Hi,
It’s not even a month since I first went to Salford Royal to get a lump checked out. I’ve had loads of cysts over the past 10 years so just thought this latest lump was another one but it wasn’t. I had a mammogram and ultrasound on the first appt followed by a biopsy the next day, with the results 3 days later. I’ve since had a WLE and the sentinel lymph nodes checked (negative). My surgeon has been amazing and the scar won’t even be visible once it’s healed. BUT last friday he told me the tumour was triple negative and I’ll probably need chemo as well as radio. This has left me more shocked than being told I had cancer! Chemo has always been my worst nightmare. Am I over reacting?
Is there anyone out there with TN results who is either just starting out like me or who has already been down this route?
Thanks
C
Hello chicita
Welcome to the forums, I’m sure other users will be along to support you soon.
In the meantime you may find it useful to contact our free helpline on 0808 800 6000, opening hours are Monday to Friday 9.00 – 5.00 and Saturday 10.00 – 2.00.
Best wishes
June, moderator
Hello Chicita
I was diagnosed with triple negative breast cancer in January of this year. I had chemo & radiotherapy and finished active treatment in September. Chemo, whilst not a walk in the park, is doable. I was even able to work through most of it. The important thing is to ensure that your team know of any side effects you experience and they can manage those. You are automatically given anti sickness meds and it is really important that you take them whether you feel sick or not. I would advise you to join a thread for ‘Starting Chemo in (what ever month you will start)’ I was in the March thread and this was a great support during treatment.
Please feel free to ask me about any other concerns.
Carabel xx
Hi Carabel
Thanks for replying.
My husband and I were just so happy when the consultant told us they’d managed to get the tumour out and the nodes were clear that we didn’t really take in the rest of the things he told us. I’m seeing my breast specialist nurse again on Friday and hope she’s got the time to go through everything again. I’m struggling finding any sensible information about TN on the internet. The only sites I could find were American and so scary I had to stop reading 
I’ll take your advice and join the starting chemo group, it’ll be good to have other people to talk to. I think that’s what’s making this so difficult for me, not having anyone to talk to. I’m fed up having to be brave and strong for the rest of the family when all I want to do is hide and cry. My husband’s been really good but is smothering me with kindness and mollycoddling me all the time. My mother can’t bring herself to say the word cancer and now thinks that just because the tumour has gone I’m fully cured.
Sorry to be a moaner, but just writing this down has helped.
C
Hi I’m another tn person, just finished all my treatment last Friday. Found my lump in nov didn’t get it checked out until march as I too though it was a cyst, dx on 21st march, straight in for chemo, finished chemo in August, boob off on the 14th August and just finished 3 weeks of rads. To be honest none of the treatment has been as horrific as I had imaginked it to be. The staff are fantastic and as carabel said they have all sorts of things they can give for any side effects you suffer, but you must tell them. I drank lots of water thought as apparently that helps. I also ate little and often and just rest when you need to. I think because there is no follow up treatment for tn they throw everything they can at it. It is apparently very responsive to chemo, and it is doable and helps by imagining the chemo as PAC-man munching up any stray cells floating about. Don’t look on the Internet for tn stuff as most of its out of date and uses awful words like, deadliest etc…as my breast care nurse said to me there are pluses to being negative, we don’t have 5 years of side effects to endure. Also I believe if you get to the 8 year mark you have a very good chance of it never coming back…
also the rads were no where near a bad as I thought, just keep drinking water and slapping on aqueous cream and doing the arm exercises.
good luck with it all and don’t forgot, telll the professionals about things and ask lots of questions…
x
Hi Chicita,
I am TN too. If you have been lurking in the triple negative section you may have read my posts about my TN not responding to chemo. I want to let you know that I am very unusual; I have activily been seeking someone in my position and I cannot find anyone. I have found out that TN usually responds well to chemo and the normal method of treating it is to throw chemo at it. They want to give you chemo because it is very likely to work. If you had some receptors for hormones etc they might treat you differently but you don’t and there is nothing anyone can do about that. It is not fun and it is not pleasant but you can do it. I am going to do it all again next week and lots of people encouraged me and I finally listened. Your margins and nodes are clear - that is good news.
Your husband is terrified and wants his wife to be OK, explain how you feel gently and do not be afraid to cry all over him - it is his job. As for your Mum she is probably terrified too and probably prefers to bury her head in the sand than think about it. Try to explain gently to her too. However, you are the one with cancer, so don’t drive yourself crazy trying to look after everyone else and protecting their feelings. My mum does her best but I don’t always answer the phone when she rings if I don’t feel like it. If you can’t be a bit selfish when you have cancer then I do not know when you can be.
As CK says a lot of the stuff you can scare yourself witless with on the internet is out of date. Everything moves very fast and TN is quite cutting edge. You are quite trendy to have such a diagnosis really. You might want to ask your Onc if there are any trials. Only if you feel up to it - and you do not have to join any trials unless you want to. Stuff the greater good - do it if you think it has an advantage for you.
Good luck, xxx
Hi Chicita,
Just come across your post, and I sound in a similar position to you. Everything seems to have happened really quickly - I discovered a lump after a random check, and four weeks ago yesterday I went to the doctor with it. I am now sat here, following surgery last Tuesday for a WLE and node clearance, as another lump was discovered in one of my lymphs.
When I went saw the consultant for the results of my biopsy, he did say that I would certainly be receiving radiotherapy. I’d done my research as have had a few friends undergo BC treatment, and asked if it was a hormonal receptive cancer or triple negative. It is a triple negative, Grade 3 Invasive Ductal, tho small, and as mentioned, in one of my lymphs. I’m due back on the 19th for my full path results following surgery, and to find out exactly what treatment is ahead. But like you, everything I’ve read has said that chemo is the way forward for a triple negative, and it was alluded to this that due to the fact it is in a lymph, and because of my ‘young’ age of 41, it may be a probability.
Like you, I’m dreading it. I have in my head, I’m young, it’s treatable, it’s been caught early. Not giving in is not an option, but to be honest, the upcoming months of treatment is the think that I’m (scuse my language), effing scared about!!
Hope your meet with the nurse today goes well. Stay in touch, much love and big hugs… (((())))
Kitzie (Jules) x
Hi Kitzie,
Yes the hospital yesterday went well. The BCN and consultant were great and went over everything again as nothing had sunk in the first time. You know what it’s like, your brain just doesn’t seem to register anything 
My tumour was only small 10mm and grade 2, so not as bad as I’d thought and the nodes were totally clear. I’m still going to need chemo though, just to be on the safe side, but I’ve got my head round that fact now and I’m not so scared any more. I also got chatting to a woman in the waiting room who was DX 2 years ago and is now having reconstruction. She told me her experiences of treatment and lots of little things that the staff wouldn’t necessarily tell me about (local support groups etc.) and we had a good laugh which made me feel better. In the afternoon I went and had my long hair cut. I’ve had a totally new style which I absolutely love, wish I’d done it ages ago, and that too has made me feel better. By the time I have chemo friends and family will have got used to the new shorter haired me so the transission to wiggy me shouldn’t be too difficult for them 
.
Where in the UK are you? I live in Macclesfield but am having treatment in Salford.
best wishes
Chicita (Yvonne)
Hi I’m triple neg too. my lump was 1.6 cm grade 3 and like you clear margin and s n clear. I wasn’t told I was t n just that I would be having chemo plus radiotherapy because hormone treatment would not be of any benefit because id tested neg. I found out by accident on here and like you freaked to say the least. I see my oncologist 17th and probably will start chemotherapy January .so we will be meeting on the “starting chemo Jan” thread. I’m really afraid of what lies ahead but with the help of the ladies on here , I know I’ 'll get there. Good luck and God bless. x
Chicita
I am newly diagnosed with TNBC too and recovering from lumpectomy.I had a 12mm grade 3 tumour with clear nodes and margins.Very shocked at TN dx and facing chemo after Xmas.I see the oncologist on Monday. I am 64 so a bit old to get this type. There is cancer on both sides of the family but not this kind. It is very much a case of keeping calm and carrying on !,
but that is easier said than done. I am upset because my first grandchild is due next spring and my daughter has to cope with my dx now.
Anyway, have as good a Christmas as possible.
best wishes
jf64
Hi jf64
I’ve read that is unusual for ladies in their 60s to be diagnosed with tnbc but my own mum was diagnosed with this three years ago when she was 68. She underwent chemo and radiotherapy and is currently well and NED. As you may know already, the chances of recurrence with TNBC reduce as time goes on with recurrence after 5 years very unusual.
Good luck to you all with your treatment.
xx
Hi Chicita (Yvonne)!!
Gosh we do sound very similar!! I too have long hair, and your comment about having it cut short, made me smile. I was having a joke with my sister this morning on the phone, as following my surgery on Tuesday, today I was mustering up the energy to go and wash it. It takes about an hour and a half, and I had said that if I do need chemo, I’d have it cut first then when it started to fall out it wouldn’t be so traumatic.
I know it’s a really vain thing to say, in light of the bigger things that are going on, but my hair is something I’ve always been renowned for, and is a big part of me and my personality. I’ve never considered having it cut, and have often joked about it to my husband and kids (10 and 7) and they’ve always looked at me in horror! in the great scheme of things though, and all the things we’ve had to process and come to terms with in such a short space of time, I’m gradually coming to terms with it, so well done you! I admire you, and I shall be doing the same! What style did you go for?
I’m originally from Nottingham but we moved to Scotland 6 years ago. It’s hard because my parents and sisters are still in the midlands’ and they seem so far away, but everyone’s texting or phoning our sending me Facebook messages everyday. In fact I seem to have been in contact with them all during these past four weeks than I have in the past six years!!
Great to have found you on here Yvonne, be great to keep in touch… Much love, Jules x
Hi Jules,
My hair’s been very long & straight for the past 10 years and I had absolutely no idea what style to go for, so husband & I sat down one evening and looked at websites selling wigs. We narrowed it down to 4 very similar styles that we both liked and I took photos of them on the camera to take to the hairdressers. He then gave me a style which was basically a mix of the 4 styles and I LOVE it 
. The first time I washed it myself I got a real shock! My long straight hair is now quite wavy now that the weight has gone from it. Most days I’m going to wear it curly and then when I’ve got time I’ll straighten it, that way people will get used to me with 2 different styles and I can get 2 wigs to keep them guessing later on
best wishes Yvonne
I found my breat lump in September, went to my GP October , had a mastectomy November. I had a 4-5cm Grade 3 tumour, triple negative. my lymph nodes are clear and I have now to undergo E-CMF chemo.
My only support is my son who lives 200 miles away. He IS very supportive, as is his wife but they are expecting my first grandchild in April. I do want to burden them with having to cope with my post-chemo care.
I am worried about the chemo, it’s side effects and how I may react to it all physically.
Does anyone know of any organization that would provide over-night nursing support for me . I have some savings that could pay for it
also has anyone got any tips as to how to cope with chemo
Hi i have got tnbc recurrance and a small lung nodule that is being treated as mets after nearly 5 years and will be seeing oncologist on 17th Dec for treatment plan, looking at chemo and mastectomy, primary was in 2008 and had chemo wle and rads. Not looking forward to losing my hair again, especially at this cold time of year you really feel cold around the head.
I am 46 with children 11 and 16. Cheo is not pleasant but doable just listen to your body , eat well and rest good luck to all
Sarah 66 x
Hello there
I’m TN and have had WLE, axillary clearance followed by mx, chemo and rads. If you search the website you should find some useful threads about how to get through chemo and rads.
Pat - hopefully you won’t need overnight nursing support to get you through chemo. It would be useful to have someone with you when you have your first one, certainly, just to see how it affects you. I happily waved my friend off after my first chemo (I had FEC-T) but within a couple of hours I began vomiting and had to call another friend to take me for an injection to stop it. However, don’t panic, from what I’ve seen on the Forum most people don’t seem to suffer with vomiting as they will give you plenty of drugs to stop nausea and sickness. I think I was just a bit unlucky as it wasn’t till the third cycle that they got the anti-sickness sorted out for me. The district nurses came out to me during the night when needed. Despite the vomiting episodes I managed to look after myself throughout but also had good friends/colleagues who came round regularly with home-cooked food, fruit etc. I tried to keep my parents away as much as possible as I didn’t want to cause them additional stress, though they did come to stay overnight for the first night for my 2nd, 3rd and fourth cycles, just in case. I also managed to go into work after about the first 10 days each time and generally had a ‘good’ week or two out of every three, apart from my 3rd and 4th. I did give up on work when they were all coming down with colds as it wasn’t worth the risk of catching anything. You may also be given Neulasta injections which boost your blood cell count. They helped to make me feel much better.
I would say try to get small amounts of exercise. I went for a 10 minute walk morning, lunchtime and teatime and that really helped, otherwise the fatigue can really take hold. However, don’t force yourself if your body is really telling you not to.
Your chemo nurses should provide you with guidance about what to do, and not to do. I know it’s all very daunting but you’ll get lots of help here and the ladies on the BCC helpline are amazing if you’re stressed or not sure what to do and don’t want to bother the chemo nurses. Maybe you could see if there’s anyone/support group in your area. I had the benefit of a friend who’d had it before me and she was a tremendous support. It helps to be able to talk to people who really understand how you feel.
As others have said, chemo is doable. It will seem endless, particularly as I found I could only get a couple of hours sleep a day, despite being very tired. But it will be over before you know it.
Best of luck.
X