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Ovarian/BRCA2+/DCIS
ML
6 Posts
Greetings everyone! I am new to the site and looking for a safe place to meet people who are willing to talk and share. Here is my story:

-2019 diagnosed with stage 1a ovarian clear cell carcinoma - had a radical hysterectomy
-2020 I had genetic testing done - to which my surprise I was diagnosed with a mutated BRCA 2 gene (explains the ovarian dx)
-2021 I was put into a high risk breast program with mammo/mri monitoring
-2022 on scan doctors saw pre cancer cells and I was diagnosed with micro invasive DCIS
-2022 I had a bilateral double mastectomy

I am a happily married 49 year old and a mother of 2 beautiful kids (whom I worry I may have passed on the BRCA gene).

Thank you for taking the time to read my post. ☀️
7 Replies

@ML Welcome to the site and thank you for sharing your story. You've gone through a lot over that last few years. No one wants to have this much experience with cancer.

The tone of your post implies that you are okay emotionally, at least at the time that you wrote your post. That's great to hear, but please remember that you don't have to be happy all the time. Feel free to vent here if you need to. There is a reason for the term “emotional rollercoaster”.

I was diagnosed with DCIS and IDC (Invasive Ductal Carcinoma) in 2011. I had a single mastectomy followed by chemo and radiation. I took tamoxifen for 7 years and had all kinds of other surgeries to reduce the risk of a recurrence. Feeling slightly hollow now, I'm hoping that is the last of my surgeries.

I understand your concerns about potentially having passed on the BRCA+ gene. I was never tested, but I was sort of glad that I had two sons, although I know men can get breast cancer too.

By the way, if you want to reply to a particular post, select reply right below it and then username of the person who wrote the post will automatically be populated for you. This “tag” will tell the person that something they posted has a response. If you want to tag someone else within your post, type @ sign followed by the username. As you type, names will start to appear that match what you are typing so that you can select the right person's name. When you select the name, the name will appear in blue, so you'll know you've done it right.

In addition to all the great posts, there might be some groups that might interest you.

cancertakesflight

Note: If you click on any of the tags below, it will take you to other posts that have been tagged in the same way.

#DCIS #ovarian cancer #BRCA #BRCApositive

supersu
1297 Posts

@ML
WOW! thats been a couple of busy years. my head is spinning and I'm just reading it - ha ha

very good morning to you and welcome here.

I can completely understand your worry about ‘passing on’ the gene….I think mom's are great at worrying about their babies. can you reframe it to: ‘knowledge is power’.

just as diagnostics discovered your breast cancer at the micro stage, your children can be surveilled closely to ensure early detection for any possible issues, non?

can I ask, how did you recognize the first cancer? did you know you might have the variant?

my story: because of my fathers breast cancer, it was assumed that I was BRCA + also, (he was never tested),(funny enough I tested negative when I did get my breast cancer), so I was followed VERY CLOSELY.
I tested positive for early stage breast cancer in 2020. I never felt a lump, or was unwell. if not for the robust diagnostics schedule I was on, who knows where I would have ended up! thankful for the science & technology we have available to us.

thank you for sharing your story.

enjoy the summer with your beautiful family.

cheers
su

#BRCA #BRCA2 #ovariancancer #breastcancer #cancerinthefamily #sciencesaveslives

Sadie12
207 Posts

@ML

Hi there! I'm also from Ontario and we share some parts of our story…here's mine:

-2020 diagnosed with stage 3 High Grade Serous ovarian cancer - had a radical hysterectomy, including removal of omentum, 6 rounds of chemo
-2021 I had genetic testing done - I was diagnosed with a mutated BRCA 2 gene

2021-started 2 yrs of Olaparib maintenance (curious, were you on it?)
-2021 I was put into a high risk breast program with mammo/mri monitoring

My 3 children are not biological, so not tested for BRCA2. One of my siblings later tested positive and his 2 daughters were as well. My nieces are about 30, just starting their families, so although I am sorry that they are BRCA2+, I am glad that they received the knowledge and can be monitored.

Sadie


JustJan
1728 Posts

@ML welcome to the community! I hope you find it helpful And supportive as I have. Our stories are somewhat similar. I was diagnosed with triple negative breast cancer in January 2019. I was 59 at the time. I had a lumpectomy, declined chemo and had 16 rounds of radiation. I was referred for genetic testing. In May I was also diagnosed with high grade serous ovarian cancer (stage 1c). I had a total hysterectomy and omentectomy. My genetic testing was fast tracked and I had the BRCA1 gene mutation. I had chemo (finished end of October 2019), followed by two years on Olaparip (Lynparza). I had a bilateral mastectomy March 22nd.

I have two grown children, a son and a daughter. They were tested and both are negative. The gene in our family stops with me. My one brother test positive but has no family to pass the gene on to. He is being closely monitored for prostate cancer.

I wish I had known I had the gene because Incould have done some things to prevent the cancer from occurring. Like @Sadie12 said, knowledge is power.

#BRCApositive #ovariancancer #Breastcancer

ML
6 Posts

@cancertakesflight Thanks for the info 😊

ML
6 Posts

@supersu Thanks for sharing your story with me as well.

My primary (clear cell ovarian cancer) was detected by CT scan. I was feeling a lump in my lower right pelvic/abdominal area, something that just didn't seem right- something “squishy." I went to my family doctor who sent me for an ultrasound (it was a mass), who then sent me for a CT scan and the rest is now history. I am not aware of anyone in my family with the mutated gene. Not sure which of my parent passed it on. No one in my family has had either ovarian or breast cancer. Not sure 🤷‍♀️

ML
6 Posts

@Sadie12 Hi Sadie, thanks for sharing your story. To answer your question, No, I was not on any maintenance.

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