I am new to the site and wondered if anyone might have any tips or advice for me as I begin a whole new phase in my journey with breast cancer.
I had b/c with lymph node involvement in June 2009, chemotherapy, surgery and radiotherapy. Saw a geneticist in 2010 and had a genetic test as part of a research study (despite strong family history, wasnt eligible under NICE). Results showed alteration on Braca 1. They said 99 per cent chance result is correct but have to have a diagnostic test which takes 8 weeks.
Its like being diagnosed with b/c all over again. I am very scared and have some sense of implications but dont know what to expect, what to ask. I dont know how to explain to close/friends and family as its so technical. Much of the information I have found seems to relate to people pre-breast cancer diagnosis.
Wondered if anyone might be able to offer advice/tips?
Hi Rattles
Welcome to the Breast Cancer Care discussion forums, I hope you will find them a great source of support and information.
Whilst you wait for the other users to reply with their knowledge and experiences you may find it helpful to talk things through with someone from the BCC helpline. Here you can share your concerns with a trained member of staff who will offer you a listening ear as well as support and information. The number to call is 0808 800 6000 and the lines are open 9 to 5pm weekdays and 9 to 2pm Saturday.
I hope this helps.
Best wishes Sam, BCC Facilitator
hi Rattles
so sorry that it looks like you might be joining us with having a BRCA 1 gene mutation.
it is an expectionally hard thing to take in, and the best advice I can give is one small step at a time. I was diagnosed as a BRCA1 18 months ago, and only last weekend did we tell anyone.
It is so hard deciding who to tell, I have had bi lateral mastectomies and recon, but not ovary removal yet. I decided just to tell people that my risk was high, and that surgery was recommended.
I do not think that I will tell many people, I prefer to keep it to myself.
Additionally they do some telephone support groups on this site, whish can be very very helpful with this.
good luck
crystal
This is also a hard one for me,
i was dx with bc in december and my sister last month, our doctor wants us to be tested for the gene?, ive mentioned it to my onc, but he does not seem to be keen, im having chemo at the moment then i need a mx then rads, people are saying i should be tested as once its in the overies its too late !!!. plus many have mentioned the insurance issue? would i rather know im a carrier so i can have a double mx then hysterectomy, my life is more important than insurance, or is it a fluke that we both have bc,
confussed
Donna
xx
Hi ladies
I have had bc twice at 37 and 40 and lumpectomy to both sides. I was diagnosed as a BRCA2 gene carrier a year ago.
I had a hysterectomy and ovaries out 6months ago but still not had mastectomies
I also now work as a breast care nurse in genetics.
Not everybody with brca1 who gets breast cancer will go on to get another cancer but having surgery does reduce the risk of getting further cancer. Having ovarian cancer doesn’t mean it’s too late either it’s just harder to detect as there is no ovarian screening programme so often the cancer can be more advanced but it can be treated and if early ov ca it can be cured too.
A cousin in my family died of ov ca at 45 (20 years ago) so I felt I didn’t want to run the risk but most ovarian cancers occur over age 50 even with genes so we would normally suggest having them removed around age 40 or after you have finished having a family if you wished to have them removed at all.
Whether you opt to have risk reducing mastectomy or continue with breast screening is a very personal choice too… Some people say if I work in genetics I should be rushing to get my breasts off but it really isn’t an easy decision for many many women.
Lulu xxx
Thanks to all for supportive responses. I saw my oncologist on Tuesday and he was very reassuring. But, while I am no longer quite as panic-stricken, it is alot to take in. Strangely, I feel a bit ashamed(?not right word) and have not yet decided who to tell. I have had to talk to my mum and sister and there seems a lack of information to explain this issue simply and clearly. My sister will have a choice re. test but my mum will need to be tested to see whether I inherited the alteration from her, so she had been upset too.
Wanted to say to Donna that my oncologist suggsested waitiing to be referred to the geneticist until after my chemo had finished as it is so much to take in and deal with. Apparently the treatment would be the same whether or not there is or isnt a braca alteration.
I wanted to ask Lulu whether it has been hard to decide not to have risk-reduction surgery and how you manage the fear and uncertainty of cancer coming back?
Thanks, again Rattles xx
hi rattles
i have decided indefinitely not to have double mastectomy just dont want to do it at the moment… but you arent limited to a one off chance… i can have a surgery whenever i feel i want it… many women arent in the right place to decide about it when they are either first dealing with cancer diagnosis or BRCA diagnosis and it can take folks a while to decide what they want to do.
i have already had breast cancer twice and after the second tumour i was investigated at the end of chemo as they thought i had a recurrence at that time i went through a really rough time thinking if the chemo hadnt worked i could become very ill very quickly… after preparing myself for the result as i was told to prepare for the worst it was such a relief that it was not cancer but fat necrosis.
i think having gone through that period nothing seems as bad.
i just like to keep myself informed and be body aware… and i have had my ovaries out which not only reduces the risk of ovarian cancer by around 95% but also reduces the risk of breast cancer by 50% so i do feel somewhat reassured by that but i will probably have the risk reducing breast surgery in the future just not quite ready to take such a radical step at the moment.
Lulu xxx
Thanks for being so honest Lulu. I am beginnnig to see that dealing with this diagnosis is a longer term process.
I have been recalled for further tests twice since completeing my treatment, one very soon after finishing treatment-like you this turned out to be tissue necrosis.I was really afraid at the time. I am starting to be reconciled to having my ovaries removed.At this point, I am not sure what is worse- living with the knowledge that the cancer could return, or taking such drastic steps to minimise risk.
Can I ask you how open you have been about your diagnosis? Crystal said she didnt really tell anyone, and I can understand this. But I think the few people who can see I am upset and dont want to talk about it are actually afraid the cancer has come back!
xxx
Anybody who sits still long enough gets bombarded by my tales of woe and no doubt bored to tears by it all but I find it fascinating. Family, friends, colleagues, neighbours pretty much everybody lol. Just my way of dealing with it… I just like it out in the open so I don’t get any nasty surprises. But not every body deals with it in the same way some people are very private about certain aspects of their lives. You have to do what’s right for you and your own situation. We all have attitudes and beliefs at the outset but these won’t all become the same as the next person just because of cancer or a gene. Tell who you feel comfortable telling… That might be no one or every one lol
hi everyone, i originally got diagnosed with breast cancer feb 2000, i had a lumpectomy chemo and radiotherapy,(left breast) i developed a new cancer in my right breast october 2010, this has resulted in me having a mastectomy, chemo which i am undergoing at the moment, and further radiotherapy, because of family history i have had a blood test to determine braca 1 and braca 2, so now i am faced with surgery to remove left breast which i am definately having either way, and potentially more surgery to remove my ovaries etc if gene defective, i have 2 daughters 12, and 8 at the moment. i have very mixed emotions at the moment, and at the age of 44 feel its a lot to cope with, i know what i have to do but boy is it difficult, theres no point in dwelling on it because its a fact and thats that, my motto is do whatever it takes to beat this thing, and even when i am saying out loud i carnt do this anymore, in my head i know i can and have to, and will, i am not a religious person (no offence to anyone that is) but i fondly believe that things we have done or not done, have a bearing on what we have to endure and why we have to endure it, i dont know if that makes sense but i know what i mean, why isnt anything just straight forward, there always seems to be a why or where fore, at the moment all i can see is treatment and surgery i wonder how many other people are facing such dilemmas, am i losing it, or is it just the docetaxol making me think i am, is there anyone out there that can relate to me i would love to hear from you if there are x
hiya, thought i would share my story although may not help. long history on my dads side of cancer but nothing in last 2 generations, well until me, on mams side lot of it. i found my lump on 35th birthday which was when i was due to start testing due to link on dad’s side. my aunt on mams side then died of it. I found out week after 35th birthday, i wanted to be tested and wanst ashamed, me being diagnosed with brca1 allowed 38 people to be cleared for it, i got it from my dad which made him feel really bad. I was already widowed and agreed with consultant that having ovaries removed was best option, i was sad but dont regret it at al, im now due to have 2nd masectomy and double recon using tummy which is huge but hoepfully it will let me move on. Noone can tell you what to do its a totally personal choice but for me, im a major worrier and agreed i wanted to do everythign possible to reduce the chance of it coming back regardless of the consequences.
Hope it goes well for you xxx
hi lisa and thanks for sharing your story, it has helped me you seem in more or less the same situation as me, i am waiting for my brac results which will of course determine whether or not to have my ovaries removed. I felt to begin with that no one else understood but after having been on here have since found out that actually a lot of ladies have faced the dilemma, for me, just like yourself preventative surgery is the only option, so here i am just persevering with chemo, radio, further mastectomy and possible removal of my ovaries, at least if i find out i can deal with it, and like yourself the people who need to get screened can do, thanks once again, and all the very best to you love liz x
I just wanted to say thank you for sharing your experiences which really have helped. Sometimes I feel very positive, and at other times very down but its comforting to know that I am not the only one and that there are others who have managed to get through and succeed. I just wanted to say to elizabethtracey that the docetaxol is hard-going (I shiver even writing it !) and sometimes you just have to keep on going…it must be so hard to have to go through it all a second time. Also, to lisaf for showing the way it helped her family-good luck. I have accepted the inevitability of having my ovaries removed, but not sure about the rest yet.
hi rattles, it is a bummer the waiting and uncertainty are the pits, but i think once you know whats what you can deal with it, i am just doing one day at a time at the moment, and depending on how i feel taking it from there, the tax is difficult to say the very least i was totally not prepared for the side effects, but now i know that from the past 4 i have had to expect to be in bed for at least 2-3 days when at the very worst, my head goes west too, i carnt think straight its as if my mind shuts down whilst i am trying to deal with the chemo. i sound like i have lost the plot but i am sure you know what i mean, anyway how are you today love liz xxxx
hi rattles …i was very interested to hear what you had to say about genetics i to have to go to the genetics clincic on wed i,m bit scared due to family history…did you have to give them family death certificates…i really understand wot your feeling rattles … i,m scared of the outcome of it all …i didnt realise you had to wait as long as that …i really hope you get good news .all the best moglie x
hi moglie
at your appt they should ask who has had cancer, what type and what age there were when diagnosed… often they will then get confirmations of these cancers through cancer registries and death certs but you dont have to provide them unless they were outs side of the UK or sometimes its more difficult from other countries in the UK… they will advise you at your appointment… from this they will gauge if you are high enough risk to get genetic testing.
if you have 3 members of your family affected by breast or ovarian cancer at any age you can ask to be tested through the genetics of familial breast cancer trial (called the brca 3 trial), which is a research study and not a diagnostic test but can find some brca1/2 as they test for the main changes as these individuals would be excluded from their research… in order to get diagnostic gene testing there are more strict criteria and they can work this out from the information you provide and from the confirmations.
we usually encourage patients to have 2 or 3 counselling sessions prior to sending off bloods for testing and ensure they are aware of the implications for themselves and for other family members… some people just dont want to know… dont want to live with the knowledge, but others feel they want to be fully informed and be proactive.
the brca3 study takes around 9 months but the diagnostic testing usually take about 4-6 months but it depends where in the country you are as some do take longer.
its a very personal decision and only really you can make it… even in families with lots of breast and ovarian cancers only 20% of those tested will come back positive, so for many they go through the testing but arent any further forward.
dont feel pushed into being tested if your not happy about it or if you dont feel its the right time.
take care
Lulu x
This is a very late reply to Moglie so hope the appointment was not as stressful as you feared. I took part in the study mentioned by Lulu- looking for braca3, but it needed to rule out 1 and 2. I waited a year for results from study. Now waiting for results of diagnostic test - this will take 8 weeks. They asked for lots of information but not death cert. I didnt have alot of info. about my father’s family (another story!) and only knew that my grandmother and aunt died of cancer 40-45.
My sister has a 30 page booklet to fill in, asking her her weight at 20 (she was cross about this) and how she exercises etc, wheeras mine was very much around family history.
I have started having some counselling which has helped because I can talk through how I really feel and drop the brave face I seem to put on! I agree with Lulu, it is worth taking time to think it through as it throws alot of things up in the air. Have to say my doctors dont seem very cool about it which on the one hand is reassuring, but on the other, minimises the impact of it all.
Hope this helps, even though it will be after your appointment. x