Who is the author that says those with 1 or more lymph node involvemen have a 30% chance of recurrence? And is this statistic posed without that person having additional treatment, i.e. surgery, chemo, rads, arimidex, herceptin? i was told I had a 92% chance of no recurrence if I had all the treatment, which I’ve had. Now I’m wondering if I’ve ben given a bum steer and whether or not these figures are factually incorrect anyway. I know no one knows either way you’re going to fall and i totally get that, but… now 'm just really confused and finding it hard to make a decison on whether to stop herceptin or continue (my veins are shot and they say i need a line put in, but have given me option of stopping treatment on basis that i lower my chances down to 85% no recurrence). I am sat here, hours later still mulling over what to do. One minute I think I’ll stop, then I read a post here and think think, no i’ll keep going… ultimately, deep down i think, it really doesn’t matter eitehr way as I do believe that if it comes back it comes back and no amount of treatment will prevent that, it’s eitehr in me and that’s the way i’m going to go or it’s not! I dunno! This Ms Love statistics have really set my head reeling.
When I was first diagnosed with a recurrence after 7 years I turned to this support forum. However, I found it totally depressing and so decided to stay clear. Instead, I’ve found the greatest support in meeting every Thursday with 3 lovely ladies who I met in hospital. We meet, we laugh and we don’t ‘dwell’ on the crap card we have all been dealt. We all need to accept that our bodies are a complex map and we will all react differently to treatment - some of us will be lucky, others won’t. If we dwell on so called statistics and what ‘might’ happen before it has then we’ll be focussing on dying rather than living and be very unhappy stressed out people. I logged on tonight with the intention of asking if anyone was playing tennis after having a mastectomy & reconstruction using LD flap but instead I found myself reading this thread and guess what, I can understand why so many have said they’re feeling depressed! I think I’ll play tennis anyway. Carrie - go for a portacath if you can and keep taking the herceptin. Love to you all xxxx
I’m so sorry if this has depressed anyone or made them think their treatment is all for nothing. I only added my comments as I was interested, from a personal level, how many other ladies were in the same position as me. From this ‘side of the fence’ I would say continue with all the treatment you were going to then you know you’ve done all you can to help yourself. And don’t read any more depressing threads! I found the fear of BC far worse in the first 12 months after my initial dx which is where a lot of you ladies seem to be (time wise). After that I got on with things and it didn’t rule my everyday life, I hope you can be like that too.
Im sorry to have the mizzers reading this thread…will reread everyones wise words later today. I’m being tested for MS this afternoon started getting a numb leg last year before I found the breast lump. Just feeling a bit at the end of my tether and really scared.
What I’m really thinking is…I dont know that I would have had the chemo bit if I’d known the stats were so grim. Love to all you brave ladies and know there are loads worse off. Me and my tissues are off to the hospital.
I for one found this thread really helpful as i have been made to feel totally and utterly freakish by my family in partcular for developing secondaries after having clear nodes…it happens, we know the statistics but you are made to feel like you have failed if it happens to you We should be OK to raise these subjects and discuss them freely -please do.
Dr Susan Love is a very well known and highly respected US breast cancer surgeon and researcher. She has a website which you can find by googling Susan Love Research Foundation. Her book is the best I know for sound information about all aspects of breast cancer. I think there is a shot of Samantha in Sex and the City reading it after her diagnosis (but perhaps I imagined it…Katie61 you sound the expert?!).
Actually I got the figures from the 4th edition published 2005 (sorry…don’t think there is a fifth edition yet.)
Another American author who writes good stuff about breast cancer is Musa Meyer. In one book she talks about two kinds of responses to having breast cancer…people who are information seekers’ and people who are ‘minimisers’ No judgment attached to either but I think these categories help to explain why some people become so upset and angry when others of us want to talk information.
Hi Catherine…yes it’s been a very useful thread, I know so many friends who’ve developed mets with no node involvement…and yes we should be able to discuss this freely…especially with it being on the secondaries forum. If we start to feel we can’t post (here of all places) when the going gets tough for fear of depressing others it will be a great shame.
HI Catherine!! Add me to the NO NODE LIST!! I had 20 something nodes tested and all was clear. Ten years later I had pneumonia and had a chest xray which showd nodules!! After biopsyies was dx with mets to lungs. Don’t anyone apologize for posting here. This is the reason for the secondary site. I was in shock when I found out my BC had returned. I was flying along in life and not expecting to get whacked with the cancer stick again. I thought NO NODES involved that I was free!! Funnyface
Debs in Cornwall and KatherineM
Don’t mean to be morbidly nosy but how did you find out you had mets? Did you feel ill and/or in pain or where they picked up at a routine scan?
I am 4 yrs on and OK as far as I know so read this thread with interest (I had clear nodes). Have just had Xray for painful hip and today found out no evidence of metastatic disease, just (just?!) arthritis.
This rotten disease really has no rhyme or reson does it (BC not arthritis!)?
Sue
I just want to add that i am also a fan of Dr Susan Loves Book, I found it to contain a wealth of information and facts that i had otherwise been searching the internet for answers i had questions to before… so recommend it.
I didnt want to write this for fear if upsetting anyone as its the last thing i want to do…
As a 34 year old who has had chemo non stop for the last 3 and a half years with multiple secondaries to the lungs, bones and liver, who fears dying of this disease and feels cheated on lost oportunities in my life, due to this disease, who has just got back from having chemo - my 5th line of treatment, since other treatments have failed me, I find my life depressing enough as it is without coming on this secondaries forum and feeling a cannot now share my thoughts and fears with others for fear of depressing them or scaring them. Maybe i have read this wrong and am being silly but as soon as i read some of the comments on here, i felt sad and like a failure.
At the end of the day, nobody knows what side of the stats we will fall on and i’ve learned its no good worrying about things we have no control over.
Jakki I feel so much for you as I read this post. If we with secondaries cannot talk about this openly in our Secondaries forum here because of fear of upsetting those who read it who do not have secondaries then something is wrong. Your post highlights this issue yet again. I hope that when we have the new bcc forum up and running they will consider making some forums closed as we do with Secondaries on bcpals. I know this is not popular with many but i feel this should be put to the vote among those with secondaries on here. Please dont let this make you feel sad or a failure, or afraid to post and tell it how it is for you.
Your post brings tears to my eyes…though I’ve had an early glass of wine and feeling anxious about second opinion at Marsden tomorrow.
But its a kind of crying in solidarirty…I so agree with you…I am tired of being told my posts are depressing, so tired of having to tread softly for worry that someone might get ‘upset’. Some of the comments on this thread are horrible. Like all of us in ongoing for ever treatment and ongoing for ever till we die cancer I am just trying my best to live as well as I can for as long as I can…and because I’ve gained a bit of knowledge about this disease over the years I’ll answer questions with the best knowledge I have…
You are not being silly…you are being honest. We are not sad or failures…we have though drawn various kinds of short straws.
Thank you so much for your kind words… i agree with you Dawn that the Secondaries forum should perhaps be a closed forum like on Bcpals. Works good on there…we dont get the feeling of “treading on eggshells” before we post feeling there…
Good luck for your appointment at the Marsden Jane, do let us know how you get on. Enjoy your wine.
Being triple neg and with clear nodes I couldn’t help myself but read this thread. But I do so as an adult responsible for my own actions as are we all.
It has scared me. It did depress me but please don’t any of you think for one second that someone like me who’s a relative newbie and not living with secondaries would want any of you to hold back for fear of upsetting me. never, not at all.
And if it does upset me that’s OK, it’s upsetting stuff. Nowt wrong with that as my Nan would say.
I’m sure most people who’ve expressed how depressing the reality is don’t mean please keep it to yourself.
I find it amazing what a lot of you have to cope with, I only hope that if I ever do I find the strength that you ladies seem to have. Forgive me for saying I pray I never have to.
I promise you this though, I won’t duck the big issues when my sisters here need my support because it scary the wits out of me.
I tend to stay away from the secondaries thread because it feels like I’m prying, it’s why I haven’t joined bcpals either. Feels too much like I’d be gatecrashing but frankly I’m wasting too much time here already so that’s ok
Jakki,
Please continue to post your thoughts/fears/feelings as openly as you want…thats what these forums are for, when I was first dx 4 yrs ago and found this forum 3yrs ago…I avoided reading this forum…but as I learnt and educated myself more about BC…I knew what the furture could hold for me…and have since then read this forum and have been amazed at the strength and courage of everyone on here…I have not found it depressing…sometimes sad…but not depressing, I lost my friend to BC secondaries last year she was another amazing person, my aunt has bone secondaries dx 15yrs after original dx…I find some people don’t like me mentioning her secondary dx after 15yrs of being ’ clear '…because people don’t like to accept the fact that it is possible for that to happen.
Please Jakki and everyone continue to be as open as you need to be.
Hi to all
if there is anything that is going to depress us it is being told 'Sorry, there is little we can do for you now your cancer is terminal, we will try and manage the condition but sadly there is no cure"
That may or may not be word for word but we all know how we felt, to find a site like this with women in a similar position for me was and is a lifeline to receive ongoing help and advice from inspirational women like Dawn and Jane has been something I could not be without.
Hell I am even learning how to use a computer punctuation is still a problem but given time and lots more drugs I will get there. I can only say thank you to all who post on here.
We all shed a milloin tears when we lose a forum member, even the ones we have not always agreed with.
So as I said at Westminster to the union rep, loosen your knicker elastic, accept the help and advice form members it is free but worth a fortune.
Love to all Debsxxx
hope I have not made too many punctation mistakes etc.xxx
Hi Dawn I would really welcome the new secondaries forum being a ‘closed’ forum. BCC please take note. I’ve often read on other parts of this site that some find us too ‘scary’ or too ‘depressing’…well it now depresses me we have those same comments on the secondaries forum itself. Please allow us this one place to discuss, express ourselves. The forum can be blocked if anyone doesn’t want to read any mets threads or postings. Have to say since being diagnosed with mets in 2003 I have always found this particular forum the most supportive, caring and life affirming.
oh sorry I forgot SueBee it was a 6 mth check up May 2004 onc was going to tell me I was one of the lucky ones I asked why I felt tired and a bit funny he checked me found a lump at first he said it was most probably an age thing cheeky wippa snapper. The rest is forum history!
jakki - hope I am not one of the person who has upset you…i have just had alot of comments from people in my family who want something to blame my secondaries on, quizzing me etc for what I have done and not done, what my doctors have done or not done. This is probably an extreme version of what everyone gets…
jane - thinking of you tomorrow at Marsden - hope it gos well and not too stressful for you. Let us know when and if you can how you got on.
