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narwoo's avatar
narwoo
Member
10 years ago

Twins and ovarian cancer

Hi all

After my recent diagnosis in March and our mother's diagnosis 8 yrs ago my identical twin sister is now seriously looking at her own risk of getting breast cancer. She went to the GP this week and completed the online screening tool and the result came back "Cat 3-very high risk of breast and ovarian cancer". She has been referred to a specialist family cancer clinic for the BRAC testing but has to wait until Sept as that is when her next Mammogram is due. I have never been tested for the BRAC gene and I was told by the Breast Screen doctor that because my mother has breast cancer at age 68 my risk was no higher than the general population. My sister's risk just shot up after my diagnosis.

I am confused about the fact she might also be at high risk of ovarian cancer. I would have thought the odds of having the BRAC gene is really low ( i think it is 0.5% of the population) and therefore the chance of having ovarian cancer should also low. I haven't been diagnosed with ovarian cancer either. Her concern is that ovarian cancer is much more serious as there is no screening for it and as her GP said she was high risk and she can't get into a specialist until September that is causing some additional anxiety.

Frankly whether I have the gene or not is the least of my worries as I am so focused on just dealing with my recent diagnosis and also trying to cope with the extra knowledge they found cancer in 1 lymph node. My sister and I do have daughters so it is something I will consider down the track but  testing it is not a high priority for me at this stage but it is for her.

Just goes to show how devastating a diagnosis can also be on our loved ones as well. 

Narelle

 

 

 

 

 

 

BRCA1-BRCA2

4 Replies

  • narwoo's avatar
    narwoo
    Member
    10 years ago

    Hi Brenda

    I am sure she can invent a symptom that needs investigation. I was also looking at the Medicare site and Medicare will only pay for claims for Breast MRI's if the patient is under 50 with a familial high risk of cancer, We are aged 52. I had my MRI free at a public hospital but it looks like my sister may have to self fund one if she wants one for peace of mind. 

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    She should move up to Hervey Bay where because of the older population as a retirement town there is a screening clinic on every other corner and half of them bulk bill.

    Could your sister and her GP suggest bad period cramps or something and order an ultrasound of the uterus and ovaries inside and out? I got one after a ct scan showed I had fibroids and they wanted to take a closer look. No treatment suggested unless I get pain or something to alert them to have another look. 

  • narwoo's avatar
    narwoo
    Member
    10 years ago

    Hi Kath

    I haven't yet had a whole body bone scan but have been booked in to have it on Monday. I will also have a CT scan abdo/pelvis and chest next Wed. Part of the follow up from the lymph node biopsy and before I have surgery.

    You are right that whether I have the gene or not doesn't change what is happening now.  I have heard so much bad news lately that knowing if I have the gene somehow seems insignificant to me but I am aware it is a very important issue for my sister, niece, daughter etc. 

    Narelle 

  • primek's avatar
    primek
    Member
    10 years ago

    It certainly is. If your sister comes back with a positive gene then you can look at it then too. You currently would have had whole body scans etc that would have picked up any other concerns so it is not a priority presently. I too sit in that area where my risks are considered differently by different Drs. I have a half sister who had breast cancer and so did her daughter. But my other 4 sisters have not...nor my mother her sister her mother or her Aunts. So I considered from my mothers side low risk. But my fathers side...his mother, 3 sisters and a niece had either breast or ovarian cancer. I've  been vigilant all my life knowing this. When I was diagnosed, .knowing the risk...and my type of cancer,  I opted for a bilateral mastectomy. I await genetic testing to determine if I should have my ovaries removed too. It is difficult to know what is best. Once your sister has her results if pos then you would be fast tracked for a genetic appointment  too. My niece is very anxious about this. She has 3 daughters. I want to know too for my son's sake. My breast surgeon said to me though...whether you carry the gene or not it doesn't  change what we need to do today.  As I had a grade 2 (which turned out to be a grade 3 after excision) her2 breast cancer, which has a high chance of local recurrence, I decided on what I hope is ny best chance to reduce the risk. I am hoping all goes well with your treatment. I think your sisters reaction woukd be a normal one. Take care. Kath x