Morning everyone ..hope your all doing well ...I was for a bit but now my head is in turmoil again ...I bumped into someone know from my daughters nursery ..she is younger than me but has had breast cancer diagnosed ..she has been told she is TNBC ...has a lumpectomy, fec x 2 and tac x 4 ..she has had a tough time as she lives on her own, no support, no help, I feel the hospital have ripped her off for her wig ..she had a voucher £100 and paid an extra £96 pound for a wig ..which to be frank is awful and she wasn't even told how to put it on ...it flew off whilst she was out and is scarred to go out ...that's now sorted and she feels happier and ive put her onto a wig website you can get a decent wig for £26 ...and we are going out for the day this Tuesday.
my fear is and what is haunting me is ...that I was HER2 - AND ER - but wasn't told I TNBC ..I asked my breast cancer nurse but she said no I wasn't ...is this possible? ...I think really it doesn't matter now as I have had it removed it hast spread ..ive had chemo and having radiotherapy ...I'm just scarred to be happy ... can anyone out there help me? this is whats going to ruin any chance I have of moving forward ..thankyou xxxx
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jackearls1000
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Hi Jackearls1000. As someone who is TNBC, I understand the feelings of uncertainty and worrying if each ache, pain and headache is its return. If your doctors have ruled out tnbc try putting that to the back of your mind. Try distracting your mind with interests and hobbies. Meditation is also exttemely useful. If you cant do this, The stress will make you ill. If you are unable to get your mind off it ask your team for the exact diagnosis. If not Her2 or ER then exactly what type of bc did you have? Etc. Having that information will give you a 'name' to put on your cancer but it may also cause you more anxiety. The local cancer support groups have trained councillors who can help you develope strategies to, in efffect, move past this. Keep focussing on the fact that you are through the other side and improving daily. We are on a road that will always be a little tougher to travel due to the nature of the illness we have and are battling. It did not just damage us physically but emotionally and mentally too. It has and will probably effect us for tbe rest of our lives if we allow it to. So head up and march on sbowing cancer the big 'two fingered salute' focus on the here and now not what might or possibly could have been. Hugs always.Lainey66 xxxx
Yea thanks Lainey ...I guess if I was ...they would have told me ..the breast cancer nurse whom was there from the very beginning ...she said I wasn't ...its just a niggle...I didn't stress about it till I met the lady from the nursery ..thanks again ...my head is a danger to me , I just wonder if its possible to be her2 - and er - ..and not TN ....if you get what I mean xxx
Hi Jackearls, Triple Negative Breast Cancer (TNBC) is a description that is sometimes used when the lump they removed is negative or at least not very sensitive to the 3 main receptors that they test for ER, PR, & H2. So it is a description of what it isn't not a description of what it is. So it isn't really a very helpful or sensible description just something the medical profession have fallen into using as a piece of shorthand for what it isn't. Things are changing all the time in this business and it may be that in years to come they will be able to put a definitive description to all the lumps. But for now they can't. You've had what they believe is the very best treatment, some very powerful chemotherapy ( well done for getting through it) They won't be giving you tablets like tomoxifen because they believe that the side effects that lots of people get won't provide any measurable benefit for you. So look on not taking then as a big positive. We all want to be able to put a definitive label on things because we think that we will somehow then be able to know we've had the perfect cure. As I've discovered over the years with several auto immune conditions as well as breast cancer, it's not like a broken leg where we xray it, know exactly what's wrong put it in plaster for a few weeks give a bit of physio and then it's as good as new. They don't always have that knowledge, they treat us with the best they know at the time. What we have to do is accept that there will always be unanswered questions, keep a watchful eye on our health whilst trying to focus more on the "living" not medical bits of our life. Lanney seems to be showing us a great example of this, (I'm very jealous of her forthcoming trip ). It takes time and seems almost impossible straight out of treatment where we don't necessarily feel the elation we think we should but more like we have lost the safety blanket of focusing on just getting through the treatment and the support of the medical staff. One step in front of the other don't expect too much of yourself. Gradually though we find cancer occupying less of our brain space. Be kind to yourself you've been through a lot, get some fresh air, I found exercise good, great for releasing positive hormones,treat yourself, help others where u can and you'll get there. Big Hugs Mary X
Thankyou ...that's does make perfect sense ..I'm usually very level headed ..but have found myself spiralling out of control with my mind ...ive been walking today ...3 hours ...and yes it is early days only 2 weeks since last chemo xxx
Hi Jackearls, whatever our diagnosis the medics do our treatment plan personally tailored for us based on oodles of evidence and experience. The thoughts in your head are a normal once whatever intensive treatment we have ends. My mind moved from the focus on treatment to 'what now' and mine then found the 'what if'. I found the next steps courses run by Breast Cancer Care - Moving Forward, and Penny Brohn - Living Well, very helpful - making new friends who understand my position and openly discussing with experts some of our worries. I also made the most of complementary therapies - tried quite a number to find which one eased my anxieties best - I found Reiki and mindfulness really helpful. As others mention, exercise (I do pilates) and for me being out in the sunshine and nature are very healing too and make me much more positive. Returning to those feel good activities help me enormously - I enjoy singing so went back to a choir after 20 years away. You rightly pick up that handling our heads/thoughts is very important, it can be done and life is good xx
You have come a long way - well done on getting through the chemo. I think its brilliant that you are now able to help your friend. Fantastic that you are able to help someone else who needs love and support at this difficult time.
Macmillan may be able to provide some extra help for your friend too - they have a buddy scheme which can provide practical and/or emotional support for a couple of months. Hopefully she has accessed some of the support available through charities such as Penny Brohn. Good luck to you both. XXX
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Lump over 50
My Mother’s BC
DO I have chemo or not with my diagnosis
Stage 1a triple negative breast cancer
Thought this little poem I wrote may help some one 
