I only had my first oncology appointment today and got the good news that my CT scan was clear (no sign of any spread).
However, within the space of a few hours I have returned to the scared, gibbering wreck that I was before the appointment.
Firstly, I have a bruise-like feeling in my side/rib. There is no obvious sign of a bruise there and I don’t remember hurting that area (I did bang it very gently the other day but not enough to bruise it I’m sure). I did a bit of research to see if the CT scan would’ve picked up any bone issues (to put my mind at rest) and it would seem that a CT scan wouldn’t detect bone cancer… so now I’ve convinced myself that the cancer has spread to my ribs and wouldn’t have been picked up.
Then I decided to look up a bit of info about my specific type of BC (triple negative) and only found scary stuff. But I saw that this forum has a section specifically for TNBC so I had a read through some posts on there and they have truly freaked me out. There is one post asking whether it is possible to survive TNBC!!
After my appointment today I was so positive and sure that I could beat this but now I’ve crashed back down and don’t know what to do with myself.
I was so hopeful of getting a good night’s sleep tonight after the relief of my CT results but now I doubt that is going to happen.
Sorry for all the ‘woe is me’ posts I’ve made, I just don’t know where else to turn.
Nikki, I too thought had bone cancer, I had sore knees (have had them for years) and as part of my diagnosis I was sent for bone scan (plus liver scan) . My bone scan was clear, my knees didn’t even sow as hot spots. It was just my powerful mind . You will have good positive days and nights plus days when you are scared and can’t cope. This a scary time and like you I read up on lots on my type of cancer (stage 3, 48mm tumour, with lymph node involvement er and her2+) and it doesn’t always make good reading, but there are good stories and this site is brilliant for keeping yous sane.
This time of night/early morning is worst when you can’t sleep to magnify your fears. .
I’m sending a hug and some positive vibes. Be good to yourself. S xx
Nikki you really need to stop googling Hun, all it does as you have found out is scare the hell out of you!
your feelings of fear are so normal at this stage, we just want a guarantee that we are going to survive this but of course no one can give us that which only escalates our already frantic minds!!
I have a friend who was TN and she’s recently had her 2 year all clear, she went through all the emotions you are now and they even sold up and moved putting their retirement plans in place preparing for the worst case scenario but hey it’s not happened and she’s happy and healthy living the dream in the Isle of Wight!
Try and put your trust in the team looking after you, be led by them and have faith that they will be doing the very best for you, i found I was like a child, if mums not panicking then I don’t need too!!
i know how awful this is and just how you feel right now, it’s just like a living hell and a time I never want to go back to but we’ve all come through it here and will support you all we can Xx Jo
Ditto all you have said my lovely. I also had my onc appointment yesterday, he called my cancer a “small and nasty”
My tumour was 12mm, they took 40mm with clearance. I was upgraded to grade3 as I too have TNBC, no lymph involvement. Mine is basal-like TN. You are completely right that it is hard to find posts that have much positive to say without stumbling across the negative. Definitely stay away from google. I even proceed with caution on the TN board on here.
I will be having two different drugs at the same time and He wants me starting next week! No time for cold cap as that adds 2/3wks to match the machine up or sth. This in itself has me worrying its that aggressive its coming back right now.
This isnsuch an emotional rollercoaster. I felt emotionally drained last night, but got a great sleep and feeling more positive to face the day today.
If you need a wallow or cry, just do it, I always feel better after. Much love x
Hi Nikki. I’m also triple negative. My oncologist told me to stay away from Google but it’s hard not to look isn’t it! When I first read up on TNBC I wondered whether it was even worth me having treatment as I was convinced that it would just come back or spread. But I’ve pulled myself together and realise that I need to not dwell on the type of cancer, as there is nothing I can do about it. I am now concentrating on having my treatment and beating it. In time you will come to terms with it too. There are many ladies around on here and other forums who are well many years after beating TNBC.
Xena75, My oncologist had me on chemo 2 weeks and a day after I was first diagnosed. He just wanted to get it started so try not to read too much into yours starting quickly too.
Hi Nikki, as the others have said, don’t google. The information is often very out of date and people often post just the bad stories and not many good ones. I have a friend who had tnbc, she’s had 3 all clear annual check ups so far and she told me that when she gets to 5 then her odds of getting breast cancer again become the same as someone who has never had it, so I think that comfirms that tnbc is very treatable with very successful outcomes.
I think we’ve all had good days and bad days on our journeys, which is ok as we are only human. I’ve had lots of aches and pains along the way and I’ve stopped thinking that they are the cancer returning and realise now that I’m just getting old!
I hope that once you have been given your treatment plan you will begin to feel a little more positive - it’s amazing how the knowledge that something is finally being done lifts your spirits! Take care, Michelle xx
So nice to read the reassuring replies to Nikki. Once again I didn’t sleep well last night. I’m worrying about the CT and body scans I’ve got to have. Every ache and pain is now analysed! I’m sure some of them are caused by sleeping awkwardly since op and poor posture. (My daughter said I wasn’t standing straight yesterday when I thought I was and when I hurt my shoulder a few years ago, my physiotherapist said my posture was poor and telling me to straighten up my shoulders) So logically I know all this, but in my head I’m convinced the cancer has spread. The consultant has said I’ll be fine and it’s only a precaution, but through no fault of the consultant and nurses, I’ve been told this from the start of discovering I had bc, but at each visit, the news has been a little bit worse, so I’m finding it harder to trust what they say.
I think feeling like this isn’t helped by still getting over the op two weeks ago and I hadn’t been sleeping properly, so tired before I even saw the consultant last Tuesday. Sorry for going on, but I feel I have to try and be upbeat for those around me. My Dad is 89 and I hate the worry I’m causing him. My mum died quite a few years ago and I’m his only child. My younger daughter I know is really worried, but trying to put on a brave face. She had a cry on the consultant and he was lovely with her and told her I’d be at her children’s birthday parties. She hasn’t even got any yet, so that’s reassuring! xxx
It wasn’t google as such - it was this very website (which I’ve been advised by the hospital has valid information) and it is a specific TNBC board on this forum that I was reading. I felt safe that the info I was looking at is all ‘ok’.
I think I will call the BCN later today (once my littlest goes down for his nap and the older two children are occupied with something - I don’t want them to hear my call) and see if I can get some reassurance.
Also, I was told I’m still looking at around 3-4 weeks before starting chemo?! I was diagnosed officially 2 weeks ago (but unofficially it was 3 weeks ago) so it may be 6 weeks from diagnosis until any treatment starts… That seems like a very long time?! Especially when it seems others are being rushed through.
This whole journey has been a complete mind-f*! so far!! My poor brain is fried!
Nic Nic
My chemo overkill starts on 4th Sept. I was told that a couple of weeks won’t make any difference but I think we just want it to get it started as the sooner it starts the sooner it’s done! I think we all worry ourselves too much but it’s normal! I had nightmares that it was spreading!
Regarding googling and forums! We all experience different journeys and side effects! Some are not as pleasant as others and some sound pain free but we can only deal things one at a time!
The rollercoaster and waiting isn’t nice but try to arrange a few things to occupy yourself with until chemo. That’s what I’m doing and it’s giving me time to prepare myself.
I’m sorting my wig, seeing friends for lunch,arranging to go to Maggie’s centre, stocking up on sweets, biscuits and dried fruit etc as I know we will be tired and won’t want to go out on some days.
Hope you start feeling better soon.xx