Parents of children with cancer

This group is designed to provide support to parents who are struggling with their child's cancer. This includes adult children who have cancer.

My daughter has BRCA1 gene

bizzylizzy1960
Posted by

Hello, my daughter was diagnosed with breast cancer in February 2017. She has undergone chemotherapy, surgery and radiotherapy. She was tested for the BRCA1 gene in January 2018 because her auntie died of ovarian cancer in her 40’s.  My daughter’s results at the end of May confirmed she does carry the gene. So her father and I have been referred for the test to see who carries the gene, to address the wider family implications of this.

But Also In the last few weeks my daughter has been experiencing acute pain in her right hip, and it’s been getting worse.  So she had an X-ray and they have said that her bones look fine, but they spotted a ‘subtle lucency’ (shadow) on her X-Ray behind the bone which concerns them, So this Monday She had a full body bone scan, and on Friday an MRI. 

So now we have the anxiety of waiting for her results. 

I have joined this group for support because I am experiencing such anxiety And instead of keeping my cool, awaiting the outcomes, my mind is wandering down the various paths in a way that is keeping me awake at night, but I am afraid to share this with my daughter, I want to be strong for her. 

I want to be open and honest about how hard this period is for me, and not sugar coat it. And I’m hoping I will find people on here in a similar situation. Thank you for listening xxx

JulieWWW
Posted by

Hello,

I have just joined the group and read your post.  I really do hope your daughter's MRI scan came back with the results you wanted.  My daughter was also diagnosed with breast cancer in March 2016.  She doesn't carry the BRCA 1 gene and no-one in both my or my husband's family have had any form of cancer.  She had months of chemo, fertility treatment, a mastectomy and reconstructive surgery.  She was clear from October 2016.  She was 21.  In January this year a routine scan was inconclusive and further investigation showed that it had come back in both her liver and spine. 

As her mum, I struggle to cope.  She is responding well to treatment but they have said it is treatable but not curable.  I don't know what that means and, if I am honest, I am scared to ask. Her original prognosis was terrible but she seems to be responding well and they are pleased with her results. 

I have always been determined that we wont be defined by cancer.  It can shape us but not define us.  The reality is that it consumes me. I am terrified of what's round the corner, that I cant protect her or my son who struggles to accept her diagnosis.

I understand your anxiety and I feel for you.  You are strong because you have to be and I am sending you positive vibes.

Julie

Dianie
Posted by

Hello, I am new to this group.

I am so sorry. I completely understand the anxiety. It is gut wrenching.

This past September 2018' My daughter who is 32 found out she has Melanoma. A mole that I nagged her to get checked for nearly a year was biopsied by our Family Dr. 

She had surgery to remove a baseball size tumor on her chest and also 3 swollen lymph nodes under her arm. Results came back Metastic Melanoma stage 3 c . This type of cancer responds to immunotherapy. Before they could start treatment they needed to test to she if she was BRAF positive or BRAF negative. Positive gives you 3 treatment options where negative gives you 1. Well, my daughter is positive but her mutation was very rare and she only has one option. So her 1st monthly treatment of Obdivo was in Oct. 2018'. Fatigue, body aches some nausea but not to bad. In November she had her 2nd treatment. She felt far better after this treatment. she had less fatigue and her body aches were not as bad.  About a week before her 3rd treatment she started having really and pain in her spine. She kept saying Mama I know there is a tumor there. She had her 3rd treatment and several days later she was really in so  much pain. She called her oncologist and they did an MRI of her spine.. She has 2 non- operable tumors... more scans a few days later revealed tumors in her chest, abdomen and under her arm. Her prognosis is grim... they stopped her only treatment as it wasn't working.She is Scheduled this coming Friday for surgery to remove the tumor from her chest and to biopsy it to make sure it is Melanoma. I guess sometimes you can have a completely different cancer pop up. This is what they gave us so far as a prognosis... stage 4 cancer, radiation for the tumors on her spine to shrink them ( wont cure, but will help with pain.) And a possible clinical trial a scientist is working on. I am just devastated!!!!! I had to see our family doctor the other day and he took my hands into his and held them tight and asked me what we were going to do about the kids. He told me to get everything legalized right now because my daughter is running out of options! 

I'm just sick!!!! I cant sleep, I have much anxiety which my DR. did put me on a low dose of anxiety medication. I have so many emotions running through my head and pain in my heart.. pain for my grandchildren, pain for my daughter...

And... I also feel alone.. I have amazing people in my life. Some don't know what to say or how to act. some are very caring but I don't have anyone to talk to that is going through this similar situation. that is what led me to this group.

Thank you for listening.