extended panel testing
I'm 2 years out from diagnosis and am considering asking my MO about a referral for additional genetic testing. I did test negative for BRCA 1 and BRCA 2 but my paternal grandmother and a paternal cousin also had breast cancer. We were all roughly 40 when diagnosed. My father died young of a head and neck cancer and several other relatives on that side of the family had cancers at young ages. No ovarian or colon cancers that I'm aware of. When they do testing are there typical genes that they test for or do they decide what genes to test based on family history? I'm not sure there are genes that are implicated with this particular constellation of cancers but I wonder. On the other hand, I feel like maybe morbid curiosity isnt a strong reason for testing and Im not sure what difference the info might make in my medical care at this point. Im curious how others have used info on genetic mutations in your medical care (beyond immediate tx decisions since I'm well past that point)?Thanks.
Comments
-
A good genetic counselor can help you explore these concerns. Having knowledge about cancer causing mutations is not morbid curiosity with the family history you describe. The information could be critical for others such as cousins in addition to your own siblings or offspring (which you may not have because you don't mention any), even unrelated people who could benefit as we advance the understanding of how various factors interact.
Your young age would seem to indicate something going on. Hopefully insurance would cover extra testing. Get the referral, have the discussion and then decide what to do!
-
After several attempts to get my insurance company to pay for an extended panel (at the suggestion of my onc)to no avail, I did the 19 gene Breast and Ovarian Canacer panel from Color Genomics. Here is a link to a bco discussion about it https://community.breastcancer.org/forum/71/topics...
Best wishes!
-
Thank you so much for your responses. I do have kids and a niece, so you are right that it is worth thinking about. I see my MO in June so I'll talk with her about another referral...
-
Color Genomics now tests for 30 genes! Same price. I did it when it was 19 genes and am doing it again for the additional ones. We will order it for DH too since he has had melanoma and has extensive family history. Slick, easy process
-
Oh wow! Hmmm. I'll have to think about that. Thanks so much for the info KBeee!
-
hmm, that may be worth taking a look at. Is it easy to understand the results?
-
HC - I had an extended panel run at the insistence of my BS (my genetic counselor was initially dead set against going beyond the BRCA1/2 testing). I was surprised to learn that I do carry 2 mutations, one of which carries higher risk for pancreatic cancer as well as breast cancer and possibly ovarian.
Due to the knowledge of the susceptibility to pancreatic cancer I am on an annual screening protocol that would (we hope) catch any changes at the earliest stages. Had I not had this information I never would have even known about the possibility of screening, much less received a referral to do so.
I don't have children but have passed this information on to my sibs and my first cousins, as advised by the genetic counselor.
Each person has to make their own decision, of course, but testing can indeed influence both your own future medical care and the options available to other members of your family. I also found it helpful to gain some idea of why I have bc instead of just wondering...
As for Color Genomics, it's my understanding that they are very user-friendly. I wouldn't hesitate to refer my family to them - and have done so! I know there are a number of women on this board (including a couple, above) who've used them and I'm sure they will address your question regarding the reports, etc. Good luck as you move through the decision making and process.
-
thanks hopeful. I had to cancel my MO appt so will be following up with her soon.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team