Hello ladies,
I hope you are all doing well. I had previously posted under ‘waiting test results’ following MRI for arm/rib pain, then PET/CT scan. Arm etc showed to be scar tissue/nerve damage from surgery in 06 (had lumpectomy, then ax.clearance/FEC/rads/Tamoxifen/ovaries removed - BRCA2/Arimidex now). Hotspot area on hip showed up unexpectedly & I had further MRI of this and panic set in, but everyone thought it would be arthritis - just turned 40 now but thought might be wear & tear due to lack of ostreogen (plus am overweight).
Anyhow, results yesterday - it is small area of cancer on hip bone!! Totally shocked. Know I am lucky it is only small and has been picked up, but still shocked and don’t know what this really means?!
I will have four weekly drip - bone strenghtening drug beginning with P? Then review/further scan/tablet instead of drip eventually.
I know most of you are dealing with much more than this, but I feel alone and my sister has recently died of cancer, and someone else I know. I don’t know anyone with this and I don’t know what it means for the future? Can anyone help?
Sue
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Hi Sue,
‘welcome’ doesn’t seem quite the right word when someone joins the secondary forum! Just sorry to hear that the ‘hot spot’ was bone mets. We chatted quite a bit on your waiting for results thread. I said there that I have quite a bit of experience with bone mets. Original dx 18 years ago but bone mets in 2002. Even at the outset it was very extensive and I was put on to Pamidronate, like you. It has done very well for me these past 6 years. It is good that they have checked this out so promptly at an early stage. When are you next at the Marsden. I will be there this Monday for a MUGA scan (heart one cos I am on herceptin) then my regular treatment days are 3-weekly. The next one will be on the 16th - a Tuesday. If we have dates that coincide we can perhaps meet up :). On the other bc site - bcpals.org.uk we have a forum for the Sutton Marsden so that members can post their dates and arrange to meet up that way. Keep in touch 
dawnhc
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Hi Dawn,
It is so wonderful to hear how well you are doing!! Thanks for all your support! My appointments for the bone drug are on Fridays, but I sometimes have to go up there for other things, so I will bear in mind what you say as would be lovely to meet up! I will definitely keep in touch - and will try the other website too. Thanks again and take care of yourself too.
Sue H
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Hi Sue,
welcome to the club no one wants to join (as we all seem to say!)
I have bone and liver mets diagnosed 4 and a bit years ago. I didnt have any treatment at first for the bones just my liver, onc was convinced I would not last long enough to suffer any bone pain. As I have out lived this theory I am now on Pamidronate, Had it yesterday bones a bit achy today but all in all not a big problem just have to accept I cant do back flips anymore!
As you can tell by my user name I am in Cornwall so have not met up with any of the ladies yet but I have truly enjoyed cyber contact.
Take care good luck with your treatment.
Love Debsxxx
Hi Sue…I’m sorry you have to join us…what a shock for you and I’m so sorry to hear about your sister. This is a very supportive forum, please post when you need to, someone will always be here to offer help and support.
I hope my story will help, a little, I was dignosed stage 4, bone mets, from the very beginning in 2003. I was in my early 40’s.
I had pamidronate for a few years before changing to a tablet form. I have no pains, need no pain killers at all and it’s hard for me to believe I’m stage 4 at times. There are lots of good treatment options out there for bone mets…Take Care, Belinda…xx
Sorry to hear your news especially about your sister and your friend. It must be very frightening for you.
I would take heart from the good news that Belinda and Dawn give you.
My first bony met was also in my hip and I’m in my 40s too. I have a different bone strengthener called zometa or zaledronic acid. I’ve been on it since sept 06 and had no problems with it. I never feel fluey or have achey bones after the infusion but some women do - we are all so different.
I have needed some radiotherapy to my hip which helped tremendously with the pain and gave me my mobility back but you don’t sound as if pain is a problem there so hopefully the pamidronate will halt it in its tracks.
Everyone here is so supportive and it doesn’t matter what we are dealing with individually and whether you consider us to be in a ‘worse position’ than you, if you need support, questions answered or a good old moan, then just post and we’ll try and support you.
Hope you manage to meet Dawn - she’s such a star.
Kate
Hi Ladies,
I can’t thank you all enough for your replies and support - it is lovely to hear that you are all doing so well. I have been surrounded with such a lot of bad news lately, I had forgotten how much hope there is out there! It’s so easy to focus on the negatives when you feel low and frightened, but you have really helped me sort my head out, and have made me feel truly welcome to ‘the club nobody wants to join!’ (How true, but now i’m here I’m glad to meet you all, electronically(!), - and will definitely stay in touch).
I was worried about going back to where I used to have the chemo - for the bone treatment - but I need to get over that and get on with it - 90 minutes sounds a long time but I have a great book, so will take that along. I live in Epsom by the way, and am treated at Sutton Marsden. Oh well, I am off now - to cook burnt offerings (otherwise known as Sunday dinner!) for hubby and offspring!! Take care you all - hope to chat again soon!!
Sue
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Hi Girls
I’m a newbie too, secondaries in liver diagnosed in April. Just finished Taxotere x 6 and would like to chat/meet similar ladies.
So by default I’ve enrolled into “the club” and would like some support/friendship, and offer whatever I can. Just don’t know where to get information from. What entitlements are there for ladies in our situations? If any.
Thanx
Paula.
Hi Sue and Paula
Paula - I’m sure you will have some great advice for ladies with secondaries in the liver - there are also some good threads to read either current or archive that may help as well. This forum has helped me so much since being dx with bone mets in April of this year but I don’t have any advice specifically about liver mets or entitlements etc - only what I’ve learnt from on here. I hope you get some good advice and support when the site gets more active during the day.
Sue - Snap - I was dx with an area on my hip in April this year plus a suspected area on my spine which may or may not be bone mets and also a new lump near my original scar from WLE. I am being treated with chemo to shrink the lump and help shrink the bone mets and I also get Pamidronate at the same time as my chemo. Apart from having to deal with chemo and it’s after effects the hospital visit is fine and reading a book is a good way to pass the time as you’re not ‘interfered’ with once it’s all set up. I haven’t had Pamidronate on it’s own yet so don’t know what symptoms I’ll get but I’m due my last chemo this week so will go onto 4 weekly infusions after that. I’m in my 40’s so need to be post menopausal to go onto Femara after chemo has finished and hope the chemo has finished my ovaries off! I had scans half way through chemo which showed good results and expect to be scanned again when I finish. I have not been in any pain at all with the mets and hope it stays that way for a long time. I have gained so much support, advice, inspiration and hope from this site and I’m sure you will as well. Is does help to know you’re not the only one! Take care, hope treatment goes well and feel free to ask any questions.
Nicky xx
Hi Nicky
Your right, there is some good info and advice in the archives. But there is so much to read through to get at it, but I will persevere.
Thanks. Not sure how much time I will have on the comp today as I still have one child off school and at the Marsden tomorrow for results
of scan etc. Hoping to have abit more time to myself now kids back at school to digest what’s going on, as having chemo takes over your life.
Paula.x
Hi Paula…do you know about DLA (Disability Living Allowance). This is a non means tested benefit you should be entitled to…ask your GP or MacMillan nurse for help filling in the forms.
Jane
Hi Revenue and Paula,
I notice you are both in the Surrey area. We are trying to meet up regularly with other secondary ladies here and on bcpals. The meets are at my place near Lingfield in Surrey and there is a thread about those meets which all with secondaries are welcome to join in. It is always difficult to find dates when many are free because of our various treatments but please be aware that you will be very welcome.
dawnhc
Hey Revunue, what do you think? Sounds like a fab opportunity to meet some others nearby who share the same rocky boat as us!
Thankyou you Dawnhc/JaneRA, for your info, I would like to chat about DLA a bit more, due to the results that I got today at the Marsden. Should I go on to bcpals for that?
Paula.x
I can’t believe it - 2 nights ago I sat and wrote a message to you all, and then today realise it’s not there!! Something is definitely wrong with my little grey cells - i must have deleted it by mistake instead of posting it somehow!! I wanted to say Hi to Paula - fellow newbie like myself - i would like to meet up once kids back at school - I hope you are feeling ok, I know how horrible it is waiting for results, and then worse still if the news isn’t what you are hoping for. It really helps to talk albeit electronically, but i’d like to meet and support other ladies too.
Nicky; Congrats on finishing chemo this week - i bet you are relieved!! Hope you are planning a little celebration. Thanks for your advice - i thought I was coping fine (only found out 6 days ago), but read Cancer Reasearch page just now on Secondary Breast Cancer and it was very negative and has made me feel very frightened and tearful! I don’t think I can cope with too much info at the moment (unless it’s positive!!). Anyway, glad you are doing so well Nicky, and long may it continue!! Lindsey - MP3 player is a good idea - i can borrow my sons, but will have to ask him to download some alternative music (don’t feel like listening to Snoopdog or Eminem!!). I will look into ‘whisperback’ - not done this before, but struggling at the moment finding time to come on to the website. I feel it’s important - if I can’t make time for myself now - then when can i? And yet, the practicalities of day to day life still go on don’t they? I was between jobs and had filled in an application form for a part-time local job when I got this news. My hip is tender but that’s all, but the Menopause side effects from Oopherectomy and the Arimidex (started 2 months ago) side effects are awful at the moment, and I have completely lost my confidence. I have read on another thread that so many of the ladies with secondaries are working full time and I can’t believe it. I think they are amazing, but I feel such a failure admitting this; i’m not sure that I can cope with work at the moment! Maybe part-time would be ok, or is it just early days because I am still in shock! I just can’t decide what to do at the moment, and feel really uncertain about everything.
Dawn; thanks for the info about the meet-ups - am definitely going to look into this once I get my head sorted a bit more. I am off to pay bills, sort out school uniform etc., but hope you all have a good day and will try to get back on here later. Best wishes to you all.
Sue
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Hi Sue, good to hear from you.
Some sites on secondary bc are too much info, BCC have produced a DVD which I think is good, tho probably you need a few weeks to adjust to the new situation. (I needed a few months! )
As you may know, a new website (+ forums) will be launched later this month so I suggest we wait and see how the private message system works on the new forum.
Meanwhile will be thinking of you - is your pamidronate 3- or 4-weekly? - and maybe will see you at the Marsden or a “meet” one day.
Hi Sue
You bet you’re still in shock! Once I found out I took time off my part time job and only went back when I felt I could face it, this was after I knew what my treatment plan would be. I’ve been back on even more reduced hours during my ‘good’ weeks on chemo and it has helped keep my mind off things. I think a lot of the ladies on here are further on in the scheme of things than us so are coping with less invasive treatment which enables them to work full time - well I hope that’s the story or I’ll feel such a wuss 
My chemo keeps me off for quite a few days but once I’m through the next 21 days I hope to go back more permanently - but still part time so I get some ME time.
I know what you mean about some websites bringing you down with facts, I steer well clear of those these days. `There are some very uplifting and positive stories on here, but again some that may get you down - I focus on the positive ones! These include ladies who have good results on Pamidronate.
Now I’ve finished chemo - hooray - I am due scans in 3 weeks to see the state of play, had very good ones half way through, and will then move onto letrozole (Tamoxifen gave up on me!). I’ll be worried about results, as we all are, but at least I’ll be more closely monitored for change than after my primary dx in 2003.
Please look after yourself and at least know that things were picked up very early and you’ve got a plan in place already, plus you’ll now be checked regularly.
Take care
Nicky x
Hi Lindsey - I will look into the DVD a bit later as you suggest. My Pamidronate is 4 weekly on a Friday - had first one today - all ok - and feeling no side effects as yet. Definitely limiting myself to what I read at the moment - not that I want to delude myself, but just not up to scaring myself anymore than i already have. It’s bad enough that my husband is falling apart now. He seemed really calm for the first few days, but since yesterday he hasn’t stopped crying!! I feel exhausted and so sorry for putting him through this. i have tried to cheer him up and reassure him how early this has been caught and how well it can be controlled etc., but he really isn’t coping at present. Still - early days I know. I will keep in touch (definitely try to meet up soon if possible), take care of yourself.
Nicky; I agree about the websites - especially at the moment, i’m gonna stay away from too much info at the moment. I guess the work issue is such a personal one depending on how you are feeling physically/emotionally and financial needs etc. I think I will give myself a few more weeks and then look for another job - not sure how much to tell them yet though!! I do think too much time on your hands isn’t always a good thing - time to dwell on everything!! On the other hand, i would prefer part-time work and still have some ‘me’ time ideally - although hubby has less work now due to credit crunch so I may not be lucky enough to have the choice - will have to wait and see! So glad you have finished your chemo - what a huge relief!! I hope you will feel better and better now - i know it takes a while after chemo. I found after I finished, that it was 3 weeks later when I would have been going back for more treatment and suddenly thought ‘I don’t have to go back today - I really have finished’ - that’s when it sank in! Like you, i feel glad that we are closely monitored, but I still don’t like the results bit - I feel vulnerable every time, but it’s not like we have a choice. Keep in touch and congratulations!!
Sue
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Hi Paula & Lindsey - we were talking about meeting up and Dawn had said about their meets for ladies with secondaries - just seen her thread under ‘Secondaries’ about a possible meet next week and wondered if you have read it?
Dawn; I’m just looking up where Lingfield is and how I could get there - if it is still ok to come along. I will reply on your other thread. Thanks.
Sue
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Hi again Sue
I’ve been to a previous meet and can thoroughly recommend the venue! Unfortunately I have too much happening in the next 2 weeks (including bone scan and onc appointment) to get to this one, also I don’t drive so it’s not easy to get there (husband would take me there if at weekend). Maybe another time - it will be good to put faces to names.
Lindsey.
Oops Sue, sorry I forgot to mention, pamidronate doesn’t seem to cause many side effects, and I hope you do well on it. Plenty of time to drink that cup of tea while the drip is going in!