BRCA 1 & 2, ATM, CDH1, CHEK2, MRE11A, NBN, p53, PALB2, PTEN, RAD50, RECQL, and RINT1 genes
Posted on:
Oct 13, 2011 07:55PM
Ottawa, On
Joined:
May 2010
Posts:
499
NannaBaby
wrote:
Anyone else get tested for PALB2 gene mutation?
NannyBaby, dx May 2010 at age 28. Neo-Chemo AC+Taxotere, surgery uMx, 25 Tomo rads, more chemo Cisplatin+Vinorelbine.
Dx
5/28/2010, IDC, 6cm+, Stage IIIB, Grade 3, ER-/PR-, HER2-
Chemotherapy
6/4/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Surgery
12/14/2010 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left
Radiation Therapy
2/20/2011 3DCRT: Breast, Lymph nodes
Chemotherapy
4/1/2011 Carboplatin (Paraplatin), Navelbine (vinorelbine)
Surgery
7/13/2012 Reconstruction (left): DIEP flap
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Jan 23, 2016 07:58PM
exercise_guru
wrote:
Thanks for joining our thread it is so helpful to pool information and to find others who are dealing with this gene.
I finished Chemo and had my hysterectomy/OOphrectomy. I am home recovering now. I did decide to remove my uterus but the reasons are not very concrete. Here is one pdf I found dealing with hysterectomy vs just an oophrectomy Link-pdf
I had a family history and based on my Gyno MO recommendation I decide to go ahead with it. I actually did the surgery at the same time as my TE implant swap. The recovery is taking 4-6 weeks but I am relieved to have it behind me.
Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Jul 29, 2016 11:10PM
Lovinggrouches
wrote:
I was diagnosed with stage one idc in January at 41. I have VUS of palb2. My mom has done lots of digging into family history and I'm sixth on her side (that we know of) that has had breast cancer. There is one, possibly two pancreatic cancers. There is a large part of the family history that is unknown because much of the family has no contact with one another. The breast cancer is prevalent in four generations I contacted Mark at PALB.org and he requested me to send my genetic test results but he felt that my variant of palb2 may not be the cause. He mentioned that it could be another gene I did the myriad my risk genetic panel. I wish I knew for sure my risk for another cancer. I surely hope that more comes out about this gene. I did contact FORCE and one of the ladies told me that I may be a good fit for their study and gave my phone number a few weeks ago, but so far have heard nothing about their family study. I just recovered from total hysterectomy because of chronic large cysts on ovary, hyperplasia and to prevent the problems that 10 years of tamoxifen can cause. Hugs to all!
+ PALB2 VUS. I can do all things through Christ who strengthens me! Oncotype score of 14
Dx
1/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Surgery
2/24/2016 Lumpectomy
Surgery
3/23/2016
Radiation Therapy
4/14/2016 Whole-breast: Breast
Surgery
6/9/2016 Prophylactic ovary removal
Hormonal Therapy
7/17/2016
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Aug 20, 2016 06:10PM
farmerlucy
wrote:
Hi ladies - I don't have any known mutations, but my family's BC history in terrible. With a low oncotype I figured it would be recommended that I do five years of HT. My onc says tens years due to family history of BC and other cancers. What are your oncs saying about family history and/or known mutations and years of hormonal therapy even with a low oncotype. Thanks so much for any input.
Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone!
Surgery
2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Dx
2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)
Surgery
3/11/2012 Lymph node removal: Sentinel
Surgery
7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Hormonal Therapy
4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Surgery
4/14/2015 Prophylactic ovary removal
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Aug 20, 2016 07:11PM
Lovinggrouches
wrote:
Farmerlucy, my MO said I have to do 10 years of tamoxifen. I am post menopausal now at 42 since the hysterectomy, but he wants me on tamoxifen versus AI to protect my bones and heart. I have a feeling that if I want to switch to AI in five years though, he would be ok with it. I also have extensive family history.
+ PALB2 VUS. I can do all things through Christ who strengthens me! Oncotype score of 14
Dx
1/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Surgery
2/24/2016 Lumpectomy
Surgery
3/23/2016
Radiation Therapy
4/14/2016 Whole-breast: Breast
Surgery
6/9/2016 Prophylactic ovary removal
Hormonal Therapy
7/17/2016
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Aug 20, 2016 07:51PM
exercise_guru
wrote:
My story is the same. 10 years of Tamoxifen or switching to AI at some point. He would probably have left me on AI for 10 years but the side effects were too extreme. I also had a hysterectomy and OOphrectomy because of the family history but that was more because they have no idea what PALB2 does so they chose to err on the side or caution. I worry a lot that I failed at AI. I tried both Arimidex and Femara. I chose to go on Tamoxifen instead of trying Aromosin until I can get the feeling back in my hands and somehow function. I have lasting side effects from the AI. I suspect I will be on HC for 10 years.
Age 42 05/15/2015 PALB2 mutation, DBL Breast Cancer Type 1A Grade 3 ER+PR+(right 1.3cm,.5cm) HERr+(left1.6 cm), 06/26/2015 BMX with TE 8/27/15 Chemotherapy TCH 12/30/2015 TAH/BSO/Reconstruction 1/29/16 Arimidex 3/1/16 Femara 5/6/16 Tamoxifen
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Aug 20, 2016 11:31PM
farmerlucy
wrote:
Thanks ladies. It does sound like family history/known or unknown mutations are pushing docs to the 10 year recommendation. Guru - I flunked Femara and Arimidex too, and my onc said Tamoxifen for ten years is fine. It's all a little disconcerting because I believe the recommendation was five years when I first started Tamoxifen. Oh well. Thanks again.
Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone!
Surgery
2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
Dx
2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)
Surgery
3/11/2012 Lymph node removal: Sentinel
Surgery
7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Hormonal Therapy
4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Surgery
4/14/2015 Prophylactic ovary removal
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Jul 8, 2017 07:59AM
Debbs74
wrote:
Myself was tested postive for the palb2 gene got breast cancer stage2 multifocal. One triple negative 2 centimeters the other 1 cm. Her2 nu had a mastectomy and in chemo now, did not get the other breast off because test did not come back in time when surgery was being performed. So I will do monitoring with mri...does anyone else have more info about this gene?
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Jul 8, 2017 08:51AM
Lovinggrouches
wrote:
inherited cancer.net. ICARE is an inherited cancer registry that is recruiting volunteers for research into palb2. I joined and filled out info and consent for them to use my tumor specimen if needed for their research since there is so much unknown. I do know the new guidelines recommend yearly mri for us.
+ PALB2 VUS. I can do all things through Christ who strengthens me! Oncotype score of 14
Dx
1/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Surgery
2/24/2016 Lumpectomy
Surgery
3/23/2016
Radiation Therapy
4/14/2016 Whole-breast: Breast
Surgery
6/9/2016 Prophylactic ovary removal
Hormonal Therapy
7/17/2016
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Jul 15, 2017 10:20AM
Lovinggrouches
wrote:
bump
+ PALB2 VUS. I can do all things through Christ who strengthens me! Oncotype score of 14
Dx
1/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Surgery
2/24/2016 Lumpectomy
Surgery
3/23/2016
Radiation Therapy
4/14/2016 Whole-breast: Breast
Surgery
6/9/2016 Prophylactic ovary removal
Hormonal Therapy
7/17/2016
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Jul 16, 2017 07:42AM
ThinkingPositive
wrote:
Just curious if your genetic test shows that you have PALB2 VUS should your children be tested? My genetic counselor says that majority of the time this just means there is something there but they don't know what it is and it's not the same as testing positive.
Dx
9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2-
Surgery
10/22/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant
Chemotherapy
12/4/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Hormonal Therapy
Femara (letrozole)
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Jul 16, 2017 09:59AM
Lovinggrouches
wrote:
I was told that the result doesn't change my treatment plan because they don't know if the VUS puts me at higher risk or not, but in my mind, because of being diagnosed at 41, it does. This is why I have joined two studies to help them figure it out. If I had children, I would want them tested. They recommend for younger people in family that tests positive, to start observation 10 years ypunger
+ PALB2 VUS. I can do all things through Christ who strengthens me! Oncotype score of 14
Dx
1/2016, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
Surgery
2/24/2016 Lumpectomy
Surgery
3/23/2016
Radiation Therapy
4/14/2016 Whole-breast: Breast
Surgery
6/9/2016 Prophylactic ovary removal
Hormonal Therapy
7/17/2016
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Jul 16, 2017 09:09PM
Hopeful82014
wrote:
I would thoroughly discuss the question of testing offspring with your genetic counselor before presenting it to them as there are many issues involved. Particularly with a VUS rather than a known deleterious mutation I think you can take the time to work through this carefully.
Dx
2014, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR-, HER2-