Secondary Breast Cancer

Initial Secondary Diagnosis

By dk

I was told I was incurable in Sept 06 and may live only 3 months to 2 years. They don't like to use the word 'terminal' as really you are only at that stage when you have run out of treatment options and your disease is still progressing. It is a term that the 'general public' understand and so I think that is why it is still used. Often the term 'advanced' or 'palliative' is used instead in medical circles. When we were applying for secondary schools in oct 07, my onc was very reluctant to use the word 'terminal' but said if he didn't the schools didn't take much notice.

At that time of secondary diagnosis, I had widespread lymph system involvement in all my lungs and was so breathless I couldn't make it up the stairs without several stops. I also couldn't lift my left leg due to a huge bony secondary in my left hip/pelvis plus another one at T5 in my spine and a small one in my liver and one in my armpit on the previously unaffected side so it looked grim. My children were 6 and 9 at the time and as there was so little help available to them, my onc referred me to the hospice which was a shock but the best thing he could have done. I got allocated a hospice nurse who could help us with the benefits/grants side of things and visits at home to discuss my psychological needs as well as my husband's, a social worker for the children and also the physio and OT for my mobility needs.

I started chemo and bone strengtheners straight away and by the 3rd dose was not breathless at all and could lift my left leg and walk normally.

I know when we were first told I had secondaries I couldn't sleep and wandered around crying and in a daze and all I could think of was leaving my children behind, my funeral and how my hubby would cope and spent a lot of time trying to work out ways of leaving memories for my children.

The junior and now secondary school have been really helpful and my children have had access to a counsellor there and to the emotional literacy support assistants (ELSAs)who they can see whenever they want to. Not all schools have ELSAs but it is worth finding out and getting help from them.

On the old BCC site, there was a section of useful publications for children - not sure where that is now? I know I did a podcast for them about it around Jan 08 and some more of it was broadcast a few months later as well.

Usually children know something is wrong and know when you are lying so it is putting it in a way that is understandable for your child and using words they understand but at the moment you have no idea how long you will live for (no-one does) despite what the oncs say and only you know whether it is right or wrong for your children to say you may not live to see them grow up or be vague and say your cancer has returned and you're having treatment for it now.

With all the media attention about Jade Goody, I'm sure they are aware of cancer and that it can kill so you may need to explain it in a different way and talk about that.

As far as I understand it, when you are diagnosed with secondaries you are entitled to the higher rates of Disablility Living Allowance (DLA) for personal care and mobility under the Special Rules DS1500. This sounds frightening as the form says you are not expected to live for more than 6 months but then says it will be reviewed after 3 years but it is not income related or taxable and you can claim it whether you are working or not. Claiming under the Special Rules means you don't have to fill out reams of paper asking you questions about what you can and can't do for yourself. You need a sympathetic GP or Onc to complete it for you and from memory it is just to confirm that you have a 'terminal' illness and you just fill out your name, address and what bank account you want it paid into. If you are working and getting child/working tax credits you need to tell them about getting DLA as it actually increases the money you get from them which surprised me.

Once you get the DLA, you can apply for a blue badge from your council.

There is so much to think about when you are given the news that you have secondaries especially if they are giving you such a poor prognosis but as you have read, many women were given a poor prognosis but are still well, or relatively well, quite a few years down the line. Until you start treatment for these secondaries how can anybody tell how your cancer is going to respond - often they respond well but for some of us, it doesn't. I've had an amazing 2 and nearly a half years since being told I'd got 3 months. Yet, I know others have died before me who were given much better prognosis than me - bc is so unpredictable.

I think it gives you a wake up call to get your affairs in order but everyone should do that anyway - think about the people killed in bomb blasts. They had no time to prepare anything so to a certain extent you need to be practical and make sure things like your will is drawn up but that is something we all should have done when we reached adulthood, but seldom do.

There are so many different places to go for advice and help but don't be afraid of using the hospice service - they do rehab and have excellent resources - often complementary therapies and counselling and can give advice about different charities that can help you do fun things as well as providing practical things like grants.

To go back to practicalities, then maybe discussing funeral arrangements isn't a negative thing to do but another of those things we should have tackled at reaching adulthood but never got round to.

Charities like Winston's Wish give advice, support and information about a whole range of things to do when a parent/adult has a serious illness - like memory boxes and there are 'memory' books which are sold through places like Amazon which are marketed as a social history tool rather than something to be filled in when you know you are ill.I actually quite enjoyed filling mine in as it brought back lots of childhood memories and surprised me by how much society has changed.

There is also advice about the 'hard and horrible' things like writing letters to loved ones but do things a step at a time and enjoy each day you have.

My advice to those of you who have just been diagnosed with secondaries would be to ensure you have support from family and friends for practical things like housework and childcare so if the chemo makes you feel bad you have assistance.

Make sure your partner feels included and has access to advice or somewhere where they can work out their feelings - mine has built a patio, redesigned the garden, rebuilt the morris minor as ways of coping and dealing with his anger.

Make sure your children are supported and the school knows what you feel is appropriate.

Do some practical things like your will cos we all should have done that regardless of illness.

Apply for benefits and grants.

Make use of charitable organisations

If you feel you want to speak to the hospice or MacMillan service you get a referral.

If working, you are covered under the Disability Discrimination Act so find out your rights.

Most importantly, make sure you get plenty of treats and do things you want to do. Put yourself first - women are not good at that especially mums.

Have plans for the future - I could only plan a month ahead and even that felt risky after secondary diagnosis but you need to have something to look forward to.

Sorry - have written an essay but this subject is close to my heart and you read very little about the practicalities and help around is often very scarce.