I’m writing in a hope someone will give me some perspective and I can get a grip on things as my brian is spiralling out of control
I’m just back from my Marsden appointment, and now have the full diagnostic picture.
My tumor has been graded as 3, and stage 3. Thankfully it’s only spread to my nodes, but it is huge measuring 13cm and still growing. It’s also ER+ and HER2+
I’ve been told the treatment suggested by my local hospital is fine with the addition of Herceptin when I finish my 3 FEC (to run alongside Taxotere), and Tamoxofen once I’ve had my surgery.
The stats for survial look hideous dispite all this treatment, and I’m just scared I’ll never live the life with my children that I’d hoped & planned for.
Sorry for such a downer, just feeling a bit overwelmed
You poor love I know its just mind blowing but you know you are in the right place and that from now on you are in their care. It has been found…the best bit of all.
I am just going to say these stats are just that…stats…!!!We are all individual.My way of looking at it is…was I a typical stat for getting BC, probably not but you know here I am with it.
I had a grade 3 tumour, only 2.5cm and had 2 lymph nodes involved. I am a triple negative so only chemo and rads and no drugs would work on me but one thing I said was I didn’t want to know my stats…you see I was told I had less than 5%chance of having a baby naturally and yet I did. So stuff those stats…!!
Herceptin is brilliant on all accounts as is Tamoxifen. I know your head must be all over the place and I know its so hard to take it all in but one step at a time hun. I have young mums in my support group who had large tumours and the chemo worked wonders and shrunk the tumour and if any lymph nodes were involved then the chemo got those too.
Its is overwhelming I know many of us feel this way…the next step is getting rid of it and treating the whole of you.One step Rebecca, try hard not to look at the whole picture. My GP was brilliant she said all you need to know it what your treatment plan is…not figures…!!
I expect many others on here will give you support and comfort that you need.
Keep thinking you will live the life with your kids, they need you and you them. I too have young children and I imagine myself and picture me at their weddings etc. Don’t get me wrong I have some dark moments but that is normal…but you know I pick myself up look at all I have and think right @*SS off dark thoughts…look at now. !!!
Be kind to yourself sweetie…we are all here to help as much as we can. If only we could all meet the women who had this 20yrs ago who are still going strong…even when herceptin wasn’t around or the wonder chemo drugs. You will be one of these ok…!!!
Sending you a huge cyber hug…(((((((((((((((((((((( hug)))))))))))))))))))))))))))))))
I am sorry to read that you are going through such a worrying time and just wanted to say that you may find it helpful to talk things through with one of our helpliners, they can offer you support and a ‘listening ear’. The number is 0808 800 6000 and it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.
Having just read your post I dont have any words of wisdom, when I went for my oncolgy appointment I asked for my stats with my sister sat there saying why do you want to know that you worked with numbers every day as a accountant and know how they work and she was right but I wanted to know, as paula42 has said they are just stats, I to have wonder if I will be here to see my boys get married have children but then I remember that I am lucky that my cancer is ER+ so hopefully tablets will help keep the cancer away, my best frinds mum had bc 43 years ago and is still doing well. Not sure if this helps but it is a saying I have used lots of times.
The world is littered with statistics, and the average person is bombarded with five statistics a day1. Statistics can be misleading and sometimes deliberately distorting. There are three kinds of commonly recognised untruths:
I know what a scary time you are having right now. The thing with statistics is not that they are lies but that they apply to groups of people…no one can ever be sure what will happen to an individual. There are always some people who are on the good side of bad statistics and the reverse.
I was diagnosed at stage 3 grade 3 in October 2003, had 10 months of tretament and then had no evidence of disaese until a regional recurrence last April. I am older than you but somehow it has been possible to grab good times among the hard times…and I’m still here and didn’ expect to be neraly 5 years on when I heard the grim stats for myself. I have had lucky and not so lucky times with those stats.
Hope for little things…one step at a time…and yes for thosee for whom it works herceptin is certainly bringing miracles…I hope that it is your wonder drug.
You are bound to be scared but you will also have good days.
I’ve read your other post too…call in all the help you can.
Dear Rebecca - Just want to add my hugs to those of Paula and Debra, who have already sent you wise words on “stats”. I think they, and Paula’s GP, are so right. Stick the figures back in a box now, shut the lid, and forget about them. You are you. You are going to be treated with the most effective cancer treatment available anywhere in the world, and the outlook is brighter than ever before and getting better all the time. You are going to take one day at a time. It will be hard as hell, but you can do it. Your life must feel that it is crashing out of control and that is frightening as hell. You have no control over what has happened to you, but now you can choose how you are going to deal with this. Keep looking forward, keep hopeful, Rebecca, you can do this. Dont be frightened of the times you need to cry, and rage, and are scared - that is all so normal. But you will get masses and masses of support and love from all sorts of places. You can do this. You will do this. You will somehow find strength you never thought you had - but for now you need to allow your self time to recover from the shock, grieve for the care free life that you have lost, and gather your resources. Keep posting here. We are all thinking of you. Masses of hugs. Sarah xxx
Hi Rebecca
Just adding my hugs to the above. Stuff the stats - you can beat this. Think positive for yourself as well as your family -you can beat this.
Thelma XX
Dear Rebecca - I just read your posting on the younger women thread, so know a bit more now about your treatment and that you have already started chemo and also about your family situation. So very, very hard for you. But there are lots of really helpful comments back and knowing that so many others are also somehow juggling and getting through the days one way or another is such a help. Do do ask for help from any and every direction - don’t for one minute feel you have to do this on your own, you are dealing with more than any person should have to but there is lots and lots of support - reach out for it. Your last line sounds so wise. Worth writing down and keeping close to you. Look forward to hearing how things go. Good luck with the rest of the chemo. I have just finished FEC and start Taxotere in a few hours time - really should go to bed, but sometimes this site is better than sleep (or helps a lot when you can’t sleep, let’s put it that way!!!). Sarah xx
I was given a similar prognosis to you. I initially had a wle and snb to be told - margins clear for IDC but you have extensice DCIS too and lymph node involvement. Decided on mastectomy and recon - to find another area of idc not known about (although small 1.5mm). Had 12/29 lymph nodes positive - grade 3.
Have just completed chemo (3 fec and 1 tax, 1 abandoned tax due to allergic reaction and 2 CMF). Now on 4 week break before commencing rads. I am ER+ and PR+ but HER2 -. So tamoxifen for me.
As the girls have said - stats are just numbers - we are all individual - I do have some dark days - but have decided to try and enjoy life to the full. Someone has to fall the right side of the stats. I too what to see my liitlies grow up.
Loads of cyber hugs - you will get through this.
Im 35 with grade 3 cancer, only slightly PR+ so they arnt sure if my tamaxofen is going to work, but they are giving me it anyway. I have studied statistics to degree level and please remember they are just numbers. I know its hard and scary but i tell myself everyday i want to be an interfering mother in law as i have 3 boys and im going to be here untill im 120 to make there lives hell!!!
In statistics there are things called “outlyers” that fall off the graphs on either side so you are going to be one of those on the positive side. When i asked my oncologist my stats he told me i really didnt want to know, me and my husband looked on the internet, and decided not to take any notice.
You know those words you say about grieving for the life you thought you had…you are soooooooo not alone I still have those days but you went on to say you still have this life. For about 1yr your life is taking a path you didn’t imagine…but along that path you will meet fantastic people and you will find more courage than you maybe didn’t ever imagine you had.
Sorry that you have had to join us on this crap journey. The early days are the worse, I was diagnosis 18 months ago with a grade three tumour, 6/14 lymph nodes involved. I have just finished treatment chemo Fec and Tax, rads and a year of Heceptin. I am feeling fine, I mean really fine. 18 months ago I never imagined I would be where I am today, back at work, life is good and on 3 monthly check ups. It all takes time but it will get better, just hang on in there and be good to yourself.
Your post struck a cord with me and I feel I know exactly what you’re going through as my head was spinning just the same when I got my results in January (surgery after chemo) -Grade 3 Stage 3 -12 out of 15 lymph nodes involved with extracapsular spread and vascular spread. The scariest time imaginable. I was convinced I was about to die.
I’ve got two little boys -2 and half and 8 months old and they’re fantastic and a brilliant husband and family and I don’t want to leave anyone yet!
Everyone’s posts above are brilliant and so well said, it’s so easy to look at stats and I really wanted someone to tell me ‘my prognosis’ but I discussed this with my psychologist and decided that no one can tell me ‘my prognosis’ as no one knows!!! No one can say what will happen to ‘you’!!! All the stats are based on 5 to 10 years as that is how they measure it, no relation to lifespan at all. All the stats are also based on completely different treatment to the treatment we’re all getting as it has changed so much. Herceptin is our best weapon in this fight and we’re receiving different chemo to women 10 years ago. Tamoxofen is a brilliant drug too and very well established.
So remember, you are you, your treatment is your treatment and your outcome will depend on loads and loads of things.
Things that have helped me feel a lot more positive are these discussion forums and the fantastically inspriation women writing on it, my psychologist, prozac, reiki, massage, generally spoiling myself, spending too much on handbags and shoes, cuddles with my boys, going out and having good times, red wine and actually doing whatever I want to do and booking loads of holidays when all this hideous treatment is over!!!
Start planning some good time for you -whatever you like, lunch with friends, shopping, massage … whatever. Reiki is really really good for me and hynotherapy too for deep relaxation and good visualation. Remember your body is now in shock and I found it helped loads to allieve the anxiety and panic attacks and scary feelings.
Keep in touch -would love to know how you’re doing.