Hello All - I have been reading a few posts and feel ‘brave’ enough to join in!
I am Catherine aged 38 from South Wales - and I was diagnosed in January 2009. I was involved in a car accident in Aug 2008 where I was hit by a car as a pedestrian. Since that time I have had pain in my lower spint, but assumed it was from the accident and so did my doctor. I am a police officer and carried on working with pain tablets right up intil xmas, when the pain just got too bad. GP said MRI with NHS would be 3-6 months so I paid for an MRI privately. I was expecting a fracture or something - but the orthopedic surgeon took the rug from under my feet when he said i had a shattered lumber vertibrae which was now sitting on my nerve (hence the pain) but it had likely been casued by a tumour and that the cancer was back and I needed to see my oncologist urgently.
After bone scans and ct scans and further mri scans I have been told the cancer in in several other places in my spine, skull and ribs and that it is probably ‘free flowing’. I also have smnall growths on the liver but they say it is too soon to say what they are.
My treatment in zometa and zolidex even though I was origionaly minorly HR+. I am due to have spine surgery on 26th March to hopefully get rid of some of the pain. The oncologist is talking of oral Chemo after my surgery as am having intermittant pain in the ribs.
So that’s my story - sorry if you are bored by now! I am not in a positive place at the moment and still in shock. I have an 8 year old daughter, who I have decided not to tell yet - why ruin her life just yet eh? Counsellour has suggested a memory box and book, which I have bought but can’t seem to start writing yet. My husband is being positive and not wanting to talk about the inevitable, where as I do, especially as am doing a will at the moment. At least he won’t talk about it but I know he thinks about it because when I said I wouldprobably be cremated, he said good because he wanted to take me back to New York where we got married! Nice thought eh! But am hoping to go back in person first !!!
I think I’m doing everything right - I have a counsellor, I do as the doctors say and have all the treatment despite a 30 years old phobia of needles and I try to stay positive for all around.
But how to you handle the down times when you are alone? I am so scared…
Sorry - I’ll go now. Hope to make some ‘friends’ here who understand from my point of view.
You have had a ghastly time of it, I am so sorry to read your story. A car crash is traumatic enough in itself. I wish you all the best with your surgery - I am sure it will go a long way to resolving your bone pain. I don’t have bone mets myself, but there are many other ladies who have had very successful surgery to treat their mets.
It takes a long time to come to terms with a secondary diagnosis and I can only suggest that, it does get ‘easier’, with time. It never goes away but it does get easier. You adjust your life to suit and keep on going, especially when you have children to consider. My own two know little of my true situation as my health is currently fine and I see no point in worrying them more than they need. They know I have cancer and that I regularly visit hospital but not that I will likely die from it. I simply can’t tell them that yet. (Mine are just 9 and 7.) But they have enjoyed completely normal family life for nearly four years (since my diagnosis). So you see, it is not an immediate ‘death sentence’ as some of the media would put it, and life can carry on.
There will always be the awful, lonely times so just come and unload here, we know how it feels. I wouldn’t worry about doing everything ‘right’. Just take your time and take care.
Hi Cath,
welcome to the club no one wants to be in, we are a nice friendly bunch and will help whenever we can.
It is early days and from what I have just read you are doing all the right things. We all have our own pace at dealing with it, the shock, the fear, the sadness and then we do all the practical things.
I am sure you will make New York or where ever else you want to visit. The only advice I would give is if you want to do something and you can, then do it don’t put it off.
I think the tablet will be capecitabine I was on that for 2 years and it did well for me I also found it an easier chemo than fec or taxol but we are all different and respond to treatments in a very different way. Keep your feet soft and try to avoid the dry skin problem. My husband Ian rubbed mine every night with e45, he still does but now it is for my pleasure. Mind you he has gained really soft hands so he doesn’t complain.
I think AnneS is from your neck of the woods, I am sur e she will be along later. It is 5 years since my secondary diadnosis and I am still around after several guestimates that I wouldn’t be. It is amazing how much we can put up with.
Love Debsxxx
Welcome on your first post :). I am one of those bone mets girls. Havent had any surgery but have had bone mets since 2002. I am currently on Pamidronate (another type of bisphosphonate) and also Herceptin. I wonder if your HER2 status was tested the usual way or if your hospital did a Fish test. It may be worth asking your oncologist if this can be done now because it is a more accurate test for those who show a weakly positive status.
Just wanted to say welcome - hope you get loads of support on here. Your secondary dx sounds very traumatic and it will take you time to get your head around everything, the uncertainty of it all being in my view the hardest to deal with. It’s coming up to 2 years since my secondary dx and as Jennywren says, it does get “easier” (though not, so far at least, “easy” in any way).
If it is capecitebine (also known as xeloda) your onc is talking about as a possible oral chemo, I have been on it since last May and there are several threads around about the potential side effects etc (or pm me). I have liver mets so can’t advise at all on the problems with the bones.
Hi Cath, I’m so sorry you have to join us. I was diagnosed in my early 40’s when my hip spontaneously fractured. I had a hip replacement and can honestly say I’m feeling so much better now than when I was diagnosed…and I was diagnosed in 2003. Like you I was very scared at first, it took me a while to post here. Be kind to yourself and take one day at a time, it’s such a shock and we all need time to get our head round our diagnosis. But we all get there and some normality returns. This is a very supportive place…you will find help and friendship here.
Take Care…xx
Hi Cath, I too am sorry you’ve had to join us. I was dx’ed with bc and bone mets together just before Christmas when I thought I just had an incredibly bad back - turned out to be mets to my spine, hip and ribs (and now shoulders from a recent bone scan) It’s taking me a while to get my head around the dx and I fully understand what everyone here means about the rollercoaster of emotions we experience with secondaries.
Belinda is right, this is a very supportive place and there are some very inspirational people who post here so take heart from them.
Take care
Lesley xx
Hi Cath,
So sorry to hear of your news - a what a traumatic time you’ve had. As Debs said I’m in South Wales in the Sirhowy Valley and treated at Velindre Hospital in Cardiff and am near your age at just 39 so understand how isolating it can feel at such a relatively young age. I was diagnosed by routine CT scan in Feb last year with secondaries in both lungs and lymphatic system but after 9 months of Taxol chemo and Avastin last year and still on Arimidex and Zoladex I’m curretn NED(no evidence of disease)and enjoying a chemo break!
I know what a shock it is when you’re first given the news and it does take time to sink in. I don’t have children - sadly cancer took that away - but can imagine that must be so difficult but hope I am proof that things can turn around with the treatment as I really never thought I’d be getting clear scans and although I am aware it will come back at some stage am trying to live for the moment as much as possible.
If you’d like to PM me or meet up some time for a coffee I’d be more than willing.
Which oncologist are you under? I’m with Peter Barrett-Lee.
Anyway sending lots of positive vibes to you and your family.
Just bumping this up to make sure Cath sees the replies as this thread seems to have got a bit lost!
Take care Cath and feel free to have a rant on here any time.
Hi Cath
So sorry to hear that you’ve had all of this happen and that you’re having such a rough time. Keep ranting, we all need to do it! Hope you get lots of support from here.
Anne xx
Just wanted to say hello from one Kathryn to another! You’re not wrong about losing this thread, I saw it and then when I went to reply couldn’t find it!
Cath, my mets sre principally lungs though I have what are decribed as spots in bones and a small tumour in the liver and various other suspicious bits! I have been living with this for nearly 2 1/2 years and am currently on weekly Taxol and Avastin. I did have Xeloda but it stopped working. One thing that I have learned from coming on this site is how different everyone is and how differently people’s cancers respond. I was devasted by my poor response to Xeloda as I had met many on this site for whom it had worked for a very long time. My oncologist always says that there are more options in the cabinet!
My current chemo regime seems to be working well for me and I am to stay on it for now. After coping with the initial shock of diagnosis, like being hit with soething heavy it does get easier but there is always part of each day when it returns to haunt even for a little while.
I just try not to go too far into the future, I carry on with work, my teenagers and all that that brings walking and planning holidays and treats.
I have also found counselling very helpful though I will probably scale her back for the moment. Everyone here is really friendly and supportive, people organise meetups which are great fun with a lot of laughter and camaraderie.
Love Kathryn