Hi Carolyn, sorry for my absence just on a real downer at the moment 😣my little Heidi has gone to live with a family member. I was just finding the responsibility and demands of owning a a young dog too draining, she's a beautiful little thing but was very needy and wanted constant attention. Still soo upset with the whole situation and miss her terribly.....feel like such a failure!! know she will now get the full attention she craves now as the couple she now lives with are both retired so can spend lots of time with her and I can go spend time with her whenever I want and she can come for sleep overs!
Hope your all keeping well Hugs Janette xxxxxxx
Thanks mo.. The snr doc finally came round.. Was lovely and did some strength test and said he suspects it's sciatica but just to be on the safe side they want the MRI done tomorrow. I had one when I had primary BC - very noisy if I remember rightly. So not worried now, just taking it easy and relaxing. Like you say, no washing up and the chicken Kiev was not too bad for dinner here!Helen xx
Sorry about 'SCC'! But you got it!
And remember that you can have back pain caused by a slipped disc and surgery can fix it, even though the disc is very close to nerves. It is certainly a sensitive area......the spine.....for you & for surgeons, but things can be done, including radiotherapy to shrink things. I am no expert, but having bone mets myself, including lower lumbar vertebrae, I have tried to learn a bit from other ladies on these threads. Also my onc mentions it from time to time, to keep aware of possible symptoms. But your symptoms may not be SCC, so you just have to wait and see. Could just be plain old sciatica. Good luck tomorrow........hope it isn't too exhausting, having tests etc. Have you had an MRI before? I haven't......yet. But must be done, to rule it in or out. And if they suggest staying overnight, well, it will save driving back & forth! Do you have a 'grab bag' with you? You can lie back and let them keep an eye on you. And who knows, the food might be ok too! No washing up.
Take care, and just be patient for now. Best of luck, and thinking of you tomorrow,
Thanks mo.. I am still here. They are gonna MRI me tomorrow but can't decide whether I need to lie in a hospital bed overnight or go home and come back. Seems to be taking ages to decide!Fortunately I've got my iPad and free wifi here so it's been ok! What's SCC?
Was reading your worries about spinal cord compression. Yes, it can be treated, in various ways depending on the specific case, but as usual early detection is always best. Hence your onc being concerned. You are doing the right thing to visit A&E. They won't mind at all, and will refer you, hopefully then and there, to someone who can diagnose what is happening, probably with an MRI scan. As Carolyn says that could take time. Take a person with you, or a book! Hopefully it is ordinary sciatica, but if not, then it will be dealt with. I have read of others on these threads with SCC being successfully treated.
All the best for today & thinking of you.
Welcome. 20 years between primary and secondary is a long time - I think most people think there is this 5 year all clear for cancers generally but I've always understood it to be different with BC, could come back at any time. This forum is fantastic for support and information and we look forward to getting to know you.
Carolyn, can I pick your brains? Went to onc on Friday, is concerned about the sciatica in my leg and weakness in my lower leg and wants MRI. Am booked for Saturday but he said if it gets any worse to get down to A&E as it will happen quicker. Anyway, I'm now worried and have numb toes so am gonna have brekkie and go down to A&E and see what they say. What can they actually do if it is to do with the cancer pressing on the spinal chord? Isn't it all too delicate round there to do much.? Helen xxxxx
I am so sorry you've had such devastating news. It must be a big shock and you are probably all over the place. I'm glad you've found us though as we will understad and offer any support we can.
My primary was in 1999 and my bone mets were dx in 2010, so I do have some idea of what you are going through.
It is hard, especially at the beginning, to get your head round it all, but once there is a plan in place you will probably start to feel a little more in control. Take things at your own pace, you will find a new normal but it takes time - be gentle with yourself and if you've any questions please ask.
Sending a gentle reassuring hug xx
Firstly ypu are not a wimp, we all recognise those feelings. I posted this recently , I too had the doible whammy, bc and mets to bones. I didn't really understand , but was very , very frightened. I started planning my funeral and felt very vulnerable. That was nearly three years ago .
I have had the lump removed, 2 bouts of radiotherapyy, and am now on 2nd hormone treatment, I have bone injections (at first every month)but now every three months.
I am well and work . I do not take pain killers and am very mobile.
We are all different, cancers are different, however there IS a lot of treatment out there. I am so sorry you have had to join us, we all have bad under the duvet days . You will find a new you .
i too was diagnosed with breast cancer 3 weeks ago after first mammogram at 48. One week later got told it had spread to bones but only spine. Had bone scan then got told it was extensive in bones. Absolute horror. Thought that was it only a few months to live but reading up especially on these forums has shown that this isn't necessarily the case. My oncologist says not months but many years and I'll see my children grow up. I've been put on biosophosonates to strengthen bones and the only faff is sitting upright for an hour after taking it. Then I am on tamoxifen which I'm four days into taking. I've also got a short dose of steroids to combat tumour flare which I am having a bit of at the mo. I'm finding long dog walks every day really help and goodness knows where the strength is coming from but this wretched condition isn't getting the better of me. Of course wobbles are inevitable and believe me I do get them but I've been told there are many treatment options to try and control this for a long time. I know you must feel like the whole world is crashing down and we've now entered a surreal world of hospitals and drugs. Up to 3vweeks ago I didn't even take paracetamol for a headache. I'm here if you'd like a chat as we are obviously at pretty much the exact same stage. All the best. Debbie x
Hi, not sure if I've come to the right place but have been diagnosed with bone mets two weeks after first diagnosis of breast cancer. I'm lost, I'm numb, I'm too scared to sleep and too scared to move in case I snap in two. My spine looks like a Swiss cheese and my hip is a mess. All I see in front of me is pain, hospitals and a fast demise. Don't know what else to say right now but I need to know I'm not alone and that someone else understands. I'm only in my mid forties. I keep thinking I'm going to wake up any minute and it will have been a nightmare...but I don't. It's real and it just won't sink in. Please could someone just tell me something positive that I can hang on to? Sorry to be a wimp.
Thanks, Mo. It gives me hope and I wanted to share that with you lovely ladies. Babsy says she is signed up for the study, so they may still be recruiting?
I've found this forum such a source of support through the common aspects of treatment, but it's incredibly hard to get reliable data for primary angiosarcoma. I know of two other primary breast cases in the uk, one 10 years clear and the other with extensive mets 😞
Hope the sun shines on everyone this bank holiday weekend xx
Carolyn, on the subject of horse shampoo, my speciality(!) I think you may mean Megatek. It's for re growth of horses manes and tails but I did buy some when I had EC chemo in 2009. I was a bit dubious so phoned them up and they said that lots of chemo ladies bought it. I'm not sure how much it helped tbh but my fluff didn't fall out at least!
Just to say thanks so much for the fascinating link........just the sort of news that is needed for those of us with secondary metastatic cancer, but it is also relevant to your angiosarcoma of course. Any cancer that has spread. I personally think that the time has come for the focus to turn to metastatic cancers. The 'cure' so far for most cancers, breast cancer in particular, has been to physically remove it before any cells have escaped. So the emphasis....and money......has been used to encourage people to spot it early, go for regular mammograms, and follow up physical removal with rads & chemo.........extra insurance, but possibly ineffective. But this initiative is pursuing a tighter focus, and uniquely encouraging patients to share their experience with researchers. I like it. They are finding 'extraordinary responders' and hoping to connect them to genetic markers. We need something like that over here. Three cheers for Dr Corrie Painter (who started her journey via her angiosarcoma) who has spotted the yawning gap and is filling it.
Thanks again. Very interesting and heartening. Do continue to visit these threads. The atmosphere is always cheerful and supportive, as you seem to have noticed!
Thanks Tat. Fascinating and brilliant stuff, thanks so much for sharing. I'm already signed up and following on line.
Hi ladies. I hope you don't mind me posting this. I read your threads regularly as my soft tissue sarcoma has a nasty propensity to pop up again locally (or anywhere it fancies, really) and I find your supportive attitude and humour immensly encouraging. This has nothing to do with secondary breast cancer, but please stick with me a little longer, all will become clear!
I received a Google Alert today for angiosarcoma (the reason I had a mastectomy last November, a primary in my breast). The article below is about a woman called Corrie Painter who had the same primary as me. She is also a post-doctoral medical researcher and has used her knowledge and skills to promote fundraising and research into angiosarcoma and now secondary breast cancer, also little understood and researched. It's encouraging for all of us that new approaches are being used to gather statistics and identify new research avenues. I wanted to put this out there for those of you that want to follow the project.
Hugs to all. Tat x
Did you ever buy that shampoo for horse mane/tail that you had researched for quick growth ? I have been using Simple and hate it. Ive been looking online and there is so many that promise quick hair growth and results but its hard to believe whats good and bad !!