Hi Evie and once again thank you xx
@eeyore58 - am I right that you have your oncologist appointment tomorrow? If so I hope you get all the answers you are looking for - do take that pen and paper with you. I saw an excellent message today by @Slightly Lopsided in https://forum.breastcancernow.org/t5/Recently-diagnosed-with-breast/2nd-appointment-what-to-expect/m...
It made so much sense to me.
Sending hugs and strength to you. Keep us posted how you get on. Evie xx
Hi Charys, thank you for your reassuring reply, i had a letter from the clinic and she is going to ring with the results next thursday, so 6 more anxious days till then, i dont think i could feel much lower then what i am feeling right now and i dont know what to do to climb out of this rabbit hole 😞
Hey Eeyore, (again)
I'm so sorry you are still waiting on that punch biopsy. Its so difficult during this time to try and 'hear' the words we are told objectively, sometimes as the one diagnosed, and being in a tremendously psychologically challenging place it is actually practically impossible. We take tones and words in a way that they may not have been intended, and stress meanings in a different way than somebody else might have heard or even said them.The nurse said you are 'not being handed a death sentence', but of course it 'won't be good news for you' if you hear that it is IBC - and of course it won't be. However, That DOESN'T mean that you won't be treated and can't be treated, it DOESN'T mean that you won't respond well to any treatment and that it is effective - it might just change the plan. Thats what I would take away from what you've told me of your conversation with her.
I know that before results are through it is really frustrating for you/us as there is very little the nurses or consultants can say, and certainly nothing much they can commit to - as until the 'points are on the board' there is nothing concrete.
Hang on in there x
Thank you for your kind words eeyore. You’ll have easier days and tougher days, and you will find your own way through this, what helps you and what works for you. Be kind to yourself, and don’t beat yourself up for feeling negative. That is normal. I am exactly like that when it comes round to mammogram time - my thoughts start racing, and last time I burst into tears when I went into the room, even before the radiographer had done anything. We are human, we worry. I hope you can switch off and try to sleep. Evie xx
thank you again Evie, i will try and think positive, you always put me at ease, i just wish i could stay like it. X
Hi eeyore - I’m really sorry you are feeling so low, so can I start by sending you a massive hug 🤗 and reassuring you that you are not in any way “rambling on”. I know a hug doesn’t change any facts but I want you to know you aren’t alone with your feelings, everyone here will help you through this - and soon you will be helping others too.
I think you have to try to focus on the fact that your surgeon told you that he doesn’t think you have IBC. Also focus on the fact that the nurse told you that you do not have a death sentence - she may not have been as tactful as she might have been, but in her way it sounds as if she was trying to reassure you. You are in that strange limbo time when you are waiting for results and don’t have a definite plan in place, that’s hard as our minds naturally start to race ahead. But soon you will have everything mapped out.
One thing my counsellor suggested to me was to try to stop myself “going down that rabbit hole”. I found that once I had started down a rabbit hole it was very hard to stop, so she told me to imagine a door stopping me going down the rabbit hole. Any time I start to go down an unwise path I’m supposed to think of that door and shut it. I don’t know if that makes any sense to you, but I’ve found it helpful on occasions - not always of course, as sometimes I just knock that door right over!!
It’s really good that you are reaching out on this forum, and already you’ve seen all the lovely support from so many others on here all wanting the best for you. Keep chatting, any time.
Hi Cybele, thank you for explaining everything x
Hi Evie, thank you for explaining about the chemo cycles ect, i'm depressed atm, i cant eat much either, i rang my breast nurse yesterday morning because i was feeling really down and hoping for reassurance but i did not get any, in fact when i came off the phone after talking to her i felt even worse, i'm waiting for my punch biopsy result, which wont be with me till sometime next week, i asked her if my test came back positive for IBC, what is my prognosis, and i was disheartened to hear her say that it was not very good, that sent me into a panic straight away, i said so basically its a death sentence then and she said no its not, that confused me even more, iv'e been so down since thinking that i'm not going to survive, my surgeon said she don't think it is IBC and said as much to me on the day of my diagnosis, but as it has not been confirmed that i haven't got it, i'm thinking i have got it, sorry to ramble on, i cant see any light at the end of the tunnel at the moment.
I doubt very much there will be any horrible surprises: The oncologist is basically in charge of your treatment plan apart from the surgery, so deals with arranging chemo, hormonal therapy and radiotherapy - and the order in which you have them.
I had surgery first, and only saw the surgeon until I had recovered from the op; after that, all my main appointments were with the oncologist, or one of her registrars, until I finished treatment.
One thing I would mention is that before each dose of chemo you have to go to the oncology clinic so that they can check your neutrophils after the previous dose and sign you off as healthy enough to have the next dose. This is basically an administrative appointment, so you may get to see a registrar and not the consultant. I only mention it because i was unfamiliar with hospital procedure, so was very taken aback not to be seeing the consultant herself, but this is normal. The consultant will see you for all important important appointments relating to the stages of your treatment plan.
Hi @eeyore58 - your message made perfect sense. I seem to remember that at the first appointment with my oncologist we went through all the details of chemo, I don’t remember him telling me anything new - though that time is all a bit of a blur as I was in such a state of shock, as I’m sure you know all too well.
I also had an appointment with a chemo nurse to go through questions and where she warned me of all the side effects. Try to remember that they have a legal duty to warn you of all side effects so that you are fully informed before you give your consent - in these days they have to cover their backs. But that doesn’t mean that you will get all side effects. There are also lots of meds to help with the side effects, so always tell your team if you are suffering.
Take along a notebook on Monday with you with all questions and where you can write the answers too. One other thing I was told was to keep a diary of symptoms. This was helpful for appointments with doctors/nurses, but also allowed me to look back and read that whatever symptom I had did disappear. Does that make any sense?! Each drug is slightly different, but you usually have say 3 sessions of one drug, about 3 weeks apart. So if you feel horrible on say day 4 after chemo but better by day 6, then in the next cycle you can look back at your diary and know that even though you are again feeling rubbish on day 4 then you will feel better again by day 6.
Thank you for your post.
I am sorry you haven't had any response yet. I am hoping my response will help our members to see your post and share their experience and advice.
In the meantime, please remember that for any clinical questions our breast care nurses are here and happy to talk things through.
Hi Ladies, i have my first visit to oncologist next monday, i was told everything test results, diagnosis, prognosis ect.. from my breast consultant/ surgeon, what i was wondering will the oncologist tell me anything new, like... e.g horrible surprises that i wasn't told by my consultant, i will be having chemo soon so i take it, it will be to talk about that, im worried that the oncologist is going to add worrys to my diagnosis if you see what i mean, i hope you can see what i mean as its hard to write it down on paper so to speak.