I’m 34 yrs old and was diagnosed in May, underwent a right mastectomy in June and started TAC chemo regime in July. I’m the 9th female in my family to be diagnosed. Is there anyone with any similar stories?
Hi Embo,
I’ve just turned 34 and also have a very strong family history but am not a BRCA carrier (although due to my family history my geneticist believes I carry one of the genes they know exists…but haven’t identified yet).
It’s scary when you’ve seen close family members go through it all isn’t it. 
I was also diagnosed in May, but had chemo first. I have just finished chemo (AC and T which I think is the same - just not all together) and am having a bilateral mastectomy tomorrow. I have to have a left mastectomy so have chosen to have my left breast removed too to reduce my risks of a new primary in that breast (really don’t want to go through this again) and also for symmetry.
I met up with a girl from the forum whose story is very close to yours. She is our age, a BRCA1 carrier, lost her mum and a number of aunts to breast cancer and has had alot of women in her family either diagnosed with breast or ovarian cancer. She had eggs frozen, a bilateral mastectomy and ovaries removed. I’m not sure how often she is on the forum but hopefully she will pop in and tell you her story. Most people whose treatmant has finished no longer use the forums.
x
Hi there, our situation is a both different and similar. I am a bit older than you both. I was diagnosed with a brca1 mutation in May, 1 year after having treatment for triple- breast cancer chemo. ( ecx4 taxolx4), wle and rads. Breast Surgeon says if we had known brca1 status at the time of daignosis I would have had bilateral mastectomies at that point. I have asked for 6 months to decide- xmas. I have been advised to have ovaries removed as screening is not effective. I have a young daughter and when diagnosed did not take up offer of egg-saving, so at that point knew I wouldnt have more children. What I didnt know then, but do now, is that 2 generations of women died of breast or ovarian cancer on paternal side. But also my maternal grandmother and aunt both had breast cancer (but survived). Its all been very hard to manage. I think I have decided to have surgery but very scared about it. Rattles xx
im brca 2 anf bc first at 37, then 40 and about undergo chemo again for a recurrence at age 43.
the gene came from my dad and there is no history of breast cancer in his family that we can trace.
iv not had mastectomies just lumpectomy on both sides and removal of nodes in chest muscle and was planning to have double Mx next year but this is delayed now until iv finished my current treatment.
i didnt have chemo for the first cancer, but had e-cmf when i got the 2nd one and gonna get tax/carbo for this one… they didnt know i had a gene until 18 months ago otherwise they may have recommended different chemo and prob would have recommended Mx at the time instead.
i had a hysterectomy and BSO (ovary removal) last year… wanted another baby but was told i was too old at 40 to have IVF and already had two kinda although my OH had none… i was pretty upset about this at the time but come to terms with it but still have the odd wee wobble… i used to be a midwife but have given that up now too.
3 of my very good friends are brca 1 carriers… 1 age 36 had bilat mx at diagnosis without recon and chemo, 2nd age 24 had lumpectomy and fec-t, 3rd age 35 had bilat mx fec-t and delayed LD recon… the middle one still has her ovaries but she is in her twenties and the other two have had BSO.
take care
Lulu xx
thanks so much for your responses, I read them with a lump in my throat & tears in my eyes but you all know first hand how hard this is.
My mum was diagnosed 10 years ago and is the only surviving relative. Go Mum!! Due to this she is the only person in our family to have had any form of genetic testing, she is BRCA1+. My BC is triple negative, grade 3 and my lump was 42mm. My Oncologist, who also treated my mum, advised me that in his opinion I’m more than likely BRCA1+ too. I have 2 sisters as well. Last week we went to see a genetics counsellor, both my sisters have opted to have the test and receive their results in 4 weeks time. I have opted to wait until all treatment is completed, I don’t have the headspace for this right now.
Our family history is on the maternal side, all but 2 diagnosed in their 30’s, the other 2 were both under 50. All had BC apart from 1 with ovarian.
I had a miscarriage in March at 7&half weeks, our first baby. Because of this I was referred for egg harvesting. This was refused as my PCT didn’t fund fertility treatment. However it wasn’t possible to go private either as I was advised that I didn’t have time due to starting chemo.
Hello Embo
I’m 37, was first diagnosed age 36 and found out then that I am BRCA1 so had bilateral mx, no chemo though. Slightly different in that the only family member affected of whom I am aware is my grandmother who I did not know (died long before I was born) but there were other strong reasons for testing.
best wishes, hope you are doing ok
Claire2010
Sandytoes,
Best wishes for your op tomorrow!
Wishing you a very speedy recovery.
Cannoliwings X
Sandytoes, I hope you are recovering after operation. It would be good to hear more about how you have coped and how you feel now-when you are up to it.
Embo, so sorry to hear you lost your baby. That on its own would be hard enough to deal with, on top of cancer and brca mutations. I went to a conference at the rmh and they had a speaker who talked about PGD and said they can get funding for this from the PCT if a woman with brca1 is under 40 and doesnt have a child already. Maybe you arent in the right space for this now, but mentioning it incase.
I have a full-sister who doesnt want to be tested. A half-sister (incidentally who I have not yet met!) and who does want to be tested.
The genetics team say that women who have ovaries removed (in their studies)are 50 per cent less likely to develop breast cancer, but as this includes women with brca2, I am not sure if I am convinced by this, but dont really understand it well enough. Incidentally, I had a large tumour too- 5 cms at widest point and I gather that most women with brca 1 mutation develop triple negative cancer, but not all women with triple negative cancer will have brca1 mutation (took me ages to work that one out!)
Hope this helps, Rattles, xx
Hi ladies,
Thanks so much for well wishes. Had a late op so only just back on the ward and RAVENOUS! Nil by mouth since last night. Rattles - feeling ok so far - just glad it’s out. Have seen my flat, nippleless scars and feel surprisingly OK.
Will write more tomz. Am also really struggling with the whole potential no babies thing. In fact, that’s far more upsetting than any off this boobless cr*p. But will write more on that tomorrow. At the moment I’m happily floating along in a morphine daze…!
X
Sandytoes I’m glad your op went ok. Hope things continue to improve and that your fertility will return post treatment.
Rattles with respect to triple negative disease. Most brca1 carriers don’t have it but it is much more common in brca1 than the general population. About 10% of all BCs ar TN but it’s about 40% of brca cancers I think. But your right that not everybody who has TNBC is a mutation carrier and not every mutation carrier will get TNBC.
Lxx
Well done Sandytoes, now is the time to focus on recovery, but yes it’s hard in so many ways.
Lulu, thank you - sometimes I feel like the disagreement and lack of certainty could drive me mad: I am very clear that despite what you say (and its not that I disbelieve you)that most brca1 have trip. -, this is why they say they are so confident about view of risk (I now have this in black and white). What is your take on ovary-removal as a method of reducing breast cancer risk? Rattles, xx
Sandytoes - glad to hear that you’re doing ok, and that you felt ok when you saw your scars. You never know until you’re there really how that will go. I don’t know about you but I was very relieved, for some reason I let it build up in my head that I was going to look hideous. Take care xx
Rattles, Lulu & Claire - thanks so much for your replies. I’ve been advised that I can have a left mx next year and double reconstruction. As for ovaries being removed my oncologist said that they don’t perform this surgery on women under 40 due to the risk of early osteoporosis. The thought of more surgery frightens me, first time round I was rushed back to theatre as I developed a haematoma. But then so does the risk of it coming back, I have chemo with some ladies who developed secondaries and are now receiving palliative treatment. I salute them because its hard work putting yourself through something that makes you feel so awful.
My fertility is also a major issue… I never really had time to get over my miscarriage before I was plunged into this nightmare. The genetics counsellor discussed PGD when we met but she had very limited info regarding eligibility.
xxx
Sandytoes - what a gal you are!! Glad it went ok !
Hope the morphine is still doing it’s wonderful work - I LOVED IT!!
Better than anything recreational - so I hear!!!
cant believe its 5.15 and I gotta be up in hours. wide awake from pre tax steroids yo!!
Embo I am 31 and BRCA 1/2 with Grade 3 TNBC - it was a invasive ductal carcinoma in situ and under 2mm. I had the lump out with a sentinel node biopsy and now FEC -T chemo 6 in total. Also Surgeon told me today I now gotta have full node clearance once chemo done as there was 1 node positive and Lympho Vascular Invasion. BUMMER! am thinking about an elective bilateral mx with immediate recon and will try me ole’ get ovaries out by the time i’m 40. I was extremely lucky and was able to do fertility pres. My mum and her mum died of Ovarian C. Very sorry to hear of your family losses and your miscarriage. PM me if you ever want X
I was diagnosed 2 years ago aged 36 with a 11mm lump, no node involvement. Mother died of bc and her mother of ovarian cancer so had genetic testing and I’m BRCA1 (I’m one of the friends Lulu referred to in her earlier post: Hi Lulu!). My bc was oestrogen + (not triple negative); I had bilateral mastectomies without recon, chemo and radiotherapy. Horrible thing to go through, but so thankful we have the technology for genetic testing. When my mum developed bc 35 years ago it was a different story…
Hello Embo!
Just checking in re the fertility thing. I am so sorry to hear of your miscarriage. Enough to deal with without all of this cr*p! It is such a worry. I was also rushed through without a chance to harvest eggs due to being ER+ and having a large tumour and them not wanting to flood my body with hormones and start chemo ASAP.
I’ve since seen 3 different fertility experts - all who have given me different facts and figures! My oncologist said I had a 75% chance of being left infertile on my dose dense chemo regime. One cancer fertility expert said it was only 25% and the other 2 said I had a 50:50 chance. So, it’s all a bit of a gamble. What I’m also stuggling with is that I will be on Tamoxifen and so will have to wait for 5 years plus a bit to see if my periods return before I find out whether I have kept my fertility or not. I feel in limbo. I will be almost 40 by then and so doubt adoption will be an option if I then find out that I have been left infertile. I don’t want to wish the next 5 years away. If I knew I would be able to have children I would use the next 5 years to plan for that (I had started an accountancy course so that I could work from home and look after kids as we’d just started trying when I was diagnosed). But if I knew for sure that I’m never going to be have children I’d get some help to come to terms with that and then maybe throw my efforts into some sort of career or something…I just don’t know.
Does anyone know if you can get your fertility “tested” at any point?
x
PS - am fine looking at my scars and showing them to my partner - although it’s all a bit gory, bruised, and fresh at the moment! I was just glad to finally have had the op and had it out! Got my path report on Thursday…
Hi Sandytoes so glad to hear you’re doing well xx
I’m just getting over my 5th chemo, man is it rough!! But heyho I’ve got 1 more to go 2 weeks today in fact 
And Sandytoes you were right we are on the same regime.
I asked my Dr about fertility testing during my last review, her response was this; it can take up to 2 years for my periods to return, and if they do only after 12 months of trying to conceive would they then look at testing my fertility. So, we have to wait for 2 years post completing chemo before we can start trying to conceive, which means I will be 37 at the point we start and 38 if its not successful before I can have any sort of investigation. It is so frustrating and heartbreaking, I share this with each of you that have posted similar issues. My other frustration is that I live in an area where my local PCT DOES NOT fund any form of fertility treatment, regardless of the circumstances! xx