How do you cope....on anniversary of diagnosis

hi,

Been a bit low lately and while part of it is due to my on going problems I’m sure part is to do with it being the anniversay of my diagnosis with primary bc and mets at the same time 9 years ago this august the 22nd. Then we have the anniversay of the surgery which is on the 1/9 again 9 years ago.

Something about this time just makes me feel so low, I’m grateful (immensley) to still be here, but its also the thoughts of what my life could have been like without the endless trips to oncology, then the testing and then the waiting for the results it just seems like its been never ending.

On top of that I have an oncology appointment this wednesday and judging by my latest round of tm’s a change in meds is coming. I know what I will be changing to but I just want to get on with it and get going (if you know what I mean) no more of this “well let’s see what next months results show”…Just do it is what I want to shout.

thanks people for letting me sound off, I thought if I feel like this at my anniversay time others must too.

kiwi

Kiwi, may I thank you for your posting, this is what these forums are about. To read of your 9 years is amazing and encouraging. I am around anniversary time too, I was told about my bone mets on 23 Aug 2006, three weeks after primary dx… never had breast surgery.

But I think I know about those anxieties re change in treatments, all it takes is a blip on scan results or tumour markers and off we go to jump another hurdle.

Will be thinking of you specially Wednesday, for good communication by/with your oncologist, and that the new treatment (if needed) will do a great job with minimal side effects.

Do keep us posted.

Lindsey.

Hi Kiwi, I had no idea you had your diagnosis 9 years ago…like you I was diagnosed stage 4 from the beginning, 2003. I live in the ‘now’…anything a week away well I’ll deal with it then. And like you I guess I’ve had markers taken from the beginning and at first only celebrated if markers were ‘good’…and then I’d only have a 4 week window as I was only ever as good as my last markers. After a long spell, nearly 3 years of Arimidex failed I decided I needed to enjoy what’s happening now, today, all my ‘security’ was suddenly taken away with Arimidex failing. I do the hospital visits, bloods etc then I forget about them as soon as I leave the building, I’ll deal with the results whan I get them, I no longer plan to waste my precious days worrying about them. It’s hard living with this uncertainty, I hope you have many more anniversaries and good treatment. Can understand you not wanting the ‘wait and see’ I jumped at chemo when Aromasin failed. Don’t know if any of this message makes sense but I now feel in control and not ‘ruled’ by my tumour markers. Good Luck with your next markers…I’m on my first chemo, Xeloda…it’s okay, not that scary…have you been offered Faslodex? I’m going to ask about Fas when I next need a change. (I can remember you starting Aromasin but not sure what your treatment is at the moment). Take Care!..x
Hi Mrs Blue, like you I have bone mets and have had no surgery…x

Hi Kiwi

Your 9 year survival with mets will be really encouraging for many people here but thats probably a fat lot of comfort to you.

I think anniversaries inevitably bring up those feelings of loss and grief for the life we might otherwise have had. Right now I’m nearly five years off my primary diagnosis and about 15 months from the regional recurrence diagnosis which slowly dawned on me was actually a sceondary diagnosis only no one calls it that. I am heartly sick of treatment…find it hard to live a ‘day at a time’ (don’t think we humans with memories and consciousness of time were built for that). My tumours are growing, I’ve done most of the available chemos, can’t do hormonals, and dread the thought of more treatment come September.

Yes of course I grab the good days and am pleased I still feel well but oh how I will never stop wishing I didn’t have b**** cancer.

best wishes

Jane

hi ,
i too dont look forward to anivesaries of start of treatments etc ,as im still recieving treatments ,im seeing oncologist on monday for liver mets ,then i will have yet another scan to check for changes ,i get so fed up of this having to wait each time to see whats next ! had a part time job before chemo really set in (i had to give up my carrear as couldnt manage ) well saw them today and they need to interview me next week as ive had lots of time out of work !!yes ive been ill not on holiday !!! grrr .so getting my job back there seems to be a no no .yet another part of my life that has changed since diognosis . somedays its hard to remember what i used to be ,never mind what i may become in the future thanks to this sh…ty desease .
lynn x

Thanks everyone,

Guess I knew we all have the same fears and thoughts when the anniversarys roll around, (for me that seems to be the worst time, cope reasonably well most of the time). Will let you know how my Wednesday appointment goes, if the tms are still creeping up will hopefully change. However they may want to do another ct scan to see if there has been a change in the liver mets. Just want the appointment over.

Belinda, currently on aromasin, think I started it about the same time as you and it looked hopeful briefly. As to Faslodex it is avaliable here in NZ but not subsidised by the government, however the onc didnt think it would be good for me as is similar to one of the other hormonals I have been on. It also costs 1000.00 NZ dollars not sure what that is in pounds.

kiwi

Hi again Kiwi, I had 3 months of ‘stable’ markers on Aromasin then a slow rise…only had 6 months in total with it. My onc changes treatments quite quickly…is very pro active. I hope Xeloda tablets might be one of the next options for you. I know someone with liver and bone mets who’s been taking Xeloda for four years…you can take breaks and go back on the treatment too…several friends have had xeloda breaks and the chemo has worked again and again. For me it hasn’t felt like a chemo at all…I’ve felt well and had energy throughout…I’m on the highest dose too. Good Luck for Wednesday…x

I’ve been on Xeloda constantly two years next month and it’s worked well for me. Like Belinda, it’s not felt like chemo like the other two types I’ve had before.

Good luck

Hi there Kiwi,

I am interested to read your post as I wrote recently on the subject of anniversaries. In one sense, I am thankful to have lived this long with secondaries (3 years and hope to emulate your fantastic 9) and on the other, I feel that the longer I have lived with secondaries, the less time there is likely to be left.

I had a day all to myself (very unusual when children are in the equation) when it was my recent anniversary and I went out on my own and had a lovely day and ended it walking about six miles round a nature reserve. It gave me some quality ‘me’ time to reflect that life was going on pretty much as normal. I felt the day was quite private and my chance to think quietly about the state of play. I will remember that day and hope to repeat it in the future.

I hope you are beginning to emerge from the depths now and wish you the very best with your appointment this week.

Jenny
x

Jenny

I think in another way the longer you live with secondaries the longer more you might live…particularly when you are responding to treatement and stable.

My particular scaredness is that I am using up my treatments at the rate of knots…and that when my cancer spreads that then it will all be quick…

I think 3 years, 9 years whatever deserves a bit of private contemplation/celebration or however we want to do it.

Jane x

Hi,
Seen onc, and yes the tumor markers are continuing to rise now 180, when I gasped at that he said, “that’s nothing, I have seen paitents with over 5000”. He showed me a graph of my markers and for some reason it looked even more scary seeing the lines just going up and up. Well the guts of things is that I am to have a ct scan within the next month (he has put urgent on it), and have been put down to see him again in a month as well. Have also been put on the list for xeloda and hopefully all appointments will come to fruition nicely. But as we all know things never go smoothly for us bc ladies. Am glad now that a plan is there it is starting to make me feel a bit more in control.

As to a celebration well my 50th birthday is 4 days after my operation anniversary so am planning to go away for the weekend, feel after all that has happened I deserve it.

kiwi

Hope all goes as planned Kiwi…if you do start Xeloda I really recommend the Udderley Smooth cream for your hands and feet…think lots of us here on Xeloda use it…I started using it as soon as I started on the tablets. Happy Birthday…the 50th birthday is the one I’m celebrating next year! Belinda…x