Hi I am using my sisters login at the moment as I do not seem to be able to register myself. I was told last Friday that I had a 5cm grade 3 tumour removed 2 1/2 weeks ago with 1/4 lymph nodes involved, not hormone receptive so no tamoxifen. Have further surgery scheduled in the next two weeks for lymph node clearance and then likely chemotherapy. Have been offered little support from hospital in the way of someone else who has been through this or words of comfort like my sister had like treatment more advanced now, lots they can do, support for my family, nothing like that. Could really do with some hope and advice from someone who is going through this or who has come out the other side.
Sorry you had to join us here but you’ll get lots of help and support here. I believe this site also offers a ‘Peer support’ service where they put you in touch with someone to talk to on the phone. Were you not seen by a Breast Care Nurse at the hospital? The BCNs are usually caring and helpful when you phone them.
I had a grade 3 tumour removed in December 06 and had 2 positive lymph nodes. Surgery was followed by chemo and radiotherapy and in my case a year of Herceptin. Unlike yours, my tumour was hormone receptive so I’m also taking Aromasin. I’ve finished all treatment now apart from the one pill a day and am getting on with my life.
I remember the awful waiting time after surgery and that once I started chemo I felt much better psychologically because I felt that I was doing something positive. I see that you’ve got further surgery to remove more lymph nodes. I hope the time before that operation passes quickly for you. Come on this site as often as you need to ask questions or just to say how you feel. I found that just reading other people’s posts was a great help to me as well and made me feel much less alone.
Take care and let us know how you get on.
Love Anthi x
Hi jellybabes,
sorry you have had to join us, but there are so many of us on this site and we all know how you are feeling. I still can’t believe I have this some days and I was diagnosed in Feb this year. I am about half way through chemo but will not finish it until Nov and then go on to radiotherapy, so will be around for quite some time. I would suggest you read through the threads and just jump in where you either find something in common or some people who you like the sound of. A lot of people are on the chemo section well before they start it, just finding out a bit more. People stay there for quite a while. I started one when I knew my first date of chemo and have met some of the most fab people you could hope to talk to. We like to laugh at anything we possibly can, but that is not for everyone, so see where you feel most comfy. As Anthi says do some reading around the sites. It helped me to realise that although I had BC there was still a lot of things to be thankful of as there is always someone who has a lot more to cope with than I do.
Hey, you have one thing ticked off that big list, just keep looking at the next thing to be done to get you well and tick them off. Time will go past quicker than you think. Remind me I said that when I start moaning again!!
Big hug for you
Lily x
Welcome to the forums, if you would like to contact the moderator explaining the problems you are having registering we will try to sort them out. In the meantime you may find the BCC resources pack helpful, it has been designed for those who are newly diagnosed. The pack is free of charge as are all our publications, if you would like a copy just follow the link below: breastcancercare.org.uk//content.php?page_id=7514
If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I, too, was diagnosed with grade 3, 3 lymph nodes involved but hormone + in May this year and remember only too well how I felt. It was as though the ‘pause’ button had been pressed, my ‘normal’ life came to a stop and it was completely out of my control.
As everyone will tell you, the period you’re in is the worst - just waiting. Once I’d got the date for chemo to start the feeling was ’ bring it on’. I’ve now got 2 chemos under my belt with the 3rd this Friday and although I’ve still got a long way to go (another 5 cycles of chemo after this week, radiotherapy followed by 5 yrs of hormone therapy) I am actually looking forward and thinking about holidays for next year etc.
This forum is great and I’ve met some great ‘chemo buddies’. I agree with Lily that the biggest help to get through this is a positive attitude and a sense of humour.
Sorry to hear you have had to join us. The shock of the dx is awful and waiting for surgery seems endless. I was diagnosed this Feb with Grade 2, multifocal, lobular, HER2. I had a mastectomy and lymph node clearance as it was in 6/21 lymph nodes. I have had 3 chemo and 4th tomorrow of FEC so far. Apart from a skin infection on dose 2 I have managed fairly well on chemo. As others say you start to plan for the future. I am managing to get away for short breaks and going out. Apart from the wig most people do not realise. So my experience of chemo is it is not too bad.
You will find tremendous advice on this site from others who have been there and lots of emotional and practical advice.
Good luck with your 2nd op. I did not find it as bad as I feared. The stiffness was nowhere near as bad as predicted but it is important to do the exercises.
I was diagnosed March 2004 with grade 3, 2 lymph nodes positive. I had the full works in terms of treatment (which was not as bad as I had imagined) and am currently very well. It was unbelievably shocking at the time, but you do get through it.
There are many on this forum with similar diagnosis and experience, so the best advice is to keep on posting and ask any questions you have, you will find loads of support here.
So sorry you’ve had to join us, but as everyone has said, you’ll get huge amounts of support from the wonderful people here. To laugh, cry, shout, scream, or even just to compare notes, there’s always someone here to help you or listen.
My story is very similar to yours, but I’m maybe 6 or 7 months further down the line. I had a 5cm Grade 3 lump dx in Jan this year, and had 1/15 nodes positive. I had chemo first (6 AC) then lumpectomy (possible as chemo was effective) and full axillary clearance. I start 25 rads tomorrow. It’s been a slog, but at the same time its not been as dire as I expected. I felt elated last week when I got my rads date, as to me it marks the start of the (hopefully) last stage in my treatment plan and I can see the light at the end. Things won’t be the same as they were after that, as I’ve experienced something that does change your life. But its made me try to make the most of the here and now and other good things have come of it - sounds corny but that’s the way I see it. Its certainly not something I’d wish upon anyone, but you just got to deal with what you’ve got in the best way you know how.
In my opinion, you’re probably at one of the toughest times - the shock and fear of the unknown isn’t easy. All I can say is take it a step at a time and try not to worry too much about things that lie ahead. When you feel fine, make the most of it; when you’re down, come on here or look to friends and family for support; and when you’re exhausted rest - listen to your body. It’s not easy, but it is doable.
If you’ve any questions about anything, just ask. But please do make sure you get assigned a breast care nurse - they are there to help you through everything. Good luck with it all,
Thank you all so much for your words of encouragement, it is frightening and I have been fortunate in that my sister has helped me enormously, bless her, having been through it so recently. However, I am now faced with something different as all her lymph nodes were clear and it is the unknown that is scary. She kept saying to me it is all doable so I especially appreciated your comment scotta because you said this is also doable!!! I do have a breast care nurse but my experience of them is very different to my sisters, who is under a different hospital she had home visits, frequent phone calls, words of hope and even hugs! I have had none of that which then makes me suspicious about the seriousness of it all and your mind races and I’m sure this is the Tom Jones theory!! (its not unusual!! for those youngsters out there!!) I do actually fit into the younger section on this site literally as I am 45, hey I only entered this so I could be classed as a younger woman once again!! On a more serious note, I will find out tomorrow when my next op is and I feel I have been taking things one step at a time (very good advice from my lovely sister) but the operation had been crossed off my list so I am a bit devastated that there is another one and feel back to square one again. One other thing that is preying on my mind at the moment is the fact that it is not hormone receptive, unlike my sisters so tamoxifen would be no good for me, does anyone know if this is this a bad sign, I never asked this question and it is worrying me? Scotta you never said if you were on tamoxifen? Well thanks again for all your comments, speak to you all soon, that big hug was lovely Lily thank you!
Dear kayty,do you know if you are her2+?If you are you will have the option of a course of Herceptin instead of the tamoxifen your sister had.If not you are classed as triple negative and if you type those words into ‘Search’ at the top of the page you will find lots of info[not all bad!]especially from Jane RA who is an expert on this type of cancer.I am triple neg as are many others on the site.All the best Vx
The results for her2 have not come through yet and if they are negative I will be classed as triple negative I guess. They have said that there is no rush at this stage because I wouldn’t be given the drug yet but it still feels scary not to have a back up drug which may help it not to come back, but we don’t have any choice in any of this do we!! Have searched on this and yes you are right lots of people are triple neg and it is nice to know that you are not on your own! Thanks horace!
Hi Jellybabes, nice to “meet you”. I was dx in May 08 and had a 6cm DCIS. Had a mastectomy at end of June and the 4 nodes took for sampling were all positive so am now going in on Friday for full axillary clearance. I know exactly what you must be going through. I am trying to be as positive as I have been throughout the last few months but it is not easy as although I am not scared of the op the results I am petrified of. What a really good friend has tried to instill in me is that whatever the results I cannot do anything about so try to be positive and we will face that bridge together. I also then face 7-8 cycles of chemo , poss rads and definetly hormone treatment.
If you want to chat I am here for you.
Take care with a big hug being sent to you
Sharon xxx
Hi Sharon, nice to meet you too!! So sorry to hear what you are going through at the moment, I will find out tomorrow when my next operation will be and like you feel very nervous about the results.Your friend is very wise you can’t change them but its still hard to not worry. I think in my case because I went as a family history patient as a result of my sister contracting BC, with no symptoms whatsoever, it doesn’t seem real, very strange feeling. I will be in touch after tomorrow and we can worry about the op together!!
Hi,
lots of luck to everyone having an op, results, appointments or just getting better this week.
Jellybabes, I think your sister’s treatment is over and above what a lot of us get. I don’t think this means you should worry, surely if they were worried about you, it would be you getting all the tlc. Yours is different to your sisters but it is how your cancer reacts to the chemo, etc that is important. My BCN told me that they have people who have very poor odds who react really well and ladies who should be ok but sometimes don’t do so well. Take her experience to help you but try not to keep comparing and thinking any differences are a problem. Just keep thinking, once these nodes are out, you won’t have any positive ones left.
Lots of luck and to you Sharon on Friday. Lunch when you are better?
Lily x
You are a very sensible lady and nice to hear your perspective on things. I know everyone is different and trying to remain positive has got to go a long way to your long term recovery. Good thought nodes out no positive ones left not thought of it that way. This site has given me so much support and help in just two days with so many nice people in a similar position but in so many different ways. Lunch would be lovely and something to look forward to.
Jellybabes,
Don’t be fooled. I am totally irrational when it comes to me!!! Going to have my 5th chemo tomorrow and I am changing drugs, so I might be a little mad or disappear for a few days!!
Take care and get eating lots of protein and good things to help you heal after the op. Most of all do something nice.
Big hug
Lily x
I was diagnoses last november with multifocal grade 3 breast cancer also had node involvement, but today I havefinished all my treatment an the onc said there is a good chance it will not come back, I know he cant say for certain it will not come back but thats good enought for me,
I know it seems a long way a way but there is light at the end of the tunnel and you will get there, non of it is pleasent but it is doable
I would be interested to hear how you get on with 5th different chemo. I guess this to be taxotere. I think I read elsewhere that you were having 4 FEC & 4 TAX. Is that so? If so, so am I. I have just had 4th FEC and managed quite well on that but due 1st (5th) TAX on 8/9 and am dreading it. So would be very interested to hear how you get on. I was told yesterday they give you 20mg of Dexamethasone to start as opposed to 8mg on FEC. I was horrified. I said so sickness is more likely, chemo nurse said yes. I have not read this in info I was given. Just nausea.
Anyway hope it goes well for you and look forward to hearing from you.
Hi Jellybabes
I had lumpectomy july 07 for what had been dx as a swollen lymph gland which turned out to be grade 3 idc and her2+ i had 2nd lumpectomy in sept to get clear margins and node clearance, 7 out of 21 were involved, i had 3 x fec and 3 x tax which ended feb 08 and 25 rads which ended april 08 i will be having my 12 herceptin tomorrow, i would’nt say its a walk in the park ( far from it!! ) but i tried to take it all one step at a time and tried to deal with everything as and when and got through it, i think the thought of having treatment is very scary but when you are actually having it and being able to talk to the nurses and other patients ( all in the same boat so to speak ) it helps to know what you are feeling is normal. I must admit though that i seem to be having more problems than i expected to now i am just on herceptin ( with muscle / joint pain, fatigue and generally feeling cr*p ) but most women i have talked to in the clinic don’t seem to be sailing through, so i think i might have just turned into a big wimp!!! or maybe delayed reaction to everything. I have not really spoken to the bcn ( there are 2 at my clinic ) apart from just after surgery a few times when i went back to clinic, she gave me her number so if i needed her for anything i could ring her, she also sent a note when i started rads just to say good luck but i think she left it to me to get in touch if i needed / wanted to. I hope everything goes well for you. Good Luck
P.S. i learned loads from this site!!! Love Mizzy xxxxx