I was diagnosed primary in August 09. Had mastectomy and recon in Oct 09 followed by 2 x FEC before Xmas. Had catalogue of disasters ending up in hospital with horrendous side effects. They decided to give me a break for five weeks so put me on Radio. Had 3 week break after Radio and was to start chemo 10th March but my bloods werent good enough. Started Tax the following week and 2 days later was rushed into hospital in agony where I stayed for 9 days.
during that time they found liver mets. Just 3 small lesions and thats it. Brain and bone scans and chest scan clear.
I am very positive but I have 3 very young children and am worried sick about the time i have left.
The Macmillan service seem to have gone into overdrive with me saying i should make memory boxes and have referred me to the palliative nurse etc etc etc they are making me feel like i have little time left yet my Onc was very positive and emphasised the fact the mets are very few and very small.
Is it cos my chemos are always a disaster and the fact its returned during treatment that they are reacting this way? Like i say my Onc is very positive that we can beat this and keep it under control but the macmillan nurses are scaring me.
Hi Signet,
I’m really sorry to hear about your secondary dx. Please don’t feel pressured into accepting help or suggestions which you don’t feel are helpful at this moment in time. When you’re ready to talk about memory boxes you’ll be able to ask.
I too have liver mets, along with lung and bone mets. I also have two children (8 & 9). I have done some “preparations”, simply because that’s the sort of person I am. Not because anyone suggested I should and I only ever tackle things like that when I know my head is in the right place to deal with it.
My onc is also positive about the managability of the situation and I trust his judgement. My last treatement (Arimidex/Zoladex) failed miserably and I’m now back on chemo. I had Taxol the last few months of last year, a three month try with the AI’s and am now back on chemo (Adriamycin).
Unforutnately we are all different and respond to the various treatments differently. What works for one won’t work for another. For the time, let your onc guide you. When you’re ready to ask more detailed questions about treatments then do so.
You’ve got an awful lot on your plate to deal with and I firmly believe that there’s no point pushing ourselves into a corner trying to “fit” into how others things we should deal with this. We each have to do it our own way and find what suits us and our families the best.
Best wishes and I hope you find a treatment that suits you and does a good job soon.
Bad Fairy x
Signet I am so sorry to hear your news and even sorrier that the Macmillan nurses are scaring you even more than you already are.
Remember the are telling you options and if you feel they don’t apply to you just ignore them.
Maybe see you at our next Edinburgh meet on 18th?
Love n hugs
Dot
Hi Signet
Being diagnosed with secondaries is scary enough, without nurses etc making you feel you don’t have long left! The good thing is your oncologist is very positive and that’s who you really need to help you. I expect the MacMillan nurses were just advising you of ways to cope etc but if these things aren’t relevant or you don’t want to do them then you don’t need to. Concentrate on getting your next treatment plan sorted and let’s hope it’s a kinder chemo as you certainly seem to have had a bad time with the others.
Take care
Nicky xx
Hi Signet,
I remember the blind panic that gripped me when I was diagnosed with secondaries in my liver, brain, bones and lungs last summer and I was almost unable to function with fear. My chemo (docetaxetere) did work, I had FEC after my primary diagnosis, but more importantly the letrazole tablets i take now post chemo are also continuing to shrink the tumours. I suppose what I am trying to say is that if you are unable to tolerate one chemo there are many more options with less severe side effects that can be tried. The impression I got from my onc is that chemo can gets results very quickly but other treatments can be just as effective long term. It took me months before I could see a furure - at first I could plan what I wanted to do for Christmas, now I’m planning where I want to go on holiday next year. Its hard and very frightening but just take the support that helps you, there are loads of ladies on the forums who have lived fairly normal lives for years with secondaries - have a look at the ‘anyone else with liver secondareis?’ thread.
Enjoy the holiday weekend
Louise
Hi Signet
It is a really difficult and worrying time when you are first diagnosed with secondaries. I was diagnosed in January with lung mets and some chest lymph node involvement. My cancer returned not long after treatment had finished and the oncologist was very surprised at how aggressive it was. When the Macmillan nurse came round to see me I spent most of the time crying because it all became very real. However I have found her very supportive and reassuring. I am the sort of person that needs to sort things out so welcomed any suggestions from her. I hope that you are able to build a good relationship up with your nurse/nurses eventually but as has been said previously you should do things in your own time, when you feel able to. Many people with secondaries live for many years after diagnosis. I am taking each day as it comes- some days are better than others. I have also got events pencilled in for the next year that I want to be here for.
I have been on Carboplatin since January which (following a recent scan) has shown some improvement. I have had my chemo cancelled over the last two weeks because I came down with shingles and then a chest infection. I have just been given the go-ahead for next Tuesday so am quite relieved.
I hope that you have a good support network around you- this site is really good.
With love
Jennie xx
i am so sorry to read about your secondary diagnosis, i was diagnosed in june 2007 age 36 with idc , i had the works, finished herceptin in may 2009 and was doing great no evidence of disease, then dec 09 , i was diagnosed with liver mets 3 tumors i was just gutted and terified about my future i have 2 children aged 10 & 6 and a lovely husband we were all in shock, i am back on chemo and herceptin and taking 1 day at a time and feel a lot calmer now , i havent had any contact with mcmillan, i try and live life day to day but we are all different and we all have different needs, just take 1 day at a time and be kind to yourself , listen to your body and dont feel you always have to do what you are told !!!
love galen xxx
Signet
I’m sorry to hear of your secondary diagnosis. I had a recurrance in my lymph nodes exactly 3 weeks after I finished chemo, 2 days into rads, so I know how scary it all is.
I wonder if you have the same McMillan Nurses as my friend does? They’ve been scaring the life out of her since her bowel cancer diagnosis at the end of 2009! I thought they were supposed to make life easier & less stressful?
Maybe you’re going to have to be honest & tell them it’s all too much just now!
I hope you find the support from the ladies on here reassuring & if you feel up to it it would be lovely to see you at our next get together in Edinburgh.
H xx
Thanks Hayz i must try to make it to a meet up xx
Maybe they are same nurses lol - they need shot!!! I thought they were the ones to instill us with confidence.
Hi and I’m so sorry to hear you’ve been diagnosed with secondaries.
I’ve been living with secondaries since 2003. I saw a Macmillan nurse just after my diagnosis and haven’t bothered to see one since then. I know, have met, many with liver and various mets who are living well and have done so for many years. You will, it just takes a little time at first, find your own way of going forward and living with secondaries. Take Care…x.x.x
Belinda thank you so much. I am having a very emotional time just now and you just made it so much better. Thank you so much from the bottom of my heart. I feel so positive and i have little ones to stay around for and i dont feel i am ready to give it all up. People like you make me feel so much better x its such a horrible thing to think about but hearing from fighters like you make it feel more acheivable.
signet sorry your nurses arent being very helpful
im not sure if your being treated at the WGH but if you are ask to speak to the BCN for secondaries because she is fantastic… she will listen to you to see what your concerns are and not just jump to conclusions or discuss things your not ready for yet, iv never heard a bad word said about her.
i think from memory you are a nurse yoruself and i think that can sometimes make things more difficult too as we always see the more negative side of ill health and treatment.
we would love to see you at our next meetup on the 18th come along and offload with us.
Lulu x
Oh Signet, whatever happened between 23.00pm and 1.00am today?
Your positive words to Belinda have been replaced with such sadness that you haven’t felt heard here on the forum.
It sounds like you are in a very frightening place with your dx and nurses’ interventions and all you want to do is focus on your little ones. It must be such a confusing time for you. I can’t begin to imagine your turmoil!
Please let others help you when you are ready.
I hope you can find the best route for you and your family. I think many on your thread really understand your plight and want to be there for you. They are hearing you and want to help you offload.
Take strength from them and follow your star.
Welsh girl xx
Hi again Lynn, in the past I’ve found this a comforting read. Other women with secondaries living well…xx
bcna.org.au/images/stories/pdf/messages_advanced_cancer.pdf
Hi Belinda
Just wanted to say thanks for posting this link- it is really comforting that there are other women who are living with secondaries and living well.
I do hope that Signet reads these posts and the ones in response to her Goodbye thread. I send much love to Signet.
Jennie xx
Belinda,
Thanks a lot for that link. I’ve had a quick look and will read properly later but it seems to echo my feelings and provide inspiration and hope.
Liz x
Hi Ladies! Yes I do love reading that online link…I return to it often. xx