Your tumour was similar size to mine 31mm and cancer in 4 nodes. My surgeon said if you get a complete response with chemo this puts you in a similar stats position as those who do not have TNBC. Another said to me were looking at cure at this point so please ask your surgeon or the oncology is again to clarify. I think it's on stage 4 that is treatable. Reoccurrence in the first 18 months is higher then we slid onto the other scale with the HER and positive BC cases. It's all a bit tricky as stats are old and can't tell us everything.
Post chemo I had lump removal and full node clearance and although it's not a walk in the park you can do it. You should try to keep on the exercises and if you get cording or heavy feeling in arm or what is left of the breast seek your BC nurse help. After this 20 rads.
There are some long term Survivours out there.
Hi Suzanne I've finished my treatment now so I have the same fears. I'm trying hard to keep it away by taking inspiration from ladies like Bel I've asked her for a few pointers and will focus on the good advice. I juice fruit and veg every day now before I do anything else and make the best food choices I can. That doesn't mean I deprive myself of all the foods I love I just put a limit on them. I think I'm taking all the right supplements so doing the best I can for me. When I do get the scary thoughts I don't dwell on them I push them aside quickly and focus on how well I'm feeling now and see that as a positive. You know you will get support here on the forum. Xxx
For those of you now confused, I am both Macgirl and ChrisAsh. I got a bit confused when I was first setting up my membership. Will probably ditch the Macgirl one
thank you so much for replying I felt a real lift when I saw that people had responded because it did make me feel a bit like I wasn't quite so alone in the middle of this nightmare. I am hoping that once I had a treatment plan I will feel more positive but just heard today that my initial consultation isn't for another week! I'm sure you all know that every minute seems like a lifetime when you are waiting on something so important as this. I found myself pleading with the booking clerk to try to bring the appointment forward which was very unfair of me and probably will make no difference anyway. Just so worried and struggling to eat anything but conscious that I really do need to be a decent weight before the chemo starts as I'm sure that will knock my appetite too.
thank you for your practical tips too. Sue I really liked your analogy to the life raft and I am going to try and visualise that. Colista please could you send me the fb page as I may look at that too. Tar can - you are right I am going to try to focus on one positive thing each day (this is today's). Ann (so scared) hope your op goes ok on Friday. I'm a nurse by background and that bit feels less scary for me but I completely understand your worries and I'm sure you will be in safe hands.
i live in South Manchester and so having my treatment at the Christie - is anyone else from this area at all?
everyone - you are an amazing bunch of women - thank you so so much for taking the time for me
lots of love and hugs
Why is it you get fantastic news then follows not so good news! Been to see surgeon today and go in for op on 17th August! Feeling cack as surgeon confirmed tumour was bigger then first thought it was 3.8cm not 2.8cm! He also said because I'm triple negative the prognosis is not good re reoccurrence but he will
Know more after surgery! He also said its treatable but did not say curable so I'm very worried now! It will also depend if I carry the brac gene and if so I will have double mastectomy hysterectomy and removal of all my ovaries later down the line! When he operates on 17th he's taking all my lymph nodes and I will be left with a big dent and scar under my arm so again later on I will have reconstruction if I don't have brac gene! I know he has to give me worst case scenario but difficult to hear none the less! OH or
Mom not taken it well! He did say my response to chemo was amazing though! X feeling deflated 😓
You are feeling exactly how I feel, so at the moment I can't advise how to move on. Reading other posts like you have, it does get better when treatment starts. I had my pre op today, even that scared me, my op is Friday.
I am having my op first, then chemo and rads.
I hope one day we can both come to terms with this and not feel like we do now.
We have all different ways with coping. But at the early stages of diagnosis it hit all of us like a freight train, too.
It is a most horrible place to be in - and it often seems that no one around you can really understand, help and support you in the way you need right now.
This forum is a great place to vent your feelings - venting them will help - but it does take time to get to terms something like this. It will get better, but it may take time. Firstly coming to terms with the diagnosis, which may make one feel so powerless and helpful - everything you knew, were used to. had planned - all up in a puff of smoke and no way of stopping it. When your treatment plan is in place you may start to regain control and you may feel more positive again that the future you had looked forward to - is still there - just slightly delayed.
If you get reallly distressed it might be an idea to call the helpline on this forum. They certainly have been of great support when I needed them.
The only way I can describe my journey so far - is being thrown into deep water, not reallly being able to swim. Totally helpless drifting, but wanting to survive. Every piece of the long diagnostic process was like a little plank I found to hold onto - and to build my raft. Some planks were a bit rotten, but still they were planks. When I finally had my pathology results and the final CT scans were done - I had enough planks to climb up onto my precarious raft - and to start paddling like mad to safer shores. I am still paddling - but the shore is in sight!
sorry you find yourself here but you are in good company. In answer to some of your questions, I don't think you ever truly come to accept the crappy disease but you do get your head round most things and once you have a treatment plan and it starts you start to get in routine and feel better.
the chemo is doable and with TN it responds really well with cancer.
but you will have side effects so make sure u talk to your oncologist and go in with a list.
Questions to ask 1.what chemo us it - most is FEC-T. They can give you Emend for sickness, you will also have injections to boost your platelets following chemo. Plus you will also be given steroids. Lots to take in so start writing everything down. Use your dedicated breast nurse to ask any questions or concerns you have.
drink plenty of water prior during and after chemo to help flush your system.
Keep positive by thinking each day what is the positive I.e even simple things like it's sunny and i managed to peg out the washing - it's amazing how it feels
your emotions will be up and down but never stop talking. Use this group as much as possible and there are also other groups out there on FB if you are on there!
Also there are local charities that can help with practical help. Never feel you are on your own, we can all help xxx Colista xxxx
ive just been diagnosed too and have been reading through your posts to try to help me feel better - as someone has already said, I'm so glad I found you
i got my diagnosis on Friday and feel like I've been hit by a train , it was such a shock. I feel like I can't function but not able to cry. Just waves of fear keep sweeping over me and I feel sick. I don't know how any of you manage to cope with this , let alone stay positive ( as people keep telling me) as I feel like I want to crawl into a corner and never get out again. I've been told that I'm having chemo first followed by surgery - not sure why as the 1 node biopsied was clear but still waiting for that appointment to come through and it feels like forever.
Can anyone please tell me how you came to terms with this awful diagnosis and then turned it around in your head into something which you could manage. Did this feel better once your treatment got started ? I've tried practising mindfulness and positive thoughts but they just won't come
Hi, I had a mastectomy first and then chemo - 3 x EC followed by 9 Taxol, finshed 3 weeks ago. I was stage 2 and my lympph node biospy was clear so I had surgery first and then chemo. Following surgery my sentinel nodes were also negative. I understood that I needed the chemo afterwards to 'mop up' any potential microscopic stray cancer cells that 'might' be around as being TNC hormone therapies won't work. Just going through the process of reconstruction etc. I've only recently discovered this website but it is amazing! 🙂
Thank you Anne and Taran, for your posts. I am trying to take everything on board from all the hopeful posts from everyone.
I know I am not the only one going through this, and sadly won't be the last, but I am gainng inspiration from ladies on this site. xx
Hi Anne the way your feeling is very normal. I remember crying a lot in during the 1st week and couldn't sleep as it fills up your head space all of the time. It's like a grieving process in the beginning that's the only way to describe the emotions. Once you've had your op and you know the tumour is gone you'll feel different. I had mastectomy and the op isn't half as bad as you think. I came home Saturday lunchtime and cooked a Sunday roast the next day. The chemo is very doable just take advice and tips from the forum we'll all get you through it. The hair loss freaked me out big time as its our identity. There are some lovely wigs out there I've collected 3 over the months and I am used to them. When we go out it only takes me an hour to shower put some slap on get jazzed up and away we go. Anne just try your best to feel as normal as you did before because I assure you there is light at the end of all this. I feel a better stronger person now and moving forward and you are all coming with me ok! Anne xxx
I am so glad I decided to join this group, or should I say I would rather not have had to join if it wasn't for BC, none of us would. Everyone is so supportive and I hope soon I will be able to support a new comer as you are supporting me.
Warcol it is good to hear you are cancer free, I am op first then chemo, not sure why.
Thanks Bel for the turmeric link, I will look into getting those after chemo. I am a great believer in the turmeric so intend to continue later.
I hope everyone will keep posting and let us know how you are all getting on, I have been reading some of the chemo threads, trying to get a few tips.
Take care everyone
Soscared - Anne xx
Hi Marina, Anne & everyone,
Marina, I don't substitute juicing for a meal. I tend to have a juice first thing - I think it's best absorbed by the body on an empty stomach - then breakfast a bit after that. I play around with my juices, but I do more veggies than fruit (fruit-wise I usually put an apple in and either a half or whole lemon). I often do a green one, with cucumber, celery, spinach and or rocket (you can also do kale, as long as no thyroid issues as that's not good if underactive thyroid). I'll often put ginger in, sometimes fresh turmeric too (lots of supermarkets have it these days), sometimes fresh herbs like mint, or parsley or coriander. I also sometimes put in carrots and beets, though as they are pretty high in sugar I don't have them every day. I'd say play around and see what feels right to you. And if they are too sour at first, maybe add a bit more fruit, but slowly wean yourself down - it's amazing how your body adapts.
Anne, there are lots of options out there for the black pepper & turmeric. Eg https://www.amazon.co.uk/Organic-Turmeric-BioPerine-Capsules-TAKA/dp/B01ASEKD4U. I guess check if you should take them while on chemo. I didn't cos I only discovered them years later, and I lived to tell the tale!
Everyone, it's totally normal to feel very sad and worried. You've had a big shock and a huge life change. So don't beat yourself up about feeling like that. I had so many people say to me 'You must be positive,' which was really annoying as you don't feel that postive when you've just been diagnosed! That said, while I think it's important to let yourself be sad/anxious/angry whatever, I also think it's important to believe there is a way through this and not get sunk into a tunnel of despair. Even though you will have moments of great despair. If that makes sense.
And Marina, I agree with Anne, that it's best not to make major decisions while in the heat of this. I hope you figure out the best path for yourself. I think it's quite common that men don't know how to deal with it when their partner gets sick, and just close down. Us women are so much better at expressing ourselves & engaging in conversation I think!
The other Anne here, you ladies sound like you are really doing well although Maria like Anne says don't make any rash decisions now.
I hadn't thought as far ahead as needing to change my diet, it will be quite a big change for me, but if thats what it takes, then so be it. I don't have a really unhealthy diet, but it could be better and I am overweight.
Interesting reading about turmeric, I started taking it a few months back to help with hip arthritis, I really felt it helped me. I stopped taking it a couple of weeks ago knowing I need an op and chemo.
I hope in time I will feel more positive and be able to move forward like you all are. At the moment I am still feeling so upset, big knot in my stomach, don't want to eat, don't want to move from the sofa, I want to pull my head off and throw it away to stop my mind going into overdrive.
Did you all feel like this ladies in the beginning?
I am taking inspiration from you all, I know I have a fight ahead of me, trying to think positive, but I am finding it so hard just now. I don't mean to be down I can't help it.
Thank you ladies, take care all of you xx
Marina I don't want to sound like a agony aunt but think I know where you're coming from. Make the bigger decisions when you know your properly back on track. I often have the feeling I'd rather be on my own because I only want to feel responsible for myself and also I don't feel like the woman I was. It's all because for now I've got 1 boob and my shoulder length blonde hair has gone. I will make the bigger choices when I feel like im something like I was before. All this rubbish messes your head up.xxx
Oh forgot to ask Marina are you feeling ok as you seemed in that really bad place where we all start from at diagnosis.xxx
Hi Marina im having big doubts about work. I'm a community care worker for Derbyshire social services so am paid for a year 6mths full pay and at moment on half pay. I will have been off for a year in September. The radiotherapy consultant said I shouldn't consider going back until at least mid September due to the nature of my work as I've had node clearance. I feel I need to do something so I will try when the time comes. I spoke to my boss the other day and the phase back to work sounds quite good for me. I suppose it all depends who you work for.xxx
Just one more question Bel where do you buy the turmeric with black pepper as Ive bought it from Holland and barret as just turmeric. I used to take it at the beginning of my b/c journey but stopped supplements when I started chemo as was told some supplements affect chemo. I found out later that turmeric is effective with black so keen to add this to my list. Thank you for your help Bel.xxx
I think the important thing with the chickens & eggs is they are not fed on antibiotics & hormone nasties. I guess free range varies from supplier to supplier. I get packaged wild salmon off ocado as I'm in London and they do online deliveries to my area. I guess check the packaged stuff and fish counter at the supermarket as some branches will do org/wild. I take my turmeric (mixed with the black pepper) in tablet form as it's much stronger that way. Turmeric is supposed to be a bit of a miracle supplement, especially for cancer. I think bread is fine, as long as it's wholemeal & you're ok with gluten.
Sounds like you're doing really well Anne! xxx
That's great Bel thanks. I have been on the right track but now my treatment is over I know I have to try even harder. It's not easy where I live to get everything organic especially meats and fish but having said that maybe I haven't tried hard enough so I will now. I buy free range chickens and eggs but not sure if that's good enough. Would I get wild salmon from morrisons fresh fish counter?. I have tesco sainsburys aldi morrisons and asda all within 5 to 10 minutes away and still can't shop to my full satisfaction. To be honest Bel im not much into fish but I do force myself to eat salmon. It's as you say you have to get used to different tastes. At the moment I take as supplements vitamin D3 omega 3 fish oil MSM and a soluble vitamin C all 1 a day.Is your turmeric and black pepper in tablet form Bel? I do have a glass or two of wine about twice a week but its not essential. I don't ever buy cakes as I love baking so yesterday I made a lemon cheesecake for Trev and healthy lemon cottage cheese muffins for me. The muffins aren't even sweet more of a salty savoury taste. My big weakness is bread but never sliced white only sprouted grain hovis granary and of course all the lovely bakery bread. Like I said Bel got probably half of it right but got to rethink the other half. Sorry for the long post. Xxx Anne.
Hi Marina & Anne,
I did make a few changes. That said, I know of other long term survivors and I'm sure some of them didn't make that many. My attitude was that the most important thing was to stay alive and stay healthy but I wasn't going to live in a way that made me miserable either. So I've struck a middle ground. Luckily I actually enjoy healthy food (and I think with all the great cookbooks out there these days & recipes online it's easier to do so). I was fairly strict the first couple of years, as these are key for TNBC, and still keep to a really good base of a diet, though let it go more often that I did back then. I'm actually considered cured of the original cancer, but have to be careful cos of my BRCA 1 gene.
I juice every day . I eat mostly organic (and all the meat & the occasional bits of dairy I have are organic). I eat fruit (berries are great) & tons of veg (especially the greens like kale & broccoli, also bright ones like butternut squash), wholegrains, pulses, nuts & seeds, lots of olive oil, have fish (mostly oily, like wild/org salmon or mackerel, avoid tuna/swordfish cos high in mercury) a few times a week. I don't do too much soya - the evidence is so mixed, hardly any dairy, limit the red meat. And I don't do too much sugar (tend to save it for special treats) & my daily (essential!) chocolate dose is dark. I don't drink much, just the odd glass of wine. I honestly find my diet delicious - it's often just a question of changing habits & getting used to new tastes.
I take the supplements my surgeon suggested: turmeric (make sure it has black pepper in it), vitamin D (levels are often low in BC patients), fish oil (make sure it's a good clean source). I think the first 2 are particularly important.
Marina, you asked about work. I had a pretty stressy job with very long hours before I got BC. So after it was over I went freelance (as it didn't feel quite right going back to that level of intensity), which I was able to do in my field.
Hope this helps & feel free to ask any more questions. Happy to help.
Thanks Bel your a star. I'd also be interested in changes you've made along the way as your obviously doing something right lol. Do you take any supplements we should know about? I've started juicing today which I see as 1st step in the right direction. Another Anne xxx
Thanks Bel, Just what I want to hear.
I am so glad that you are well and going strong so long after your BC. If I had one wish it would be that no one ever suffered with this terrible disease.
I will look into the book you mentioned, I have hope knowing there are people out there, like you fit and healthy years after.
So, thank you from me and others going through the same for some for taking the time to post and reassure us.
I don't post that often, but have seen some the posts recently, and understand only too well the fear that many of you are feeling. I just wanted to say that I am a 14 year survivor of TNBC and, since my diagnosis in 2002, have had no recurrences. I've not had any new cancers either, despite carrying (as I learnt relatively recently) a BRCA1 mutation. So it totally can be done and please don't lose faith. There is a book callled Surviving Triple Negative Breast Cancer, which I've not read, but sounds good and inspiring, which may be worth reading, especially if you feel like you're drowining in fear. Believe me, I felt all the fear, but I also gathered as many positive stories about BC survivors as I could, and I think this helped find a way through it. Since my diagnosis I have come across so many BC survivors (just through daily life). Including people with pretty bad diagnoses who are alive and well many years on.
Love to you all
Thank you LouPrince for posting. It gives people like me real hope for the future. I am recently diagnosed and am still reeling from the news. Just got my letter through the post to go for my op on Friday, trembling. . .
I know there are many out there who will also be glad to hear this too.
Many thanks and take care
I don't post very often but read all the threads daily.I am halfway through chemo for an ER positive breast cancer.I often read the threads for TNBC as my mum has a close family friend who was diagnosed with TNBC 7 years ago at the age of 52 and she had a mastectomy,chemo and rads and she has had no reoccurance!So it does happen.I have asked my mums friend to post,but she is a very private person and wants to move on with her life.I just wanted to add a bit of positivity to the threadxx
Hi Taran it would have been good to know our response to chemo. I like to think it worked well for me because recovery from 2 ops and all treatment has been really good with no problems. When treatment is done it's up to us to keep positive and make the changes that feel right. This forum is ace for support and good advice love all of you.xxx
Yes Marina you have to concentrate on what makes you happy everything else has to come second place at least for the near future. So glad we made you feel a little better and things do get to a stage where your in a better place. Pam I had mastectomy first then chemo as it was found to be in lymph nodes when they did op.I've been and fetched all my fruit and veg so will get to grips with nutribullet later today.xxx
Not sure AnnDaw. You could try your BC nurse. Thing is you needed to have chemo first I think. This does mean you won't have had a total response just when they looked at what they take out is post chemo.
Hi Pam are you feeling better now than you were a few weeks ago. Just to go back to this total response to chemo thing. As you know I had my tumour took away when I had mastectomy so how would I know my response to chemo. Would my breast nurse be able to tell me if I ask do you think Pam?. I bought a nutribullet today so im starting the juicing tomorrow. I've finished treatment now until I have my boob back so got to try to keep the C from coming back. Always something to worry about Pam.xxx
Aah Marina im so sorry to hear how sad you are feeling at a time when relationships should be stronger than ever. This is the worst time in all of our lives so you need support from somewhere. Have you talked these things through with your partner cos he really needs to be your rock or its more stress on top of stress for you. I've just finished my treatment for tnbc last week and my Trev has been great but sometimes going through treatment I used to feel like I wanted to be on my own to deal with stuff in my own way. I felt I just needed to look after myself and didn't want to feel responsible for anyone else if that makes sense. With regard to hair mine was salt and pepper as im mid 50s so I bought a nice n easy root touch up which was enough for about a inch regrowth. It made me feel a bit brighter but still wear wigs outdoors. Don't ever think your ugly cos you're not your just different for now it's a temporary blip. Marina im sending you a massive virtual hug with this post. Love Anne xxx