hi there thought i,d ask if i should be looking into family genes etc…as i was diagnosed with BC last year aged 43yrs …but also my mother had ovarian cancer diagnosed in her mid forties…i,m not aware of any other rels with BC
Hi tigerlillyput,
Things can vary a bit from one area to another, but in my area this would mean you met the criteria for a referral to the genetics service if you wanted one.
I don’t think it is so much what you should be doing, as working out what you’d like to do. I found talking things through with a genetic counsellor and getting information was very useful. In fact I did go on to have genetic testing (and no gene mutation was found). I felt that the whole process gave me choices and options.
It was my GP who made the referral for me.
Eliza xx
hi tigerlilliput,
with a family history such as your its probably worthwhile asking for a referral to genetics… in terms of gene testing you may just about qualify as you get points for each cancer and you normally need 20 points or more on the Evans score in order to get tested and with mum having ov ca in her 40s and you have br ca in your forties you would have 19 points… some other cancers which are relevant are prostate and pancreatic… so the people you would be looking at would be your siblings, mums parents, mums sibling and if any of them had cancer then you can look at their first degree relatives.
if you dont know your family history you can still be referred to genetics and they can sometimes find out more information on your behalf.
eg we thought my dads uncle had stomach cancer but turns out it was pancreatic which fits in with the family having the brca 2 gene.
hope that helps
Lulu xx
Hi
I was contacted by the Registrar I have been seeing in the Onc clinic; she wanted to refer me to the genetics team (Oxford). Needed to be via my GP. I agreed thinking when Rads over I’d go & see him.
Anyway he has already referred me; but now found out they don’t accept a referral without the “questionaire”. Apprantly my GP needs to provide a copy for me to complete. He can then send the referral. Something to do with their 13 week target. Clock starts ticking from referral date.
The registrar thinks I won’t probably be tested but they are however compiling all family histories where appropriate.
I also think it is a good idea as a family we have this info together. Some of my relatives have long since passed on when I was either a child or young adult. The next generation down didn’t know them so would be unable to give a full cancer history if God forbid they needed one.
I have appt in Onc clinic on Friday so if questionaire not received I’ll mention it so she can chase it up; or print one off for me to complete & give to my GP for him to refer me.
Take care
Lynne
I have been for Genetic testing but am waiting for the results. I had only considered the implications for my son having any daughters, if I had the Gene. However I hadn’t known about the implications for me if it was positive. If that is the case the implications for me are a higher chance of Ovarian Cancer and Breast Cancer returning in the other breast. My surgeon said I would be offered the removal of my Ovaries and a second Mastectomy.There was only one other case of Breast Cancer in the family but there are hardly any women and there are other types of Cancer in the family.
Hi haven’t visited this forum for ages xxxxxx however thought it wasst place to come … my mother died of Ovarian and my dad prostate my mum in law of BC and I was dx 3 years ago I have been advised that there is a high risk of inherited certain pre disposed cancers to my family and my appointment is 10 th May to discuss the next step …I am worried sick that my kids are going to be living their lives with this s**t hanging over them x Words of advice please xxxxx
Hi all,
gosh, this is a really good and interesting thread and I wonder if i can add to it?
I was dx with breast cancer in 2004 at the age of 39. My mum was dx with ovarian cancer at the age of 69, and my aunt (mums sister) had breast cancer, though not sure when dx.
because of my mum’s history, i asked straight away for removal of my ovaries(oes +ve)and had this done about 9 months later when I had convinced everyone I wasn’t taking no for an answer. after that I then asked for a second (prophylactic) mx, which I had done in late 2005.
I have always worried and felt guilty about the possibility of a genetic issue, especially because I have a 14 year old daughter and worry terribly as to what she now faces. I also have a 13 year old son.
The onc dr has never mentioned any genetic concerns, but then again their attitude has appeared “lax” at times. I am considering asking for a second opinion to the Marsden in relation to what happens now after my 5 years of Arimidex are up , so maybe the Marsden will be a good place to talk about this?
Good luck to all and keep posting - I too would be really grateful for any commments XXXXXX
Hi Tiger Lily
I have just had result of my genetic test. I was tested at Addenbrookes in Cambridge as I have triple negative BC and my Mother had ovarian cancer. They told me there was only a very small chance I would be carrying the BRACA 1 or 2 gene but as I have two sisters and two young nieces I wanted to find out. The result is I am not carrying the gene which is brilliant news for my sisters and also means I do not have to immediately worry about double mastectomy and ovary removal. Both my sisters (one of 36 and the other 49) had success even before I had the result in being given mammograms and having future follow up. I was obviously very anxious when waiting for the result but am now glad I have gone through with it, although in some weird way it would have made more sense of why I have got this awful thing at the age of only 50. (I know old to some!!) My Mother was 53 and I thought that was young. Good luck with your situation and hope this may help.
Hi everyone,
I’ve only just found this thread but would love to join you all. I’m 40 and had a WLE on March 1st. My Mum had BC at 29 and again at 34, and every female in my mum’s family has had breast cancer before the age of 45 for the last 4 generations. I’ve seen a genetic counsellor a few years ago and have been monitored annually (that’s how my tumour was discovered) but they can’t find a gene. I’m going again on May 20th cos I’m worried sick about my two beautiful daughters aged 15 and 13. I wanted a double mx but the onc wouldn’t do it straightaway so I’ve got to wait until the end of treatment which i think is rotten, as if I’d had it initially I would be recovering now! He doesn’t want to remove my ovaries either but this is definitely what I want cos my cancer is hormone fed. I don’t think the consultants listen to what you want always and I’m going to speak to the clinical genetics team about monitoring my girls and arranging the ops for me.
The fact I have almost certainly passed this on horrifies me. I just want to protect them as much as I can, and still be around for them for a long time yet.
Sorry I’m going on and on-it’s just good to put it all down.
Anyone else had similar experience? Would love to hear from you
Rachel x
Lynberi thats unusual to get tested with few members of the family affected but some bigger units can be a bit more flexible. things like bilateral disease or triple negative cancers can also mean it is a bit more likely to be genetic.
Mazaroo
i wouldnt say you have a high risk of inheriting a gene with your family history but it would be increased… even with high risk families (those eligible for testing through a diagnostic lab) on 20% do actually inherit a gene fault so you have a much higher chance of not having a gene… the age of onset of cancers and how many generations cancer occurs is also plays a role in those at high risk… i have some families however who you think MUST have a gene as they have numerous people with breast and or ovarian BC yet the genetic testing comes back that no gene change has been found.
this would mean your daughters were at the same risk ie they would still be eligible for increased screening from around age 40… if you were found to have a gene then if they wanted to be tested they would either have inherited it or not… if they did inherit it then they would be at an increased risk of breast and ov ca. if they didnt they would be at the same risk as the general population.
happyshopper
i think with your family history you may well fit the criteria for genetic testing… they are normally willing to test people with 20 points and with you having BC at 39 you would get 8 points, mum would get 10 for ovarian and even if auntie was over 60 she would get 2 points… so it is probably worthwhile having a referral where they would confirm the type and origin of cancers. even if they cannot test you your daughter should still be eligible for early screening, probably from around age 34, which is 5 years younger than you were at diagnosis… good luck with your appt at the marsden i hope they are able to help.
graco
some people who have BC and who have a first degree relative who had ovarian cancer may still opt for oophorectomy even if no gene change is found as there isnt any reliable screening for ov ca… but also depends on age as over age 50 its not so effective in reducing risk of breast cancer…
in terms of risk although it feels young 50 is the age when screening starts because that is the age we expect to start finding breast cancers… my mum was 57 and i thought that was young too… i think we think its an old lady disease when it isnt really… its just a lady disease fullstop.
Rachel even women under age 30 with breast cancer they are more likely to be unlucky rather than genetic although at 30 it has a higher chance of being genetic than somebody diagnosed at 50… hope that makes sense… also bilateral cancer and TNBC is more common in those with gene mutations but do still occur in those with sporadic cancers too… my surgeon didnt want to do bilateral mx for me when i was diagnosed for the second time and said hed rather get on with chemo and could do Mx after treatment was finished if it was recommended. i got my brca 2 + result 2 months after my last chemo and just when i had started rads so i am looking at having double mx in the future. i did have a TAH and BSO 6 months ago as there isnt any good ov screening and thats the bit i was more worried about.
your girls are still very young but would be eligible for early screening although timing for this varies on your health authority some will only do it from age 40… there is a research trial currently recruiting for people between 35-39 with strong family history to have annual mammos so the guidelines may have changed by the time your girls are to be screened.
Lulu x
Hi ladies, not been on this site since finished chemo and rads last Nov. Glad I found this thread. I was 46 when dx, my mum’s twin had ovarian ca age 45 but passed away. My mum (who passed away 8 yrs ago from brain tumour) had a hysterectomy aged 44 but my dad said drs never mentioned ovarian ca (didn’t talk about things in those days). I have 2 sisters (52 & 46) who have now had mammos due to my dx. My younger sister has a daughter so she asked GP for genetic referral. It now seems that it may be my dad’s side may have gene as my dad’s sister passed away from pancreatic ca and ovarian ca. I am terrifed of getting ovarian ca and had an ovarian scan which was clear. I am considering asking my GP for referral for oophorectomy. Am due to see Oncologist this week and am going to ask her for advice. Has anybody else asked for an oophorectomy? What was the reaction from dr? Will people think I’m paranoid??? Beginning to think I am!!
Love and hugs.
Kiti x
Hi Kiti
i had a full hysterectomy in sept… with a family history such as your i think they would def consider it especially as you appear to have risk factors on both sides… i def dont think they would think you were paranoid.
did your mum have her ovaries removed when she had her hyst? frequently they used to remove ovaries routinely until about the 1970s or later in some places… and removal of ovaries would obviously reduce the risk of getting ovarian cancer but it also reduces the risk of breast cancer.
in my family my great granny had breast cancer, but my gran had a TAH and BSO in the late 1950s and she never developed BC, but my mum did and so did i we thought when i found that i had the gene it had skipped her because of the surgery however the gene actually came from my dads side of the family not mums…
we had pancreatic and ovarian on dads side but not close relatives and it was the risk factors on mums side that allowed for me to get tested.
Dear Lulu,
thank you so much for your advice - this is really a new area to me, and although it’s always been at the back of my mind, I’ve never been sure what to do about it or whether my concerns would be dismissed (as has been throughout most of my care, unfortunately).
Lulu, how do I proceed with this? I am going to ask my GP for a referral to the Mardsden so that I can have another opinion on my care and I’m not sure if it’s appropriate to ask them? (the reason I would like to go to the Mardsen is that I have come to the end of 5 years treatment with an AI- I have asked the onc secretary for an appt to discuss further management i.e. stopping AI or continuing/changing to something else. I was told that this was not needed, I should see the surgical team instead and they would deal with it. went to breast clinic- no consultant available, just the registrar who does not instill me with confidence when after examining me she asked when my next mammagram was due(had bilateral mx!!!). I then asked BCN that I wanted to see the onc so that I could have a face to face chat about future management as well as a review as not seen since 2006 - she said this wasn’t necessary, she would EMAIL the onc and get permission for me to stop - that’s it !!!)
All I want is to sit down with an onc, ask about my situation, and talk about my concerns regarding genetic link - that’s all I want to do.I don’t think that is too unreasonable really.
The scoring system is not something i am familiar with so once again Lulu, I am very grateful for your guidance. the guilt and sadness I feel for my daughter is just awful - i can see from other posts that this is something that affects many of us.
Sorry for the long post - I look forward to any comments XXX
Hi HS
im not sure how the process goes in england but usually your onc, breast surgeon or gp can make a referral to genetics for you… if you are being referred to the marsden then i think you could probably ask them about it but the genetics team are usually separate from the surgical and onc teams.
the marsden has a big interest in genetics and even runs clinics specifically for BRCA 1/2 positive ladies so they may well be a good place to start as it doesnt sound like you would get much support from your onc.
think its pretty poor he wont see you… normally if patients make a request to see their consultant this can be arranged although may take a wee while to organise… i understand your concerns coming to the end of your AI treatment and its a concern than many people do share regardless of family history… it may be worthwhile to continue with it until you have your appt at the marsden… my mum took her AI for 6 years as i had just been re-diagnosed when she was due to finish and she was extremely anxious about stopping… the clinical nurse specialist suggested she continue them for another 12 months which she did and agreed to see her again after this even though she would normally have been discharged from breast clinic at 5 years… our clinic are very good and do take personal circumstances into account.
let me know how you get on with the referral.
Lulu x
Hi Lulu, thanks for your advice. Who did you ask to get tested? Your GP or Oncologist? Not sure if my mum had her ovaries removed, think she did but will ask my sister. I had a sub total hysterectomy 9 yrs ago after I had my youngest son due to severe haemorrhaging. The Cons. didn’t remove my ovaries though as he didn’t want me to start the menopause! Now I really wish he had removed them. I’m seeing the Oncologist tomorrow so have a big list of questions to ask!
My GP has been gt and said she will refer me to Genetics after the histology reports from family members are known (sister had to ask family members permission for histology) and depending on them they will test my dad first (forgot to mention he had bowel ca aged 77). Did you have to go through this process (histology reports) to get tested?
I too am worried for my children (boys 13 & 9). When I was first diagnosed I never even considered the possible implication for them. Suppose the sooner I can get tested the better.
So glad I found this thread and know I’m not alone with this worry. Found the information from everyone invaluable.
Hoping everyone is well.
Love Kitty x
Hi HS & Kiti,
My consultant didn’t want to make the referral for me and told me to go to my GP - I think this was because he wanted it to come from her budget rather than his! My GP was fine about doing it as it was clear that I easily met the criteria in terms of the points.
I have been in the UKFOCSS ovarian cancer screening trial (now closed and about to finish) and was referred to the Family Cancer Clinic at University College London Hospital for this. You may find a similar clinic useful - they told me I could come out of the trial and opt for oophorectomy at any time either with them or at my local hospital.
Are you in the SEARCH study, Lulu? I have just received their update.
Eliza xx
Hi kitty
When I was diagnosed the first time it was my breast surgeon who referred me to genetics and was in brca3 trial but tested negative at that time. When I got it again it was the radiologist who told me I had cancer again and he thought it was genetic… Not sure how he knew by looking I must ask him cos I work with him now… Anyway when I saw breast surgeon he said he would refer me back o genetics as he thought it was likely to be genetic too. When I saw my Onc he said it was a waste of time getting referred back as the testingfrom brca3 said I was negative for brca1&2… But I was glad surgeon did cos I tested positive for a nonsense mutation in brca2 which is a kind of mutation the brca3 research didn’t look for.
We had to confirm the pathology too but was just me and my mum and we had both got bc within 4 years. I got my first one the year after mum. Although mum didn’t have the gene it was because she gad cancer that I got tested and may even have been why I checked and did something about it. So I tell her she saved my life. :0)
Im surprised they are testing your dad first we normally try to test the youngest person in the family who has been affected.
Good luck with the referral and keep me posted
Love Luluxx
Eliza
No I’m not in SEARCH but gonna look int it cos I heard you mention it before xx
They have published some of their findings and have a web site that points to these. Don’t have the leaflet with me but if you don’t find it pm me and I’ll give you the details.
E.
Hello everyone,
I have been sent an appointment to see cancer genetic people on May 20th, so I’m glad I will have the chance to discuss what screening will be available for my girls in the future, and also discuss my mastectomy.