I was diagnosed in July after core biopsies found BC in right breast and lymph nodes. I’ve just finished dose dense chemo and had lumpectomy and level 3 axillary clearance on 20th Dec.
I’m really scared. I got my results yesterday and 12 out of 15 lymph nodes were involved and cancer was found in surrounding tissue and blood vessels. I can’t stop crying as I’m so scared about the future now and my prognosis as I know this is a bad result.
I’ve got 2 little boys -2 and half and 7 months old and I can’t believe I might not see them grow up.
I have posted this with your last message too, but thought I’d give you the information here again in case you haven’t seen my other post.
It is always difficult when you receive results like these and it is normal to feel the way you are, I am sure you will receive plenty of support and advice from our users on the subject.
If you would like to talk to someone in confidence about how you are feeling at the moment please don’t hesitate to call our free helpline on 0808 800 6000 for confidential support and advice or even just a listening ear. The team can also discuss with you other support services and sources of help which you may be interested in.
The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.
I found it really helped me to talk to someone from the helpline who had been there and done that, so please don’t be afraid to give them a call, they are there for you.
hi hannah. i also had 12 of the 15 lymph nodes removed with cancer found in them .i had chemo and mastectomy and radiotherapy. and am now on arimadex. and 2 years down the line have n.e.d. so do take heart as there are loads of patients with your diognosis that are living now . its very hard to come to temrs with the diognosis .i know and each day i worry about any little lump or bump that hurts ,but try to stay positive if you can and always on here you will find support and friendship from us in the c club! sending you hugs and hope love lynn xx
So sorry to read your post. Its nearly 4 years since I got similar bad results after chemtherapy and mastectomy (had 23/25 nodes with cancer.) I went on to have more chemo then and then had no evidence of disease for another 2 and a half years. During that time I did worry aboout cancer a lot but I also had good times, really good times. I got a regional recurrence last year and am back on chemotherapy but I am still here to tell the tale.
I know or know of a few women with big node involvement OK several years down the line and a few many years on. Someone has to be the right side of bad statistics and all we can do is hope we might do that.
You will carry on…we do all carry on…despite the agony, the fears, the tears and anguish. We are all pretty tough we humans when faced with hard times.
I don’t have children so can only imagine your additoonal anguish. Your feelings now are quite normal…they will shift and change as you adjust to your prognosis and perhaps more treatment now.
Dear Hannah. I am another one who is still here to ‘tell the tale’. Had first bout of CA in 1999 with node involvement and vascular invasion. Had all the normal treatments, but no chemo - was not offered it. Tamoxifen for a few years and then NEC until 2005 when I had local recurrence. Had to lose my reconstruction and had total mastectomy as chest muscle involved and all remaining lymph nodes cleared to level 3 - sadly 8 out of 10 affected. Chemo and then Arimidex. But I am fine at the moment, no evidence of further disease at present and all tests normal. Have just come off Arimidex as I had too many side effetcs and consultant is very happy with me. I still have 6 monthly check ups and yearly chest x-ray and all the normal blood tests, so anything else should be picked up fairly early. I am doing reasonably weel in all reas of my life now , have the odd ‘wobble’, but most of the time enjoying what I’ve got and getting on with things.
I am thinking of you and sending loads of virtual hugs as I know how hard all this waiting is and the thoughts of future prognosis, especially when you have young children.
I am another one who had lymph node involvement, plus vascular invasion and a grade 3 tumour, and am still here! First diagnosed 2004, and have had 3 clear years since finishing treatment. There are many on this forum who have done welI following rather worrying test results.
I have thoroughly enjoyed the 3 years in a way I couldn’t have imagined in 2004 - when I got very scared both by my results, plus by the horror and concern of many around me, for example parents. I didn’t find this site for quite a long time, but it has helped me a great deal, as its possible to raise concerns and get calm and sensible replies
Hi
I was diagnosed last June with grade 3 and over 20 lymph glands invloved. Trying to be positive - my GP said glands did what they were supposed to do and caught it - also the fact that it is aggressive means that the cancer is dividing and that is when chemo is most effective. I’m 37 with two boys 11 and 8 and I plan to stay postive and fight this .
Had 6 TAC chemo now on 17 out of 30 radio and then herception for a year - good luck
I was so upset when I first got my results, 15/20 nodes and I scoured this site for woman with similar prognosis, I was absolutely petrified of what the future held for me, my children at the time were 8 and 6.
I first went to my BC 18.10.05 but not diagnosed until 13.12.05, within this 2 months my little lump grew into a 8cm tumour, shocked consultant advised full emergency mastectomy and SNB this then changed during initial surgery to FNC.
My Onc applied for extra funding to my local HA and got approval for 4xFEC + 4xTaxotere + 18 herceptin + 25 rads + tamoxifen, this was 6 months prior to NICE approval for taxotere and herceptin for primary BC and at a time when my local HA was on the local news being taken to court. So I got extra treatments and loads of appts with blood tests and prodding all over compared to a friend who was diagnosed a week earlier infact she commented on more than one occassion that she was slightly jealous of me!!!
I am only 2 years down the road, but have just had my recon which I am delighted with but due to original path report my PS would only operate once I had scans to further investigate, my Onc was adamant I would be fine as bloods always stable but in I went petrified of what they find and my whole spine, liver and chest are all NED. This was a huge relief, I know its not the all clear, but going 2 years with clear scans has now started to allow me some piece of mind that the extra treatment may just have done its job.
I have met an older lady at my local support group who was diagnosed a good 12 years ago, she had 10/10 involved and still here NED with no recurrences SO IT DOES HAPPEN.
Good luck with your treatment, if your kids are like mine they will help you through it, on my bad days I seemed to draw strength from their cuddles.
Tried to reply to you earlier but post went missing. I am sorry you are feeling like this but know how you are feeling. I was also diagnosed in July had a wle and snb which showed lymph node involvement with dcis also and no clear margins. went back 5 weeks later for mastectomy with immediate LD reconstruction and aux clearance. 12 out of 28 lymph nodes affected. At first felt terrified (and at times still do - but at least my lymph nodes did there job). I have had 3 fec and 1 tax - have 2 more tax to go then rads and tamoxifen.
I have some really dark moments but on the whole trying to enjoy my time here. I too often look at my children 5 and 3 - and wonder will I be here to see them go to school, etc.
Stats are only stats and some of us will fall one side and some the other - I have decided I am determined to see my kids grow up.
I spoke to someone the other day whose diagnosis was similiar to yours - 13 years ago and she is well and enjoying life. Her children are just starting college and uni. I take great comfort from that but also too well aware that some of us will not do as well.
This forum is fantastic and I take great comfort and support from it - you are the only people that can really understand how we feel.
I hope after reading the threads above you are feeling as positive as I am. I too have had lymph node involvement and my story runs along the line of JanetRA.
There are many of us who are still hear to tell the tale, but I can understand your worry as your children are so young. I often found myself saying, ‘well at least my kids are old enough to understand and look after themselves’. I have learned that I will have long periods of positive thinking followed by short blips of despair but I guess that’s how it will always be now.
Please remember there are so many choices and courses of treatment, all improve year on year, I know I have received ‘new and improved’ drugs over the last 2 and a bit years.
Thank you all so much for your support, it means so much, as you all know.
The last few days have been really hard and I wake up every night at 3am and can’t get back to sleep, feels like how I felt with original diagnosis back in July. I am starting to make sense of things a bit more and the original blind panic is subsiding a bit.
I’m very lucky that one of my best friends is a breast care nurse (she’s on maternity leave at moment). She came over to see me on Saturday and really reassured me. She said that there aren’t any stats for my diagnosis and treatment as Taxol and Herceptin only recently used and she read through my pathology report and explained it to me properly as I had scared myself a lot. She said that the cancer found in tissue and blood vessels surrounding the lymph nodes would not be active now as just completed chemo which would have killed off any micro cells that had escaped. My CT and Bone scans were negative before chemo and that I should remember that.
My big thing at the moment is that both the surgeon and the oncologist said that they know of women with my diagnosis who are still ok 5-10 years later and that is so scary. I feel that sounds like 5-10 years is my best outcome if I’m lucky and that means I won’t even see my baby go to secondary school or either of them as teenagers and that is just so scary and horrible. I love them so much and want to be there for them so much.
I want to grow old with my husband and do all the things we said we’d do, go to all the places we want to go to and everything.
Also, I was told originally that this was curable and now it isn’t and I don’t want breast cancer to be such a big part of my life, I just want to be a mummy and do mummy things, I’m fed up with all the treatmets, appointments, scans, blood tests -its all so rubbish.
Sorry, having a bit of a rant.Just hate the uncertainty of it all.
I am in a similar position to you regarding diagnosis and know that certain key words from path reports or the things people have said just go round and round in your head. I feel I could have written your posting of the 7th January myself.
I am taking part in the peer support service that BCC offer and have found it very reassuring. They do their best to match you with someone who has a similar diagnosis (in terms of lymph node involvement etc), age and children but who is some years down the line. I took comfort in several things my peer said to me - You Will be happy again and you will get through this. She also said that whilst nobody wants to be here there has never been a better time to have breast cancer as the treatments available have improved so much in the last couple of years (and will continue to do so).
I had driven myself nuts looking at graphs about survival on various websites. Most of these are out of date. I don’t look anymore. Chemo is my friend and, as hard as it might be, will help me beat this thing.
I am also going to a place called the Haven. There is one in central London and one in Hereford. There are similar centres around. Haven’t been yet but they offer a kind of sanctuary where you can meet people in the same position as you and also take part in the various therapies they offer. I need to learn how to relax and not think I am going to die without seeimg my 4 and 6 year old children grow up.
I know nothing can take away that uncertainty but I want to try and use everything I can to get my mind into a more positive place so that I can sleep well and try not to let breast cancer dominate my life.
I feel like we are peas in a pod I know exactly where you are coming from. I have 2 little boys 1 ans 3 and my baby was just 7mths old when i was diagnosed, I thought i had mastitis!! I just cannot get it out of my head that i will not see them grow up, it took me 10 years to have them and i just want to be there mum and get my lovely life back. I feel so envious of girls at baby group who only have what should we have for tea worries. I feel that i have lost the person i was and that upsets me as i think the boys will never know her. I had 11/23 lymph’s affected and have become obsessed as to whether it is in your lymph nodes and in some way am jealous f the the girls who haven’t. I also have the added worry of a nodule found in lung on ct scan but they will rescan at end of chemo to chk as not 100% sure as to whether secondaries or not.
I know it is hard but unfortunately there is no going back. We will do this for our little one and we will be ok.
Just wanted to say re the 5-10 years thing (and JaneRA is much better with the whole stat thing, I am a bit useless!) but I think they only really keep track of people up to 10years, this is just a term used to look at “survival” stats. It doesn’t mean there aren’t people living much much longer than that, just that this seems to be the way they look at the statistics.
I was diag feb 07 with stage 3 IDC, 14/25 nodes affected and vascular invasion. Had 3 FEC, 12 Taxol, 25 rads and currently on Herceptin. Currently NED. I have also been told that they dont’ have the stats yet for the treatment we are having - only inital indications that there are some real positives to come out of it.
Stay strong and keep in touch. It sucks, and is cr8ppy in many ways but you will start to feel less panicky and have more good days than bad
I’m feeling a lot lot calmer and better about things last couple of days. I have been in a complete panic since these results and saw my psychologist yesterday who has calmed me down and I’m going to try and look at the ‘here and now’ instead of 5 years time. I’m such a planner by nature, the uncertainty is driving me mad but everyone’s future is uncertain isn’t it?
You’re right -there aren’t any stats for our treatment, its all too new and Herceptin is supposed to be brilliant, its easy to underestimate it as you don’t see major side effects like chemo. I feel very vulnerable now the chemo has finished and my hair is growing back and I’m feeling normal again, I can’t get excited about that as feel I’ve lost the chemo protection. I’ve decided not to ask my oncologist for her opinion on my prognosis as I don’t think it will help at all and I’m not going to look at any stats anymore as they were driving me mad.
I’m having reiki and massages and going to try pilates and yoga and spoil myself a bit. I’m not going back to work -I spent the whole of my maternity leave having chemo which was crap so going to spend a lot of time with my boys over the summer when radiotherapy finishes.
My psychologist asked me what I would do if I was told I only had a year to live -and all the things I said, like savouring every day and spending loads of quality time with my boys and my husband and family -these are all the things we should all be doing anyway, even if we’re to live till we’re 100. So, knowing your prognosis doesn’t change the way we should be living anyway!
I’m not going to think about not seeing my boys grow up as I might see them grow up!! and I don’t want to waste anymore time moping around and worrying about it. But, saying that, I know I will have bad days from time to time.
Please let me know how you’re all getting on -I do feel a bit different with all these positive nodes than those without and would be good to keep in touch with you all with the same feelings.
About stats,I was told by my surgeon that when he said x% of 10 year survival he meant at least 10 not at most.I do hope you are on the right side of those stats,savour every minute of your babies.Babyhood is very short and you mustnt let bc spoil it. horacexx
Hannah11,
You must remember that they have made more progress with understanding and treating BC in the past 2 years than the previous 10 or so! I figure by next year we will know so much more, with more treatments and better prognosis’. I have 3 children under 10 and was floored with my sudden diagnosis end of October last year. 7.5cm tumour and 18/24 lymph nodes. I too became obsessed with everyone else’s stats for a while. But no-one can tell me what my exact prognosis is, so I choose to tell myself that I will get through this and laugh about it at my youngest child’s 50th birthday. Believing I will be makes this so much easier for me. Be kind to yourself,
love Liane x