I was diagnosed with DCIS in August and am awaitaing the pathology results of my WLE that I had 21/09/12. Will almost certainly have to have radiotherapy. I am aged 33. Family history is:
My paternal grandmother had breast cancer aged 37 - died of throat cancer in her 70’s.
My father died of liver cancer in november last year.
My older sister was diagnosed with breast cancer in june this year also aged 37 - and has just been advised that she has bone mets on her pelvis.
Genetic testing has been mentioned by by consultant and we have loosly talked about possible preventative surgery in the future - which I’ll be honest absolutely terrifies me. Part of me doesn’t see the benefit of genetic testing as I understand that coming back clear of any known mutation just means they may not have found our specific gene. What REALLY upsets me though is the thought of not being able to have children. I was the one who first questioned him about risk factors / preventative surgery and I don’t know if he is talking about it because I raised it - or if he would have raised it himself anyway. In a way I wish I’d never asked any questions!
I know my current treatment should not affect my fertility but I feel a bit like a time bomb and would hate to pass anything on to my children. Equally, part of me wants to finish treatment (hopefully) and if we are able, just ignore the possible genetic issue and go on to live our lives and have a baby. I would have been willing to do this before my own diagnosis of DCIS so I wonder if anything has really changed. I don’t want to be in this cancer bubble forever.
I don’t know - am I just being massively selfish and naive? Is it irresponsble to think about having a child without going through any genetic testing etc? If I came back positive for a gene is that it for having children - am I going to have to front up to the fact children are not in my future?
This is all on top of the anxiety about my future health - feeling a little bit doomed at the moment. I know other ladies (including my sister) are dealing with much worse but everything is so uncertain now. I don’t know what to do.
Hi - Looks like Im the first to reply to your post - wish I was in a better position to help you but I haven’t been offered genetic testing as it would appear that I am the first in our family to be diagnosed with breast cancer although there have been other cancers in the family. Dad died of a brain tumour, auntie had bowel cancer and a cousin has prostrate cancer.
I have a daughter and a granddaughter and I do worry about their futures. If I was offered the genetic testing then I would go for it. I know someone who’s mother died of breast cancer - the daughters were offered the testing and the genetic link was found. One daughter chose to have a double mastectomy, my friend didn’t. This year she was diagnosed with breast cancer and has now had a double mx done.
Would a positive test rule out having children?
Try not to see too far into the future, all this is still very new to you. Take each day a step at a time, once you have your results back you can then consider the next step. All you have to worry about is right now - yesterday has gone, and tomorrow has yet to come.
hi brady, i have just been diagnosed with stage 3 breast cancer, ive been told bc and ovarian cancer is connected, my mum had ovarian cancer 8 years ago and my sister has just had an ovary removed and is now going in for a full hysterectomy, this scares me as myself and my sister both have daughters and they will prob need to be tested in the future.
Thankyou for the reply - apreciate you taking the time, and I’m sorry you are here on this board too.
My OH / family do keep telling me to focus on the present and try not to think about the future but frankly - I see making these decisions as my ‘present’. I know the immediate concern is to recover from friday, get results and then look at next steps but I just can’t put all thoughts of the future out of my mind. I know the next step after this treatment will be to consider genetic testing and possible double MX. Along with that comes all of the ‘children’ thoughts and I can’t just pretend it is not a concern.
DCIS seems to be a double edge sword - it does not have the ability to spread. Obviously great news in terms of me and my diagnosis, but leaves a whole heap of uncertaintly. Especially with my family history. Don’t get me wrong - I’m so glad this has been caught early (assuming tests confirm it is dCIS) but it’s not like they can remove it and that’s the end of it. I’m finding that a lot of people don’t understand the longer term concerns and anxiety i.e it might come back, it might develop into a primary, I might get a new primary, it could develop like my sisters have, I might carry a gene… lots of mights.
I was diagnosed with invasive breast cancer last year at the age of 33 and had a double mastectomy, chemo, herceptin, radiotherapy and am now on Tamoxifen. I also have a very strong family history and lost my mum and grandma to the disease. I’d just got married when I was diagnosed and we’d just started trying for children and I am praying that the possibility hasn’t been taken away from me. I have no idea if the chemo has left me infertile…and won’t know for a few years.
I was tested for the genes but the tests came back as negative for BRCA1 and 2 but my geneticist believes there’s a good chance that I carry an unidentified gene due to my family history. That kind of leaves my family in limbo as nobody else can get tested. It’s a BIG decision to make - and one that would invilve counsellors etc for you to come to the decision whether to be tested or not. In my opinion, i believe knowledge is power and in my family’s case we’re just having to assume we might carry a gene. My sister’s chance of carrying it would be 50:50 but as there’s nothing identified to test, has opted to have preventative surgery (she is 26 and single, so I do worry for her) - and she might not even carry the gene. Also, if you are a BRCA carrier they can test your eggs and place the non BRCA ones into your womb (OK - a bit of a simplistic explanation!) But if there’s an identified gene you can ensure you don’t pass it onto your children. And if you were a BRCA carrier, and if you don’t want preventative surgery, they will obviously monitor you very closely (although they will be doing this anyway due to your diagnosis and family history) andurge ovarian risk isn’t that high until you hit 40 - so you have quite a few years to have your family, if you decide to, before worrying about your ovaries.
Where in the country are you based? I was referred to a very respected geneticist in London. He used to be an oncologist and lectures in cancer and genetics all round the world and has set up lots of screening programmes in hospitals like Gt Ormand St. Not only that, but he’s lovely. Really sensitive and empathetic and explains everything in simple terms. If you are down south, PM me and I’ll give you his details.
I hope your pathology report is all good news and that they got clear margins. Let me know if my experiences can be of any help to you.
Hi Brady I have a significant family history I was diagnosed with IDC in April 2011 aged 50 , I had mastectomy, chemo,rads. My Sister was diagnosed three years previously aged 50 , within weeks a cousin on my fathers side diagnosed aged 43. I sadly lost my Sister four months before my own diagnosis. I was referred for Genetic testing by my Oncologist where a family tree was established. Lots of incidences of cancer on My fathers side of family, my father died of bowel, grandmother ovarian/brain tumour granfather lung, sadly lost a cousin aged aged 40 with brain tumour. The advice I have been given is that all of the girls in the family including my own two daughters aged 17 & 20 should be reffered to Genetics through their doctor when they are in their mid 30s, also the daughter of my Sister diagnosed with BC, and my other Sisters’ two daughters. I was surprised that I wasn’t offered an immediate blood test BRACA 1 or 2 but was instead referred to the familial breast cancer study, BRACA 3 ( I think thats what the trial is to identify unknown gene) in Feb 2012, so too was my cousin. If either of us is found to carry a yet unidentified gene that will change the future plan for our girls. Please dont think and worry yourself too much too far in advance, you have already had a shock and have a lot to deal with as it is. I do worry about the future for my other Sister and all of the girls in the family but medcine has changed so much and I’m sure another 10 yrs + things will have improved again. Don’t let it stop you from living your life, this hideous disease affects our lives too much as it is. I’m considering a preventative mastectomy as I’m due to have reconstruction in the spring, I’m going to speak to recon surgeon next month. Wishing you a very quick recovery time following your surgery.
Jo
Hi Brady,
I had double mx because i was found to carry brca 1 and also sequence changes in brca 2 having lost my mum and aunt at relatively young ages to bc.I was diagnosed with bc at age 49,had lumpectomy then a year later found out i was a carrier of brca 1 which I had passed onto one daughter,but not the other daughter.( that is when I decided to have double mx and also had my ovaries removed) My 28 yr old daughter who tested positive had a double mx with immediate recon on 4th july this tear and is doing very well,she will have her ovaries removed when she is 35.She is very relieved to have the op and almost looked forward to it as it took the fear away.However my cousin,aged 26. (the daughter of my aunt who died) refuses to be tested ,saying she will deal with if and when it happens.I respect her decision as it is down to personal choice but she knows I am there for her if she changes her mind.It was awful for me at the time ,i felt so guilty for passing the gene onto my daughter but I am relieved she has had the surgery as I would have hated for her to have had to go thru chemo and rads.Its a difficult time for you and I wish you all the best for the future.
Di.x
If you would like to give the helpline here a ring they’ll be only too happy to discuss this with you. Lines are open now and until 5pm today (Mon-Fri 9-5 and Sat 10-2) calls are free, 0808 800 6000
i was diagnosed with bc at 37, then a new one in the other side at 40 and a recurrence two years later. i was found to carry a brca 2 mutation, although have very little family history as it appears to have been carried through the males in our family. I inherited it from my dad. I have 2 children 18 & 21 who havent been tested yet.
most people with a strong family history wont have a mutation… Only 20% of those tested are found to be carrying brca 1 or 2, so its much more likely that you wont have much more info, but you really need o discuss it wuth your genetic team… Having the discussion will not automatically result in testing… In many cases people want tested but there is insufficient risk to warrant testing, but equally there are many people with a significant risk who would just rather not know… Its a very personal choice and no body can tell you what you should do… There is no right or wrong… You just have to make a decision that is best for you… Dont feel pressurised into doing something your not happy with.
its no selfish or naive to worry about passing thngs on and i know some women who wait until they have had their family before being tested as they dont want it to influence their decision, but equally as somebody else pointed out the can do pre-implantation genetic testing through ivf to only use embryos without any known gene mutation present in your family.
it may be better for you to deal with your DCIS first and think about the genetics later… But again its your decision but speaking o the genetic counsellor might larify things and help you to decide what you want to do.
So sorry to hear of your struggles at the moment. I know exactly how you feel. My Mum was dx with bc at 47 and survived it. But my Mum and Nan both died of Pancreatic cancer. I was dx with DCIS in June this year and chose to have a double mx (one side risk reducing) with temporary implants. I’m having a DIEP recon next year.
I thought so long and hard about genetic testing. We have no other bc in our family either side but the genetics team were interested in us more for the Pancreatic cancer link. BRCA2 is indicated in the PC side of thngs. If I prove to be BRCA1 positive then I will think about having my ovaries removed (I’m 42 and had my kids).
You have such a lot on your plate at the moment. Take every step as it comes and don’t over think things. Easier said than done, I wish I could take my own advice!!!
I will be getting my genetics results towards the end of November so at the moment I am concentrating on getting strong again after contracting an infection in my left implant and spending another 9 days in hospital!!! I do hope you can get some answers soon, but concentrate on looking after yourself!
Am going back for follow up to my WLE tomorrow so will probably raise it again at that appointment - depends what the surgeon says I suppose!
I know logically that I am less likely to have a known gene mutation than have one but can’t seem to make brain work in a logical manner at the moment! Initially I viewed the uncertainty as a bad thing - i.e. if you don’t have a known mutation then it is probably that you have one that is not known - but actually I think now I would take comfort in a negative test result. It would be like I had done everything I could and could live my life without feeling guilty about things like having children.
The flip side is the implicatiopns of a positive result - risk reducing surgery and possibly no kids for me. It is a massive decision. I know no one can make the decision for me but I was hoping that others on this forum could share the thought processes they went through. Especially younger women who do not have kids yet. Might help bring some order to my crazy brain!!
I spent hours mulling over the genetics thing. I came to the conclusion that I have 50% chance of having a negative result which puts me back in the realms of being on a level playing field to the rest of the population. If I have a positive result then it will be only the pancreatic side that will worry me most and actually that will freak me out far more because the breast cancer issue is sorted for me!
It is a huge decision and can open a can of worms for other members of the family. My brother doesn’t want to know, which is fair enough but if I test positive it’ll give my cousins the opportunity to decide if they want to be tested. I had my blood test in August and have been told to expect a result by the end of November!
Talk to your family too, because they may be able to put things in a different way and help you. My cousin really helped me to see things in a different way.
Thanks Viv - I know there is a reason it takes so long but Aug - November is a long limbo period isn’t it. Must be frustrating for you to wait so long. I guess it gives ample thinking time about what you would do if the results are positive.
That is the other reason why if I am going to be tested, I just want to get the ball rolling asap though. Don’t want to drag it out any more than necessary.
I hope you are feeling better after your extra days in hospital? Not at all what you needed I am sure. Understand what you are saying about pancreatic risk - are there any risk reducing options if you do come back positive or would it just mean more regular monitoring?
I have spoken to my mum about the genetic thing - in a way I think she would rather not think about it. I don’t know what my sister / brother think but it would affect their kids in the future so it is a big responsibility.
One thing I was thinking about today is that I assume they look at each side of the family individually - so for me I have:
Fathers side - Grandmother with breast cancer in late 30’s, dad died of liver cancer at 59 (unsure if that has any impact) and sister with breast cancer at 37.
Mother side - Mother with some kind of pre-cancerous condition of the ovaries in late 30’s and sister with breast cancer at 37.
For want of a better word - I don’t know which side would ‘win’ in terms of significant family history. I think the young age of onset is the most wrrying factor for me.
I suppose if you were really unlucky you could inherit a mutation on both sides… that is not a cheerful thought!
vivtwins if you prove to have brca2 or even a strong history of panc ca in the family without being brca 2 there is a research trial called EUROPAC which is offering screening to families such as yours… I have an appointment in 3 weeks to discuss it as i have brca 2 and although im the only one with BC in the family i have had it 3 times and we have 1 pancreatic at age 43 and ovarian at age 45. I had a hysterectomy and my ovaries removed two years ago When i was 42.
brady… In terms of risk although ovarian cancer would give a higher risk… Precancerous conditions of the ovary are not linked in the same way. So its more likely you would have a higher risk on your fathers side… However some units may decide to err on the side of caution and if so this could well give enough points to do genetic testing… Basically two memebrs of a family is not enough to warrant genetic testing you normally need 4 breast cancers under age 60 or ovarian at any age over 3 generations to be offered testing… There is an alternative scoring system which your family would perhaps fit in and this is called the evans score and you normally 20 points in a family to fit the criteria for testing… If your mum is counted she would get 13 points and sis would get 8 giving 21… But if the pre cancerous ovarian is excluded which i suspect then you wouldnt quite fit as sis would be 8 and pat GM would be 8 giving 16… Whether they include your diagnosis of DCIS is also an issue as if you were included then which ever side they look at you would have enough points as you would have 8 so a total of 24 points on your fathers side.
your sister would be the most obvious person to be tested as she had invasive BC but it would depend if she felt like doing it as maybe has other things to deal with since her mets diagnosis… But as you are the youngest then its possible your DCIS would have become invasive before age 37 making your dx the youngest onset.
hopefully your genetics team will be able to discuss it all thouroughly with you… But dont feel obliged to get tested if you dont feel your ready for that yet.
when i went for testing, although i had 2 teenagers i had been planning a baby with my partner as he had no kids… i had BC twice at this stage and was having chemo which plunged me into the menopause early so didnt have the option of kids in the end, but had always been planning to try as soon as was safe after chemo. Im not sure if i would have made the same decision to have my ovaries out if i had still been premenopausal, but as i was 42 and the cousin with ovarian died at 45 i didnt want to chance leaving them any longer. I do still have pangs of regret but then i go off on a holiday and think i prob wouldnt be doing that if i had a baby in tow and had bc again last year so i know it was the right thing for me but i am 44 not 33.
Thanks for all the information Lulu - things have moved on somewhat since my last post. I have now been ‘upgraded’ to invasive ductal cancer, grade 3. Going back for another go at the WLE (unclear margins) and SLN Biopsy on 24/10. Being referred to the fertility clinic in Oxford but am really conflited about the though of injecting myself with hormones when my cancer is ER+ (6/8). I also appear to be a genetic disaster waiting to happen so really think I may have to just come to terms with not being able to have my own children.
Still have not been referred to a genetics clinic - my last appointment was when I found out about the invasive diagnosis so didn’t really talk about genetics like I thought I might.
really sorry to hear that the cancer is actually invasive your head must be spinning at the mo… Im sure the genetics thing wont be your priority at the min as you will be getting your surgery and treatment organised.
hopefully this will give you a bit of time to get your head around what you want to do in the future.
the current evidence suggests no increased risk of recurrence following fertility treatement… This is the guidance on pregnancy after breast cancer from the royal college of obs and gyn… http://www.rcog.org.uk/files/rcog-corp/GTG12PregBreastCancer.pdf
hope you find this helpful.
Only just seen your reply Lulu - thankyou for the info.
I have now had a second WLE and a SNB last week. Thankfully the SNB came back clear - am now waiting to go back on 06/11 for full results re the re-exision. Here’s hoping for clear margins!
We are also trying to stay positive about the family side of things and are attempting a round of IVF to freeze embryo’s. Appointment next friday to start the process. Very nervous about the injecting of hormones as am ER+ and have not actually seen an oncologist yet. Have discussed with BCN though who said that it would be supported by my onc - and that was before we new I had clear nodes which I assume means I am stage 1 as lump was under 2cm. No one has actually told me that but from the info I have I think I am stage 1. Point is - BCN said that they would be happy to push chemo back by a couple of weeks to do the fertility treatment - I think I am going to call before appointment next week though and triple check that is still the case!!
Think I am going to shelve the genetic side of things for now - am veering towards not wanting to know but I don’t know if that is just because I have too much on my plate already with IVF, chemo, rads and hormone therapy to come. Don’t feel I am in the right place to do the genetic testing now - and maybe I won’t ever be. I figure doing the IVF opens up the possibility of pre-implantation testing though if I do find I am a carrier in the future. Trying to cover all the bases really.
yes if under 2cm and node neg then that would normally be stage 1. Thats common for ladies having fertility treatment to have their chemo delayed for a couple of weeks… This is pretty much standard practice.
i would say that deal with the immediates too… Not everybody actually wants to get genetically tested but it maybe useful to have a discussion at somepoint with the gentics team just so you have all the facts… Genetic cancer is very rare and only around 5% of all breast cancers are actually genetic anyway… But i know lots of people arent interested in living with the knowledge one way or another and likesome people dont want to live without knowing… We are all so different.
take care and good luck on the 6th. fingers crossed for clear margins.