i have read your post when I was first diagnosed as TN and think you may have had messaged me at some point. I am sorry to hear about your recent news but would echo what Shi said about considering trials. Prof Schmidt at Barts is always running some and he is a specialist in that field and i’ve heard some people have had good responses. Worth exploring....
wishing you all the best and fingers crossed for you and that you have a good and productive consultation today
👭❤️ For this afternoon Jencat. Also see if there are any trials you can get on Jencat get your daughters to google trials and then bring up with your onc, there are new trials happening all the time as they develop new treatments ❤️ Worth trying ❤️💕💕✨✨Shi xx
Thank you for the info buddyfan x
Got my oncologist appointment this afternoon, which my daughter's are feeling positive about because we'll get a treatment plan, but I'm dreading it. I think at the moment I'm a bit in denial and I think today's appointment will bring home to me that I can't be cured this time, even although the spread is so tiny x
Just been scrolling back through the forum and just wanted to say how sorry I was to hear about your bone mets too and to wish you all the very very best with the treatment. It must be a very worrying time but it sounds like your team are on it. Keeping everything crossed that the chemo side effects won’t be too bad for you.
Take care and keep your chin up
Cherry Bakewell 🍒 xx
Long time no speak!! I only visit the forum once in a blue moon now but I just wanted to say how sorry I was to hear that they’ve found a little spread - but as you say it sounds like the very best of bad news and that they’ll soon be able to zap it. At least you know where you stand now. As we all know only too well, it’s the uncertainty and the waiting for scan results that is the absolute worst.
Anyway, hope you’re managing to keep perky. Take care of yourself.
Cherry Bakewell 🍒 xx
I received the best of bad news on Tuesday. I was convinced the BC had spread after the 3D bone scan the previous week and I thought probably my spine as that was the area being looked at. I have got a spread, but is contained in one small spot in my sternum-got the impression it might be only mm's. BC nurse seemed to think it would shrink/disappear with treatment, hopefully she's right. Seeing the onc on Monday for a treatment plan.(The app was going to be in a couple of weeks, but ED made a bit of a fuss and said the past 6 weeks were taking it's toll on me) xx
Hi buddyfan, I sent that message to you before it was finished and not making sense! Now I seem to keep losing my messages! What I meant to say was, hopefully the bone mets will soon shrink with the treatment and so glad your wheeziness isn't anything serious xx
Hi buddy fan, thank you so much for asking after me x I'm staying with my friend for a few days, although ended coming a day later than I intendedas I felt so tired and now I've got a cold-I think it's the stress of the past few weeks.
Sorry to hear that you've got more bone mets, thopefully good your fear that it had gone to your lungs were unfounded.
Sorry to hear you’re lighting up like a Christmas tree but Good news that it’s not spread further than the bone mets. Hopefully the rads and chemo pills will keep it under control and improve things for you. What SEs do you get with the chemo 💊 surely they can’t be as bad as what we went through with chemo? Hopefully no 🏄🏻♀️ 🏄🏻♀️ and 🚂 🚂
Hi buddyfan ❤️ Glad to hear no further spread even if you are our Christmas tree on the bone front. Hope the rads on spine zap the tree lights to pieces, when are you starting rads? And 🤞all ok on the chemo pill and you get on with it ok ❤️ Hope your mil’s dialysis goes well for her too. ❤️💕💕✨✨Shi xx
Hi buddyfan hope you got on ok today ❤️ I think jencats having a weekend away with her family ❤️ I’m sure she’ll pop on to see how you’ve got on today ❤️ 💕💕✨✨Shi xx
We had a trip out to Harry Potter world was supposed to be returning at 4 but they didn’t get back until 5 because of traffic
the parents were moaning loads the trip was delayed coming back but the trip was totally free as it was a reward trip no pleading some people x
hope you are managing to stay positive xx
The farm was good Sue and a nice distraction Only problem was there was an accident on the motorway, so instead of a 20 minute bus journey back to school it took an hour and a half! Great fun with a lot of noisy children! I thought they'd have been more tired after a busy day! x
Hope the farm was a distraction for you jencat x
buddyfan sounds like they don’t know their ars* from their elbow I honestly thought now everything was computerised the info would be available
bug hugs to you and you so rock them gold pants x
Morning lovemama, thank you for taking the time to send me such a reassuring message. Really good to hear that things that lit up on your scan didn't end up being sinister. It wasn't my consultant that asked for the 3D scan after the bone scan, it was the person checking the bone scan pictures who said she wanted a closer look at my spine/chest area because there was a 'funny bone' that needed a closer look at.
I have got a meeting on the 11th to get my results, an appointment I'm dreading in case I get news I don't want to hear!
You're right about the sleeping and eating, but I'm finding both difficult at the moment. I'm helping on a school trip to a farm today, so perhaps sleeping will be easier today! xx
Sorry you had such a palaver at the hospital yesterday buddyfan! Hope you're wrong about the spread of bone mets and the antibiotics make a difference to your cough. Thank you for your support xx
Blooming heck buddyfan, you’ve been pulling the whole blooming train with those worlds strongest men being left in the dust 😳what a day bet you were 🤬🤬🤬 think you should complain to pals and take it higher, you should not have to run around like that, the nhs are there to do that. Hope you get on better tomorrow. I can see you giving short shrift if you get mucked about tomorrow. Sending big ❤️❤️💕💕✨✨shi xx
Hello Jencat, in Oct 2018, I was dx bone met to my sternum. On my bone scan, it showed a lit up on my sternum. On my CT scan, the radiologist made a comment something like that "1cm disruptive tissue at both vertexes of a lesion on my sternum and this co??? with metastasis".
In Jun 19, on my most current bone scan , it showed a lit up in my rib bone and the head of my spine in my neck. On the CT scan 1 week following the bone scan showed 'nothing'. I told my onco there was an injury to my rib 2 days before bone scan. My onco then said the area might be healing and we would see in further scans. For the lit up in my neck was mostly arthritis. In both the Sep and Dec CT scans did not show anything in the two areas. In my file I saw my onco had put 'injury' and 'Fibroxxx' for that bone scan.
Though your CT scan result most probably is ready (usually 5 days in CAN), I guess your consultant (no such position in Canada) may not have a chance to look at your CT scan and his request for another scan is simply due to a doubt basing on your bone scan.
Though I understand your anxiety, I think you may be a bit early to guess if it is bone met, 8-) even before your team's review 8-) I am thinking may be you can try to eat healthy, sleep well to prepare for the treatment. Love
Thank you Whytefawn and Shi xx Love to all the Oct'17 girls xx
Thank you daisydi for taking the time to message me and for your reassurance x You're right, there could be other explanations why the 3D scan was needed, but I've managed to convince myself that the news next Tuesday isn't going to be good x
Jencat a nuclear medicine bone scan is very non specific. It identifies bone activity but cant distinguish between things so sometimes they just need more information to make a proper diagnosis. Try not to worry yourself too much, easier said than done I know x
Hi Jencat when do you get results from all your scans you’ve had last week and this week? It’s good you bumped into your bc nurse, they have seen it all before so I hope you took a bit of comfort from that. Please ring the number on this site tomorrow there will be someone who will be able to speak to you with more informative reassurance ❤️We can only hold onto you gold hot pants and be an ear for you 👭 everyone sends their ❤️❤️To you and the girls 💕💕✨✨shi xx
Thank you for all your good wishes x The scan was horrible! I've got a feeling the cancer might have spread as they also did a 3D scan on my chest/spine area as the consultant wanted to have a closer look at a 'funny bone'. The girl doing the scanning did say that this is often done and it doesn't necessarily mean it's cancer, it could be arthritis etc, but I'm not so sure! She also said that the consultant checking the scan is very through.
Fortunately because it's World Cancer Day, Macmillan had things going on and I bumped into my BC nurse and explained what had happened and had a long chat with her and she was very reassuring. She did say perhaps the 3D was taken because I moved, but I said I didn't think I had! She didn't give so much of an explanation after I'd said that. She said I will definitely be having a mastectomy, but it depends on the results whether it will be before or after chemo. If it has spread, she said I'd be on chemo tablets afterwards and said that she's known women to be on them for years. I'm not sure if that's right, but YD said the nurse should know more than me! As you can imagine, I'm anxious and feeling that the cancer must have spread xx
Thank you all for your good wishes xx Just off to the hospital 😞 Thank you for holding onto my gold hot pants and hope lady bowlers big knickers are on there way! xx