hi
Im not all together sure about this faulty gene. Was diagonsed with b cancer after finding a lump on my 35th birthday. Genetics told us we might have faulty gene but couldnt test. my grandmother died at a young age with overain cancer - also 5 months after my husband died my mother in law died of overian cancer and was very distantly related. It said I would be sent for after hitting 35 - on the day i found my breat lump and have grade 3 cancer and one lymph node involvement (thought it would be lots more). Im really scared in case it has spread already im the biggest chicken ever and just had my masectomy and lymph nodes out 6 wks ago - I was terrified after never ever been in hospital and having a majore fear of needles - to be honest Im doing much better than I expcted, was bridemaid after 4 wks and am big chested and was terrified of everything - worried Im getting too much back to normaltiy and chemo gonna hit me so hard - anyone else simialar?
Lisa
x
I can understand what you are undergoing.Was the grandmother…your dad’s mum? . The chances are 50% transmission with genes such as braca1 and braca2. My mum got the braca1 gene from her father . My mothers sister died of ovarian cancer in her 30’s.My mother had bc aged 47 yrs.I had it last year age 44yrs. Try to find more detailed family history. The geneticist did not do braca gene testing in me as there was not living relative. I believe that I would have had prophylactic surgery done if I had my braca1 status known before.Can I suggest to you. If you are really worried about this, there are private companies such as genewatch which can offer you these test at some cost[I believe its pricey…no harm in checking] Only problem is…there are many genes yet undiscovered. Therefore if you have a negative test,it does not mean you dont have a faulty gene. However on positive side, if you know you have a faulty gene…you can go ahead with prophylactic surgery on other breast and get ovaries removed as well.
Hi lisaf
My name is also lisa.I was diagnosed 3 yrs ago when i was 34.I was in the process of genetic testing but put it on hold when diagnosed.I had a lumpectomy,20 lymph nodes removed which were all infected.I had chemo and radio.I then went back to be tested with my sis.I have the Braca1 gene,my sis was fine.I then had my ovaries removed as it lessons the chance of reacurance.In oct last year i had a double mast and reconstuction made from my tummy.I am now back at work and doing fantastic.Just wanted you to know you have to take one day at a time and whatever you have thrown at you,you will get through.9 close family members had it before me including my mum,i didnt have to go far for information and support.It’s the not knowing thing’s that would have got me down,so any questions you have got i will answer them as much as i can.
lisab
Hi Lopez
Thanks for your info you sound really positive. It doesnt seem to stop does it. It sounds like you have done really well and hope I can be as strong as you. Im scared witless about surgeries and chemo as I the biggest baby ever! Got through the masecotmy and only one lymp node involved but like you say its the not knowing - the overies out seems really painfull too but know it must happen.
Off to the oncologist tomorrow whch Im scared off and think chemo week after so fingers crossed I will get one more weekend of fun before it all starts - thanks for your positive comments its helped me out today
xxx
Hi lisaf
Hope your oncology app goes okay.Having ovaries out was fine,look into keyhole surgery.Two wks on sick and then back to work.Did i read it right that you lost your husband,if it is you have been through the mill.My mum had BC 14 yrs ago,they told my mum me and my sis could have a mamagram at the age of 35,too late for me but my sis went and they told her their was nothing they could do for her only genetic testing.It all comes down to funding at the end of the day.Dont be scared of the injections during chemo the nurses are fantastic,not too keen on them myself.My viens broke down half way through and had to have a pick line(no more needles) its just a line they insert in your main vien,doesnt hurt one bit,needs a bit of looking after but they can give your chemo down it and take blood from it,it was great.9 members of my family have had this up to now,we all have the BRACA1 gene.Which hosp are you going too.Better go know little boy getting annoyed that i am ignoring him,let me know how you got on.
lopez
Hi thanks for the info. Oncology appointment was okay but just gone downhill dont know wether its the chemo or the info he gave. Told me prognosis was poor which ea snext to bottom, was gutted as with news from Breast nurse and results thought I’d be higher up the chain. Did say that with all the treatment 80% survivial rate over 10 years - wierd when they base your life on ten years but suppose dont know where you sit with that. It sounds like you are doing well. Thanks for info re overies I just panic at thought of any surgery. He said he would mention on his form for genetics to get in touch with me. If they take my overies out suppose it eliminates the risk!!
Thanks for all your help its much appreciated - hope your little boy didnt fall out with you!!! It sounds like you are doing well - does the fear go away?!?
I live inCumbria so going to the local hospital for chemo which is 5 mins away - my dad’s a porter there too so he’ll be making a nuisance of himself Im sure!!! Bless. Rads will need to be at City nearest me so hour treck everyday!!
Yes my husband died at the age of 30, he suffered depression so doesnt take much working out how he died! Was really enjoying life again too which I never thought I would. His mam also died 4 months after him of overian cancer its been hard with this happening as lots of the same feelings of helplessness and why me return but gonna try and get some sleep and enjoy my weekend with friends.
thanks again
Lisa
x
Hi Lisa
BCC have written a factsheet about familial breast cancer which you may find useful to read, just follow the link:
breastcancercare.org.uk/docs/familial_breast_cancer_updated_may_06_0.pdf
Please use our helpline if you feel you need a bit of extra support or further information, the number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi lisa hope you had a good sleep its a lovely day today shame i have to go to work soon.When i was dx i had an 85% chance of the cancer coming back maybe not in the near future but it would have most definatly come back.Having my ovaries out it went down to(maybe out a little)around 65% and then when i had my Double mast and recon it puts me right down to just 6% which is just above an average person.Keeping my nipples would make it go up by 5% so i got rid of them.Hand on heart the fear has not gone away i just put it to the back of my mind,focus on the good things that are happening around me.It does creep up occasionly,i have a little think,maybe cry(yes you are intitled to wallow a little)then get back on track with life.These minor episodes lesson as the years go on.Sorry to hear about your hubby he was so young.Depression is so a shit thing to get very hard to get out of(as you will know first hand).The feeling of why me has never left me i still say it today.My mum has had it twice and shes a real inspiration to me.Nearly everyone in our fam who has been dx have had reaccurance more than once with a large gap in between.4 have had the same op as me and are all okay no reaccurance,i lost a granny and a cousin who was only 39 leaving 3 kids behind she started the genetic testing route,but died before we got the results. It took 7 yrs to find the gene where as now they know what it is it takes 6wks.I will be eternally gratefull to her.It didnt help her but it has us and her 2 girls.Got to go now work calls speak soon have a nice wkend.
lopez
Thanks Lopez
Having a nice weekend - jsut been to a christening, everyone throws their babies at me and I do love them but think Ive switched off as no I cant. Off out now for a meal with friends so going to enjoy last night out for a while.
Sounds like youve had it rough with your family but your mam does sound like a inspiration.
Lisa