Hello Jencat, I am just wondering if you can clarify with your onco (not sure, or your consultant) re the arrangement of CT scan. (I live in Canada) In Canada, only the doctor can order the CT scan. In my case, my first CT scan was ordered by my GP and it covered only my chest area. After I was referred to cancer clinic, my onco immediately ordered another full body (including head) with dye contrast CT scan for me. So, my personal view this is only a mistake if the same doctor had ordered it. My understanding the dr usually order other scans like PET scan, MRI if any doubt.
Besides, In this couple weeks waiting time, you may like to take some study if there is any trial may be suitable for you. (CT7001? immunutherapy ? plasmaMATCH ? etc. My understanding most of the trial is only available for 1st time treatment after diagnosis. If chemo is required, you may not be able to get the same regime as last time, within 2 years. Furthermore, you may also want to ask your surgeon if you can be offered IORT (?? radiate to the tumor bed during surgery??) during mastectomy surgery.
Finally, wish you all the best in your scans and sorry for the popping in. love, MelMel
I've got the bumph for both buddyfan. The CT scan last Wednesday was arranged over the phone, so I was told verbally and got given bone scan info when I picked up the letter myself after the CT scan. Yesterday's CT scan letter for next Friday contained all the info with it. I'm hoping there's been a mistake and I've not been taken out of the system! Two nurses have told me that they're sure that's the case. Why would I have the same scan twice, surely if there was a problem they'd want a different scan?
I hope you don't mind me asking, but did you have bone pain before you were diagnosed or did a scan pick it up? The trouble is I'm 60 now, so bound to have some aches and pains, especially if I've been bending over the computer for too long! x
Hi buddyfan, so sorry that you're struggling too and in pain and I can understand how worrying that must be for you. Is your neuropathic pain in your spine too? That's strange that it is more painful than the cancer, I'd have thought it would have been the other way round. I suppose that what makes it so difficult, our minds automatically think bone pain is mets, when it could be wear and tear etc. Hopefully your bone pain today will be something like that.
Hopefully too your wheeziness is just caused by the time of year and there being lots of germs about.
Hope your review goes well on the 14th and your fears will be unfounded.
Thank you too about the reassurance of bone mets xx
Hi buddyfan, thank you very much for taking the time to send me a message and for your reassurance x
Yes, I've had a bone scan before I had chemo-the radiologist was very kind and took pity on me and told me after the scan that everything was fine! I went to give her a hug and she said don't do that, they'll know I've told you! Had several CT scans before and as you say, I wasn't told anything, so I don't know why I thought the one last Wednesday would be any different!
Gave myself a bit of a talking to and told myself it was the weekend and nothing regarding the hospital would happen today! I was wrong! When the post came there was a letter for a CT scan next Friday! Phoned up CT Dept, but of course it was closed being a Saturday! As you can imagine, I got myself into a panic, even phoned ED in Crotia! The letter is dated the day after my CT scan, so of course my immediate reaction was something must have been seen and my anxiety was made worse because I did receive two Private Number phone calls on Thursday. However, thinking logically no message was left, ED wasn't phoned and I'd phoned BCN to see if it was them who'd phoned and it wasn't. So if I was meant to have this scan, then they would have known about it then or phoned yesterday. Also, why would they do the same scan twice?! Plus the scan is for Friday and BCN had said both scans have to be done by Thursday at latest for MDT meeting next Monday. Then I phoned my cousin who is a nurse, who said because my CT scan was arranged verbally over the phone, the people who arrange the appointments would probably not know this, so sent out a standard letter. (ED's friend who is also a nurse said the same) Hope they're right! xx
Hi buddyfan ❤️ Hope your scan next week goes well ❤️ Can your team give you anything to dull the pain in your back buddyfan? I hope they can 😘 💕💕✨✨shi xx
I'm so sorry you've been messed around. It's awful that you now have to wait even longer before you get any results through. Being TNBC myself I am very much aware of the chances of recurrence so knowing that bone and CT scans can be performed in that order on the same day is of immense help.
Sending you virtual hugs ❤❤❤❤❤
Susie B xx
Jencat I am sending all the positive vibes I possibly can and thinking of you loads
try not to let the worry monster nibble away at how far you have come
you, your daughters and us will stand strong together lots of love and the biggest hugs
I wish you wasn’t so far away so I could deliver the hug in person xxxx
Thank you Chaffinch x Think I'm just over-thinking everything and analysing every ache and pain and then worrying that I might have got cancer in places where I don't have any symptoms! x
Thank you Oct'17 and Feb'19 girls for being in the gold hot pants with me and Helena for the bloomers! Had a call about the bone scan on the way to the hospital for CT scan! They can't do it until next Tuesday, the day I'm meant to be getting the results, I'm meant to have it tomorrow at the latest! Phoned up BC nurse and she said she'd see what she could do and then phoned me back to say I couldn't have scan tomorrow because of the dye in the CT scan! When I mentioned it at the CT dept they said it would be ok if the scans were the other way round, so they phoned bone scan dept, but unfortunately they hadn't got any free slots! This means I won't get results until 11th Feb! BC nurse assured me that a week won't make any difference to treatment plan and that if I'm having op, it won't be delayed. However, as you can imagine, it does have an impact on myself and my girls mentally! ED is not happy that there seems to have been a bit of mis-communication between the departments!
Overthinking the CT scan! Staff there were really friendly, but I didn't think they were quite as much after the scan had finished! I did ask one of the radiologers about the pictures and he said they can only see a few and there's a couple of thousand-I thought he looked a bit shifty when he said it, so now I'm thinking perhaps they've seen something on the scan! I know from previous scans that they can't tell me anything, so not sure why I think today would be any different! xx
and for good measure here are the bloomers as well, freshly laundered as it was not raining when I put them out this morning 🙂 🙂
Here you are my darling, special gold big pants for you, we have all climbed into the pockets to hold your hands. Sending you much love and hugs
Hi Jencat 👭 hope your scans have been smooth today and you’ve got date for the others you are to have 👭 well looks like between us oct17 and the feb17 gangs you’ve a lot hiking into your gold hot pants 😁I’ll tell ladybowler you’ve given a shout out to her big bloomers, I’m sure she can rustle some up ❤️😘💕💕✨✨shi xx
Hi Jencat, Daisydi here from Feb 19. Just popped on to say we are all holding your hand and get those big pants on. Hope it all goes well today. x
Thank you Shi x Yes, good hospital is being very thorough, but making me feel anxious how quickly it's all happening. I need you all to be holding my gold hot pants this morning as feeling very wobbly about the CT scan! I could also do with ladybowlers big pants as well! xx
👭❤️👭Jencat glad your daughter is going with you, hopefully you can also ask about the bone scan, chivvy them up a bit so they can get you treatment plan sorted ❤️ Just remember we have all got hold of your gold hot pants 💪💪💪 one step at a time Jencat your team will know what to do and it’s good they are being thorough. 😘💕💕✨✨shi xx
so sorry to hear your news. Just wanted to let you know you’re in my thoughts and prayers. I hope you will have a quick and efficient team looking after you through surgery and chemo. My Mx healed very quickly and the immediate recon with silicone implant has been very effective. We are all here for you! XxClaire
Hi Shi, I got a phone call this morning from CT Dept and I've got that scan tomorrow am. YD is going to take me. Haven't heard about bone scan yet, but BC said phone them tomorrow morning if I haven't heard anything. Feeling very anxious about it xx
Hi Jencat, have your scans been set yet, keep on at them so you get them done ASAP. Have you got your girls with you while treatment plan being sorted? Sending ❤️💕💕✨✨shi xx
Dear Reboot, thank you very much for your card and lovely message, that was so kind of you and much appreciated xx
Hi Sarah, (Implausible) Thank you so much for taking the time to message me, I really appreciate it. Hopefully it's been caught early, but got to have scans this week, which as you can imagine is making me feel very anxious as my mind is on overdrive and analysing every ache and pain! Thank you for the encouraging info about your friend doing so well, that's encouraging to hear xx
Thank you Susie and so pleased that you were able to have the Zoldronic Acid and without any side effects (I didn't have any either) xx
Hi mini mad, thank you for your kind message. As you can imagine, I'm feeling very anxious at the moment about it all. I've got to have a bone and CT scan in the next couple of days to check that the bc hasn't spread. Nurse said this morning that I'll more than likely have a mastectomy, but because this is a recurrence I have to have these tests first, which is really worrying me. I feel like I'm aching everywhere! xx
Jencat, think we’ve all been lumpy since finishing rads, don’t be hard on yourself, you did spot something wasn’t right and got yourself checked out ❤️ You are doing the best you can and you are doing all you can ❤️ Gold hot pants held good and tight we are all holding each other’s 👭 ❤️💕💕✨✨shi xx
Hi buddyfan, thank you for your reassurance about having the mastectomy and pleased to hear that you have healed from it so well and quickly. I feel anxious about everything at the moment, mostly the CT and bone scans that I've got to have sometime this week. Hopefully it has been caught early and it wasn't there on the mammogram in August and was overlooked, although I had a manual examination as well and the consultant said everything felt fine. I keep blaming myself that I didn't realise a bit sooner than I did that there was a problem. I can't feel a lump, well no more than usual as I've been lumpy since finishing radiotherapy. I'm overthinking everything at the moment.
I'm sorry that you're waiting for scans as well this week and I can understand your anxiety. I do hope that despite your concerns, the bone mets haven't progressed and nothing is found in your lungs. We certainly do need those gold hot pants buddyfan! xx
Buddyfan ❤️ Glad to hear Mx went well. If you get moved onto cape, I have read some ladies on secondaries threads been having some good results with that, if you get put on cape might be worth posting to get their experience but I know I’ve read positive things about cape. Your body’s been through a lot buddyfan so take it gently and you know we are 👭on tightly to yours and Jencat a gold hot pants, is oct17 gang come with 🥊🥊🥊🔫🔫🔫⛓⛓⛓🤸♀️🤸♀️🤸♀️🏹🏹🏹🏹we are here for you and Jencat, everyone sends ❤️❤️❤️👭👭 💕💕✨✨shi xx
❤️😘❤️Jencat when are your scans next week? It’s good they are being thorough Jencat and keeping close eye on everything and good on you for being vigilant and noticing something not quite right again, and getting it checked out, you are proof vigilance is so very important. We’ve got your gold hot pants and meesh has got the 🔫 ready and I’m sure buddyfan will be along with her ⛓⛓⛓ when you need them 😘😘👭💕💕✨✨shi xx
Jencat, you are welcome! Hopefully they made you smile, if only briefly. We will always be here for each other, just let us know. Sending love to you and your girls 😘😘
You know we will always be here for you remember our notebook from meet up our numbers are in there we are available on the other end of the phone lots of love xx
Dear October '17 ladies, Thank you SO much for my beautiful flowers, it was very kind and thoughtful of you and I feel quite overwhelmed! They were a lovely surprise! x Thank you too for all your support, I really appreciate it. As you can imagine, I'm feeling anxious at the moment with the prospects of having scans next week and over analysing every ache and over thinking everything! They're going to recheck my mammogram to double check nothing was overlooked then, although I also saw the consultant and he said everything felt fine, so hoping the cancer has just appeared since then! I suppose I'm in a bit of shock that it was clear then and not now! Hopefully everything will seem a little easier once I've got a treatment plan. Anyway, thank you once again my lovely friends and love to all of you xx
Hi Jencat - Sarah from Feb 2019 group here.
I'm so sorry to read your news, I haven't been here on the forum for a while, and last year feels so long ago, but I remember you well as you were always popping into our group and being super helpful.
You must be devastated right now as any of us would be (and sadly some more of us probably will be) at the prospect of going through it all again. But I have at least one hopefully encouraging anecdote.
A friend of mine had her first bout of breast cancer (as she puts it) over 20 years ago. It came back 3 years later in the same breast at which point she had that one removed. It came back again 5 years later on the other side, when she had the other Mx and a third round of chemo. She has now been 15 years clear, is tremendously active (one of the fittest 55 year olds you will ever meet) and all is good. She even grew to love her chemo curls (which never went away) as she now has lovely long wavy hair.
So glad they have caught your new one super early. But so sorry you have to go through the whole rigmarole again
I hope you don't mind but I've told the rest of the February 19 ladies about your diagnosis. They have all asked me to send you their love and best wishes. There is of course offers of help if you need it. Daisydi has been in and posted on our thread so it's easier to locate. There's a link there so if you want to chat on our Facebook Messenger group we can add you to our group.
All our love, the February 19 group xxxxxx
Jencat, so sorry to hear your news 👭 please keep us posted and we are all here for you ❤️ Step by step again. 💕💕✨✨shi xx