Livia, I've had the odd tantrum from time to time, but the completely distraught weeping and wailing, and the utter terror, was only right at the beginning for me. Once I knew what I was facing and could get my head round it, I felt much more in control. I hope you get to that state quickly, The Waiting Room while you don't know what's what and what you're dealing with is just such a horrible place, loads if not all of us have had the screaming abdabs in there. So don't worry about freaking out, I reckon we've all done it at least once at some time or another, and more so at the very beginning.
Best of luck.
Hi, I am another Grade 3 ER + person. I had chemo and rads and hormone tablets. All of this was 3 and half years ago ! I have not seen the cancer return as yet. Like all of the newly dx. I was scared witless and didn't think I would live through the week let alone a year. I worried i wouldn't get to 40 (38 at time of dx). Well ,over 40 now ! (42) and still going strong.
Hi, I'm new to this site (newly diagnosed - with similar grade, size etc). Posted my own plea for comfort. But reading this has REALLY helped me. I think you lot are absolutely brilliant. I only HOPE that I can come out of the end of the process with a similarly positive outcome (!!) and outlook and help other people who are FREAKING OUT like those of us who are new to this 'club'. THANK YOU!
Just a note to cheer you on im a grade 3 her 2 and im in remission with not a sign of a cancer cell in my body. 9 months from diagnosis. It can be ok. Keep positive.
So glad that you have managed to get over the initial panic of your dx but sorry to see you panicking about the next steps.
My advice is to take a step at a time, get chemo started and then turn your mind to the mx. i speak from experience as i have questioned, researched, questioned and made my own decisions all the way. i asked for mx AFTER chemo as i thought id cope better, i asked for SNB after chemo because it wasnt done prior and i wasnt happy having them whip out all my nodes based on the word 'suspicious' and not positive, i got a second opinion about my recon and i asked for rads as id read that this wasnt always offered after a mx but gave the best results.
my mx is happening next week and i am going into it knowing that everything has happened with my input leaving me free of the dreaded 'What if?'question.
Take your time to find info and make sure its from reliable resources. lots of the lovely people on here can share their experiences - but be aware that,like you, many can be looking for positive info having had a bad experienc, which may not be the normal experience for the majority.
The support on here has helped me thru the worst, maybe check out the Dark Woods thread where there are people at every stage to help you through this as well as the helpline x
Thanks everyone, havent been able to get online cos of dreaded computer probs. but sorted now! Have read everyones stories and feel bit more positive so am starting chemo. on Tuesday next week! Really scared tho, especially bout losing hair and eyebrows! I m apparently scheduled for chemo called FEC, whatever that is! Strangely enough I can cope with that, but need help with reconstruction, cos have been left with 32 G boob on left side, so really want a reconstruction on mastectomy side, hoping for a silicone small one and/ or mastectomy with silicone implant or big reduction op. as only want to have small boob the other side! My surgeon says that a silicone implant after waiting 6 mths. after rads. will still cause trouble, which has made me pretty depressed, as dont really want to go through the back/shoulder tissue thing he seems to want, dont know if its possible to get 2nd. opinion? I know I m being shallow, but after chemo, it would be good to think you may get boobs back again! Think my husband will have better boobs than me, lol! Good luck to everyone going thru this awful disease, and hope u r doing well, lizzabett xx
Feeling scared is 100% normal. I don't think any of us are any braver than the rest - but over time I think a lot of people get to settle into it and realise that it's mostly doable (with a bit of help and support and a lot of rest and encouragement). I'm more than half way through chemo and last night was out for a lovely meal, seeing friends at the weekend, got out in the garden, and get compliments on how I look (thanks, Mrs Wig Specialist!). Some days are naff, yup, but for most people there's still fun to be had here and there.
Keep talking with everyone....
Hi there, Big thanks to everyone who have made me feel more positive. Have had compututer probs. so apologies for late post! Have got appt. to see my oncgolist on Friday, 11th of this month, and have got a nice wig, but so scared of the whole thing! I am going to try and beat this horrible thing, but still feel I m fighting a losing battle! Everyone seems to be so brave out there, but I m being a coward. I was so active before all this, and I just wonder if I will ever ride horses and walk miles with my dogs, cos I want reconconstruction, and I ve heard lots of scarey stuff about all of this. Also, where can I get nice bra s as I m stuck with my mums kind of bra, and its making me depressed, tho it sounds shallow, I m early 50 s, and still want to look normal! Sorry to ask so many questions but you r so helpful! Thanks, Lizzi x
my consultant told me that 8/10 of ladies whatever age with our diagnosis are alive and well after 10 yrs and that I would do even better than that as a bit younger 47yrs, so i'm happy and sticking with that!
Your treatment will be individual to you and will take into account your pathology and age.
If you ask your onc they may give you your individual stats - if that is what you want.
I am 53, had a grade 3 cancer, eostrogoen positive, no "C" gone past sentinal nodes and was about 30 mm.
I wanted to know my stats and I was told that without any treatment at all I had a 26% chance of it coming back, with chemo it reduced to 20% and with rads as well it was 12% and then I am having hormone treatment (Arimidex)for 5 years. I was also told that these figures are based on the past 5 years and treatments have improved over this time but it is the best information they have.
I hope this makes you feel a bit better than your originally figure of 45%
The chemo is hard but doable and we are all here to support you.
My onc refused to give me statistics as he said they weren't relevant for me as they don't include Herceptin (I'm HER2+) or aromatase inhibitors that he's proposing putting me on in a couple of years, and the radiotherapy regimes have changed a bit too. So he reckons they're too out-of-date to be relevant to me. But he also said that my prognosis was very good, even being Grade 3, as it's stage 1 and was caught early. So fingers crossed he's right, but only time will tell.
Echoing what other wise people have said - the odds for Grade 3 with no nodes involved are way, way higher than 45%.
The stuff online is mostly rubbish or just plain out of date. For a start, absolutely none of the stats yet include the new research on things like social networks (it halves your chances of non-survival if you have a good social network - they haven't a clue why, but it's good and big research). So if you had a 90% chance of long term survival, it becomes 95% I think. Plus lots of new stuff on how the body's own defences can be reactivated. Lovely new research this week in New Scientist magazine to show that the body has its own defences in its bacterial colonies in our guts which protect against cancer, so they're looking at how we can re-tune those colonies of friendly fighters too.
Chemo isn't fun but it's doable. So's the hair loss. And there's a real sense of community with others who are going through it all, I'm finding.
Hope we can all be here for you
Ann x (also grade 3)
I too was petrified when dx 7yrs ago with Grade 3....know exactly what yr feeling.
Fortunately at that time I DIDN'T use the internet.....think if I did I'd of thrown myself off a cliff!!!.......my Dr's first advice was DO NOT go on the internet.
Sites such as this are good though...as you will find alot of support, do remember...as I was told....do not compare yr case...yours is individual to you.
Sorry you have had to join the 'club' no-one wants to join xx
CM: "I know I was convinced I would be dead in a week when it first hit me (Grade 3 stage 1...)"
I was convinced I'd be dead within a year; Grade 3, Stage 3 unless they change their minds after next biopsy. Adding in the TNM scores makes me a 3 III; that's the one with the smaller %age survival rate in the OP, not a 3:1. Still, 2 months on, and I'm still the same as before, albeit with a bag of SEs to carry and a much smaller tumour mass thanks to chemo. I'm planning on being here annoying the hell out of everyone for a long, long time!
D'oh! I went off for a cup of coffee in the middle of that post, only to find alto's been there before me! Think I'm going to have to put "the plait" back on as my avatar for a while - just to encourage my scalp to shape up.
Lizzi, glad you've come down off the ceiling about it and we can all sympathise, I know I was convinced I would be dead in a week when it first hit me (Grade 3 stage 1 Er+, Pr+, HER2+).
just a quick plug for another charity that could make use of your long hair. I had long dark hair almost to my waist (and intend having long hair again!) but before I started chemo I had it cut short and have donated my hair to Little Princess Trust, who take donations of hair and make them into wigs for children in the UK who have lost their hair, mainly because of chemo. Take a look at http://www.littleprincesses.org.uk and see what you think. I know a few ladies on here with long hair have done the same, and speaking for myself it felt like I was able to go into chemo knowing that there was at least SOME good coming out of me losing my hair and I could mentally stick up a middle finger to cancer.
As for the dogs, they might have to put up with a bit less exercise than they're used to if you currently do five-hour walks every day, but a good walk with the dogs can be just the ticket to counteract the tiredness. I know it sounds a bit weird but it's a great way to clear a chemo-induced woolly head. (And then have a sleep after the walk). And I did a 15-mile walk with my OH and his dog the day after my third dose of chemo, so even if you DO want the occasional 5-hour walk, you could find that you're up to it, particularly near the end of a cycle before the next lot.
Good luck, and use the forums as much as you find helpful.
I was diagnosed in December with stage 3, grade 3, 6 out of 12 nodes affected so chemo was not an option I could ever have considered turning down.
I've just finished my chemo and you can see from my avatar pic what my hair used to be like! I was like you and people tended to see me in terms of my hair, however my feelings were that I'd much rather be here in ten years time and lose my hair for a bit, than keep my hair and run a serious risk of not being around to enjoy it! The worst bit for me was having it cut. After that going bald was easy; I don't wear a wig and go bare most of the time.
If your hair is long enough you might want to consider having it cut short before chemo and donating it to the Little Princess Trust who will use it to make wigs for children who have lost their hair due to cancer treatment http://www.littleprincesses.org.uk/ . Both chocciemuffin and I have done this and its one way of taking a bit of control over it all.
I was actually surprised to find that I really liked my new short hair and intend to keep it that way (it actually started to come back before chemo ended, which is very common).
Good luck with all of your treatment and please let us know how you get on - we do understand exaactly how you feel and you can moan to us as much as you like. We do actually have an awful lot of fun on here as well!
lizzi i have gone down the chemo road and like you my bc was all contained in the breast im also tripple neg so chemo and rads is all i can have , yes hair loss is hard mine just been cut as im losing it now but the other day while in hosptial i met a lady having chemo and i thought she has just start only to find she was on her 3rd her wig was brill couldnt even tell it was a wig so not all wigs are bad i have heard of some ppl cutting there hair off and using there wigs before it comes out and ppl never knew the difference , as for being sick i havent been yet not saying i wont be but so far all i have had to deal with is high temp and thrush and the need to sleep , i still look after my grandsons and walk my dogs just sleep between it not going to say its easy but it can be done
all the best maz xx
As someone with stage 4, I'd say you would be totally bonkers not to have chemotherapy. Yes you have a grade 3 tumour, but from what you have said it has been contained within the breast, with no lymph node involvement. So the only danger, is that you could have some cancer cells (micro-mets), in your blood - which is why you are being offered chemo. Obviously, there is some debate about how effective chemo is at destroying micro-mets, but what's the alternative?. If you don't have chemo, the micro-mets will eventually progress.
Sorry just read your post that you do intend to have chemo - thank the lord!.
PS I have a huge GSD (He weighs 9 stone so is big enough to be like two), and he was my one incentive to get up off the sofa during chemo. Good luck, it will soon be over.
Hi there, thanks so much for everyone taking the time and trouble to answer my questions! I m feeling more positive now, I just felt that I d been handed a death sentance when I read some stats. from the Gov. website. I know now from this website and my G.P. that I should go down the chemo route, tho I m dreading being sick and losing my long blonde hair, it sounds really shallow but its a bit of me that everyone knows! Have booked appt. for nice wigs on Tuesday, but still dreading it. I just hope that I can still cope with my 2 German Shepherd dogs thru chemo, cos they like there walks, and I ve always been into fitness and walking. Unfortunatly my husband has heart disease, so I ve let him struggle with dogs since mastectomy! Think we are going to try and sort out dog walking plan, plus grandchildren sitting as well! Things never seem to be easy! Lizzi x
Choccie Muffin is the wisest 🙂
There is a lot of misinformation out there.
Mine was Grade 3, most aggressive, large tumour at 45mm too, no vascular or lymph involvement and I was told 86%.
The chemo and radiotherapy is what makes you feel ill yes and not at all pleasant, however, I was told if I did not do this regime and Tamoxifen for 5 years, then this would go from 86% to 70%.
Why? Mainly because there is still a chance even if they get clear margins of tissue on operation, there is no evidence of vascular involvement and No Lympth Node markers, there could still be errant Grade 3 aggressive cancer cells that can escape detection and may not have left markers in the blood or in the nodes, that could without treatment grow again into Mets elsewhere in your body. It's important not just for recurrence but also for Mets, Mets carry a least chance of survival from what my oncologist told me.
So that's why its so important to weigh up the odds, if survival increased by 16% then it's worth it I think.
Thats my opinion of course.
Talk in some length to your BCN or to Macmillan helpline - its a confusing and complicated thing and its hard to get your head around it all
There are so many factors that go into a prognosis. Grading is just one element.
Staging is far more important than grading.
Far better to be Stage 1 Grade 3 than Stage 3 Grade 1.
Grade 1 cancers are very slow growing and can be pesky things. Because they have been in the body a long time they can be quite sneaky so the idea that one cancer is more aggressive than another makes no sense. The treatment you receive will be geared to what you need.
My onc and surgeon have banned the use of the term "aggressive" in relation to cancer types because it really is emotive and meaningless.
Grade 3 is very common in pre-menopausal women. And it isn't an immediate death sentence. Grade 3 cancers - because they divide faster - tend to respond better to chemo.
You have no nodal involvement - that is something to celebrate. You can take hormone therapies which work brilliantly because you are ER+. You will hopefully respond well to chemo because you have fast dividing grade 3 cells. You don't have to suffer Herceptin because you are HER2 neg. And you get to keep all of your lymph nodes so no risk of lymphoedema. Happy days!
I'm also grade 3 stage 3 but with 2 nodes affected. My surgeon and onc both reassured me that with treatment I should do very well and 80% chance of being here in 10 years time. My onc said that the people that don't make it haven't necessarily died of BC which to me makes the stats even better. My first grandson was born the day of my mx and came with me to an onc appt. After cooing over the baby dshe said there was no reason why I shouldn't enjoy being a GREAT grandma after all the treatment is over. You will too x
Choccie is spot on 🙂 with her advice Lizzabett. Some of that stuff 'out there' is so out of date too. My first brush with breast cancer wasn't quite the same as yours, but it was a Grade 3. It was 5cm but ER/PR neg. Back then (1990) her2 and herceptin wasn't known about although it is pretty certain mine came into that category of very aggressive. It came back a few times - new tumours and recurrences but in 2004 they tested and found I was her2+++ and put me on herceptin. By then I had 2ndaries but they were stopped in their tracks. Like you I was looking forward to so much and thought all those hopes were dashed. I wont list them all but they have all come to pass 🙂 and we had our first grandchild last year.
I hope you will live to experience all the things you hope for ust as I have.
Looks like no-one gave you the best advice I'd had - DON'T GOOGLE! There's a lot out there that is out of date, trying to sell you something, extreme, and often DOWNRIGHT WRONG, and as a consequence scares us half to death.
Take a look at Cancer Research UK if you're interested in survival statistics. Certainly from memory a Grade 3 HER2- Er+ Pr+ with no nodes has a MUCH greater survival rate than 45%, certainly if you take treatments into account.
Can I suggest you give the Helpline a ring in the morning? They will be able to point you at more up-to-date statistics than what you found in your own wanderings. It is true that the stats USED to be that low, but with the improved knowledge and the excellent treatment we get (yeah, chemo is tough but worth it) your chances of survival, particularly with clear nodes, are really very good.
Dont worry - I know its easier said than done, what u have written was me a few months back, im Grade 3 and and 2 infectected nodes out of 18 removed. I had a WLE, got clear margins clear scans. Tho Grade 3 my chemo is a prevention of recurrace and to mop up any stray cells should there be any, but have been advised that tho 2 involved it does not mean spread, it just that they done their job and the nodes are all linked together and nodes 1 and 2 were infected and other 16 clear, but all your nodes are clear. My prognosis tho grade 3 is good, all clear just a mop up with chemo and rads. Chemo is hard, very hard but u do get used to it and u do learn to listen to your body to help u thr it, its tough but we are all here for you, please feel free if u ever wish to PM me if u have any questions, cos i really do know how you feel. Shar xxx
Hi, I had grade 3, 8 years ago and I am still here, and fine. Chemo is not much fun, but you will come through. Don't borrow tomorrows sorrow. Enjoy your grandson and the others. I've not got any yet, so I've got to live a long time to enjoy them !!
Don't worry, Lizzabett!!
Me:- Aged 56, grade 3 IDC, ER+ Her2-, node negative (like you)Started chemo earlier this week, to be followed by rads and arimidex.
Oncologist says I have about 81% chance of being disease free 10 years from now. Talk it all through with your oncologist. He has the all the statistics.
Chemo isn't pleasant but it is doable.
I was 56 at DX with grade 3, ER/PR + and 3 affected nodes. Had surgery (WLE), chemo and rads and I'm still here to tell the tale. Of course it's worth chemo, it's not pleasant but it does the deed.
I'm now on the other side. I've retired and am enjoying life - off on a cruise next week!
Chemo is really worth all the hassle. It's not nice, in fact it stinks, but it does give you your life back. Don't underestimate it.
It takes a while to get over it but you will be glad in the long run. You'll have your life back.
I have 16 grandchildren and I love them all dearly. I'm not going anywhere soon.
Just batten down the hatches for a few months and soon you'll be enjoying your grandkids again.
Hi sweetie, welcome to the horrible club, with lovely members!!
I am so sorry you have to join us here, but you will find lots of support.
There was one positive bit news that I picked up on your horrible diagnosis (I try to find something postive in all cases to try and offer some comfort) Anyway I noticed you said your nodes were clear, which is a very good start as this means the cancer has hopefully been stopped in its tracks and NOT spread, do you know if there was any vascular invasion. I was diagnosed a week before you and have grade two and also clear nodes, the one thing that I panicked about was having infected nodes.
Why not give the helpline a call in the morning as they really are very good, and hopefully might be able to back up what I said about the nodes being clear and give you some reassurance.
Please keep us posted of how you are doing. Good luck.
I'm sorry, I don't have any comforting stats or anything, just wanted to let you know someone understands and I'm thinking of you. My first dx was a grade 1 tumour in 1997 and then 2 years ago I was dx'd again and told it was the same cancer but had mutated to grade 3. I haven't seen the stats you have referred to, all I know is that there are people on this site who have been living with cancer, and with secondaries, for many years, and they have fulfilling happy lives.
That doesn't mean its not OK to have scary days, its a scary position to be in, and there is so much stuff on the net, isn't there?
I hope you're feeling a bit better tonight
Help! Being a coward today. I was diagnosed with invasive ductal b/c on 15th March this year, and had a mastectomy done, right side on 18th April, as the lump was 55mm. Got my path report which says Grade 3, oestrogen positive, HER 2 negative. Lymph glands done by sentinel node biopsy was negative. Am waiting with dread now for chemo, but am scared it may not work cos I ve just scared myself on another site that grade 3 tumours are aggressive, and have only an approx. 5 year survival rate of about 45 percent. Is it worth going thru the chemo and rads? I m 54, and was still getting periods but drs. have put Zolodex implant in tummy which is giving me a fast menopause so feeling pretty awful, husbands staying out of my way tho! I m just having a real scarey day today and thinking I wont see my grandchildren grow up, my last grandson was only born 3 days ago, and I dont want to be crying over him! Thanks everyone for being here.xx