update on my story.

[alanadan]

Hi All.Its been a while since I was on this brilliant site, TO re-cap , I lost my mam in 2012 to OVarian cancer, the last 3 years have been so hard, so painful and I totally know what its like to be broken hearted. My mam fought Breast cancer 6 -7 years before she was diagnosed with Ovarian cancer and from her medical history , I decided to seek some medical advice for myself. I inquired about the gene test as I am very conscious of what could happen given the history on my mams side of the family. I went to see a consultant in the Genetics clinic here in Dublin and after doing out the family tree etc... and with taken my age now into consideration he advised me that I having my ovaries and tubes removed would be a safer option, I do not have any form of cancer and I pray I will never. I watched my mam and sister both fight cancer with both sad endings. I was then referred to the mater hospital to see a great consultant and together we spoke about my families history etc..... I am now scheduled in for a full hysterectomy, I am coming up to my 44th birthday. I am married with two beautiful children, aged 18 and 11. I am finished having children and now I just want to safe guard my health going forward. I will have the gene test done after the operation so that I can advise my two children later on in life. I have chosen to speak out about this because in case anyone else is worried and they dont know how to go about finding out what their best options or what they should do, everyone is different but I personally have worried for the last two years that I may get ovarian cancer or cancer of that region. I have now got control that I can prevent this from happening from deciding to have a full hysterectomy. I suppose the only thing I will be worried about is going straight into the change as i have no idea what to expect from this, I hear all different stories so I reckon everyone is different. I will brace it when it happens, I reckon. I consider myself very lucky but I wish my mam had of had the same option, mam had a hysterectomy when she was 42 but they left the ovaries there, I wish they had of taken them away all at the same time. I believe that my mam is now my driving force and if anyone would like to share any stories with me or have any questions, please feel free to message me. Hope everyone is keeping well. kazxx

[Hidden]

Hi Kaz well done for taking back control of your life, I admire you for your determination and you are making the correct decision. Hopefully your gynae can help you with hrt be it pills or patches etc. I know nothing about that as I was post menopausal when I had hysterectomy. You have been through a lot with your mother and your strength amazes me. Wishing you the best for your op and post op. No lifting, hoovering etc for six weeks and lift nothing heavier than a cuppa,

[alanadan in reply to Hidden]

Hi Suzuki. Ah thanks so much for your lovely reply, so nice to be back in touch. thanks for the tips. I hope you are keeping well and you are doing good. Wow no hovering, no cleaning, no lifting, I am holidays....haha

Yeah I have picked myself up a bit, I just take one day at a time now, losing my mam devastated me beyond words but my mam would not want me to give up or stop living so for her and my children, I will keep going for sure.

thanks again for the positive feed back, much appreciated. xx

[TinaB1]

Hi there and welcome back.

I was just wondering why you're having a full hysterectomy when the consultant said just the Fallopian tubes and ovaries at first. The oophorectomy and salpingectomy can both be done without removing the uterus. Maybe it's harder to do a laparoscopy as a joint procedure. I'm not sure. Or is it that you're having problems anyway?

The other thing I was going to ask is why the gene test is post op when part of the planning about what to do is having the information. Personally, I'd want the Fallopian tube and ovary out in any event, but I'm just curious about what the doctor's thinking is. Xxxx

[alanadan in reply to TinaB1]

Hi Tina, I met with the genetics doctor first and he mentioned the ovaries and the fallopian tubes , then he referred me to the consultant after this. I had this question in my head, why would they leave my womb there when the ovaries would be gone and my tubes, so I brought this up with the consultant and he listened to what I had to say, I did have a few problems with my periods before all this started and I got the mirena coil in, I got this put in for that reason and for contraception aswell. I am at a point that I just want to minimise my risk of getting cancer so hence everything is coming out. I am content and happy with this 100%, in relation to the gene test, I was advised that with or without the gene test I would need to do something because of the risk factor and the family history on my mams side. If I got the gene test done and I was a carrier then an operation would have to be done but if I didn't have the gene test done , something would still have to be done and it all comes down to the risk factor really. It is better to do something now then wait for me to go through the change naturally. I will have gene test done to make sure I can advise my own two children on what to do if I did have the gene, my mam never got the test done so we will never know and she has no siblings so sort of hit a brick wall there. I had some breast lumps removed over the years and my mam had too so I just feel that I could have a strong link to her gene, stronger then I think. hope this all makes sense. thanks a mill. kaz

[TinaB1]

You're doing what is right for you which is a good thing. I think I'd be the same. Xxx

[alanadan in reply to TinaB1]

Thanks Tina, I feel like I am safe guarding myself so please god everything goes ok. I hope you are doing good too. its lovely to be able to chat to other women on this site. look after yourself . kaz xx

[thesilent1]

Hi Kaz, I think you're wise to do this. Good luck with the surgery and follow Suzuki's advice, no housework whilst recovering. Ann x

[alanadan in reply to thesilent1]

thanks a million Ann, it is so lovely to get feed back. Hope you are doing good. I will make sure that I heed everyone's advice. xx

[sharonforce]

Hi Kaz

Sorry to hear about your mother. I have the BRCA mutation which I have inherited from my mother. I am very surprised they are doing the genetic test after your operation and not before. If your mother had the BRCA mutation then there is a 50% chance you have inherited it but there is also a 50% chance that you haven't inherited it. In my family myself and one sister have inherited the mutation but our other sister hasn't.

It may be that you want to go ahead with the op regardless of whether you test positive or negative - good luck and hope all goes well for you.

I also run a support group for people affected by hereditary breast or ovarian cancer and happy to answer any questions you may have.

Best wishes

Sharon

[alanadan in reply to sharonforce]

Hi Sharon, Thanks for the reply, really appreciate it. I was given the choice of either having the test done first and wait for the result but also they stressed to me and it was their opinion, with my mams history of having breast cancer and ovarian cancer , I would be better to do something for myself either way, so whether I had the gene or not. I have decided to go ahead with the operation and then get the gene test done and this is purely for my children's sake as I have a daughter and a son. I suffer a bit with my tummy and I feel that I will always constantly worry about ovarian cancer. it took my mam so abruptly and it was all so unfair. I didn't take the decision lightly , I thought about it all for months and discussed with my Husband, friends etc... I am 44 years old in December, My family is complete so for me it is the best way forward. I may never get ovarian cancer but I don't want to always have that doubt there so I feel the operation will totally safe guard me.

Do you mind me asking if you have decided to do anything for yourself regarding and knowing that you have the gene. xx

[sharonforce in reply to alanadan]

Hi Kaz

I totally understand you going ahead with the operation. I wish I had done so when I had gynae problems several years before I developed ovarian cancer.

I found out that I was BRCA 1 positive five months after being diagnosed with ovarian cancer. I had had a full hysterectomy when I had my cancer surgery and then chose to have a prophylactic double mastectomy to reduce my risk of breast cancer (due to the BRCA mutation). My sisters, son, two daughters, mother, and cousins have all since been tested and those that tested positive have been proactive in reducing their cancer risk.

Also having the BRCA mutation has influenced the treatment I have received for my cancer.

You can see more about me and my support group (plus lots of info on hereditary cancer) here: facingourrisk.org/essex

Best wishes

Sharon

[alanadan in reply to sharonforce]

Hi Sharon, Many thanks for your lovely reply. God you have been through so much and I commend you on your bravery, I hope you are doing good now and everything is ok for you healthwise etc...

Thank you for the link, I will have a look at that. really appreciate your information.

I will be happy when the operation is all over and I am back home and recovering and it will be one less thing for me to worry about. I get mammograms done one sometimes twice a year and I am happy with that as are the doctors. so I will just keep monitoring all of that going forward.

Will keep in touch with you, many thanks and look after yourself xx