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Anyone tested positive for genetic risk but not had preventative surgery?

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Member

Re: Anyone tested positive for genetic risk but not had preventative surgery?

Hi Holeinone

 

I tested positive for BRCA2 6 months ago now and haven't had preventative surgery. I've not had either breast or ovarian cancers myself, but my mum has survived both. She also has a BRCA2 mutation and has had both a double mastectomy / reconstructive breast surgery and a hysterectomy but as a form of reactive surgery as opposed to preventative. Both surgeries were performed after she had children and she found out she had the faulty gene after being diagnosed.

 

As it stands, I've had both an MRI scan, and Ovarian scan & blood test, both of which are offered annually along with a two week fast track service if I ever found anything out of the norm. I don't currently have children so I've been gathering information from both the breast surgeon at my local hospital and the gynaecologist about egg freezing / surgery options etc just to have the knowledge if I wanted to go ahead in future. Prior to the Covid-19 outbreak I was also put in touch with a psychologist linked to making decisions on surgery as I feel quite unsure about having preventative surgery as it stands and that may remain to case.

 

Until I make a decision on whether I want children I will be following the annual screening and keeping a close eye on what's normal for me. So far my experience has been great and I've had tonnes of support from specialists, and no pressure what-so-ever around surgery from any of the specialists I've visited. They stress it's 100% personal and your decision, your hand isn't forced to make those decisions as everyone's situation is different. 

 

Hope that makes sense and helps, let me know if any questions at all 🙂

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Member

Re: Anyone tested positive for genetic risk but not had preventative surgery?

I don't have this issue personally, but a distant relative does. Her mom and grandmom died of breast cancer and she does annual screenings. It is the best course of action, there's clearly a predisposition in her family.

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Member

Re: Anyone tested positive for genetic risk but not had preventative surgery?

Thanks Helen,

 

In my head that's where I'm at. I think I would prefer the annual thorough MOT rather than preventative surgery. 

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Member

Re: Anyone tested positive for genetic risk but not had preventative surgery?

Hi,

I was diagnosed with breast cancer in 2004, I found out I had a mutation of the BRCA 2 gene in 2005.  Treatment for BC was lumpectomy, radiotherapy and then tamoxifen.  I had a hysterectomy and my ovaries removed in 2006 because I had fibroids and ovarian cysts caused by the tamoxifen. Since then I have had annual mammograms and breast checks, each visit I'm offered bilateral mastectomies with reconstruction.  I have to say that I have never wanted to go down this route, I'm very happy with my annual checks.  Since my treatment for BC I have been very well with no recurrence. Losing my ovaries and instant menopause at the age of 41 was tough, I probably would have hung on to them for as long as I could if it wasn't for the cysts, however I have to say that seeing as ovarian cancer is considered a silent cancer with no obvious symptoms until it has progressed quite far, I'm glad I did have the cysts which made the decision for me.  

Best wishes x

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Member

Anyone tested positive for genetic risk but not had preventative surgery?

I have been offered genetic testing due to family history (just breast cancer, nothing gynecological). I think this is something I want to have done but wanted to know if you test positive are you pushed towards preventative surgery? I'm still receiving treatment but my surgery was a lumpectomy, not really happy thinking about having to have further surgery. 

 

Anyone out there happy with just annual testing if they are deemed higher risk?