Rad51d gene

Hi there, I am one of the champions here in this group and I just noticed your post hasn't had any replies yet.  My answer will bump you back to the top of the group and hopefully someone with the relevant experience will be along soon. Best wishes. 

Hi, I'm 38 and also have RAD5!D. I'm thinking to get prophylactic mastectomy and salpingo-oophorekto! my. I wish you all the best! As the mutation is so rare I'm glad to connect with others who have the same. May I ask what kind of cancer runs in your family? Anything else besides breast and ovary cancer?

Hi im 35 and have rad51d inheritedfrom my father. I have a older sister same parents who did not inherit the gene we have the same parents,I had a full hysterectomy 2 years ago and now on hrt. I'd love a double mastectomy but nhs dont seem so keen. Yearly breast exams from fourty onwards. My risk is in the high 40s% The surgery i had was preventive as my female family members before me usually passaway between the age of 34-42 from breast cancer.

Hi, thank you for your reply, it's always good to connect as there are so few of us. 

Wow really? All the female family members for breast cancer so early? That's super scary :( How many of them? And RAD51D is the only mutation in that family?

And do the male family members or your father have any cancer problems as well?

I did my mastectomy but still fighting for health insurance to cover the costs.

And I haven't yet the hysterectomy or Salpingo-Oophorektomie. Did they recommend hysterectomy too? In Germany they don't but I'd rather include it if possible. 

How do you feel with the hrt?

Hi, thank you for your reply. My grandmother was German and died of breast cancer at 42, just six months after giving birth to a daughter.

She had three daughters, two of whom carry the mutation. The older of those two, my aunt, had breast cancer at around 40 and underwent surgery and treatment. Her cancer later recurred, but she is still alive. My younger aunt also carries the mutation and has had a preventative oophorectomy. As far as I know, she hasn’t had cancer.

The older aunt’s daughter, my first cousin, died at 34 in 2022, six weeks after having both breasts removed and being given the all-clear. From what I understand, the post-mortem found that the cancer had spread into tissues in her back, which caused her death. She donated her body to science, and it was only following her death that RAD51D was identified in our family.

My dad was also a carrier, but he did not have breast cancer when he died. RAD51D is the only mutation I’m aware of in our family.

I’m estranged from that side of the family, but I briefly got to know them enough for them to give permission for genetics to share their information and assess my risk. My understanding is that my estimated breast cancer risk is around 48%, and I’ve been offered yearly breast examinations from the age of 40.

I believe breast cancer has affected women across seven generations of our family, although I can’t verify the full history because the older German records were reportedly destroyed during the war.

As far as I’m aware, there haven’t been any ovarian or other reproductive organ cancers on that side of the family. That was why I was initially confused about being offered a full hysterectomy at such a young age.

Regarding HRT, I was advised that it would help protect my bone health following the preventative surgery, because the hormonal changes could weaken my bones and increase my risk of osteoporosis.

To be honest, I’m only just starting to feel more like myself again. I became very depressed during the first year after surgery, and I believe the hormonal changes and menopause symptoms contributed to that. It has taken time to start feeling settled again.

It’s a frightening history to live with, so it helps to connect with someone who understands.

Thank you, that's helpful to know. And yes it feels good to connect as it's difficult for someone not affected to understand how it feels. 

My hope is that with mastectomy and later hysterectomy I will not have a big cancer risk but to be honest I don't know if they already know enough and if there are other cancer risks too.

Did your dad have any other cancer?

It's interesting that he was from Germany as I am too. 

Also every country and health insurance has different opinions on what is necessary. Here they don't do full hysterectomy.

I'm still hesitant to do the Salpingo-Oophorektomie because I wish I could have another child maybe and I'm worried how the hormone changes will affect me psychologically as I usually have very severe PMS already... do you think your depression came from the HRT/lack of hormones?

In my family it's from my mum's side and she is still healthy luckily. We don't know if she had it from her mum or dad. My grandma had pancreatic cancer at 73 and my granddad had prostate cancer at like 80 years.

My grandma's parents lived until like 75 without cancer. My grandad' dad both died very early from diabetes. So it's difficult where it comes from.

Thank you for sharing that with me. It’s uncanny that your grandmother was German too. I have three children myself, but I was offered a risk-reducing oophorectomy, with the option to keep my womb and preserve some eggs. I declined because of my high risk and because I had already completed my family. I understood that the eggs could potentially be implanted back into the womb at a later date, although I’m not sure whether that would be suitable or available in every situation. I do worry about my two daughters, who are both under 18. I’ve been advised that they have a 50/50 chance of carrying the gene. I’m hoping that neither they nor my son carries it. My clinician also advised that my son’s sperm could be screened and washed to reduce the chance of passing the gene on if he does carry it. I really hope this helps and reassures you that you do have options. Are you currently in Germany? I’m based in England, where risk-reducing mastectomies aren’t usually offered unless you push for one and have a confirmed risk higher than 30% through the genetics department. I know that in the States they may remove both reproductive organs and the breasts, but in the UK this is not yet generally recognised for both breast and ovarian cancer—only ovarian cancer.

I think part of the difficulty for me was that, with a full hysterectomy and removal of the ovaries fallopian tubes and cervix, you go into forced surgical menopause immediately. That is very different from going through perimenopause gradually and then reaching full menopause naturally. The sudden change in hormones can make the symptoms feel much more intense and overwhelming, and it was hard to adjust to the idea of going through that all at once. It also took several months to acquire hrt methods that was right for me. I am now using a spray, prior to that had tried transdermal patches absolutely awful and gel before that. Also I hadn't been informed or even thought this could affect anybody else but my poor male dog had changes to his health because of skin to skin contact via myself. You have to cover the skin its on or it can be absorbed by others!!!

I too suffered from ridiculously painful heavy periods feom the age of 11, and had previously been diagnosed with polycystic ovaries in my 20s. My fathers father died of prostate cancer, . I happened to be in the breast clinic today and read in their leaflets that removal of breasts dose not remove all risk as often tiny bits of breast tissue can remain. Both sides of the family have a history of diabetes. Dad had type 1 managed via injectable insulin 

Thank you so much for sharing all of this with me.

Yes, both sides of my family are German and I currently live in Germany.

I also have a young daughter and hope she doesn't carry it, but they will only test her once she is 18. 

In Germany for this gene, they usually only do the oophorektomy, no hysterectomy and no mastectomy. Do they recommend hysterectomy in the UK?

It was only because I read a lot of studies and found out that the especially deadly triple negative breast cancer is much higher with this gene, I just didn't want to take the risk and feel worried all the time before the check ups etc. Especially as I'm a single mum, I couldn’t fathom to maybe not be there anymore for my daughter. So I got a written recommendation from a genetic board to support my mastectomy and found a doctor who did it. My health insurance is still refusing to pay though and it will likely end up in court. But still, for me it was all worth it.

Yes,they cannot promise you 100% risk free, because there a micro cells that may be overlooked, for example along the skin, but still it's a very strong safety net. You can do a mrt a few months after the mastectomy to see if there is tissue left. And even then, it only like 1-5% chance you would develop cancer, so much lower than the general population.

Why did the recommend full hysterectomy? Here they advised against it and only recommend oophorektomy. But I guess I would feel safer if they do both and hrt is also easier as you don't need progesterone. Do you have any physical problems from not having a womb anymore?

So your dad didn't have any cancer right? That's at least a bit reassuring that it might really mostly only affect breast and ovaries.