I was diagnosed with BC in July 2010 - aged 26 and three weeks before my wedding day. Had a lumpectomy, chemo and radio. Finished all treatment in January this year but need herceptin for the rest of the year and tamoxifen for five years as I am triple positive. I was just about coming to terms with not being able to try for a family while on tamoxifen but was hopeful that in five years I would find that my fertility had come back and everything would be OK. But I’ve just been referred to the genetics clinic and have been told that if they find it is genetic then I will have an 80% chance of getting breast or ovarian cancer in the future so they would offer me preventative mastectomies and ovary removal. It will take 6-10 weeks for the results to come back and I’m finding it so difficult. All I’ve ever wanted from life is a family. I was so looking forward to being married and getting pregnant and breast feeding my baby. I am watching so many of my friends and people around me getting pregnant or having babies and it hurts so much. I know I can’t make any decisions till I get the results of the genetics test. But I can’t stop agonising over what I’ll do if they come back positive. This isn’t supposed to happen to people my age when they are just starting out in life. And what a first year of being married. My poor husband has stuck by me (he’s amazing) but is depressed and finding things hard too. Sometimes it helps to let your feelings out. Thank you for listening!
Oh heck…not any wise answers but wanted to say I was reading. What a situation for you both.
I think there’s some scheme that allows people to have their eggs frozen etc but I could be wrong. With so much modern technology for harvesting eggs/surrogacy/whatever other things might work, I wonder if there’s some new way round any of this? Don’t want to get your hopes up for no reason, but I really hope there’s something that might work…
Ann x
Hi Rainbowdust,
I was diagnosed yesterday and had an MRI scan today. My consultant says I will be straight into chemo and the genetic testing. I’m 33 and got married 1 and a half years ago and the plan was to start trying for children this summer - obiviously before I was diagnosed. All of my friends are also popping out babies left, right and centre. In fact, we’ve moved house, and I’ve changed jobs all ready for this - so I know completely where you’re coming from. I don’t know how serious mine is yet, but feel my future has a huge shadow over it regardless as even if I do get through it, I have the same problems with the genetic testing and not knowing if I will ever have babies. I’m meeting a fertility expert tomorrow, but my consultant has warned me against delaying treatment to harvest eggs etc.
I don’t know anything about it all - but can they delay the preventative masectomy/ovary removal for a few years - or could it return immediately? And are you able to harvest eggs? I have a friend of a friend who had fertilised eggs frozen prior to chemo and she’s now had 3 babies. AND each time she just went to the clinic and got them implanted - rather than other friends who’ve tried for years, and years to have a natural pregancy.
It’s very easy to say that it is the best news that you have done so well with your treatment - but so difficult when the future you always imagined is suddenly jeopardised so much.
Wishing you all the best and would love to hear the results and your choices.
Lots of love xx
hi rainbowdust sorry to hear your struggling a bit right now.
some people dont want to know if they have genetic mutations, some want to wait till they have a family and some people feel they cant move on unless they know… we are all very different… i found out i had brca 2 about 15 months ago… but its important you arent pushed into having a test that you dont want.
the figures for getting BC are about 80% risk by age 80… if you have already had BC then you wont have an 80% chance of getting another… it is still higher than the general population and more likely at a younger age but its around 25% chance of getting a further cancer in your lifetime. ovarian cancer risk varies between 20-60% depending on which gene mutation you have and what cancers you have in your family… ovarian cancer even in families with genetic mutations are still more likely over 50.
i was 37 at first diagnosis and had WLE and SNB followed by rads and tamox. i got a diff BC in other side at 40 and had another WLE and SNB followed by chemo and rads. planning mastectomies in the future maybe next year but not going down that route right now but did have a hysterectomy and ovaries out 8 months ago when i was 42 after finding out that the OV ca in my family occurred early… was a bit of a bummer as was about to try for a baby when i was diagnosed with 2nd cancer… although im lucky enough to have two older children.
even in families with significant family history only around 20% of those tested will be positive for a mutation.
many of women i see what to wait till after they have a family before making any decisions and in some way their risk is greater… people with a gene who have breast cancer have a lower risk of a second one that somebody with a gene who hasnt had BC.
young women who get breast cancer are still more likely to be sporadic than genetic… about 30% of under 30s are genetic compared to around 5% of all breast cancers being genetic… the thing about this though is that 70% are not genetic.
so dont give up hope… and even if there is a gene change there are options.
sorry for the essay
take care
Lulu x
take heart, I was dx at 34, 14 years ago, I was all the er/pr etc + too then, I had mx, chemo etc, I was considered too old for egg storage and didn’t have an OH(other half) then so didnt want frozen fertilized eggs, it was devastating when I was told it would probably be not likely I would have children. I went on to marry and have 2 beautiful kids, now 7&9 and with only 1 boob I fed them both myself!!!
I agree with Lulu it is possible to have a family first, no doubt you can be closely monitered. don’t discount anything yet all the odds are in your favour xxxx Jeanette
Thank you all,
Your comments have helped me to feel a bit better. Actually I was feeling better today anyway and reading this has helped further. You know what it’s like, some days everything just gets on top of you but most of the time I am able to be positive.
Ann, thank you for your optimism. I knew even before the whole possible genetic thing that my plans for the future would need to be flexible and there are lots of options to consider. But I guess I just felt like a winge the other day.
Sandytoes (I love your username!) I am so sorry to hear of your recent diagnosis. Your story does seem to parallel mine. But that’s why this website is so useful. We can suppport each other and share our journeys. As I am further down the line than you feel free to ask anything that may help you. I hope your meeting with the fertility expert went OK. My husband and I went too but decided in the end that it was more important to get me healthy first and there were plenty of options to consider in the future. We were offerend embryo storage but that meant delaying the chemo and increasing my hormone levels and as my cancer was hormone receptive we decided it wasn’t worth the risk. I had zoladex injections during chemo to shut down my overies in the hope that the chemo wouldn’t affect them as much. I have been menopausal since then and haven’t had a period but the tamoxifen causes that too. Hopefully my preiods will return eventually and when I finish the tamoxifen I will be able to have children before deciding to go for any risk reducing surgery (assuming the worst that the genetic test comes back positive). And If not then my sister in law has offered us her womb, and her eggs - till she realised that my husband is her brother and therefore that really wouldn’t be a good idea! I have three female cousins who could donate me an egg, if they weren’t genetic carriers too, and I know adoption is always an option too. There is a dark cloud hanging over my furute but today I feel strong enough to wade my way through it!
Lulu, thank you for your essay! You obviously know more about the risk etc than I do and it’s good to know it’s not as bad as I might have thought. That’s the trouble with the consultants giving you snippets of information without really explaining it. Then you agonise over it without really understanding! It sounds like you’ve had a bit of a journey too. I am glad you have two chidren but I know that won’t have stopped you hurting when you couldn’t have another one.
Jeanette,Thank you for being an inspiration to me… good things are possible at the end of this drak road.
x x x x love to you all x x x x
Your welcome
hope springs eternal eh? It took about 12 -18 months, after stopping both zoladex & tamoxifen, before my wee boy arrived, swiftly followed by a beautiful baby girl, you can’t really see them in the picture but if you look carefully they are sat on a log looking out at the forth rail bridge near edinburgh on a visit a couple of years ago, they are the most precious ‘things’ I have ever had and you have to believe that one day you too will gaze adoringly at your own special gift XXXXX
Hello Rainbowdust,
I met (apparently!) the top geneticist in the country today. He was LOVELY and so helpful and took so much time to explain everything to me. I feel much better about the ovary bit as he said that if you do test positive your chances of ovarian cancer don’t increase until your 40s (going from 2% to 40% I think it was) - so if you tested positive and you are young and hoping to have children (obviously assuming the chemo hasn’t affected us - touch wood!) you can make the decision about the double masectomy which is the biggest threat - but can opt to hold off on the ovary removal until a bit later when you’ve had your children. To be honest I’ve gone from loving my boobs to hating them and may make the decision to have them both removed even if the results come back negative as there’s still a chance of getting BC again (don’t worry, I know it’s early days for me and I’m not making any rash decisions!! It’s just how I feel now…!).
I’m obviously at the beginning of the journey - got to start the treatment etc first, but this has relieved me somewhat. At the moment I feel so overwhelmed by worrying about my mortality to how difficult the treatment is going to be to not being able to have children to the genetics etc etc - so relieved about finding out more about this!! One less thing to worry about. Next step is getting to the bottom of the fertility v treatment debate… I can’t harvest eggs either as my cancer is hormone positive.
You’re right though - there are lots of other options…just difficult when surrounded by people of our age happily doing the whole wedding/baby/breastfeeding thing. Hey, ho. Life can be crappy and unfair sometimes!!!
x