Hi new to this forum today. I am in a similar place to you but 46 when diagnosed this Jan . I thought I would be offered the genetic test as I am triple negative and younger than 50 but been told I dont qualify (could be a welsh NHS thing) I am especially worried as I have two daughters.
I am half way through chemo but had never thought that getting the test could help to decide on further preventative surgery /mastectomy, only that it was relevant to my daughters future. It is terribly expensive (£2,000 ish) but if it may help all of us could be worth trying to scrape up the cash.
Can you elaborate on the advice you were given if possible.
I was in the same predicament as you. I only had a 7mm cancer no nodes affected but was triple negative, I am 49 but 48 when I saw the oncologist. My surgeon had said I was to have chemo because I was uner 50 but when I later spoke to the oncologist the decision was very firmly in my hands. I had a 3% increase by having chemo but I also went along the lines of if its starting anywhere else I want to zap those odd cells before any problems. My oncologist said that where there is a small margin your only offered chemo with triple negative and this is because they have nothing else drug wise to suppress it. She said her team had discussed my case and she had even thought what would she do, but she never told me until after my decision what that was and she said she would probably want to throw everything at it too. She is also having my cancer cells genomically tested to see if I have one of the mutated genes as she said if this proves to be the case when chemo is finished it may be rather than have radiotherapy I will be offered a complete mastectomy and my ovaries removed as it would make me high risk. I will cross that bridge when it comes to it. For now I am awaiting chemo 9 weeks since my operation but should be any time now. She did explain that due to Easter and bank holidays they were running behind and I was not an urgent case as my cancer is currently not there!!
Let us know how you get on with your chemo as we will probably be going through it at about the same time!!
Hi Lulu, I have been thinking of you and so pleased your treatment is making improvements for you, take care and as you said to me before, 'love and light' xx
Hi Gymnut, nice to see you on the forums again. I agree that if you have all the options re treatment then the informed decision you make is the right one. Can I ask did you have readiotherapy? I have a couple of months left of my chemo and not nice but getting there
Take care girls xx
Just to add to everyone's confusion!! I was diagnosed with TNBC, Stage 1, Grade 3 with no nodes involved in December 2013. I had a WLE in January where they removed a 1.3cm tumour and also discovered some DCIS. The margins weren't clear enough of DCIS at first op so had a second 2 weeks later and surgeon was happy everything had been removed. I was offered chemo but it was only going to increase my chances by 2.9% - and for me that just wasn't enough to put myself through the treatment. I had lengthy discussions with my surgeon, oncologist, GP and breast care nurse and they were all very supportive - they certainly didn't 'push' chemo. In fact my oncologist said they usually only offer it if the chances are >4%. The one thing I have learnt from this horrible process is that EVERYONE is different. Every treatment plan is different and there is just no 'one size fits all' even when it would appear that you have the same cancer type/situation to others.
I am a fit and healthy 53 year old no family history or other risk factors.
I had the usual 3 weeks of RT and now I am trying to put the whole thing out of my mind and get on with life. My oncologist discharged me last week with the advice "live life to the full, don't worry about every little ache and pain but if something unusual for you personally persists for more than 2 weeks, see your GP". I intend to try and do this.
If it comes back, I will deal with it then. I know of ladies who have spent months going through chemo and the cancer has still returned - there are no guarantees. My decision has been very personal to me so this is definitely NOT advice to anyone else, but I figured that chemo = 6 months of feeling pretty bad so to put myself through it 'just in case' was not something I was not prepared to do. I did worry a lot initially as almost every other TNBC lady I have come across had chemo and I was frightened I was being stupid refusing, but all the health care professionals I have spoken to agreed with my decision - drastic treatment for so little gain is a risk in itself.
Good luck to you all x keep strong
I hope you get an appointment this week and get a better idea about the best treatment for you.
Hope you're enjoying the remainder of the Bank Holiday. The sun's shining here, so what a treat!
Like you, I really hoped I would not have to go down the chemo route, but once all my results were known I actually felt it was the way to go because of the information I was given. Hope you get an appointment this week. I'm off for a week in Greece tomorrow and hope that a change of scene and good weather will prepare me for what's coming up. Take care, keep me posted.
Just to throw another fellow sufferer into the mix here, I'm a few months from turning 57, had my results on the 16th May. Turns out IDC tumour is triple negative, they also found DCIS (not so bothered about that but its a mystery as to why nothing showed on ultrasound). The IDC tumour was grade 3. I was simply told the plan for my treatment was chemo. Saw oncologist last Wednesday, and start my treatment on 11 June. Following chemo will need more surgery and then radio to follow that. Kalo, I think you need to discuss this further for your own peace of mind.
Take care, thinking of you
Hi Kalo and Lulu,
I was diagnosed Nov 13 with triple neg, idc grade 2 with no nodes involved, I am 51 and I was not given an option re chemo. I was told because it was triple neg then I would need chemo !!!!!.
sorry to interupt your thread but it seems confusing now.
Lulu I have been reading a lot of your posts and find your knowledge and most importantly your strength amazing, hope you are doing well with your current treatment.