metastatic bone cancer - cancer as a chronic condition

Hi, I am struggling to come to terms with the fact that I have been diagnosed with metastatic bone cancer (March 2008) due to the fact that I feel so well and am fitter than most of my friends. I have a long history of breast cancer with initial diagnosis in 1994 in my late thirties (lumpectomy, radiotherapy followed by hormone therapy). Then seven years of being very well before a second primary diagnosis (mastectomy, further hormone therapy) and another seven years of living a full and apparently healthy life. Both primary cancers were low grade with no nodal involvement. Then the earth shattering diagnosis of metastatic spread! I am keeping very well at present on Zoladex, Letrazole and Bondronate and the only side effect so far has been a diagnosis of carpal tunnel syndrome thankfully rectified by surgery. I have never had IV chemotherapy and have always bounced back from surgery and so it is really difficult to get my head around the fact that I have a seriously life limiting condition. I appreciate that I am very lucky, for several reasons than others posting on this site but would appreciate hearing from others in a similar position and of ways in which they are coping.

Hi ShelleyAnn,

I think our situations are similar in terms of the length of time we have been living with cancer. I was dx in 1990, have had 3 primaries - all aggressive and large! 3 major operations, one recurrence in skin, another in neck, chest & collarbone (lymph nodes)… loads of radiotherapy & chemos… the list is endless. I suppose each incident was about 2 years apart. Then in 2002 I was dx with extensive bone mets - in skull, ribs & collarbone, all areas of spine, hips, femur. I sound a walking disaster don’t I LOL. But life goes on and I hope will for a long time to come, as I hope it will for you.

dawnhc
xxx

Hi ShelleyAnn

Its great that you have kept so well in between your primary cancers but what rotten luck to get it twice. I have a friend who has had it twice on one side and then a few weeks ago discovered she had another primary on the other side, some folk get more than there fair share eh.

I can understand how you are struggling with the secondary thing as i too was diagnosed with spread to my hip and spine in July this year (primary was in 2005 had WLE, chemo and rads, i’m 48 now). Apart from having a really sore hip which is much better now after radiotherapy, i feel pretty well. i am on the same treatment as you and coping with that fairly well apart from the inconvenience of the bondronat. Most days I can carry on as normal and put the cancer stuff to the back of my mind but other times the diagnosis really hits me when i realise that i may not live to a grand old age. I dont know about you but the thing that worries me most is if i get spread to my liver or lungs but i suppose there is no point in worrying too much about it cos if its gonna happen it will.

I dont have any great words of advice apart from making the most of every day now and spending time with the folk i really care about. I’m afraid any acquaintances who are too high maintenance have had the heave ho, selfish but necessary. If theres anything i fancy doing then i do it without swithering. Have just bought tickets for Take That concert next June with 2 friends so thats my goal at the moment to be well for that ha ha and planning a trip to New York for my 50th which is in Feb 2010.

I really hope you can come to terms with it soon but i dont think there is any quick fix, i still cry some days for no apparent reason and your right there is always someone worse of than us tho that is of little comfort at times. Please give me a buzz if you want to chat or if i can be off any help to you.

Best wishes…Trish

Hi ShelleyAnn

I’m in a similar position to you but less of a gap between primary and secondary dx (4.5 years). I have bone mets that were dx in April 2008 and have just come out the other side of chemo. This was partly my choice to have it but my main treatment is pretty much the same as yours. I am having dreadful problems with letrozole but that’s another story! I am also very fit, don’t suffer with any problems related to my mets (didn’t know I had them until a scan showed them up) and have low grade, no-node involvement primary - so I was also very shocked to hear I had developed mets.
I seem not to think of my secondaries as much as I thought of my primary. I worried every day for a year (until I had my 1st post-treatment mammo) and every day I thought of BC. I guess now I know it’s here to stay so there’s not much I can do other than live life to the full, have no regrets and, as trishg says, spend time with the ones you care for. I do think of the inevitability of an early death but hope and pray that I will have as many years to come as some of the ladies on here who really have given me hope. I don’t know what the future holds but I intend to make the most of them and also hope further developments in treatment for BC come along in the meantime, as they have done since my primary dx.
I guess we’re all in this boat together and sharing our problems and thoughts does help - I can’t (don’t) want to talk about my fears to the outside world as I don’t think anyone can understand unless they’ve been there or are there themselves.
Please feel free to keep in touch, it’s a tough thing to live with but we can all help each other.
Nicky x

Hi Trish and Dawnhc
Thanks for your good wishes - it really helps to know that you are not alone. Despite fantastic friends and family this is such an isolating condition. I think the fear of further spread is the big thing for me too - although I have to say that it is inspiring to see how many women on this forum seem to be coping so well with that situation too. I certainly agree with dispensing with anybody and anything which brings negativity and stress into your life (to the extent that this is possible!!). And to use the situation as a reason to go for things which bring happiness and satisfaction seems a good idea too.
Best wishes to you both
ShelleyAnn

Hi ShelleyAnn, I was diagnosed with bone mets from the very beginning in 2003. I feel very well and lead a completely normal life…it’s so hard to get your head round the diagnosis at first, I was in shock for months. I’m trying to put breast cancer on the back burner whilst I feel so well but of course it’s hard to do at times. Good Luck…Belinda…x

Hi Shirley
Hope you are recovering from surgery, at least you know what to expect this time round but I don’t suppose that helps much when you can’t do things. As you say, help is nice to begin with but then it wears a bit thin :wink: Hope the op was successful though. I expect it’s been nice to spend some time with your daughter, and presumably new baby? Even though the circumstances might not have been the best from your point of view.
I’m still getting palpitations every so often but not as much as before. I’m coming round to thinking it’s to do with the menopause and sudden drop in hormones. However I’m off Letrozole as it is listed as a side effect and have now started Arimidex so I will wait with baited breath, or more likely laboured breath if my heart’s playing up! I was at the hospital yesterday for ovary ablation planning and very intrusive it was with a young man drawing all over my nether regions to get the marks in the right place! I have 3 sessions next week and then I should be able to stop the Zoladex after my next one.
You’re very lucky to have an NHS homeopathic hospital nearby, I have used these remedies for ages but you have to be so careful when on chemo that I’ve held back a bit. I’m going to contact my local hospice as they offer various alternative therapies (for free!) as I feel I need to de stress quite a bit at the moment. My shoulders are very achey and if I hadn’t had so many scans I’d think there was a bigger problem. I work part time, between 2 to 3 days a week but can change this if I need to. However, as a contractor I don’t get paid when I don’t work so I’m trying to do as much as possible to catch up from the summer. I enjoy my work which is office based and they are a great bunch of people so it’s definitely helped to keep some sort of normality to my life. When I 1st got my secondary dx I thought there would be no point in working ever again but I’ve realised that’s a bit silly and I aim to be around for a long time yet. When I’m not working I like to go for walks near where we live, see friends, cook (when my youngest daughter lets me!), read, play on my brain training nintendo and generally enjoy life as much as possible. Unfortunately with these heart problems drinking is not featured very highly but I do love a glass of wine! I’m also dashing around sorting out Christmas but will have a nice relaxing Christmas Day at my parents and I think they will be very happy to have us all there this year as it’s all been a big shock to them. My Mum still can’t get her head around the treatment I’m having even though I explain that it’s the norm!
Anyway must dash as youngest needs the pc.
Speak soon
Nicky x

hi everyone
i too have secondaries in my bones. i had lumpectomy on left breast in feb, then a month later a mascetomy on the same breast because it was more aggresive than they thought. i had a ct scan not long after and they discovered the secondaries in my spine and rib cage. the breast clinic nurses told me, try not to worry as they have some patients with bone mets who are still around 20 years later, i am aware thats not always the case. but im like nicky and believe enjoy the moment, we dont want to be looking back with dread in a few years, thinking i shouldnt have worried, and enjoyed my days. so i take it one day at a time, and am grateful for each day, i can spend with family and friends, and for the moment i can live with the condition, because im also not suffering too much pain. hope those concerned with the diagnose, find they can accept it gradually, and feel at peace. take care x

Hi everydaymatters…I love to hear of others doing well many years later…even if it might not ever apply to me it’s still good to hear…I was told (by a doc in my onc’s team) patients with bone mets can live 14+ years and it’s not that unusual to do so either. Take Care…x

Everydaymatters and Belinda
Thanks for your positive posts, I was diagnosed with bone mets (hip, top of leg and spine) in May and tonight I’ve having my retirement (on ill health grounds) dinner.(14+years whow!) As you say Belinda it might not apply to me but it’s put in a good mood for tonight.

Sue

Have a good evening Sue…x