Hello Everyone, I’m 41, married and have two kids (6 and 10). On 12th March I was diagnosed with primary breast cancer and on 17th March (our 19th Wedding Anniversary!) I was given the diagnosis of secondaries in my liver and with a suspicious area on my spine! I have read some of the posts and mostly people are dealing with the primary itself or the secondary after having already known about the primary for some time. I understand there is only about 5% in my situation with diagnosis of both at the same time. When I talk to friends they presume it will be dealt with like a primary and keep asking when I am having surgery and it’s impossible to explain that I am much further down the road than that. Is there anyone else here in the same situation? Also its been suggested that I apply for DLA, but the forms are so confusing. Having read other posts in other forums a Macmillan Welfare Rights Adviser would seem the best person to contact. There is one in a town near here so I will give her a call later. I have already started targeted therapy and chemotherapy. Bye for now.
Hi snoogle
Welcome to the BCC forums, this link will take you to further information and support available for anyone diagnosed with secondary breast cancer, which you may find helpful:
breastcancercare.org.uk/server/show/nav.714
Our helpline is open weekdays 9-5 and Sat 9-2 on 0808 800 6000 if you have further queries or need a ‘listening ear’ at any time.
Best wishes
Lucy
Hi Snoogle,
welcome to the club none of want to be in. We are a friendly bunch and the information advice and help is priceless. Well it has been for me.
Yes secondaries are a whole different ball game!
I have liver and bone and ‘mental fil’ mets. I have just done 15 tax and I am having a chemo break for a while, until my little uggers get out of control. It will be 5 years in May since my secs were diagnosed so you will have to get used to answering lots of daft questions by friends. Some of the people we told I was terminal ill give me strange looks like ‘well it can’t be that bad she’s still here’ best one ‘she’s not on strong chemo she still has her hair’ We just laugh at their ignorance and get on with life.If you feel like being frivolous we have the ‘gormless’ thread. It will lift you on a bad day, and may explain why you suddenly develop the urge to spurge.
Take care and speak soon.
Love Debsxxx
Hi snoogle
So sorry to read about your diagnosis. There are quite a few women who use these forums who, like you, were diagnosed with Stage 4 from the beginning. There are some good news stories amongst them too…of people whose secondaries have been managed for several years.
I had three and a half years between primary and mets diagnosis…I think getting both at the same time must be so so hard…and your friends will be in shock too…hence their lack of comprehnsion.
There is fantastic support on these boards.
very best wishes
Jane
Hi Snoogle
Sorry you have had to join us. You are not alone, there are several people on this site who have jumped straight to the secondaries forum. I am 46, with a 9 year old son, and was diagnosed with primary BC in June last year and mets in my liver were confirmed in September, after 2 CT scans, ultrasound and a biopsy! A couple of threads that might help you are:
breastcancercare.org.uk/forum/viewtopic.php?f=10&t=20743
and
breastcancercare.org.uk/forum/viewtopic.php?f=10&t=20880
Ask all the questions you want - there is usually someone here who can help you.
Fiona
Hi Snoogle and welcome, though I am so sorry that you are joining us.
I am 49 and my children are 7 & 9. I was diagnosed with BC and liver mets at the same time, nearly 4 years ago. Though I have been on one treatment or another ever since, I am generally well and my life has carried on pretty much as before. Cancer has become a way of life (but NOT my life by any means). I realise that this will not continue indefinitely but for now, life is still very good.
You are very likely to qualify for DLA and the forms are not that tricky to fill in. You have to apply under the special rules which imply that you have a life expectancy of 6 months. Many of us have been receiving it for years, so do not let that put you off. By all means, get a mac nurse or someone similar to help you with it. There is one form (as I recall) which needs signing by a GP or similar.
Personally, I think the 5% figure of those diagnosed Stage IV from the start, to be out of date. I know many others in this situation and whenever I have met ladies with mets, there are usually quite a few of us who fall into that bracket. I met two ladies when I went for chemo last week, both had liver mets from the start. So there you go, we are all over the place. (So to speak!)
Jenny
x
Hi Snoogle
Sorry you’ve had to join us but welcome. My mets were dx couple of weeks after primary, but not before I had my mastectomy. Two years down the line, I’m still well and treatment is working. Life I suppose is as normal as it can be under the circumstances, but I have learned gradually to live with it, well most days (i always blame the tablets lol).
Get the help you’ve already mentioned to complete the DLA form, but you need DS1500 special rules form completed my GP or Onc. My GP did mine no problem. I put off for a few months I felt like I was tempting fate with the 6 month thing but now wished I’d done it straight away.
You’ll get lost of advice and support on here whenever you need it. Good Luck with your treatment and take care xxx
Hi Snoogle, so sorry you are here and having to deal with all this. I had 9 months between primary and an incurable local recurrance so not in the same situation but just wanted to add my welcome, lots of great people to support you with every answer to your questions here.
Take care and sending {{{hugs}}}
Nikki
Hi Snoogle
Sorry you have had to join us. I was diagnosed with breast cancer in July 07 and 10 days later told that it had already spread to my liver. I am now 41 (was 39) at the time and have a 5 year old daughter and 2 year old son.
I had chemo from aug 07 to november 07 and have been on Herceptin ever since. I was told surgery is not an option, as my cancer had already spread. People dont understand what you are going through or how to deal with it really, well I found that from experience.
I also got the DLA higher rate from the beginning. Just got the forms from my bc nurse and Macmillan can send them to you as well, and my bc nurse got my onc to fill the form in and send it off. It works out at £113 a week. You are also entitle to a Blue Badge and your car tax paid as well. And seen as we have to go through this crap may as well get something back. You also get your prescriptions free now, just ask at your docs for the form.
I am nearly 2 years down the line. I take each day as it comes. It is an emotional rollercoaster and I still find myself sinking into that big black hole, but most of the time, my life continues with the normal “children” routine, and I dont have time to sit and feel sorry for myself to be honest. The kids keep me going and keep me busy. I do find that I dont have as much energy anymore and tire very easily.
I hope that you find some comfort from these forums and support and advice that you need. It has been a godsend to me and have made some lovely friends.
Take care
Love
Dawn
xx
Hi,
Just wanted to say that, yes there are those of us who have had the misfortune to go straight to the secondary diagnosis. I am one of them diagnoised sept 99 and i am still here 9 and 1/2 years later. Yep there are many ups and downs but I’m still here living my life with the c**p hand I have been dealt.
kiwi
Hello Snoggle, sorry you have had to join us here but hopefully you won’t feel so alone now you have found us.
I was “lucky” enough to have a few years between my first primary diagnosis and my secondary diagnosis. But I had a number of local recurrances and a new primary between the two events.
Yes, the DLA form can be a bit daunting but you don’t have to fill the whole lot in - with secondaries you can apply under special rules.
At my hospital there is a welfare advisor who got the thing filled in and sent off for me. This was after my GP had told me that he wouldn’t sign the form because he didn’t think I was “ill enough”!!You might want to check if there is a benefits advisor or something similar at your hospital to save you having to plough through the questions yourself.
Deirdre.
The ‘special rules’ which Deirdre mentions involve filling in form 1500. Your GP has these forms on a pad. The form says that you have a terminal illness and that you may die in 6 months or less. Try not to panic about this…many of us live much much longer than 6 months. The GPs who refuse to sign 1500 are the ones who take the statement about 6 months a bit too literally.
Generally you have to have a review of your benefit after 3 years which shows that mnay do live longer than 6 months!
Jane
Hi
Snoggle I am sorry you are here - but you will find this forum really helpful and supportive, lots of information and we even meet up from time to time. i am 44 with one child (13) and was diagnosed with secondaries in november 07, still here,
On the ds 1500 yes like Jane says don’t freak out after reading the 6 months -it i pretty clear what is intended is this - if your disease does not respond to treatment you could be dead within 6 months, otherwise why would they review it in three years?
cathyx
Hi Snoggle,
Sorry to hear about your dx but you will find the people very supportive. I had nearly 3 years between my primary and secondary dx, confirmed this Feb. Initially, I was told it was localised on my spine, but now the onc says it is much more extensive in all the bones. i had a one-dose radiotherapy in mid-Feb to my spine. I saw him again on Wed and he realises my pain is very poorly controlled. He has now decided to give radiotherapy to my pelvis and has taken plenty of xrays of my pelvis and femur. I am having a tough time with my pain relief and always an optimist am hoping a good regime will be sorted out for me soon. I have had a round of pamidronate and am waiting to have a portacath fitted before I can have another one.
As for DLA, my onc did not sign the special rules form for me saying my cancer was not so bad (obviously taking the 6 month rule literally). I have had to fill in all the forms the hard, long way. Awaiting the outcome. Apparently, if the form is filled for you then you automatically get DLA for personal care at a higher rate. Good luck with yours snoggle and I hope the help is given to you. I was also told I could only apply for the blue badge if I qualified for the mobility rate at the higher rate. I think it is sad that the co-operation of oncologists vary from town to town. Surely, it should be uniform and a fight should not have to be on your plate at a time when you need all the help and support you need.
All the best. Dee xx
Hi Dee
Have you asked your GP if he/she will complete the form. My GP was willing too even before I mentioned it to onc (who was also willing).
Take care
Hi Lynni,
When I filled the form in last week, I did not realise you could ask your GP too. I have sent the forms away so I shall see what the outcome is. Plus, now I don’t know if the GP will fill it in seeing the onc has refused! I’ll keep you informed. Thanks though.
Dee
Hi Snoggle
Sorry you have to join us on here but you will find a lot of information, support and a chance to let off steam on here! Plus (as I think has been said) a chance to let everyone know about any gormless purchases you have made! It is a dreadful shock to hear you have BC let alone that it has spread. My secondary dx came at this time last year after 4 and a half years of oblivion. It takes quite a while for it to sink in and get your head round it. I only started feeling more in control of the situation when I knew my treatment plan. I had chemo (6 x FEC), pamidronate (bone strengthners) and then onto an Aromatase Inhibitor (A I) after chemo as I’m now post menopausal. It is a very stressful place to be and you should make sure you find out all the information you need about treatment and, if needed, speak to someone professional if you need to about your feelings. I try to put the black thoughts to the back of my mind most of the time but they surface every so often, especially around results time arghhh. I hope your team will explain what’s going to happen and you get the treatment you need asap, ask us any questions you want - there’s bound to be someone who can help. With regard to financial help you can get assistance with filling out the DLA forms and your GP or onc can sign the DS1500. Mine was reluctant to do so but I did ask him if he can guarantee I’ll be here after 6 months, which is pretty difficult for anyone to do.
A year on from you I get on with my life as normally as possible, feel fine (but don’t want to tempt fate) and generally do everything I used to do although I also do get a bit more tired than I used to.
Take care
Nicky x
Hi Snoggle,
I had two years between my primary diagnosis and my secondary diagnosis, so i think both at once must be really tough. LesleyLP was in this situation at christmas, and i am sure that when she sees your post she will respond.
As the others have said this is a really good resource for bot support and information and of course being able ‘voice’ your feelings.
If you want advice - and you may not - it is this. Accept all offers of help, and make sure you get lots of hols and good times - anything in fact that helps you maintain your equilibrium. Be gentle on yourself, this is not your fault, and as you’ve already heard this does not mean immediate bad stuff, cancer is a very complex disease, and we all respond differently to it, and the treatments involved.
Take care x
Hi snoggle - not much I can add - so sorry you ave had to join us here - i was diagnosed with liver , lymph and bone mets last september - find it hard to come to terms with - the world has changed - the support and warmth on this site will help - thinking of you and take care , jayne xx
Hi there Snoogle, I’m so sorry you have to join us. I agree with Jenny, those 5% stats do sound out of date. I was diagnosed with stage 4 from the beginning, in 2003, I have bone mets. My hip spontaneously fractured and I had to have a hip replacement. I feel much better now in 2009 than I did in 2003. You will find lots of support, friendship and a whole load of info here. Oh and I have been under the special rules DLA since early 2004. Take Care…xx