Hi
My problem is not dramatic - I have not had a terminal diagnosis like some of you here.
However, I need advice on coping.
Short history. I am 42. Diagnosed with breast cancer in November 2006. Had WLE, chemo, rads. Finished treatment in July 2007. Am triple negative. In June 2008, diagnosed with secondary breast cancer in more or less one area - the breastbone. Have just finished 6 lots of Gemcitibine/cisplatin - 5 weeks ago. Had a scan 2 weeks ago and the results yesterday. The tumour has disappeared (not visible anyway) in the soft tissue near the breastbone but is still in the breastbone as was expected. It has, however, shrunk a lot and the oncologists are pleased with my response to chemo.
So, I asked “what next”? Wait and See, the oncologist said. She felt the tumour would ‘hold’ for a while but could not say how long it would be before it starts to grow again or break off to other organs. When pressed, she said perhaps a year.
As I am triple neg. there are no other treatment options available. They don’t want to give me rads as over area where I had the original rads last year.
Anyway - I need advice on how to live with this ticking timebomb. Last year, after my initial breast cancer was treated the oncologists implied, even said, I was cured. So it felt relatively easy to move on although I worried a little about it coming back. It is different this time, though - it will come back. I find chemo so difficult - it totally wipes me out and my parents virtually moved in for 5 months to look after my children who are 8, 11 and 13. My children and husband obviously hate me being so unwell on the chemo and I hate the idea of putting them through that again - I’m not too keen either ! But it seems I have little choice .
How do you all cope with knowing the cancer is there and at some point will grow back…?
Ena x
There are alot of messages on “anyone in my position” thread about coping with Stage 4 cancer, its really hard living with this uncertainty …particularly with children your children’s age. My own son is 13. Its totally true that chemo wipes you out, no dount about that. Perhaps you can search on the triple negative thread there has been lots of discussion on that…
Are you on zometa or pamodronate for your bones? These are really important and will help alot. They are pretty much standard practice, but it seems like there are occasional lapses from that and the doctors forget it.
Take care.
Cathyx
Hi Ena,
I think that as time goes by it get easier to live with the not knowing.
I have small children like yourself so I try and most of every day.
You are still getting over chemo so be gentle on yourself.
Do you have anyone to talk to like a counselor it can make a big difference.
Regards
bikinggirl
Hi there
thanks Cathy and bikinggirl for your comments. No, I am not on any bone strengthing drugs - my onc. says side effects will outweigh the benefits as the cancer is only in one bone. ?? In what way will they help…just strengthing? or pain relief? or fighting the cancer itself?
Perhaps a counsellor will help. Today I feel much better and more positive - am trying to keep busy because that does help and my husband is a bit upset about it all at the moment, so I am trying extra hard to be positive and keep his spirits up!
Take care,
Ena x
Hi Ena
I am posting the link to our factsheet on bisphosphonates which you may find helpful to read. In addition, if you feel it would help to speak to someone in confidence about how you are feeling at the moment please call our helpline as the specialist nurses will be happy to speak to you and can offer you further support and information. The helpline number is 0808 800 6000 and it’s open 9am-2pm Saturdays and weekdays 9am-5pm.
breastcancercare.org.uk/docs/bisphosphonates__mar_08_0.pdf
Best wishes
Lucy
hi Ena
I was just typing this and Lucy’s comments appeared. I am on IV zometa which is one of the stronger and I can tell you side effects are non existent after the first infusion. It fights the cancer and protects the bones…I would really recommend you follow this up.
Take
care
Cathy
Unfortunately we are all living with that ticking bomb, never really knowing when the cancer is likely to spread etc. I have secondaries in my liver and lungs with 2 small girls aged 9 and 6 that are my inspiration for waking up in the morning and making everyday count.
I am also triple negative, yes it is true that triple negative can only get chemo on the NHS, however the more expensive drugs that NICE won’t approve such as Avastin, Erbitux and Sutent along with many others are not all chemos they stop the blood supply to the tumour (I’m not sure about Erbitux - whether it’s a chemo or not).
My point is stay positive and remember that your oncologist is telly you what the only treatment that is available on the NHS but it is not the only treatment available by a long shot.
Diane
xx