
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Ok this has been worrying me, so I have to just say it. Please do not misunderstand, I am not knocking natural immunity boosting, but please tell your doctor everything you are taking. Some natural herbs and such can negatively interact with chemo and possibly cause the chemo to be ineffective. Although we think of chemo as drug made up of toxic poisons that are a necessary evil, many are also derived from natural sources like fungi (taxol) and other herbs. Even natural remedies can have adverse reactions. Just please be safe and keep your oncologist in the loop.
Hugs!!!!
------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: CarynRose
Date Posted: May 03 2009 at 1:22pm
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Sara,
You are so right. I would not start taking any supplement that is not run past my naturopath. That is why I love CTCA so much because my doctors, naturopaths, and mind/body professionals are all under one roof.
Recent example: I am currently on Xeloda. I'm also recovering from treatment for leptomenigeal mets that has caused anemia for which I need B Vitamins and Iron. We were going to go out and buy an iron supplement and a B-complex. Turns out that there is Folic Acid in both. If I hadn't spoken to my naturopath, I would not have known that when taking Xeloda, I can't take any more than 400 micrograms (mcg) of Folic Acid per day. What I would have ended up with if I'd bought both products is innards that would be pretty messed up.
Sara is right -- always check with your doctor.
Many hugs,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Jennine
Date Posted: May 03 2009 at 2:42pm
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Hey Ladies,
I am not doing chemo yet. When I do, I won't take anything unless I check with them. I did mention to my onc about some things I am taking and he wrote them down and eliminated most, especially all antioxidants. I am only doing mild things (for the moment) to help with my mild arthritis. I am not on any prescription medication. I mentioned in my post, check with your onc, always. When you are in treatment, or on prescription drugs or have ANY medical condition, it's a different story. I agree with you ladies totally, believe me. When I am finished with treatment, to keep my cancer at bay is a different story. It's a life long commitment, I want to do everything in my power to help my body in the long term. Eating well, and exercising of course is a must. I slacked off for a year, not good. lol But I will get back.
Everyone take care..
Eat well,
Hugs, Jen ------------- Age 44; DX 3/25/09 IDC TNBC Lumpectomy 4/10/09 1.8 cm Grade 3 Stage 1 Node Negative/Clear Margins No vascular invasion Rt breast |
Posted By: trip2
Date Posted: May 03 2009 at 3:14pm
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During my last stint at the hospital the news of my being anemic was told to me by my doc. He gave me a prescription for Folic Acid. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: SagePatientAdvocates
Date Posted: May 03 2009 at 3:37pm
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Dear Pam,
folic acid is nice but chocolate is better... 
http://www.goodhousekeeping.com/health/nutrition/need-know-chocolate-1001 "Despite its name, a typical "milk" chocolate bar provides less than 10 percent of the daily recommended amount of calcium. But, surprisingly, a government survey shows that chocolate and products containing chocolate make substantial contributions to our daily intake of copper, an essential mineral in the prevention of anemia and, possibly, heart disease and cancer. Chocolate also provides significant amounts of magnesium, which plays a role in regulating blood pressure and building bones." but the trick is that the chocolate therapy must be taken over a 30 year period to prove to be totally efficacious....so my dear, you must promise to report on your anemia in 2039 and then we will discuss all of this again. But then again, who would argue with "Good Houskeeping"? I think this must be the real deal.. all the best, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: trip2
Date Posted: May 03 2009 at 7:21pm
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Hmmm 2039? I better get busy with that chocolate, happen to know where some is sitting very close by! I imagine I'll be beyond the pearly gates by 2039 but maybe if I kick up my chocolate involvememt I might make it! Now that would be cool.
Thanks for the tip.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: May 04 2009 at 12:05pm
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I"m between a rock and a hard place. Folic Acid would help with my iron levels, but it would screw up the Xeloda I'm on. I'm not allowed to have more than 400 mcg. of Folic Acid per day.
I really want to have more energy.
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |