Hi lovely ladies, hope you're all keeping well.
In need of a ((cyber)) hug, having a "blip day" just wish I could have just ONE day when the big C doesn't enter my head 😓 I woke up fine and then a friend text me to say how brave I am!!! It set the tears off and now I just can't seem to shake this dark cloud off.
Sorry for the miserable post but you ladies are the only ones who truly understand.
Hugs Janette xxxxxxx
Hi Nicky, thank you for your reply I have jotted a few things down to ask my onc next month when I see her.
Take care all
Hugs Janette xxxxxxx
Thanks all for your wonderful support. So much appreciated. I was bawling (again) before I got back on here!
Poor you Desperado. What an awful bedside manner to contend with. Just what you needed – NOT. I'm no man hater but some of them really are clueless when it comes to dealing with emotion.
Luckily for me I now seem to have an oncologist (female) with a much more caring approach and attitude. Although it's not as simple as gender – my boys being as soft and loving as they come. I'm going to have to toughen them up for the ride (again).
Hello ladies its so encouraging to read that you are able to live life well, I was diognosed with breast cancer in 2008. For the past seven years the cancer seemed long gone. A recent fall resulted in my fracturing my femur. The consultant mannaging my operation was able to see that the joint was craggy. This indicated that the cancer had spread to the bones. This along with a number of hot spots was confirmed by the bone scan My body scan indicated no further spread. The ongologist is very positive . I have has radiotherapy to the effected joint and am now waiting for the oncologist to review my treatment. It has been a most frightening experience. Thank you for sharing your stories and for the comfort you have given me
Thanks Ladies. I'm so determined to just get on and live my life inspite of this darn disease - its great to hear there are others out there doing exactly that 🙂
Belinda/Julie - thanks for the oligometastic info - I'll definitely speak to my onc about it and see what she says but I would have thought its too early for me yet to think about it....need to go through the chemo/surgery/radio process for the breast first and monitor what happens to the bones in the meantime.
Morning ladies, welcome all the the newbies, hope everyone is doing okay and good luck to those having scans, results etc.
Nicky, I've just been reading your last post, I didn't realise you have had mets for 7yrs, are they only in your bones?? Mine are in my hips,ribs and spine not sure how wide spread they are though (I'm a bit of a head in the sand girl) can't face all the gory details!!! My mets dx was last March and was put back on tamoxifen and I also have denosumab and zoladex injections. I have never had chemo (thankfully) but just wonder sometimes if just being on tamoxifen is enough??? I am really well otherwise apart from being tired a lot and get a bit achey in my back, my scans have been coming back stable and due my next one in a few weeks, my onc never says if they are reducing in size or NED I think I will ask these questions when I see her. (Sorry if I rambled on a bit 😦)
Hugs Janette xxxxxxx
Nicky what a wonderful post and so encouraging! I have just a month ago been told i have bone lesions/cancerous areas up my spine and have started the two 'e' drugs recently. It is hard emotionally as you say till things settle down with treatment and to hear you say you've had these drugs for 5 years is wonderful! My oncologist errs on the side of caution but I am determined! If I'm tolerating it I'd rather stay on it!
I mentioned mouth ulcers and had a giggle to be prescribed a massive bag load of mouth wash! If anyone needs any...
Thank you Nicky.
Belinda, yes, that's what I was trying to remember!
Diane here is a exerpt from the Share site (an American womens cancer site)
Oligometastatic disease refers to small isolated secondary breast cancer(s) that are stable (not progressing) and usually present only in one site of the body (oligo means ‘little' or 'few’). Can be treated by Stereotactic radiotherapy (also known as gamma knife or radiosurgery) A very precise radiation treatment for people with one or more small secondary breast cancers.
There's not a great deal of info around but there is a little here on BCC under treatments for secondary breast cancer, in the steriotactic section http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...
Basically if you fit the criteria it may be possible to have such treatment and though they wouldn't talk about cure there is some thought that this could result in NED - no evidence of disease - hopefully for many years. It is still not widely available and evidence is limited but it sounds like your Onc might be thinking in those terms and wanting to treat you aggressively.
What I want to say to all new members is hold onto hope. There are treatments now that weren't available a few years ago, there are lots going through trials and more in the pipeline, there are treatments out there that although at present cannot cure us they can keep our cancer controlled. Yes it is scary and hard particularly at first but this dx is not (as I originally thought) an emmediate death sentence. Hope and hoe some more xx
Hello Mary and Diane,
Sorry you've found yourselves here but am glad you found the site and this thread, you will find lots of understanding, support and information here. You can share your fears and frustrations and also your happy news when things go well, we have lots of laughs here too.
As the others have said, the first few days weeks months are hard, you need to give yourself time to take on board the news and adjust to your new life. Once treatment plans are sorted you will start to feel a little mre in control.
If it helps, I've had SBC (bones) for over 5 years now and have remained stable on hormones after some rads initially. I do take painkillers and my mobility is not as good as it was but I still live a lovely life. Some of my mets have shown signs of healing. There are women on site who have been living with SBC for 10+ years so take heart. Diane there is a term used for people who have just one or two very small mets, I can't remember it off hand but will get back to you with more info when/if I recall the details.
Best wishes to all on the thread hope you are all managing ok xx
Mary I second what Helen has said, take time to absorb things, it's a very scary time for you at the moment but I'm sure that once you are on a treatment plan you will start to see light at the end of that scary tunnel you are in at the moment. Please feel free to ask us any questions there is always someone on hand to help and advice you.
Hugs Janette xxxx
With great saddness I'm back here too, and awaiting a CT scan. I'm in touch with it in a frighteningly real way now – the lump I mean, and the constant pain – up high at the back of my ribs. I can't bend without pain, I can't lift without pain. Lying in bed is also mostly painful. To be honest it's been ongoing since November – but I didn't act on it. I'm now dosing correctly on standard painkillers as its vile claws gnaw away at me.
I saw various doctors who seemed eager to put it down to my excessive renovating, and I was more than happy to live in denial with them. I should have listened to a physiotherapist I happened to see early on, but as my husband explained, the cancer **bleep**, to quote Lisa Lynch, had been there all along. Although not to be sneezed at, Chemo merely bought me some time.
In desperado fashion I'm going about attempting to bring my scan forward; crying on the phone, that sort of pathetic behaviour. At 47 it's my loving, beautiful boys, 9, 12 and 14, I can't stand the thought of losing. Not to mention my man and the idyl we continue to slog our guts out for.
Reading your threads makes me more emotional. My heartfelt wishes of salvation go out to you all. I haven't spoken to many family or friends yet. I don't know what to say, other than the **bleep**'s on the move, out to get me and render my loved ones low in the process.
I'll try to report more when possible.
Good evening ladies. Janet, what lovely news, congratulations! I bet you can't wait to have lots of lovely cuddles.
Been a busy week for me. Monday I had CT scans in London (live in Sussex and have treatment here now but London is where my Onc is and wanted to stick with her so I have scans and follow up appts there). Not the best of appts, have a power port but they can't/won't use it for contrast so had the cannulation battle, first radiographer couldn't do it, got a more senior member, couldn't do it, got consultant, eventually managed to get vein - hoorah! CT machine woldn't work- boo! Several attempts. on and off machine , resetting etc eventually managed, only took about two hours Too tired and stressed to visit parents as planned.
Tuesday a nicer day, met a SBC friend who I've known here and on FB group for several years, had lunch together and was lovely to meet her and was like chatting to an old friend. Had a meeting in the eening so missed live chat, didn't get in till nearlly 10pm.
Wednesday, early start. Went to Chris's (Steris) funeral. Was a nice day and a lovely drive and the service was just right, a mix of smiles and tears, a sad occassion but a lovely tribute to a lovely caring,funny woman.
Thursday and Friday busy but boring, so glad to try to catch up with some rest this weekend.Cyber cafe for massage I think xx
Hope everyone, specially the new members, have managed to have some good times this weekend and hoping the week ahead brings positive news for those waiting for results.
Tinks, have just caught up with the other news, please do not leave, there really is no need, you've said/done nothing wrong and we will miss you.
Hi Helen congratulations to your cancerversary you really touched my heart I have seen so many of your posts and admire your spirit,humour and knowledge and you have given me many laughs long may you live you know how to kick cancer in the arse !!! loads of hugs xxxxx
Hi Secondtime and Duck girl..just wanted to say welcome although i wish you hadnt had to join us. Just wanted to re-iterate what everyone ese has said but know that we all understand it is easier said than done. I was 47 when first diagnosed, 51 now seond diagnosis of SBC. I have skin, chest and abdomen mets and recurrence in my reconstruction and i only went 6 weeks after my chemo finished before it was back and spread. I seemed to be ok whilst on cpecitibine, although some SE's were harsh (but manageable) but my onc was adamant i couldnt stay on it so was relying on letrozole which clearly dint work so here i am again. I am now on erubilin. scary when the treatments dont work or last long so hard to be positive all the time. I know you are both young and worried about your beautiful children..i think if you ask any of us this is our overriding concern. Believe me, it isnt easier however old your children are...the goalposts just change. Its heartbreaking. With regards to life expaectancy i take heart in what others have said but have to admit it is running my thoughts at the moment. When my mets came back a second time i sensed a change in attitude from everyone at the hospital..even my onc seemed dumbfounded that the chemo and letrozole didnt work but no one seems to have any positivity, least of all me. Seems daft but if someone told me i had 5 years, at the moment that would seem to me like brlliant news..just cant seem to shake the negativity off. Finding it harder and harder to just go day by day but unfortunately thats what we have to do.Please take heart from all the lovely ladies on here who often keep me calm and sane and give me hope.x
Morning ladies, well back to miserable wet weather.....typically weekend weather I should say!!!
Hope everyone is okay, oh I just watched the video of Holleys Kitchen how touching, it even brought a tear to my hubby's eye, I don't tend to go on the other threads, I just jump on here to keep up with everyone that's why I have only just seen it.
Hope you all have a lovely weekend
Hugs Janette xxxxxxx