I haven’t been on for a while but I hope everyone is doing okay. I think I need some help and support and where else better to go that here… for those of you who don’t know, I was diagnosed in June 2006 at the age of 32, had lumpectomy, chemo and rads. My auntie had BC the previous year and had mastectomy and chemo and rads etc. Anyway, the reason I am asking for help is, I did go down the route of genetics and luckily this came back as clear, I do not have the gene but my worry is, we have a very strong family history going back 4 generations on one side and 3 on the other, I was amazed that I didn’t have it. Anyway, my auntie was diangosed with Bone secondaries on her spine in July this year and has since passed away 3 weeks ago.
My dilemma is, do I request to have my ovaries removed? Will they do it or not because of my age and because (they say) I don’t have the gene? My other worry is, I did not go private to have the genetics and I am now worried that they haven’t screened me correctly…am i just losing the plot due to the fact that I have recently lost my auntie of whom I was extremely close to and that she was so young too (53 year old)? I really don’t know. I had a bone scan in July which was clear but they sent me for an MRI which I couldn’t do as I was claustrophobic so I am waiting to see my oncologist for a referral to have an open MRI scan. I have lower back pain and pain in my hip joints, I also have pain when you touch anywhere on the top of either thigh.
Is anyone able to help me on this? I am sorry if you find me waffling on, I really don’t know what to think or do anymore and I am really stressed about this.
I’m afraid I can’t really offer you any advice about poss having an oophrectomy, but I just wanted to send my sincere condolances on the loss of your auntie. I am truly gutted that your auntie has passed away. You mentioned her a lot in the posts we exchanged when we too were concerned about bone mets and were having scans and stuff. I’m so sad that this has happened and can only hope that her final days were peaceful and painfree.
I am sure there will be loads of people who will be able to advise you on the question of whether or not to have your ovaries removed. In the meantime I hope you get your open MRI scan very soon. I remember you messaging when you got home from having 3 attempts at a normal MRI!
I am sorry to read about your Auntie. May I suggest you have a look at the BC fact sheet on ovarian ablation as it includes lots of information which you may find helpful. It can be found by following this link:- breastcancercare.org.uk//docs/ovarian_ablation_june_2007_0.pdf
It may also help to talk this through with one of our trained members of staff on the helpline. Here you are able to share your feelings confidentially with someone who can offer you advice and support. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
Hi Claire,
I am in a similar position to you- diagnosed last Jan aged 34- had chemo, mastectomy and rads- had preventitive mastectomy on my healthy side this May and have been tested geneticallu, although they HAVE found something with me.
I also have a strong family history and although I havent got the BRCA1 or BRCA2 they describe me as having “a rogue mutation of the BRCA1 gene”. They are currently researching my tumour at Guys Hospital and have DNA’d my mum and dad to try and prove that this mutation has come down my dads line (his family has the BC link).They do not know if the gene I have is dodgy or individual to me as they just dont know (they havent seen it before!)
From what I understand- due to the speed of medical technology, just because they only have the BRCA1 and BRCA2 genes down as direct evidence of dodgy genes, it does not mean that you havent got one- its just that medical science has not reached a point where they can recognise more as yet (forgive me if anyone thinks this is wrong- its how I was led to understand it).
I am on the waiting list for an oopheroctomy and am gonna have my ovaries out- this has been recommended and advised to me by the gynacologist and although I am not particularly happy with this, I feel that in view of my age, its something that I HAVE to do. I was told by my doctor and genetesist that they would not consider taking my ovaries until I was early 40’s (I’m now 36), but the gynacologist had the opinion that the sooner they are out then the better (they are treating me as if I am BRCA1 case) I say that if you want them out-ask. I’m sure that in view of your family history and age, they WILL take you seriously as the medical profession are the first to admit that they dont have all the answers and there are so many unanswered questions in terms of genetics.
I would be more than happy to answer any questions you may have
sorry if I’ve rambled
Best wishes
Katyx
Heya I’m 34, had 2 BC tumors (both different) and have had samples taken for genetic screening a couple of months ago, no news yet (which I know is good news so far).
The geneticist I saw said that they’re very confident now that if they don’t find the BRCA genes that you don’t have them, it’s not 100% but it’s pretty close, but and it’s a big but there are other genes they’re just starting to learn about that may be implicated in BC so it’s not really the same as saying it’s not genetic.
I have read that the risk of ovarian cancer starts to really increase in your 40s but the benefits of having them until then should be considered, especially if your tumor wasn’t hormone responsive.
A lot of women choose to have scans of the ovaries yearly instead and I think that’s what I’ll do if I’m told that I don’t have the gene, ie be watchful but not go whipping them out hastily although once in my 40’s I might.
I’m an odd case because tumor 1 was triple negative and tumor 2 was slightly hormone responsive so basically they think I should have every treament going so I’ve done chemo, next is rads and then probably tamoxifen or zoladex or something too… blurgh.
I was also told that they tend to consider there to be a possible family connection if more than 1 other relative has had BC so it’s really quite possible that both you and your aunt were just unlucky.
Are you on hormone therapies? I’ve read quite a few ladies on here have pains from them too so hopefully your back pains aren’t anything too sinister but you’re right to get them checked.
You have a very strong family history so I can understand your concerns. I think you need to speak with the genetics dept to find out what percentage of the BRCA genes they tested and what the possibility is that you had a false negative reading. If they didn’t test 100% then you can’t be absolutely sure that you haven’t got a BRCA mutation. Its also a possibility that you have got a yet undiscovered mutation such as BRCA 3. As for an oopherectomy, well you are very young to go down this route. I had my ovaries removed at the age of 41 three years ago and my bones have deteriorated quite a lot. Oopherectomy also increase your risk of heart disease not to mention loss of libido and vaginal atrophy. I would ask genetics to refer you for ovarian screeing, this isn’t usually offered unless you have a known mutation but in light of your very strong family history I would think you may be eligable.
Thank you so very much for your posts and your advice, I will talk to my oncologist in the next two weeks and I think I really need to lay my cards out on the table and be honest about my feelings instead of bottling everything up. I can see the pro’s and con’s and I am so grateful to your honesty. Where would we be without this site eh?
Sam BCC Facilitiator - thank you very much for the information and the telephone number, I will call as I think I would benefit from someone to talk to.
Kelly - how are you? please let me know how you got on and thanks for your kind words.
I hope all of you look after yourself and really take care. I find you all very sincere and comforting to know that we have eachother when we need to ask certain questions and sometimes just for some reassurance.
I’m doing ok at the moment, thanks for asking. I had a brain scan a few weeks ago which showed NED and I broke down and cried when I heard!!! Now I’m trying to move on with my life and am determined not to spend the rest of my days constantly living in the fear of developing secondaries. I know the chance of me getting mets is high but I am ‘clear’ at the moment, and thats what I’m trying to focus on.
So, in light of me attempting to ‘move on’ I have FINALLY returned to work!! Albeit on a very part time basis at the mo. I’m currently on 2 half days a week and thats more than enough at the mo. After 18 months off I intend to take things very slowly to begin with. I was so scared before my first day back but it was really fine and I’m enjoying it. Its so lovely to have something else to think about other than cancer and all things associated with it, such as hosp appts!
I really hope you’re doing ok and are finding ways to deal with all the sh*t that is being thrown at you at the mo. I still have counselling to be honest, great having an impartial ear to sound off to! Be sure to keep in touch and let me know how you get on with the onc and whats decided,
thanks for the advice, i am sorry your friend has had a recurrance…this disease is so awful, I cannot put in to words how I feel at the moment. I am seeing my oncologist next wednesday and the doctor at genetics has agreed to see me again too. I will have a look at the NICE guidelines in the meantime so I will be ready for all the questions and answers. I do appreciate your help and yes, I will keep you posted.
I would reinterate the comments of Katy above…there is simply so much in the field of genetics that we don’t know about yet.
I am 30 and was diagnosed with grade 3 IDC in Feb. The BRCA1 gene is in my family (on my father’s side) but he tested negative for the gene 10 years ago when it was first discovered in our family. Three out of four of his sisters have the gene and they all had breast cancer in their 30s. His mother died of it and her mother too. We all thought his negative test was good news for me, so were perplexed when I was diagnosed. Dad has since been retested and confirmed he definitely does not have BRCA1 and I was also tested and unsurprisingly, I am negative too. However my results showed a very small variation of the BRCA2 gene of “unknown significance” ie. they are not sure whether it has caused the cancer as it does not look like the usual BRCA2 mutation.
My geneticist says I will probably know in 10/15 years what has caused my cancer but in the meantime it is likely to have been caused by a gene or a combination of genes as yet identified.
I am enrolled in a genetic trial looking for BRCA3 at the Marsden.
My message to other women is that if you have a strong family history of breast cancer or if you have one of the BRCA mutations in your family, you need to be extra vigilant about checking your breasts and not assume (as I did) that you will be fine just because you’ve tested negative. There are many genes as yet undiscovered or it could be about an unfortunate combination of high risk genes - they simply don’t know yet.
I had a bilaleral mastectomy and reconstruction six weeks ago as I was treated as if I was BRCA1 positive. I’m not sure about ovaries as yet…just want to get through the rest of my treatment (radiotherapy starting next week) and get my life back, then think about the next steps.
I am going for my MRI on Tuesday and I have an appointment at the Genetic Clinic on Wednesday, my genetic consultant is going to go through everything with me again. I will let you know how it all goes.
so sorry I’ve missed sending you good luck wishes for the MRI today. I’ve not logged on for a few days so only just seen your post. I really hope it went ok and the results will be good.
Best of luck for your appt tomorrow too, will be thinking of you.
Well, I had the Open MRI, it was so much better than the tunnel, still got freaked out a little from teh shadow on the ‘dome’ but it was fine, the hardest part was lying still for over an hour…I thought I was only going to be on there for 40 mins but it was 1hr and 15 mins !!! Back was aching but at least it is over with. I should (hopefully) get the results on Monday…fingers crossed. The lady doing to scan wasn’t able to tell me anything but she did comment on how bad my back was, said there was a lot of damage to it…wear and tear I guess…lets hope thats all it is !!!
As for genetics, they are referring me to a psychologist, she thinks I need to get everything off my chest and talk to someone about my anxieties…she’s right but I’ve never had to courage to ask. I work within a Mental Health Trust and have beren worried about asking for help, I do know this is completely different but you know what I mean. Anyway, she also said she has a colleague who does hypnotherapy and that she may have a couple of sessions to help me relax as I don’t sleep very good either and it may help me with my coping strategies.
I feel very relieved that someone has actually listened to me and been very nice towards me, I don’t know whether I’ve said this in the past but I have thought that the BC nurses and my oncologist have thought I was imagining these symptoms and just ‘over-reacting’, they’ve never actually come out and said anything but you can tell by someones expressions…anyway, its done and over with now, I just hope the results are good. My genetics doctor did say that she was going to ‘push’ and check the ‘guidelines’ to see if I could have a bredast MRI due to the family history…watch this space I suppose.
Well, that’s my update, phew, I will let you know the outcome though. You all take care of youself.