Thank you all for your lovely replies, I am beginning to realise that I think the doctor gave me worst case scenarios with his statistics, and I have now made my own plan, starting with his which is surgery ASAP. As ILC prefers breast tissue I am really wondering if I should have both removed at the same time to cut my risk further - what do you think? This is so hard to pick up apparently and my appearance went from nothing to enormous in no time at all.....I don´t think I want to live in fear of it appearing in the other breast.....
After surgery I am going to get at least two opinions from oncologists about ongoing treatment, if any. Radiotherapy, chemo and hormone were mentioned yesterday but I am not necessarily going to agree to all those, depends on how many nodes are affected.
I shake inside at the thought of the surgery and looking at myself afterwards but I am focusing on getting the cancer out as it is very large area - almost half the breast and very uncomfortable.
Mine was lobular cancer with 5 lymph nodes cancerous and as you can see from my previous post that was THIRTEEN years ago. IT IS TREATABLE. Treatment has come on so much since I had mine & survival rates are going up all the time. I know it's hard, I've been there remember but try & keep hold of the positive & take as much support as you can, it all helps.
Golly, your like like to keep you waiting don't they.
As you are overseas, they may use different means of describing ER and PR status - in the UK they usually use a score out of 8, so I can't be sure what the two and three stars mean, but I assume they mean your cancer would response to Tamxofien or Aromoatase Inhibitors (AI), either of which would sunstantially improve your stats I'm sure.
Did they say whether the stats were with or without adjuvant treamtent (chemo or Tamoxifen/AI)? Very often those of us with poorer initial prognosis get more benefit from chemo and/or other therapies.
There is a free online calculator called NHS predict http://www.predict.nhs.uk/predict.shtml into which you can put your data and see what benefit you would get from different treatment regimes. As far as I understand it, the tool assume surgery and, where appropriate radiotherapy.
Also, a few thoughts on the stats - firstly they are based on people treated some time ago - they have to be, otherwise how can they know how many people lived 5 or 10 years? It's obvious when someone tells you, but I didn't think of it straight away. Treatments keeps on improving, and what we are offered is almost certianly better than the people whose dtaa they use. Also, no matter what the stats say, someone is going to be in the 'good' part of the stats... why not you? Also that bus with your name on it could come tomorrow... I hope not but you know what I mean.
So sorry it wasn't better news. But please don't throw in the towel, there are lots of ladies who post on here many, many years after poor prognoses.
THANK YOU everyone for your support. Went to hospital today, kept waiting one hour.....
This is what they told me verbatim
Invasive lobular cancer
Infiltration and metastasis in axila
Aggressive as Ki-67 is 90% (this website shows high as anything over 20%)
Chances of survival for 5 years - 50-50
Oestrogen positive but also progesterone positive
I read up on it and it seems it is far more likely to appear in the other breast and other areas of the body than other breast cancers
Sascha... I'm so sorry you are finding it so hard but once again I agree with all the posts above...
I would like to add that it is important to try and see things in a positive way, I am triple negative which gave me less treatment options, which could be seen as a bad thing but I look at it as a positive... less treatment less side effects!
But you are allowed to have days when your world feels like it is about to end, we all do, just try to make those days fewer.
Myself I had a MX with ANC(1 involved)last march and followed with chemo. the inside of my upper arm and my side are still fairly numb, but I just love the tingle I feel when my husband touches my numb bits.
Good luck and heres to a more positive day for you x
I am sorry you find yourself amongst us, none of us would wish a bc dx on anyone.
I wad diagnosed in January this year and like you, went into a pit of despair. The whole gamut of 'why me', overwhelming self pity, anger, bargaining - telling myself if I do so and so.....
However, as many have said already, the treatment comes in stages, and we learn to deal with the next thing.
I had surgery in February and after that, the next thing was to get my results. After that, there was the next thing to deal with. And so it goes on.
I have Reynauds disease, so my veins and circulation are poor. So tomorrow I am having a Portacath inserted so no more hunt the vein or needles. I am telling you this as an example of how the medical teams want to make this as do-able as possible for us.
BC does have positives if we choose to see them. Prior to this, I had no idea how much love I had around me not only from family and friends but from other women who are unfailingly generous in sharing their experience, strength and hope. None of us need be alone.
Remember, worry is like a rocking chair; it keeps you moving but gets you nowhere.
Much love. Pixie x
Sascha sweetheart, you are spinning around in circles getting yourself into a rigght pickle. STOP, think about what these lovely ladies are advising you about , think about how you would advise someone in a similar position and most of all accept that cancer is NOT necessarily the death sentance you think it is.
You need to get yourself a nice cup of tea, or whatever you fancy, a lovely biscuit to eat and RELAX and try to put your situation into perspective.
Node involvement does NOT mean spread. Your body temp , as has been said by some very wise ladies, varies from day to day, 35 degrees is normal for you while you live in a hot country.I live in saudi Arabia where it is stonking hot, my temp has gone down, I guess it's Mother Nature's way of keeping you cool...
As for mourning for your old life, well.. part of growing up is accepting that every experience we have in our life, good or bad, shapes our personality and alters our perspective on things. Our minds,opinions and thinking has been altering since we were born. ACCEPT that this has happenend to you, yep, life can throw us a challenge at times, but you need to spin this situaition on it's head and treat it as a challenge. It's a challenge which you and your partner can overcome together, together you can be strong...
Why am I saying this???..I was you 14 months ago...scared,in a foreign country with 3 children to care for and feeling very sorry for myself. But it does not help. Be positive that you will both get through this, be stronger for it, and treat it as one of life's little bumps...
Good Luck, xx
Sascha - say this aloud every day:
I am STILL the person I always was
I CAN be the person that I always wanted to be.
Thank you Ninja - my body temp used to be 36.5 but now its 35C and I live in a hot country! I know metabolism works better if you have a more average body temperature and mine just seems to be going downwards. I am hypothyroid but that was checked recently and all is within normal ranges.........
I am currently mourning everything, NOTHING is the same..... and I don´t even feel like the same person
Sascha, you said, "Out of interest does anyone else have a lower than normal body temperature? Mine is 1.5C below normal".
37 isn't NORMAL, it is just an average. My normal is 36 - 36.5.
It's good to know what *your* normal is, so that it's easier to see if you experience a change.
BTW, my Dx was stage 3 BC, with massive inoperable tumours, and most nodes were involved. I had 3-weekly chemo followed by weekly chemo; that shrunk the tumours enough to have them removed in a radical MX and level 3 ANC.
I'm now one year on from Dx and 6 months on from surgery and no recurrence yet!
It's normal to worry, to be scared and to mourn your old life.
What a marvellous, sensible, piece you have written! I remember your kind words and reassurances when I was first dx. (Feb).
I agree entirely, that trying to manage the whole thing by small steps is preferable than trying to wrestle with the whole; for me it (was) is the best way to deal with it.
The number for the helpline for those overseas is:
(+44) 2076 200077 lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm - UK time.
I have been following your thread but so far have resisted joining in the comments. You have already had lots of excellent thoughts from very wise, well experienced people who I know and trust through this site.
We have all been at the stage of blind terror, of wondering what if this, that or the next thing, and we have all discovered our own ways of getting through whatever this disease throws at us. You are right courage is facing things that are scary, but you don't have to climb the whole mountain at once. I found once I had a treatment plan things got easier, and I then broke that down into little chunks - so, for example, I visualised chemo as walking up a zig-zag path on a mountain with each 'dose' as a bend in the path. I marked each turn with a tiny treat and celebrated reaching the summit! Once I'd done that I began to visiaulise the next phase of treamtent and so on.
Jane chose to find something to be grateful for every day, I chose to find something beautiful every day - a similar exercise. A flower growing in derelict building, a goofy dog, a toddler kicking up the leaves... the possibilities are endless. Laughter, smiles and gratitude - I think they all help us feel better.
You ask about low than average core temperature - yes, there are some of us who do, I am one of them. I am not aware of any link between core temperature and cancer, and frankly am unconvinced. So far as I can tell, our normal is our normal, and we can't substantially alter it. Everyone's temperature varies from day to day, and even hour to hour, due to all sorts of factors. I know it's hard, and that you obviously want to do everything you can to keep well, but I would really try not to Google or to believe everything you read - as Jane says a lot of stuff is out of date or plain old fashioned wrong. Try to stay with 'safe' sites such as the main BCC one, Cancer Reasearch UK or MacMillan being the best UK sites. I understand that the helpline accepts international callers (a moderater can tell you the number) and it might be worth a chat with them.
Take care, you will get through this, just be kind to yourself.
Edit: I had three nodes affected - having node involvement is still primary and does not necessarily mean it has spread any further, rather it means the nodes are doing their job! Alas sometimes medics don't make that very clear when they tell us.
Thanks Jane - I get it from the doctors who look at me in that serious bad news face and say and its in the lymph nodes now as though its a death sentence and who then say you will need systemic treatment no matter what (this is complicated for me as any of the standard systemic treatments, hormone or chemo, endanger the current stability of my other serious disease.
So are you telling me that lymph nodes being affected does not necessarily mean its inevitably spread?
Hi Sascha... not sure where you're getting the extra info (which does add to the scariness!) but one thing we have learnt is not to believe much of what we read on the internet, as a lot of it is is out of date and/or just not backed up by real evidence. You may be wise to all that, in which case I apologise, but.. take care.. Jane
Thank you - I do normally live in the present and live near he Mediterranean sea so have lovely summer holiday type smells every day - today its orange and lemon blossom, at night its a night scented flower......so I do find something every day but I am scared to hell. I went to the doctor as soon as I found anything even slightly suspicious and there was nothing in my lymph nodes then and now its two months down the line and it is in the lymph......
I remember someone saying its only courage if you are scared but do it anyway as no courage is required if you are not scared but I don´t feel brave, just super wobbly and shaky and my partner is scared too but trying to be strong. We have had a rough few years together and had just turned the corner into a better kind of relationship and now this.
Your posts have helped so a big thank you .....
Out of interest does anyone else have a lower than normal body temperature? Mine is 1.5C below normal and I understand this makes your more prone to cancer and degenerative disease (another new bit of info I did not want to know!) - if so what did you do to get your core body temp up?
Courage isn't being without fear - it's feeling the fear and doing it anyway......
cancer IS random and no respecter of persons... i had "significant" spread in my lymphs (10/18) and my oncologist is using the word "cure" after MX, chemo & rads.... hang on in there.....
once you know what the plan is, it helps... and DO try take one day at a time... I made a conscious CHOICe to find SOMETHING to be grateful for every day - not always easy, but when I got to the end of the journey, I realised it had made the journey more bearable, to focus on something good (even if it's just a flower or the sunshine) every day.. Bless you... Jane
Just wanted to say that like you, I struggled with the fact I lived a healthy lifestyle for many years to cope with other health issues...and was diagnosed with BC. I became very upset & angry, & wracked my brain with the 'why me's'... My Dr told me that of the 2000 people on her books, I was in the 1% that she thought would not develop cancer. And this is how random it can be, so please do not blame yourself.
I echo lbx157 - please continue with looking after yourself with your healthy lifestyle, it a great form of self care & love to support your body in this way.
I agree with you - It is a very difficult time to be in... take it one day at a time, you will find resources within you to cope which never knew you had. I certainly did, as have many others on this site who are holding you in mind.
Hey Sascha !
I had hx of csysts, so thought no more of it. Then was told it might be worth scan. Thought no more of it. At scan they took bx - I thought no more of it. The results said it was grade 2 cancer. i CHOSE to think no more of it because I could not accept or understand it.
12 hours before my lumpectomy I was told I should consider a full mx & anc. I trusted the professionals and to good effect: turns out it was a grade 3, they found another 2 tumours, and 5 of my nodes were affected. I am now waiting to start chemo and then rads.
Courage? I am not couragous. I am scared to hell. I am unsure, and I am ready to hide under the duvet and bury my head in the sand. But if I do, it wont change the outcome. I have worried myself sick about all the possibilites, but I know that all the worrying in the world will not change my cancer. I just have to cut it out and get on with it. Thats not 'courage' - its realistic.
Everyone here has a similar experience in one way or anoher. And guess what - we are ALL holding your hand. LETS DO THIS !
Hugs to all,
Please don't tie yourself up in knots trying to work out why you got BC. It won't do you any good and there is never any one answer to the question, sometimes it just happens & we will never know why. What I will say though is carry on with your healthy lifestyle because it will give your body the best chance of recovery.
Thank you again everyone, really kind to share so much. I did post looking for other people in Spain but there does not seem to be anyone.
I am really cross about this as I have spent the last few years really over-hauling my health, diet etc and it is all good and positive, I lost weight slowly over a year, exercise so have good muscle tone. I had my lifestyle wake up call in 2004 when I was diagnosed with a life changing but non cancer related disease........not eaten meat for over 20 years, no smoker for about 18 years and never smoked heavily etc etc......all I can see is that my diet was perhaps not alkaline enough (but I did not know about alkaline versus acid)and that I worked too much (out of financial necessity)....but I do have sunshine nearly every day.....
There is little I can add to all of the above as it is all excellent advice but what I can say is that I have been where you are now TWICE . . . but read on. I was first diagnosed in 1998 and was told that 5 out of 11 nodes were cancerous. I had an 8 year old daughter at the time & I really didn't think I would see her grow up. The thought of cancer treatment was almost too much to bear. I just couldn't face it but I had to. However it really wasn't as bad as I imagined & I think you will find, as I did, that wonderful help and support will come from the most unexpected places. I got through it as you will to.
In 2004 I had a local recurrence & I had myself dead and buried before I had even got out of the consulting room. But this time I only had to have a mastectomy. Take note, this was all EIGHT years ago now (13 from the first diagnosis) & I am now healthier than I have ever been and because of the experience I know the true value of life & I try and live each day to the full. You will get there too. If someone had said to me 13 years ago that I would be feeling like this now I wouldn't have believed them. So hang on in there, there is light at the end of this very dark tunnel and life will be good again, believe me.
I also had my lumph nodes removed, only 1 turned out to be positive.
I have some swelling under the armpit (4 months later) which the oncologist is still saying is normal and will settle in the next 6 months. It is a little sore sometimes, but not really painful. Simple paracetamol deals with it.
Both the scar from the lumpectomy (WLE) and the lymph removeal healed quickly. I didn't need chemo but did have 3 weeks of radiotherapy.
There are some other people on here who live abroad, it migh tbe worth posting to see if there is anyone in your country.
Im so sorry you are going through this, it is a horrific time, it was my worse nightmare to, and im so mard , I just could not see how on earth I would be able to face surgery and the rest, but you do, the courage will find you and you will tick off each step and claw back bits of your life you think have gone for good, but they will return to you.
As for pain, I did not feel any at all, I had mast with immediate
LD flap reconn. The medical team were great , they promised me no pain and they true to their word.
take care xx
Thank you for your lovely and prompt replies. I am not in the UK so do not have a BCC Nurse and they do not go in for emotional impact or even simple customer focused care here, its just all very practical and objectifying. I do have a lovely consultant (they are few and far between in my experience) and hope if I do accept surgery I can ensure it is him doing it.
Beyond that I don´t know, its the uncertainty and just thinking oh well lymph nodes are involved so I´m done for. 3 doctors gave me that pitying bad news look when they said lymph nodes involved (the largest one was biopsied as well so I hope I will know something concrete about that too on Monday) but the doctor already said he would want to remove that even if negative. That really scares me for the surgery itself and afterwards..... I can imagine the breast area post op is probably not that painful but not the underarm as the biopsy hurt like hell afterwards......
This is my worst ever nightmare having BC.
I am not saying I will lay down and give up, I have ordered general immune boosting supplements and an anti cancer alkalinising diet book but I really do not think the standard cancer treatments are right, in fact philosophically I am against them, as immune boosting therapies and some of the other treatments seem to me to make more sense......and fit in with the latest research on cancer about how it really is an individual disease.
For me the answer was to take one day at a time, and try not to assume the worst case for each section of my journey. Often easier said than done of course, but I learnt to distract myself when I could feel I was starting to go into meltdown.
Also coming on here, asking for help when I needed it, sharing with others going through the same thing, and eventually trying to help those that follow.
I am sorry you find yourself on this site.
Last May I too was looking at a future involving treatment for BC. Believe me I know what stress you are going through - it is a living nightmare BUT when you do get to find what your treatment involves then you will feel more in charge. Cope with it in small bits - use your BCC nurse - they are excellent, and use this site for support - also the helpline on here is a great help. I know it seems the unthinkable but don't look too far into the future of your treatment, take one step at a time. It is doable Sascha, have you been to your GP for some medication to help cope with this awful time?
I have pretty useless veins, but the nurses on the Chemo Unit are so good at their job that they will sort you out - there are options, is there a different hospital you would prefer?
Hope this helps at least a little bit
Oh Sascha its early days for you and we have all been there, if you click on my name you can read all about my dx/story, like you I hated hospitals and never really had any cause to go to the dr or a hospital before all of this, I think the survival instinct kicks in and you will do almost anything in order to survive, here's a perfect example of this survival instinct, my friends mum has motor neurons disease she's been living with it for 15 years and gradually getting worse and worse she's on a concoction of medication and is effectively trapped in a body that wont work anymore, she is confined to her home and wheelchair and cannot even talk she communicates by writing everything down, but she wont give up, it is truly amazing what the human body can cope with, when the time comes for you to have treatment you will have the courage to survive its a natural instinct.
Take each day with one step at a time try not to second guess anything, you are in the waiting room at the moment and it is truly awful, we have all been there and it was no picnic, once you have your results good or bad you will start too feel better they will give you a treatment plan I found that once I started treatment I started to feel better, ok there is SE (side effects) but this is doable, I had chemo first to shrink the primary lump and the secondary mets, chemo really does work my lump went from 6cm to 2mil then they operated and managed to get clear margins cause the chemo did such a good job of shrinking everything down, then 3 weeks of radiotherapy which finished in Jan this year, I'm recovering still but getting there and you will too. If you ever want to chat or ask anything just pm me (private message me).
Sorry I've been rambling on just wanted to encourage you that you are strong and can do this.
Love and light
I was told before Easter that I definitely have breast cancer and lymph nodes are affected too and I was then left for 2 weeks, finally had biopsies this week and should get the results on Monday. I have been going out of my mind with stress, upset, depression and all sorts, and I just do not know how I am supposed to find the courage to face a year of medical treatment, as that seems to be the minimum. Hospitals traumatise me, I truly hate them when I´m a patient, I do not feel safe and recent events added to that as I was not treated well in hospital. If I have an aggressive cancer or if it has spread to other parts of my body I think I may just opt for surgery to get rid of the prime tumour and then to live he rest of my life as I wish.
How does anyone ever find the courage they need? There is nothing about the breast cancer treatment process that is anything other than my worst nightmares come true. I am not being a drama addict, I have other health issues that make some treatment options very difficult and I have tiny veins so even a blood test can be challenging for them. I don´t want to live like an invalid for ages spending all my time going from one horrible treatment to another and then to die looking skeletal.