I was diagnosed with secondary in my spine in early March at the ripe old age of 38.
I am having such difficulty getting my life back into order - I was initally diagnosed with Primary breast cancer in June 07. I had really hoped I would get more time before it came back.
My lovely husband and fabulous boys are my strength (almost going to write back bone but that not appropriate in that the cancer is in my spine).
I have a CT scan on Monday to see if the Xeloda is working and I am terrified.
I love my life and feel so robbed by this stinking disease.
sorry for the rant but everyone around me is keeping the smiley happy face and I hate to burden my husband any more - he has so much to think about in the future.
MuddyXX
Hi Muddy…it’s early days for you…it’s such a shock for any one of us to get our heads round, give yourself some time, a break…how could you not feel down so soon after having to deal with your diagnosis? And you’re not ranting and even if you were there’d be no need to aplogise. Hoping you get some really good scan results…we are on the same chemo, I’ve been on it a year now and it’s working really well, I have bone mets. I do hope it’s working well for you too. x.x.x
Hi Muddy,
I am so sorry to hear your rotten news. No one wants to hear this sort of news yet that threat hangs over all our heads and we have to learn to live with it somehow. Sometimes I think it is easy for me to talk because I have quite a few years under my belt of living with this - 19 yrs since diagnosis, but am not sure about that really. Sometimes the more years you get the more you hope to get if that makes sense. But I too live with the burden that it can spread more any day. I have had extensive bone mets since 2002. I am fortunate in that it is stable and I dont need chemos because herceptin has worked for me, even though I have to be on it all the time. I hope as time goes on you will come to terms with it and find that often life does go on, quite reasonably at times.
Dawn
xx
Hi Muddy, I’m sorry you’re feeling down at the moment. Rant away, you’re in the right place to do that. I know what you mean by feeling so robbed by this stinking disease, I’ve been struggling lately too and I’ve had to completely re-think the things I had planned and re-adjust my expectations. It’s not always easy but there is so much support on these forums. It’s hard not to worry before scans and results but a friend of mine keeps saying to me “Don’t write the script”. I hope you find it’s working well for you.
Hi Muddy,
I am glad to see that you have had some support already from other people on the forums.
This is just to remind you that you can always contact our Helpline for support and they also have information on our other services for people with a diagnosis of secondary breast cancer.
The number is 0808 800 6000 and they are open 9.00- 5.00pm Monday to Friday and 9.00- 2.00pm on Saturdays.
Kindest regards
Janet (BCC facilitator)
Thanks for replies. i suppose i am fed up being told i can beat this - I know that is not the case. I am just praying for time to get my boys older (now 13 and 10) and I know I wont see them become men. That breaks my heart.
I am so anxious about the scan - what if the Xeloda isn’t working? Do I have other options. I am on Herceptin and have had Taxotere so I wonder if there are other things out there. It is so frightening looking at the future and knowing you won’t be there to share all the family times.
MuddyXX
Hi Muddy
I know what you mean about being constantly told you can ‘beat’ it. Those kind of comments always make me feel so sad and upset.
There are other chemo options if xeloda not working…vinorelbine for example.
Scans are so terrifying…thinking of you on Monday.
Jane
Hi Muddy,
hope everything is o.k. with the scan on Monday. Have they said anything about radio therapy I had it in 2 places in my spine last year it hurt like hell for about a week or so after I had had it done but then bending, walking, sitting everything really was pain free and still is. Mind you now I have said that I will most likely be in agony any time soon.
Are you on byphosphonates?
The ‘you can beat it’ remarks make me prickly, how I wish we could.
Love Debsxxx
Hi Muddy
similar story to you. diagnosed primaries in October 2006, secondaries in sternum and surrounding tissue in june 2008 and further spread to spine, a rib and a hip in jan 2009. i am 42 and have 3 boys aged 13,12 and 8. so i do know where you are coming from.
The only treatment i have had since jan(excuse lack of decent punctuation as writing this one handed lying down in bed).i.e. since diagnosis of spine etc mets is bisphosphonates - one called pamedronate. although technically this treatment is to strengthen bones, apparent side effects are it offers pain relief and it can slow progression of mets. oh, and i have radiotherapy but only for pain relief.
I cannot bear the thought of leaving my children…but i think my mind must be protecting me because if i start to think that way i make myself stop. it is too much to handle. and a lot of people on this site seem to live a while with bone mets…although this may not be representative.
these people who say you can beat it…who are they trying to kid. they cannot cope with the concept of death at all.
I do hope you get goodscan results on monday - let us know.
ena x
Hi Muddy
I know how frightening all of this is (as we all do) and it’s not surprising that you are feeling so low and worried. Scans always bring out the anxiety in us (well, the results do!) so really hoping that you get good results after the CT scan on Monday. Hope you are on bisphosphonates as well as these help strengthen the weakened areas. As to people’s comments about ‘beating it’, we all know how annoying that is but I suppose it’s down to ignorance. I was ignorant of all the ins and outs of secondaries until I got them last year and boy did I have to learn quickly. I get annoyed having to explain things so quite often say I’m fine when asked and I also stopped giving friends and family an update on my treatment during chemo last year because I got fed up giving health bulletins. It is still very early days for you in terms of getting your head round it and, like Ena, I daren’t open the floodgates about my 2 daughters as I’m not sure how I’d cope. I take each day as it comes and hope there are many more days to come for all of us.
Good luck and fingers crossed for Monday.
Nicky x
Hi all, thank you for your responses. It helps that you are all going through this stinking thing too.
I am on biophosphates - Bondronat(think that is spelling). When I was diagnosed I got a big shot of radiotherapy. I have to day I am in no pain but I know that could change in a heartbeat.
I am feeling a bit brighter today - I have to try to think of myself as living with cancer rather than dying from it!
Thanks again for taking the time and trouble to reply.
MuddyXX
Hi Muddy
As the others say it is very early days for you and there are ways of starting to deal with the ups and downs of this disease. You will certainly find in time that it is clear which of those around you are helpful and supportive - you can seek those out, and minimise contact with some of the others. Just hang on the fact that although you can not overcome the disease there are certainly ways to live with it and, in some cases this is for many years. Feel free to ‘rant’ on here at any time. Good luck on Monday and keep us posted.
ShelleyAnn
X
Hi all,
just to let you know I got the results of my CT scan. Am not sure exactly what they mean. Firstly the good news - no further spread and the spot on my back has not grown. In my innocence I had thought it might go away with the Xeloda but they explained that the damage is there so wont go.
I am happy with the result and thank you all for your responses - I know this is one scan but at least i feel the cancer is now undercontrol of drug for mean time.
MuddyXX
Hi just a short comment [I have spine & liver mets] my very upbeat consultant radiologist ‘nobody ever died of bone mets!’ its painful though! currently trying to get my morphine levels right x Jan
Hi Muddy, really pleased you had good scan results - I had pretty much the same sort of results last week, it really gives you a boost. Let’s hope the Xeloda keeps working for you for a long, long time.
Lesley xx
Hi Muddy, so sorry you are in this boat at all, but sounds like positive news on your scan, pleased for that. I was first diagnosed in March 07 at 39, and now have incurable regional reccurrance in chest and neck nodes which happened last October.
This sucks, but I am doing ok all things considered, I hope you are too and it keeps that way
Hugs
Nikki
Hi Muddy
Great news about the scan! It really gives you a boost to know that the chemo you are on is doing the job. My scans during and after chemo have showed the areas are still there but also getting stronger as the bisphos help mend them so this is hopefully happening as well with you. Enjoy the rest of the weekend with your family and try to put this horrible BC to the back of you head for a bit - so much easier said than done, I know.
Nicky x
Thanks for replies. I have had a good weekend - it is my 39th birthday and i’m trying to make the best of things - what else can we do?
MuddyXX
Wishing you a very happy birthday.
Love Debsxxx
Hi Muddy
Pleased to hear that your scan was good and showed that the xeloda was keeping things under control. And happy birthday - hope you’ve had a really lovely long weekend and that the sun has shone down on you.
Lots of love Kay