I’m 39 and finished treatment for grade 3 triple negative bc in November 2012. This is the first time I’ve posted. Most of the time now I can ‘shelve’ the cancer thoughts and get on with life but yesterday I went for a genetic counselling meeting so I can be tested for the brca1/brca2 gene. I thought I was going into it with my eyes open (forewarned is forearmed etc) and that it was my responsibility to find out everything I could for the sake of my five year old daughter. I still believe I’ve done the right thing but now I’m really struggling; I’ve been back ploughing through all the online information highlighting the poor prognoses for tnbc patients. I know it’s irrational, that wallowing never helped anybody and that I should focus on all the recently posted good news stories on here, but the unknown, unfortunately, remains terrifying! Feel rubbish for feeling so sorry for myself but I feel frightened and lonely and sad and just wanted to get these thoughts off my chest!
Hi nicola
sorry your feeling in a bad place right now. Genetic testing may not be a great idea at the moment if your really worrying about things… Even if you were to test positive your daughter couldnt be tested till she was 18 so you have plenty time to think about it.
having a gene mutation wont give you a worse outcome than somebody else with the same cancer, although it means your at an increased risk of a new cancer. I am a brca 2 carrier and have had breast cancer 3 times between 2006-2011 but im still here and cancer free… Last two were TNBC.
have you spoken to a psychologist or your gp about your feelings? Some people need to some extra support such as antidepressants… I took them for a few months when i was having treatment and when i found out i was a gene carrier and they helped me immensly but have been off them over a year and back in my happy place without them now.
maggies centre and macmillan centres have counsellors you can speak to and some cancer unit have their own psychologists. The genetics dept should also allow access to discuss testing not only with a genetic counsellor but also with a psychologist. Please do try and utilise these services and do it all on your own.
hugs Lulu xx
Thank you for your advice and support Lulu, you’re obviously a very strong lady X
Hi nic o just read your post when looking for threads on brca . Finished my treatment for tnbc Jan 13 and had genetic testing now awaiting the results . Just feel its never going to go away this nightmare thats taken over my lifefor the past 18 months. On the outside everything looks back to normal back at work returned to usual social activities but emotionally feel far from my normal self spend most of the time panicing about it coming back or re living the chemo days . Sorry too moan but just can’t seem to get past this stage also wondering how long you had to wait for results had blood test 9 weeks ago feels forever!
Hope you have now got your results and have moved onto the next step on this rocky road .
Hello Rosiedog,
I just saw your post on this thread and wanted to offer you some support. I too had genetic testing post treatment and the waiting is hard. It is trying to prepare for two oh-so-different outcomes and you don’t know what to think. As Lulu said, I think its important to get help. There are no medals here, only us and our lives. I go to a group at my local Maggies and think the Helpline here at BCC and their support is really excellent.
I think many of us still feel that we are processing it all months after the treatment is ‘over’ and there are still the after-effects. Have a look at the body image gallery. Some of the stories of women highlight their own challenges and I am sure it will help you to feel you are not alone.
Good luck and take care, Rattles x
Hi All
I wonder if you could help me.
I had tnbc in january 2008, followed by surgery radiotherapy and chemo,
I’ve been trugging alone nicely since until I went for my follow up appt yest. My surgeon has suggested I go for gentic testing as i was dx when i was 34.
This has scared me and opened up a whole can of worms, as to what to do for the best! I have a daughter myself aged 8 and two sisters. but no family history of bc or ovarian cancer.
thoughts please it would help sooooooooo much
thank you in anticapation xx
Paula
Hi, I too am 39 and was diagnosed with TNBC in September 2014, after 3 failed attempts at Chemo I then went on to have a Mastectomy and Reconstruction followed by 15 Cycles of Radiotherapy, I was given the ‘All Clear’ in March. I asked for Genetic Counselling as my daughter is 10, but I’m now worrying if the result is positive if I will possibly need to decide if a second mastectomy and hysterectomy is the way to go, is this possible? Also the thought if telling my daughter or when to tell her is awful!!!