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All TopicsForum: High Risk for Breast Cancer → Topic: CHEK2 Mutaion

Topic: CHEK2 Mutaion

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jun 21, 2016 03:50PM

goldeelox22 wrote:

I found a lump in January that I had removed and I don't have breast cancer but I have all of the markers for it. LCIS and hyperplasia. I also have an "unknown something" in the same tumor. Numerous pathologists have looked at it. Deaconess, KU Med, Brigham Womens, and someone in Michigan. None of them have seen this. I had genetic testing done and just learned that I have CHEK2 Mutation. They are recommending that I have a double prophylactic mastectomy. I am 47 years old. Never thought I'd be having to make this decision. I am looking at nipple and skin saving mastectomy. On top of all that I learned that my kids both need to be tested. Anyone else been here?

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Jun 21, 2016 04:03PM Moderators wrote:

Hi Goldeelox and welcome to Breastcancer.org! We're sorry you're faced with this decision, but you've come to the right place for support. We've got many members here who are faced with similar decisions -- you're sure to get some responses soon!

You may also want to post your story and questions in the Positive Genetic Test Results forum to meet others.

Also, the main Breastcancer.org site has some great information on Prophylactic Mastectomy and also What to do If Your Genetic Test Results are Positive. We hope this helps!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 21, 2016 08:24PM BethL wrote:

Goldeelox-I found out I have chek 2 mutation last January. I was first diagnosed with breast cancer at age 38 and then again at 48. Had bmx in December and when I found out about the chek2, I inew I had made the right choice for me. I have 4 sons and so far haven't had them tested, but planning on it at some point. I'm sorry you're dealing with this but it's good you know before you possibly end up with cancer. You've found a site full of support from others who know what you are going through.

Dx 6/2005, DCIS/IDC, Left, 2cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 8/2015, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR-, HER2- (FISH) Surgery 12/4/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jun 21, 2016 09:33PM Slappy-Squirrel wrote:

I tested positive for the Chek2 gene as well. I had BMX, no reconstruction and I'm glad I did.


Oncotype score of 18 - not doing chemo. Full hysterectomy 8/4/2014 starting anastrozole 9/3/2014 Dx 4/7/2014, IDC, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jun 21, 2016 11:05PM mustlovepoodles wrote:

Yes, I tested positive for Chek2 and PALB2, both of which cause BC, so the breasts had to go.  My older children are 29yo DS and 23yo DD.  They wanted to be tested because there is history of male BC and one aunt who had BC at age 24.  DS came back negative for both. DD came back positive for both. Obviously, we are all devastated. If there is one bright spot in all this, it is that DD is very health conscious so I know that she will follow her health closely. DS is not. He never goes to the doctor, doesn't take his meds correctly, drinks too much, and generally doesn't take care of his health.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jun 24, 2016 11:17AM goldeelox22 wrote:

Thanks to all of you who have replied.

I had an MRI yesterday and am awaiting the results. I know that I am going to have to do the mastectomy but I'm super scared. Yesterday was very hard for some reason. It's a very emotional time.

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Jun 24, 2016 11:19AM goldeelox22 wrote:

I'm sorry one has tested positive for CHEK2 :( That is my worst fear for my kids and family. Just found out that another 2nd cousin has the same type of rare tumor as me.

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Jun 24, 2016 11:41AM goldeelox22 wrote:

Thanks for steering me over to "positive test results".

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May 11, 2017 04:32PM Meganfox07 wrote:

hi. I just tested positive for the Chek2 gene but negative Braga 1-2 I'm just researching this and I saw you opted for the surgery?

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May 11, 2017 04:34PM Meganfox07 wrote:

hi. I just tested positive for the Chek2 gene but negative Braga 1-2 I'm just researching this and I saw you opted for the surgery?

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May 11, 2017 06:24PM mustlovepoodles wrote:

Not sure who your question is directed toward, but yes, I had prophylactic BMX. Anything you need to talk about?

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/19/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/3/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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May 23, 2017 01:10AM Amyv38 wrote:

I tested positive for chek2 in 2015 . My Dr said she didn't have much information on it other then that is was a mutated gene. She handed me a printout with very little information on it and told me she had put in referrals for both a mammogram and colonoscopy . Both tests came back fine. It's 2 years later, I'm 38 with a family history of both breast and colon cancer on my fathers side.

Recently I started experiencing pain on the right side of my body. First my shoulder, then shortly after noticed my armpits lymphoids were extremely tender and swollen, my right Breast is also very swollen feels very heavy and seems to be dropping. I started a new job and my insurance won't go into effect for another 3 weeks . Any thoughts on symptoms

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Jun 18, 2017 11:48AM Toughiebird wrote:

Is there any concern that reconstruction has any links to future cancers in chek2? i have chek2 ( teh S428 one - not the 110del) just made the choice to have prophyatic BMX, after a tiny DCIS found in left breast and had lumpectomy in May, suspicious dysplasia, necrosis, etc - all removed in last months lumpectomy but need to make choice to do bmx or radiation, tamoxifen ultra surveillance. i fear some of this surveillance because do every 6 months MRI and then 6 months later 3d mammogram and ultrasound and MRI and 3d mamogram did not pick it up. I do not trust this mutation and recently did full genetic counselling in NYC majoe cancer center but scared and looking for info with those that had mx but cancer reoccurred or new aftre the mx - in same breast/ thx for any information to share...

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Jun 19, 2017 04:06PM - edited Jun 19, 2017 04:07PM by Misty1

Get the BMX. You won't regret it! Peace of mind with the CHEK2. I just did my rt side proph after chek2 diag in 2016. Despite complications, one year later, done and thankful! My PS said chances of cancer related to implants is soooo rare. I'm not worried and neither is he

Dx 6/19/2008, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR-, HER2+ (FISH) Surgery 7/1/2008 Lymph node removal: Sentinel; Mastectomy; Reconstruction (left): Tissue expander placement Targeted Therapy 7/30/2008 Herceptin (trastuzumab) Chemotherapy 7/30/2008 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/17/2008 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/24/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 5/19/2016 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement

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