Jem31 - really feel for you having the double whammy to deal with. After BC twice and then finding I was Brca1 it was a no brainer for me and straight to double Mx with Becker implants but I am older than you so the decision is different. My daughter who s 30 found out in April whilst on honeymoon she has my Brca1 and has appointment with my surgeon next month to discuss what type of recon she could have. In her mind there is no question that surgery is the way forward but you obviously need to be 100% sure it is right for you. Take your time before you make your choice and speak to people that have gone down the the route of watching and waiting also. Having been through ultrasounds etc you might feel that that also is very stressful.
Once you have had time to accept yet another diagnosis and understand the implications you will probably wake up one morning and think yes this is the route I am going to take.
I wish you well with whatever decision you make and I am always here if you want to talk.
I was diagnosed with grade 3 TN in February this year, had WLE nodes clear. I am on 4 of 6 FEC. When I was given my diagnosis my Surgeon suggested It would be advisable to go for the genetics testing as my mother also had BC. I sent all the forms off last week and I was just wondering how soon dI’d it take you ladies to get the results from thistime? Justwondering as I keep hearing different time scales up to a year. My eldest daughter is 30 and is very keen to know ASAP. All advice gratefully accepted.
I think you should get an appointment with genetics in about 6 weeks although they are probably quite busy at the minute with the Anglian Jollie effect !
After that it would depend on if anybody in family have had a BRCA diagnosis . After blood tests it is about 8 weeks although if a family member with a BRCA gene gives permission probably about 2-3 weeks from blood tests. That is based on Addenbrokes Cambridge were we have been diagnosed and only a rough guide. Hope it helps but unfortunately it is a lengthy process .
Thanks Wendy, I come under Addenbrooks, always nice to have a timeline. The form I filled in took ages as I am one of 8 and mpad rents both 1of eight, could take them forever to get through my lot
Hello Philomena,
Am sorry you have to face the prospect of more uncertainty while you are going through treatment. Those forms are terrible arent they?!
I saw genetics almost a year after my diagnosis- it took about 2 months for me to get my appointment. I had triple negative breast cancer and was told I was at low risk of having a brca mutation. But, because of the triple negative breast cancer, was put forward to take part in research - the results took a year to come back. I did have a brca1 mutation.
I am interested in yur age as this would have a bearing on the way that they assess risk and the NICE guidelines have just been reviewed.
After my diagnosis, various relatives went to genetic centres across the country. I was surprised at the amount of variation, but its a slow process to get to the point of the actual test (and then as Wendy says, its about 8 weeks for the first person, and quicker for those afterwards). I mention this as its the waiting that is so hard.
Wendy, I really feel for your daughter and am shocked she found out on her honeymoon- all my family have only been told in the clinic which at least has meant that they have access to support. My own daughter is only 6 so this is something that we won’t face for a good way off yet, but as painful as it is to imagine the choices she faces, I am hoping that there will be more options for her and as I too have had breast cancer twice, knowledge is power on this one.
Good luck, Rattles
im a bit like you as i was sooooo sure id have the surgery if i tested positive after my second breast cancer, which was TN… But following my hysterectomy i cancelled my mastectomy surgery and went to the bottom of the waiting list and then got a recurrence… Asked to have it done then but was advised as new tumour wasnt in breast but chest muscle to deal with the cancer then do the surgery… Now just over a year after finishing treatment and really just want a break from hospitals so its on the back burner agin in the meantime… Although i do keep changing my mind.
philomena
the length of time varies from hospital to hospital… My unit the initial appt can take up to 3 months… You often need more than one genetic appt before they will actually do the blood test and then it takes around 3-4 months for a full genetic test… If its positive then other family members can the have a predictive test which takes around 3-4 weeks.
Jan my son had his appt and everything was fine but hes to go back in 6 months to be reviewed and is going to genetics soon as he is now wanting to be tested… And my daughter may now consider getting tested too… They are both needle phobic and only want it done if they can have mouth swabS… But im not sure how reliable they are compared to blood tests so gonna have o go off and research that a bit… Really hoping if they do go for it that they are both negative.
hugs all round to you ladies and your families xxxx
Just an update to say that my daughter is having her surgery next Monday and we are going to her pre-op assessment tomorrow morning. She is having expander implants with skin and nipple sparing surgery. Not sure why she is having expanders but she has been to a couple of the appointments with my other daughter and seems to be quite sanguine about the reasons she was given for this. Some days she is quite calm and then others she gets panicky and emotional which is understandable. We will be looking after her and my three year old granddaughter after the op. Just hoping and praying that it all goes well.
Hope everyone is OK and getting through the mire!
Jan
x
alias Blondebutbrainy (which has had to be shortened to Blondebutbrain because it is too long!)
Blondebutbrain I wish your daughter luck for monday! Im due a double mastectomy tomorrow! Am starting to feel really anxious, upset stomach etc Need to get out the house! Im having expander implants and the mesh too. Nipple sparing on healthy side. Im 36 with 2 little girls so quite concerned about missing my cuddles with them. My 3 year old understands but my 18 month old sees me as a climbing frame!
Ive been told they are using expanders so they can gradually fill them and not put too much pressure on the fragile skin as it will have lost alot of blood supply with the tissue being removed. Once it all settles down they can add saline. Worried what i’ll look like afterwards and how I’ll feel but this needs to be done i keep telling myself…ho hum. Cant wait for it all to be over x
Philomena, i had the BRCA test after my diagnosis and the results were rushed through as the result would effect my treatment. It took a week to be referred and meet with geneticist and 2 more weeks for the results so the process can be sped up if required. This was all NHS (at Guys). I think theyd find a gene fault due to my family history but it came back negative. I was told i could still have a genetic reason for bc as am young but could be down to another gene they dont know about or ofcourse it could be completely random. Last summer I saw my gp as was worried about a lump, was breastfeeding and my boobs were so different i didnt know what was normal anymore. She referred me to a family history nurse who then works out risk. I was at a raised level of risk than average it was determined so was meant to start having mammograms at 40. Little did i know a year later id be found with DCIS and facing a mastectomy. I’ve opted for prophylaptic one too as just want peace of mind.
if my BRCA test was positive a letter would have been sent to my close family inviting them for a test. Now its negative and the fact im under the age for screening i think its really important to self monitor. Any small thing that isnt normal should be checked out. My DCIS was found on a mammogram which i had to check a suspicious lump (which turned out benign). Had i ignored it id be turning up for my first mammogram at 40 (4 years time) and be facing an invasive cancer ive been told. So anyone worried about their young daughters just tell.them to check themselves.
Laura loads of luck for tomorrow hope it all goes well.
hi Jan i hope your daughters pre-op was straightforward and that her op goes without a hitch in monday.
im currently off work for 6 weeks nursing a broken arm after falling on my ass at a roller disco at t in the park and put my hand out to protect myself. Doh! Silly me!.. i hate wasting sick leave on stupid things… Always feel i should be storing it up in case i need it for something important lol.
I was wondering if I could get some advice. I tested positive to BRCA2 in Feb 2016. I am curently meeting with my surgeon for risk reducing surgery. They have given me 3 options
1- Implants with regular saline
2-Implant with pig skin matrix, incision under pec
3-Implant with whole pig skin covering, no pec involement
I have tested postive for brca2. I have appointment to see my surgeon on 1st November. Currently going through chemo for stage 3 er and her2 positive bc. Chemo will finish on 15th Nov. Just wantvtbis to all end but now need further surgery such a blow. Any advice?
I am glad to have found this thread , I have finished chemo for breast cancer a week ago , I have seen the plastics and surgeons , near the end of chemo I was told I am brac 2 positive , I am waiting for a souled mastectomy with immediate reconstruction using implants , I am still waiting for a gynaecologist to discuss removing the ovaries , it’s a lonely place
Saw my surgeon re further mastectomy and reconstruction, will.need to be assessed by plastic surgeons to see what procedure i am best suited too. As im still undergoing chemo (on break due to nasty reaction Doxetaxol) will need to be well to under go surgery.
Big op it appears, all day with 7 days in hospital and 3 month recovery. Alot to take in and go through .
