Lung mets nearly 3 yrs after original dx
Lung mets nearly 3 yrs after original dx Just wanted to ‘show my face’!
Some of you may remember me as StephK on the old Breast Cancer Care site, or just Steph on the ‘other’ site, I dont use this site so much now but I know many of you already and may be needing some pointers as I start treatment again for my 3 troublemaking nodules v soon.
I’m not dealing well with sympathy but have told everyone to feel free to swear on my behalf instead.
Hi Steph…I’m so sorry to see you posting here.
Good Luck with your treatment I hope it works so very well for you. Keep in touch this is a supportive place.
Hi Steph Yes, I remember you from the old board, sorry you have to find yourself in our company (but we are very nice!). We have so much knowledge of the subject of breast cancer between us, we could probably win Mastermind, so hope we may be able to answer your queries as and when need be.
Feel free to swear away, you’re right, sympathy is not always easy to take. Good luck with up and coming treatment.
Also sorry to see you here *Ã‚Â£%/^ disease. Good luck with the treatment. I’ve just finished chemo for liver and lungs mets - lungs are now back to normal.
Love Twinkle xoxo
Hi steph Hi Steph
I can remember your user name 5 starshiny… wasn’t it something to do with a football card of your sons?? i may be wrong…
Im also a newbie on the secondaries forum… also just been diagnosed with lung mets… its been less than 2 years from my primary diagnosis…
Ive had some lovely messages of support from the ladies on here… i’m sure they will all be along shortly to offer you some advice etc…
I’ll be starting treatment soon too… do you know what your onc has in mind for you?
Not sure what my onc has in store until appt on Monday, possibly taxotere although as I am symptom free she is going to try and be more gentle if possible, but at the same time working on eligiblility for Tykerb.
5starshiny was one of my sons most precious football cards so you remember right!
Thanks for the welcome x
… We still think about you Steph and still have the healing bear you bought.
I was diagnosed with bone mets 6 mths ago.
Hi Steph Hi Steph, I have been dealing with lung mets since Nov 05 and feel quite well. I have been on a chemo break since Aug 06 and was just told today still stable with no changes. I wish you the best!! Funnyface
Funnyface thats good to hear, hope you continue to be stable for a long time to come.
Hi all just wanted you all to know i have had lung mets since 2003 and had taxotare which seemed to do the trick as i have had no treatment since then and feel very well hope it works so well for those of you just starting it.
Hugs and kisses
Feeling like a Leper Hi Everyone
Im new to posting on the site but have looked at threads when I have been concerned and it has helped me a lot.
I was originally diagnosed in 1999 had Masc with no treatment. Unfortunately in Nov 06 was diagnosed again cancer in gland behind stermum.
Have just finished FEC chemo and have been started on Tamoxifen and Zometa.
What I want to know is why are we treated like lepers when cancer comes back. Even other BC suffers panic when they hear and sometimes finish you off already.
I feel that I am being as positive as I can with this dreadful disease and Im feeling very low when other people are so negative. Even my husband cant cope - he keeps saying “but I dont know if you are going to be here next year” - I just say Im determined to be.
Sorry Im going on but feeling a little low today. I keep telling everyone that there are many people who have been rediagnosed and are well and leading a normal life.
I’m sorry to hear you are feeling a bit low today - and yes I suppose we are kinda scary people. But I think the more we are up front with this disease and let people know we are getting on with life and yes, living with Breast Cancer - and I would put the emphasis on LIVING! - they will start to realise it isnt necessarily the end. If we hide because we are afraid of frightening people they will continue thinking that a death sentence is imminent.
I have been living with Breast Cancer now for 17 years and yes, I have had a number of new primaries, recurrences and secondaries but I want to SHOUT and tell the world I am still here. OK I am maybe one of the more fortunate ones but I believe there are quite a number of us out there. Why dont you hunt through these forums and print off some of the posts made by those who have been around the block a bit - stick them up round your house so your family see them!! And good luck to you with your treatment. It’s a bit trite to say none of us know who will be here next year but there is truth in it.
Hi Diane…I so agree with Dawn. You can live, really live with this blasted thing for ages and ages. I’m feeling LOADS better than when I was first diagnosed, stage 4, in 2003. Since Spring 2005 my cancer has not progressed at all.
I’ve never ruled out long remissions and many years ahead.
I think if my husband kept saying he didn’t know if I would be here next year it would seriously depress me. None of us know how long we have left but then again we never did. We have never had cast iron guarantees of making next month let alone next year.
Take little steps. One day at a time. Sometimes the only people who truly understand are those in the same boat. Love Belinda…xx
Chin up Girl ! Hi Diane
I too am new too the site but like you have looked at it many times to gain support and answers to things.
I was diagnosed with stage 4 cancer in 2003 and secondaries in my liver in 2005. Since then I have been on herceptin and no further sign of cancer!
I know its hard to stay positive at times like this and you may not always manage it but thats ok too.Some people do give you a wide birth when cancer comes back and people run out of ‘good’ things to say but you must keep doing your thing. Hold on to the fact there are heaps of women that live with cancer.
I have found it really useful to set goals for myself . It may seem hard to look at holidays and treats but this really kept me focused when I had doubts.Be kind to your self and make sure you consentrate on your needs whenever possible and leave others to think what they want!
Thinking of you xxxxxxxxx
I dont feel like a scary person either. Sometimes we have to enable people not to be scared of us, and that’s something I’m working on and havent had a problem with so far.
For me I’m the same today as I was before this secondaries dx, nothing else has changed. Showing my face and being normal (!?) is good. I dont know if I will be around this time next year either, none of us do, secondaries or not.
We are allowed time to worry over it but on the whole we can only look forward. Doing anything else isnt an option, I still want to live with, not die of - and intend to live like that until I run out of other options. If the treatment works that could be a long time.
I hope things get easier for you.
oh and I started Vinorelbine last Tuesday, taken orally - rescan in 3 months to see if the b*ggers have grown!
For Diane Hi Diane,
You ask why we are treated like lepers sometimes when cancer comes back. I think the answer is that poeple are scared…they are scared of cancer and all that scary word brings up, and they are scared of the anticipation of death which is so often associated with cancer.
I agree with steph that sometimes those of us with the cancer can help it be a bit easier for those who are scared for us.
For cancer is indeed scary and yes there are loads and loads of women living well with breast cancer for significant periods of time and others need to know this, but the flip side is that not everyone lives very long after a cancer diagnosis or re diagnosis. Those who love us are inevitably scared as your husband is…maybe right now you are not able to talk about his fears with him cause they are bringing you more down, but perhaps you could suggests he looks for some other support where he can voice them.
I was rediagnosed recently with a regional recurrence staged at stage 4 so yes I do feel a bit closer to my death, as I have done since my original not good diagnosis in Oct. 2003. For me there are three facets of living in this particular phase of uncertainty (I am starting chemo on Thursday and have relatively few treatments options left because my cancer is ‘triple negative’): 1) learning to manage the suffering I may face as a result of treatments and eventually if/when tretaments fail as my death approaches; b) helping those who love me to think about how they will live without me; 3)living as gloriously and well as I can with whatever time I have. as far as 3) is cocerned I know I am enormously privileged cause I’m middle aged and middle class and have sufficient time, money and lack of reponsibilties to do that in a way that many people with cancer can’t (my did a two nights impulse stay in a 5* hotel in sunny Spain last week help…but not everyone can do that).
I think living with cancer is more than taking it a day at a time though thats useful…its about planning, really planning what we want to do with the rest of our shortened lives, because for many of us shortened indeed they are. Its not a queston of ‘living with’ or ‘dying of’ but of integrating both living and dying into the same framework, where to speak of one is not to deny the other.
Sorry if I’ve hijaked this thread. These are thoughts in process.
People are negative because they don’t know what to do, what to think. They hear secondaries, advanced, metastatic, spread and don’t know what that means. Before my diagnosis (not having had a primary dx) I wouldn’t have known either. Better public awareness might help but in the meantime we each do our own little bit to explain to people what it means in terms of a medical dx but also how it impacts on our daily lifes. The best way to do that is to carry on with the life you want. It’s too difficult and unachieveable to try and be positive all the time, I’ve found going with the flow has helped me. We have so much to deal with without adding pressure to ourselves by trying to be positive all the time.
It sounds like your husband could do with some outside, impartial help. Most Oncology depts. have access to counselling services, your local hospice will have a family support service, Maggie’s centre etc can all help. There is no way I could bare someone saying ‘I don’t know if you’ll be here next year’ you are not in a position to try and support hubby, he needs a little help with that. I guess most of our partners think that at dx but most tend not to vocalise it. Talking is goods, being truthful is good but sometimes things can go a bit skew he needs an outside sounding board.
This is really difficult time for you but things do usually get easier. People see you’re not going to die tomorrow, they’ll see you trying to get on with it and they’ll take your lead and do that too.
Love Twinkle xoxo