as the title says i have had had breast cancer twice… first in 2006 aged 37 i had a grade 1, ER pos, node neg, 1.3cm IDC, and in 2009 then aged 40 i had a grade 3, triple negative, node neg but lymphatic invasion, 1.9cm IDC.
after my 2006 diagnosis i was admitted to a research trial due to my young age and my mum having had BC 18 months before me… the results took almost 12 months and came back negative for brca 1 and 2.
after i developed BC again last year in the other breast my surgeon referred me to get tested in the lab rather than a trial back in oct.
today went along thinking it would still be neg but was positive for BRCA2.
now have to decide about whether to have preventative surgery or not…
i mean… is my risk increased as iv had it twice or am i even less likely to get it again?
oh soooo many questions!
away to do some researching but any input from you guys most appreciated.
That’s really bizarre??! I would have thought that you would have been born with the BRCA gene and therefore it would have shown on your first testing.
Have you had a chance to speak with your consultant about it?
its genetic so i was born with it… just that the testing 3 years ago didnt identify it… either it may not have checked 100% of the gene or the techniques have improved or things that they maybe thought werent significant changes have now been found to cause cancer.
my genetic nurse has another patient with a previous neg and new BC she is also going to test as mine is the first neg thats come back positive.
i was really surprised myself… but just means that the baby we were going to try for wont be happening as it would have a 50% chance of getting it too and although my older kids have the same risk i didnt willingly and knowingly choose to do so.
I had a test years ago when my mum got BC and we were both negative, but I do remember them saying at the time, we’re only negative to the genes that had been identified at the time. I am now going to be tested again (don’t know when, exactly) so it will be interesting whether I had the same result as you.
My understanding (admittedly on very little knowledge), is that if you’ve had it once you are more likely to get it again, so I presume that stays even truer if you’ve had it twice. I think I would have a preventative MX on the ‘good’ boob if I come back positive.
I am so sorry that it means you have to rethink for another child too. This is the bit that scares me most. I don’t have any at the moment, and discovered this BC when I became pregnant and miscarried, so all of that trying again is now on hold until I am 40 or so! Not my original life plan! I am also worried for my brother’s 3 children (2 girls, 1 boy) as I understand it can be passed through the male genes as much as the female ones…
long time no speak! So sorry to hear your news. I completely understand what must be your devastation at the news and your reluctance to start a baby with your partner. I know that you, like me, are realistic and you, at least, are very knowledgeable about the progress that is being made in the research of this horrible disease. I commend you for thinking about the legacy you would be leaving a future baby…but research is really moving on and even for your girls (not dissimilar in age to mine if I recall) my friends who work in oncology are quite dismissive of their risk as they are so certain of an optimistic future for them so even more so for newer siblings!
Obviously you have lots to consider about your own well being before you think of using that experienced body to create another! But don’t dismiss the opportunity immediately because of the genetic testing. You have such a lot to offer a baby it would be such a waste to miss the opportunity.
Sorry, I’m beginning to sound a bit odd to myself!
I was about to post pretty much the same as Lee. The progess being made in the genetic field (I stress “genetic” here, as opposed to cancer), is impressive. Let’s look at the worst case scenario-you have a child who in about 25 years or so may be identified as having the gene. By that time, there is a very good chance that the gene could be manipulated so it is no longer dangerous.So, dismissing having a child at this stage may be premature. Do speak in detail to the genticist about your fear, and see what they advise-you might be surprised.
I too was diagnosed with BRCA2-about 6 years ago, so not sure what happened with you earlier test. However, mistakes can be made, so it sounds as if it was somehow misdiagnosed?
I had preventative surgery-a second mastectomy, and hysterectomy once I had my test results. Sadly I then had recurrences to my pleura, liver and bones several years later, and I’ll be on treatment for the rest of my life. Having surgery wil decrease your risk-but it won’t remove it completely.
You have a huge amount to think about-if you think I can help further, and want to chat, please feel free to pm me. Good luck.
Oh Lulu, I really am sorry to hear your news - it must be a rotten bloody thing to hear.
I’m thinking of you - hope we can meet up on Sunday
love monica xx
Lulu,
I’m really sorry to hear about your results, i too had the test 2yrs ago but it came back neg no-one in my family had bc before me apart from an older aunt who was in her 60’s when she was dx, unfortunately she died.
I had the test done becuase of the age i was first dx the fact it came back and was triple-neg, but they say my girl will still have to be closely monitered because her chances are now double what they were because of my dx.
I feel even sadder that you feel you cannot try for another baby but at the same time i completely understand it, it is a big decision to make for anyone who has had a cancer dx, when i was first dx my team practicaly insisted my husband have a vasectomy as getting preganant again was to be a no no and i was only 30 when first dx and although i would have liked to have had a 3rd baby, for myself i would have been too frightened incase it came back and left all my children without a mother, in those days of course it was much different, then no-one would consider the thought of me having a 3rd baby but now it could have happened as things are much different now, i think you are wise in thinking really hard about it.
When my hubby had his vasectomy and had been given the all clear about it he went on to have an infection and a tube knitted back together and resulted in me getting pregnant just after chemo ended, i was so excited i was looking at prams and everything but frightened too, not one of the docs approved but in the end i lost the baby and my hubby went on to have a 2nd vas, that time the docs made sure there was no chance of anything wrong, but it took me a long time to get over losing the baby, even though i knew in my mind it was prob for the best, but when you have your mind set on something as precious as this it is hard to have to give up your dream.
lots of love
reneexx
hi, so sorry for your news. I was told few years ago that in my wider family might be brca gene but no one to test,would start to get tested on 35th birthday, guess when i found my lump. I got tested but in the meantime as thought likely i had my ovaries removed cos m=of my personal risk and having chemo think affected this anyhow. i was diagnosed with brca 1 gene, i have been advised to have another masectomy which i am going to do. what i would say to you though is that if you really want kids then consider it now, things are progressing so much. I decided to do what i could to help myself. I got my gene from my dad who is one of 8 and found out only 2 of them have it, none of their kids and my brother doesnt have it, so… nothing to say its passed on because on the other side of my family all had BC and none of them have the gene, rambling now xxx good luck
Oh Lulu, I am so so sorry,it must have been a shock when you expected it to be neg.Your head will be buzzing with it all.Big Hugs from me,See you Thursday,wine will be required!
Dot
xxx
so much of the info relating to this is people with the gene who dont have cancer already its hard trying to find info for people who are post diagnosis… but its good to hear other peoples views.
and yes dot i think big glass of wine will be the order of the day on thurs.
Just thought you might find the BCC booklet on ‘breast cancer in families’ useful to read. If anyone would like to order a copy or read it on line follow this link:-
thanks sam id had a look at that before but seems to be aimed at people without cancer but with breast cancer in their families rather than an individual with breast cancer who has genetic cancer.
might be something BCC could look at in the future eg what the risks are when you already have cancer and the gene for recurrence, secondaries, childbearing, risk to existing children etc.
but i do think your booklet is good for people who are worried about familial BC.
At the moment Lulu, there do appear to be very few people who fall into the BRCA2, have had cancer and then recurrence category. This describes me to a “t”, and I recently participated in drug trials designed for this group. Not surprisingly, the research team are struggling to find people to participate. I guess the problem is that some people who have had the genetic cancer, won’t have recurred, some will have recurred (and died). The discovery of the gene is relatively recent, and so information by the nature of it remains scant.
Just wanted to let you know I am thinking of you - so much for you to take in and decisions to make. I’m sure you will make sure you get the information you need to make an informed choice about your future - meanwhile that glass of wine sounds like a very good idea.
hi belinda i had found that and its on my list of things to ask about as both the embrace and focss trials both appear to be running in edinburgh so might try and see if i can be recruited.
I was dx November 2008 and then in September 2009 discovered that I met the criteria for a referral to the genetics service. I eventually got referred in November and have an appointment for next week. I don’t have a particularly extensive family history but it includes breast, ovarian and prostate. At the moment I’m still trying to work out what questions I want to ask next week. I too have found that most of the information out there is aimed at people who are worried about risk because of relatives being diagnosed.
I also have had breast cancer twice.
First in 2002 (aged 38) - right breast aggressive grade 3. 6XAC chemo, lumpectomy & 30x radio sessions.
Second in 2006 - left breast- lumpectomy, 4xTaxotere chemo & 30 x sessions radio. Triple negative & found out in August 2009 I’m BRCA1 positive - extensive family history of Breast Cancer, of which all died including my Mother aged 38.
I had Oompectomy in April 2009.
Am now awaiting a second opinion of the necessety to have a double mastectomy, but as you say it’s very difficult to find research on third or fourth primarys or reacurrances. The other side to this is that alot of women have mastectomys after a second primary, thus leaving less evidence for research.
I’m presently waiting for a second opionion from the genetics and will let you know the outcome.
Best Wishes to you…x
thanks bernadette… i have been doing a bit more thinking myself… and some things have occurred to me… that the two primary tumours are both different so not only do i have a risk of getting another cancer due to the gene i also have a risk of recurrence from both tumours… so i think im becoming more resigned to having the surgery but seeing my BCN tomorrow and will have a wee chat to her about it and hopefully see my consultant soon to discuss in more details.
look forward to hearing how your next appointment goes.