4 Years Plus, how do we feel??

[Guest user]

Bev

Sorry to hear your news. I had 100% lymph node involvement with 2 tumours of 1 inch and 1cm, grade 3, stage 3 so aggressive.

Personally if I were going to be put through chemo then I'd push for lumpectomy or WLE unless you're sanguine about losing your breast.

D

[Bevlaar]

Hi
I'm 4 years since original dx of grade 3 triple neg 2.9cm tumour. no nodes and had just 3 removed with sentinel node biopsy - lumpectomy with clear margins. 6 months chemo and rads.
This week I was told i had a recurrence after my annual mammogram picked up a change. Its in the very same place but only 1.2cm and i have had an ultrasound done where radiographer said he also saw a lymph node on mammogram but couldnt detect it on ultrasound due to the scar tissue. I then had biopsy and have to go back on Tues for results. What will that tell me, will I then know if any nodes are affected? I've been told I'll now have mastectomy and all lymph nodes removed in few weeks.If there is a cancerous node, does this mean will have to go through chemo again? And what are the chances of the nodes being cancerous if tumour is only 1.2cms? Its strange that with a 3cm one last time I had clear nodes.
Bev x

[Guest user]

Hi ladies

I am now 4 years post my second diagnosis of BC - recurrence in the same boob. I was never fearful after my priamry dx, as my mum is still with us some 20 years post dx and my sister has also been well following her surgery. I just got on with life, caried on working, even re-married. I felt that life was too short for 'average', if you know what I mean, but apart from that I was fine.

But since I was dx in 2005 with local recurrence, my views have changed. I don't post very much on here any more, but I belong to a local support group and sadly have lost two good friends to this disease. The fear never goes away completely , and every time I have another appointment I worry again. I've had a few 'problems' along the line, some more scans and regular b/t etc. so obviously I am worried. But, overall, I think I have learned to live with it all now. I get on with life, albeit a bit slower and more careful because of lymphoedema, but overall try and not let the fear of a further recurrence overwhelm me.

But I never say to anyone that I am 'over' BC, because that is not how I feel and it is not something my consultant will say either. I am just grateful for every year that goes by without any further problems.

[Guest user]

3 years post-dx and coming up 3 years post-end of treatment. coped really well and was very positive etc etc at the time..............but last year as someone else said i had a minor cancer of a different type and completely fell to bits. i've now managed to reduce it from sheer panic to just background anxiety which is progress i guess, but it was also a lot of work. i can't stop "monitoring" myself for symptoms all the time and the fear just seems to move around from one part of my body to another. my work colleagues were also absolutely horrible to me which was more distressing than going through all the treatment. i did the Moonwalk this year and thought that in a way it's a bit like going through treatment and living with the aftermath..........all the support and razzamatazz is at the beginning when you're full of energy, but it's actually later when you're cold and tired and sore and have been slogging along for hours that you need it more........ however...........i have a very loving and supportive partner, we've had some great holidays and enjoy our home.........illness really lets you know who your true friends are, one or two people are definitely off the list but the good ones have stuck around.........i guess maybe we'll always have to live with the fear but that makes us heroes i think!

[Guest user]

I am so pleased to have read all your comments and pretty much agree with all of them.

I am 5 and a half years from diagnosis and although life has been good to me during those years (daughters both married, two lovely grandchildren etc) I still live with that fear that my luck will run out. I still dread the yearly mammos (I start worrying months and months before they are due) and am hell to be around while I wait for the results and nobody seems to understand why I am so scared.

I never look forward to anything that is too far ahead as it seems still to be tempting fete. I do just take each day as it comes as far as possible. I do wonder whether I will ever feel completely at ease again.

I think five years is some sort of landmark that we all aim for and when it comes there is a certain sense of 'well, what now?'. I agree that it would be good to have some sort of support day or our own section on the forums.

Best wishes

Pisces

[delamere]

I thing your idea of support group for those 4 or 5 years post DX is great. i am 4 years since dx and i find that the issues don't go away, they just change. E.G. long term effects of being on hormone traetment- Lymphodeama,Tiredness and tired of feeling crap!! In some ways i have moved on massively, in others i feel right back at square one.
i actually can't remember life before BC.

YES we need a support day!!
Marg xx

[Flynnsmum]

Hi

I am just short of my 5 year anniversary and so far so good!

I feel that I have turned a corner recently after a rough patch last year when things came to head after watching my best friend loose her fight for life against BC. I had some counseling and went on a 'Living with Cancer' course which seemed to make a big difference as I now seem to be more in control.

I expected to fall off the Hospital list but was told that whilst 5 years is 'significant' I will be called for appointments (every 4 months including mammogram so far)for 10 years so on it all goes!

I now seem to have more good things happen than bad and long may it last but I will never be the person I was or loose that 'riding my luck' feeling either

The only people who can understand how we feel is us, we are members of a club no one wants to join!

Take care

[Guest user]

Hi Liverbird

I am up to my six year mark next month and have been discharged from the breast care clinic. I have had no recurrence of my breast cancer (fingers crossed), but I did have a completely unrelated cancer on my tongue two years ago (such a shock, although I do believe that if you have had one cancer you are slightly more at risk of getting another). Before my second cancer I had pretty much weaned myself off the site, but now I am much more aware of how tenuous things can be and have found great comfort in reading and joining in with posts again.

I would be very interested in a session for people who are four or more years down the line, because I think we would have so much to share with each other.

Best wishes

Gwyn

[Homer]

hello Ruth,

i have not heard from you for ages, but saying that i don't use the site as often as i did 4 years ago.

it will be 4 years for me too this October,so far so good.
i am happy with my diep and my life is good,working part time i never went back to the old 6 days a week job, my life's too important to be stuck in work for hours, away from the people i love.

For me i have never been off the check up routine, my oncologist still sees me every 6 months, i had thought that by now i would be on 12monthly check ups,i don't mind though as its peace of mind as he always gives me a good check up,so i feel better that nothings going on.
i do try to get on with my life but it never goes away that fear of it all flaring up again, every ache and pain i get makes me a little scared.
i guess we will always have the fear of a recurrence unfortunately.

[Guest user]

hi all
just saw this post. i will be 4 years in sept since diagnosis. unfotunately was diagnosed with renal cancer last year just when i felt i was moving forward. i am only now beginning to see the light at the end of the tunnel after a nephrectomy followed by a clear ct scan. i do have my down days where i fear what if but try really hard to focus on the positives in my life. i have been able to go back to work and though still have terrible fatigue, i rest when i can. cancer is always at the back of my mind, and as a nurse i deal with it every day. i am lucky in that i see a clinical psychologist every 3 weeks who has helped me deal with my thoughts and fears as well as the sudden passing of my dear mum late last year. it would be great to attend a workshop and meet other ladies in the same position, albeit a fortunate one. im sure other ladies coming up to the 5 year mark fear that "left out in the cold" scenario with no check ups and no tamoxifen. best wishes to all of you
annie

[chalee]

Hi everyone. I'm also sorry I missed this first time round. Just would like to add my best wishes to everyone 4/5ish years from dx. I'm six and a half years from surgery and I'm glad to hear from you all. In the wider world it's all forgotten about by now but the insecurities are still with me. Good luck to you all. x

[Guest user]

Hi all

This is an interesting thread, sorry I missed it before, but I try not to be on here too much.

I passed my five year mark in May, and even celebrated ‘five years clear’ with a works lunch out. Which was great fun, as I’d won some breast shaped biscuits in a raffle the previous Christmas and shared them around and we all had a good laugh. Turned out it was premature as I got a bone secs diagnosis in June, after months of hip pain that I should have recognised as serious. (How embarrassing is that!)

Before the secs diagnosis, I really had managed to get to the point where I wasn’t thinking about cancer every day, had even slipped back into the old pre-cancer mentality of not consciously trying to make the most of every day.

I too would be interested in something (meet up?) for those of us who are 4 or 5 years plus, as my feeling is that the longer we live with this disease (especially those of us with secondaries), the less time we have left. That really hit home recently when I came up to the one year post secs diagnosis. If I only had a reasonable expectation of 5 years with secondaries, then, good grief, a fifth of that has gone already. I can’t believe how quickly the days are rushing by, it’s now nearly August, we’re racing inexorably towards the end of 2009. Do others feel the same? That time is just slipping away from us.

I was unexpectedly sick on Tuesday night and then spent the whole of yesterday in bed. Inevitably hubby and I thought the worst but I’m sure it’s just a bug. I feel loads better today. But isn’t it horrible that with every little thing we get, we quite naturally fear the worst?

Liverbird – I have scans coming up soon too and it is really scary, isn’t it? I feel so lucky so far that it’s just bone mets but can’t help feeling that my luck is going to run out soon ….

Alison x

[Guest user]

Any update on this JO?
I hope its not going to be something we never hear a thing about again.
I am wondering if I will attend if anything comes of a day for 4yrs +. Had to put myself on the 'rollercoaster' today of ONC>SCANS>RESULTS, beccause of excruciating shoulder back pain.
I always wonder if I shall be up at the top on results day or down at the bottom.

Rx

[karen]

Thanks Jo.

Karen

[Guest user]

Hi All

I will be reaching my 4 yrs this December, I have a crap prognosis and my very blunt Onc put the fear of God into me from the first day we met. I was so fearful and depressed I considered refusing treatment as thought it would be a waste of time. It also spoiled occassions that should have been happy times as I was a crying wreck fearing it would be my last.

For me it has got easier and it had to otherwise I would never have relaxed or been able to genuinly enjoy normal family events. The more anniv I hit helps me to push it all into another part of my brain and being told this year by my Onc I am now anual appt's and how I am pleasantly surprising her gave me a boost.

However at the same time I am also realist, I used to be on this site very regular on a younger woman thread, out of the 7 of us who met Oct 2006 sadly only 4 of us are alive. We have now decided to communicate via e.mail as needed a break from this site. I just pop back every now and again and I suppose having another 2 years of tamoxifen is a daily reminder.

Take care all

Debbie X

[Jo_BCC]

Hi all,

I brought this thread to the attention of our manager who asked me to let you know that the topic you are discussing will be brought to the next Service meeting for discussion there. We'll keep you informed of any progress.

Kind regards,
Jo, Facilitator

[karen]

BCC...it seems alot of us who are 4 Years Plus have issues/concerns/fears...So would you please seriously consider a workshop....and maybe a Topic covering this area on the Forum?

[Marge]

Hi Liverbird, nice to see you posting again, you were one of the first girls to reply to a post of mine nearly 3.5 years ago. Like you I still fear the return of this dreadful disease, but it is not in my mind every day.
My friend has just been diagnosed and had a mastectomy and reconstruction 2 weeks ago, I hope to give her a lot of support, I know how much I appreciated the support I got on this forum.

Keep well
Marge
xx

[Guest user]

Hi All

I am coming up to 4 years but have had 2 recurrences, a few weeks ago I realised that I had started to go a day without thinking of the cancer. That was absolutly refreshing. This week I have been having pains on my mastectomy scar line. I want to wait and see what happens, hopefully its just that I have been overdoing things but the blooming nags have come back!
Sometimes I forget to check for lumps in the neck etc then I feel guilty of neglecting myself.
I don't want to run back to the hospital ever couple of months because I worry they won't take me serious. I guess I will wait until my September check up now as I am going on holiday in three weeks.
What a yo yo we find ourselves on ladies.

Take care all
Carol

[Guest user]

Hi everyone

Long time no talk!

I am not quite two years post dx and sometimes it seems a million miles away and at other times it's too close, like a patch of skin that looks odd, could it be......

I was trying to anwser a question about pensions this week and found myself saying that I would definitely be taking the tax free lump sum.

love to all Wizz

[Guest user]

I reach my 5 year mark in September.I am just beginning to relax a little -even though I have been lucky enough to have had no problems at all since DX.
In that time I have ;
-had some 'big' holidays (Canada and QE2)
-took a new job in a different line of work and settled in so well I have just been promoted.
-seen my granddaughter start school -on the day of my op-and is now finishing year 4.
- saw my oldest daughter get married to a lovely man(she came 3rd in her local race for life today by the way * insert proud Mum icon*)
- waved off my Son to his new life in Canada.

The only thing now is that Im not looking forward in time and dont have plans for my retirement - I take each day as it comes. I do panic with each little pain or ache-that will never leave me.But I feel so thankful that I have had this time after that devastating Dx day.

[cathy]

Hi All

I am coming up to 4 years in september. I too have a gremlin that keeps shouting at me. I keep waiting for the fear to go away but it never seems to. I am living with it better now, so thats a bonus. Had a few problems along the way but nothing too major. I was wondering if anyone could tell me what happens when you hit the 5 year point.

Thanks
Cathy x

[Guest user]

Hi all

I have not been on for a while. I am 3.5 years on and still think about it coming back all the time - although it has got easier with the passage of time.

I have had some abnormal bleeding on tamoxifen which I have just had a hysteroscopy to investigate and they have foudn 2 benign polyps and a bit of endometriosis which they think have been caused by the overstimulation of my womb on tamoxifen!! Although they are thankfully not cancer and I only need a minor procedure to remove the polyps it's not the point - the ***** treatment ie tamoxifen has just caused me more problems . They have said I have to take it for the remaining 1.5 years though as the benefits outweigh this "minor" problem.

Luck and love to all

Alise x

[karen]

Well said Nicky08 x

[nicky08]

Hi
This is a very interesting and very real thread. I was 4 and a half years post diagnosis and my onc had even cancelled my final appointment with her as I was doing so well. I then found out from a routine mammo that I had a local recurrence and subsequently, from scans, bone mets. My fear had never gone away I had just pushed it as far as I could to the back of my head. I think one of the real failings of the media, and the charities are also to blame here, is the 'I'm cured' image. This has been mentioned ages ago on here but it's no wonder all of our friends and family think we 'cured' as soon as we stop active/invasive treatment ie chemo. We live with this fear hanging over us and we do feel differently to all the non cancer sufferers. It would be good if our fears, and the truth, about BC returning was made more aware to the general public in campaigns etc. Maybe then how we feel would be better understood and not be dealt with so dismissively.
Off me soap box now!
Nicky

[corsa]

I am only 18months since first being diagnosed ....and I thank all you lovely ladies from the bottom of my heart for voicing my fears.
I am sure if one more person tells me to be positive , I will not be reliable for my actions.
Love Bobbie

[josyemarie]

Hi karen, I too am 5+ years ned I'm triple neg and feel exactly like you - I keep wondering how much longer will my luck hold out ...and boy have I been lucky so far!!

[karen]

Hi Liverbird,
I too think this would be a great idea.
I reached my 5 years at the end of January and was discharged from breast care unit in May..although I have open line to them..as my BCN says....you are never really completely discharged you are on the books forever.
The 5 year thing means nothing to me...I lost my aunt who was originally dx 19 years ago...to breast cancer 4 days before my discharge......I didn't feel euphoric...in fact felt and still feel scared...kind of like at the end of treatment.
I am now no longer taking Tamoxifen..after taking it for 5 years...and I found that in itself difficult to cope with....as long as I was taking that little white tablet I felt I was still being treated.....I know that now I am no longer taking it my risk level has gone up again.

I remember my GP telling me about a paitent who, on reaching her 5 years said she felt like a weight had been lifted off her shoulders....unfortunately I feel like a weight has been put on my shoulders!!

As time goes on I don't think ..'' I seem to be beating it ''.....instead I think ...'' how much longer will my luck hold out''......not a very positive thought I know but I have never been one who believes in positive thinking.....I believe in reality!

[Guest user]

Hi R.

Good to see you again.

I think your idea for a 4 or 5 year workshop is an excellent one and hope BCC will take it up.

I found the fear got easier after 2 years, though of course I did get incurable recurrence 3 and ahalf years after primary diagnosis. Its strange but in many ways the primary diagnosi was for me the worse thing...I had a poor prognosis (which has turned out to be better than onc expected...I am alive nearly 6 years later when I had bad odds for 5 year survival.) I did a lot of emotional 'work' at primary diagnosis thinking about my likely premature death, and nothing has ever been worse than the first moment I was told I had cancer...it was like a huge before and after screen had been smashed through my soul.

Good luck to everyone living with fear...I don't usually go for trite mantras...but I've always rather liked 'Feel the fear and do it anyway.'

Jane

[Guest user]

Hi Liverbird,
really pleased you are doing well and good to see you posting.
I don't think the fear can ever leave you cancer is horrid. I was just coming up to my 5 years when secs were diagnose, what a shock that was!
This week will be my 10th year living with breast cancer. It is only the past year that I have found it hard as the disease takes hold and the chemo struggles to keep it in check.
Love Debsxxx

[Guest user]

Hi Liverbird,

I achieved my 5 years since dx at the end of May this year and I am thankful for the fact that I have no reoccurence or secondaries. But I often come onto the site becos the fear never leaves me and I like to think I'm a strong person, but this disease takes over your life no matter how hard you try to move on.

I lost a close friend last Sept who had the same dx and similar chemo and she died in 6 weeks after falling and discovering it was in her bones and elsewhere. It was very scary and still is to me and I still feel her loss every day. I,m sure other people are different in the way they deal with this - I dont know what i would do without this site as everyone around me assumes it is over and I am getting on with life.

Dont get me wrong - I realise how very lucky I am. Its just it does change how you think and act in life in a very fundamental way and its forever.

Sorry if this is a bit morbid but its from the heart.

wisps

[Guest user]

It will be 4yrs in Oct since DX, up to now no re-occurrance or secondaries which I am so thankful for.
However the 'fear factor' never really leaves me.
I do not come on BCC as often just have some free time today so browsing and found some good posts and thought I would do this one.
Also always want to know how people are.

Please reply if you are 4yrs plus and still coming on to the site.

I have managed to re-gain some confidence and had a holiday to America something I never thought I would do back in 2005. I do look to the future and my girls marrying and possibly grandchildren, BUT the little 'fear' gremlin often whispers to me, like the other day when hubby was talking about his lump sum when he retires 'you may not be here' Then I do feel envious of people who have never had a cancer Dx and the way they seem to live life with no 'what if' above them.

Could I ask BCC if they would consider doing a 4 or 5yr plus day or 2 day course? It would be lovely to meet up with other BC buddies and see if we think alike and fear alike. We could help each other and perhaps see what works for us all as regards living a 'normal' life.

Rx