Hello all.
I was diagnosed on 25 june, and 9 days later had lumpectomy and full lymph clearance. Found out my tumour was triple negative, and all nodes were involved, which made me feel like I was being told it was terminal, which I haven’t been told, but I am just finding it all really hard to take in. I saw an oncologist yesterday, who said the point of my treatment to come (chemo and radio) is to try and make sure it doesn’t come back, but then she started talking about if it does, and I just didn’t want to hear it and just broke down. Noone can ever tell you that you are back to how you were before, I have learned that now, but I just think its so awful to have to adjust to how big that really is. I know there are women who are through the other side with full node involvement and / or triple neg, but I don’t know who they are or where they are so feel so alone. I’m so sorry to sound so depressive, I;ve been reading some of the posts and think every one of you out there is absolutely amazing, I think I am just on a downer whilst it all sinks in, but I feel absolutely sure I can get through this. I just want to stay alive for my kids and husband. Ive been told its normal to go all negative after the first oncologist appointment because they are so matter of fact and statistics make us feel scared, but it is there job to be open and of course they are another team of the brilliant people who are trying to help me get over this. Sorry to go on, I feel like I have a million and one things to say! Any messages of support will be so welcome isnt this just a brilliant thing to have to use? Thanks
Hi Sarah just wanted to send my love and say sorry your having such a rough time. Sorry I can’t offer any wise words but there are so many on here who can and will.
Best wishes and hugs
Caz x
Hi Sarah - my way of dealing with the initail diagnosis was to try and break things down into bitesize chunks - get to grips with everything a step at a time. There is a future the other side - i was dx in April had WLE twice then had mast now on Chemo to be followed by Rads etc. I dint have lymph node involvement
Its like a black hole to start with as you’re bombarded with info and stats.
But the forum here is great - itsa link to other and a place to share rant let off steam and have a laugh. It makes me feel less alone.
Take care many hugs
Leesha
Hi Sarah - really sorry you had to join this club. We are a great support to each other, and I hope you can get the best use out of this site. Leesha is right, take it all in bitesize chunks oherwise you’ll be overwhelmed. Do not look at threads too far in advance - you’ll just scare yourself. Deal with it bit by bit and you WILL get through it.
All the best - take care, stay sane!
Sue xx
Dear Sarah
I am so sorry that you are in such a dark place. You are so recently diagnosed and I think the first few weeks after diagnosis are so terribly hard.
My story may not be one you want to hear…but I hope that you might nevertheless take some hope from it…I am also triple negative and had most of my nodes involved (23/25) and yes I have now got a regional recurrence which isn’t curable. Like you when I was first diagnosed I sought and sought for cases similar to mine…of people with big node involevement and trip neg OK a few years later…and there are some out there…hard to find but there are…cause I’ve met a few in cyber space over the last 5 years.
Living with the impact of a poor prognosis is bl***y hard but live with it you will. You will have horrible bleak days but also experience soaring highs.
Its now neraly 5 years since my original diagnosis…never thought I’d get this far and I have.
very very best wishes with your treatment.
Jane
Poor Sarah - what a rotten time you are having. It may be a comfort to know that everyone here seems to agree that the diagnosis and just after are the worst times you may ever have to face. The shock, and the complete absence of equipment to deal with it - most of us have probably gone through life wanting to know as little about cancer as possible. But you will adjust even to this - humans are programmed that way - and gradually you will collect the ‘equipment’ and tools required to start making sense of what’s happening, and to give you at least a small feeling of having control over at least the small things. This can be an important source of comfort: informing yourself via your health carers, websites such as this one, careful (very careful) internet browsing - because, while there is a great deal out there that is enlightening and informative, there is also a lot of misinfo and downright scaremongering! Don’t look beyond your present stage - NEVER look beyond your present stage. Believe me, it can be paralysing and completely pointless.
Anyway, as I was saying, informing yourself can give a feeling of strength; you might decide to make changes in diet/exercise; you might make a decision to try and live in the moment - which we Westerners are not much good at doing - and squeeze every ounce of fun and pleasure out of everything you do; there will probably be logistics to take care of - so deal with those you feel like and leave the rest to the good spouse. I found myself letting go of a host of trivial stuff that had seemed very important and time consuming - I thought I was indispensable and it was getting me down and was SO relieved and amused to find I was not & now look back and wonder how I could have stood all that nonsense for so long. It’s been the ‘up’ side of breast cancer for me - but then, like many here, I’m mostly a ‘look-on-the-bright-sider’, which can be a bit nauseating, but is product of a badly warped sense of humour. Can’t help it.
You’ll find your way - we all do. I was diagnosed (dx) in Feb. with 5 nodes involved, her -, oestrogen + - and this site has been a source of support, fun, solace, interest, you name it, ever since. Things would have been grim indeed without it.
Keep in touch,
M-L xx
Sarah,
I am sorry you have joined us on this site but you have come to a good place for support from those who understand. I was dx in Feb 06 and had 3 out of 12 nodes involved so I understand about node involvement and the impact is has on you.
You are still in very early days and I’m sure you feel you will never be able to cope but as others have said…you will. You will because, corny though it sounds you have to. We as humans, can be very resiliant when we have to and I’m sure you will find strength inside you that you didn’t know you had.
If I was you, I would steer clear of any internet sites that talk of statistics because it does you no good at all. You are never going to find the information that you want to…as in what your future holds. No one can tell you that, not even the best oncologist on this earth because they don’t know. Statistics are generalisations and there are always exceptions to the rule.
Remember that goes both ways Sarah. You can read stories of people with no node involvement that sadly aren’t with us anymore and others like you that are still around many, many years later. There are no concrete rules to which of us survive or not so you have got to try not to dwell on what you think are the negatives in your diagnosis.
You will have the best treatment available and you have to take each day as it comes and try not to look too far ahead. You will cope better if you try and do that…come on here and talk to all of us too. We understand Sarah…we can’t change where you are at the moment but we certainly can support you.
Sheana xxxxxxxxxxx
Hi Sarah
So sorry that you have had to join us here. As the others have said take it a step at a time. It’s early days for you and you will still be trying to get your head round all the information that has been thrown at you …there is so much to digest all at once.
Fight it with all your might and beat the b*****d into the ground is my line of thought. You will get there in the end love.
I very much agree with Leesha’s comment on handling things in bite sized chunks. When I was diagnosed in Oct 2006, people kept saying to me “in 12 months time the worst of the treatment will be over and you’ll be fine”. If I had heard this once I had heard it a dozen times and it made me want to scream! I felt I could not look that far ahead and I resolved to just take things as they came.
I also did not find it very helpful when people sent me articles about BC (being Oct, the mags and papers were full of it, even my surgeon sympathised with me). I got pretty fed up of Kylie being all over the place as well. I’m sure she is a lovely lady, but I felt it was all becoming overkill and I felt a lot of stuff was being over dramatised. I needed to be able to keep a sense of perspective and a calm head. One of the first things I did was dump anyone from my life who was a bit “toxic”, by that I mean the hypochondriac types who ask how you are then launch into all their own very minor and petty ailments.
Unfortunately, my sister has been in complete denial over all this and things are very difficult on that front. She is currently here on a visit, has been over since Tuesday and I have not seen her yet - had a quick phonecall and she did not even ask if I was well so I am not making any great effort to hook up with her. You learn who your true friends are at a time like this, for me many were people I had not been in contact with for a long time.
Hi Sarah. I was dx end of may and 5 weeks later had to have a mastectomy with 4 nodes removed to be tested. I was told on Tuesday that they have got cancerous cells in and now need a 2nd op to remove these before chemo etc can start. I try to and have succeded so far barring 2 wobbly moments thought positively that they are doing the best fro me which has helped. I also like everyone says take 1 day/step at a time.
My thoughts are with you as having been recently diagnosed and it is a blow to say the least but you will come through this a stronger person. I have not thought of the long term prognosis as I need my strenghth to concentrate on the now (if that makes sense)
Take care and have a big hug from me. If you need to talk you can always get me on here.
Lots of love sharon xxxxx
You are all amazing and thanks so much for posting comments, every single one has helped. I actually feel a bit better today. Up and down or what?? But it has made all the difference knowing I am not on my own. x
Hi Sarah
I dont come on here often but just had a browse through and noticed your post and wanted to come on
to offer you a bit of hope and support.
Brief history…I was diagnosed July 06 triple negative full lymph involvement plus spread discovered
after mastectomy but before chemo to chestwall and clavicle nodes (nodes above collarbone), so a
very scary time indeed. As you can see i am now 2years post diagnosis and at present doing fine.
It is no doubt a truly awful time when you go for results and recieve statistics, and pathology results,
but you do somehow, find the strength to deal with it, and although the worry of recurrence is never far
from my mind, i have laughed and enjoyed lots of the passed 2 years.
Chemotherapy can be very effective against triple negative breast cancer, hang on to that thought.
I know of a couple of ladies who dont use this web site that have been diagnosed with triple negaitive
disease and node involvement who are many years down the line alive and kicking.
Very best wishes and i hope your treatment goes well.
Julie xx
Sarah,
I think in time you will start to be pleased that they have offered you all these treatments to help you to beat this. We tend to all moan about having things done but hey thank goodness they do have these to offer us. You might look at whether there is a trial suitable for you, as then you get to try the newest ideas or you may prefer or only be offered the standard treatment for your area. I think you are still getting over the shock of finding YOU have cancer, and coming to terms with this (we all know how you feel), but you sounded more positive on your last post. Get those boxing gloves on and get in the ring with us and start fighting. You will never be on your own now.
Sending you hugs
Lily x
Sarah,
I was diagnosed the same day as you (a day before my 38th birthday - what a birthday present!), so, in a way, I am at a similar point in the process of coping. However, I didn’t have any lymphnodes involved, so I can only imagine how it is like for you. But I have had similar scares and, for instance, it looks like there was some trouble near my chest muscles (I didn’t dare to go too deep into that with the Docs). Anyway, when I get depressed about all this I remind myself of my cousin’s daugther. She was diagnosed with sarcoma when she was 10. Doctors told her dad she had four days to live and that the chemo they had would not affect the cancer. But they gave her the chemo anyway. And it worked. She is now completely cured, 18 this year, against all odds. Thinking of this, I didn’t ask the oncologists about my survival statistics. “Never tell me the odds”, says captain Solo in Star Wars - I know I have been watching too much of kiddy stuff with my children lately, but I took this as a valuable peace of advice.
I also subscribe to the advice other fellow ladies have given here many times: one step at a time. It helps. Neither you nor me have been given a death sentence yet - something to hang onto, I think.
Everybody says ‘good luck’ to me, but, myself being from Lithuania, I find a Russian phrase ‘ni pukha, ni pira’ (‘neither fluff nor feathers’), to which you answer ‘k chertu’ (‘go to hell’ or literally ‘to devil’) more helpful and bringing more luck, when somebody does not forget to use it (although none of us knows what it really means). So ‘ni pukha ni pira’.