Hi got 1st appointment Monday with oncologist what actually happens , how long will I be there and what he going to tell me. I haven’t told my daughter I’m tn but just said i cant have hormone treatment . Will he go into detail quoting statistics about reacurrance will I have any tests (bloods). Sorry but just need to be ready forfor whats ahead ofof me .Any advise or questions I should ask? Ooh Im scared x
Hi
its only natural you will be scared.
If you have not had any scans yet he may arrange for you to have a bone scan liver scan etc to see if there is any distant spread as this could effect the treatment he gives you
My guess is he will discuss your treatment options which I would think will be chemo followed by radiotherapy, he will tell you which chemo he will give you, and how long it will take, and the possible side effects
Whether or not you have your bloods taken will depend on when he intends to start the chemo, if it is within the next day or two he will want the bloods doing, but I would imagine it will be in a couple of weeks in which case he will arrange for blood to be taken just prior to starting.
Different oncs vary to what statistics they give you, mine does not tell you of stats unless you ask him because he belives they are not useful, he says they are just numbers and anyone can be on either side of those numbers, so it depends on what you want to know.
Best of luck for tomorrow
Linda xxx
Does everyone have the scans,when do you get those results ? more waiting ! I had clear margins and sentinel node was clear too . Is it routine to have scans . scared and worried . X
HI I was dx in march multi focal tn. my first onc visit, he examined me, measured my lump. Explained what chemo I would be given, how it’s given, all possible side effects. I had to sign to say I agreed wi receiving the treatment. He also explained that as it was tn he wanted me t have a ct scan and a bone scan to be clear as to what they were dealing with. I did have to wait 2 weeks for ct scan results, which was torture. They saw a couple of blips on my lung and liver, said so small they weren’t sure what they were and that they will scan me again after chemo!! Great so had 4 months of waiting for that, which in the end they said was all ok. Whereas the bone scan results, the chap told me straight away all ok, as he could see how worried and upset I was and I asked him!
i won’t worry too much about your first visit, it is all just about explaining the treatment, and an opportunity for you to ask lists of questions, and don’t worry about whether you think they are silly questions, just ask anyway.
ive now finished my chemo, had a mx, done 3 weeks of rads and now out the other end…looking forward now to rebuilding my life, with the help of all the wonderful courses etc that the nhs offer.
p.s. make sure you go along to the look good feel better course, you get some fab cosmetics, Clinique, clarins all nice stuff.
good luck
Hiya - hope you are taking someone with you to make notes. I had problems remembering everything that they told me so I was grateful to have my husband with me. I had CT scan, bone scan, MUGA (heart) scan, and so glad I did. All showed no spread and a heart strong enough to take the treatments. None of the scans were painful, just time consuming and of course waiting for the results is pure torture.
Good luck with your journey.
oh gosh more waiting for results. My surgeon said I was cancer free.Do all bc patients have the scans orjust us tn ladies. Yes im taking my sister and daughter with me. I thought I was just going to be told about chemotherapy Ill receive and wnen. Worried all over again. Thank you for your replies. x
I had WLE in September, clear margins and no nodes. Mine is ER+ HER- but as it was 2.5cm I was offered chemo and have now had 4 out of 6 FEC. I have not had any scans or any other tests nor have any been recommended.
Hi Jayne Im not very up on these things but being ER+ will you be able to have hormone treatment. Just about fed up with all the waiting and worryingrrying. x
Yes, I will have rads when I finish chemo then Tamoxifen for 5 years. The waiting is definately the worst part, once you know what you are dealing with it is so much easier (not that any of this is easy of course) and you will, hopefully, get back some feeling of control.
Hi Tomorrow will b…
I’m TN and despite 2.5 cm tumour with satellite tumours, 5 affected lymph nodes - one with extra nodal extension, plus vascular invasion I wasn’t offered any scans other than they did an ECG to check my heart before starting chemo. They also did a blood test first. They need to record your blood count throughout so they check the day before chemo and then again after about 10 days to make sure you’re blood count is good enough to have treatment as it really hammers your white cells which help to fight infection. But don’t worry, I found that these nurses are brilliant at taking blood with as little pain as possible - they so proficient at it.
I was given a report (just a sheet of A4) which gave my diagnosis, which treatment they recommended and prognosis - he told me if I didn’t want to know my prognosis to fold over the bottom third of the sheet so I couldn’t see it. However, the top section said, “NPI 6.5 poor prognosis group”. So I kinda new without looking at the bottom which showed statistics. I would have looked anyway though. But as my consultant says, Lies, damn lies and statistics. And as Lindsyloo says, you can’t predict which side you’re of statistics you’re going to fall on and they are all based on old data and the treatments we have had, or are about to have, are more advanced. The report also said what radiotherapy I would have. I had FEC-T (6 x FEC, 6 x T) and 15 radiotherapy sessions.
I understand your fears of the unknown and the whole waiting game. It’s frustrating when you just want to get on with it.
Best of luck with your appointment.
Flori
X
PS I take it you’ve named yourself after the song by the Secret Sisters - it’s a lovely song, isn’t it.
Hi ,well feeling much better now its just the thought of more tests then waiting again for results,just want to getget on with it nownow, its been so long since diagnosed28th sept im beginning to think its all a bad dream!
Yes Flori your right it is from thethe secret sisters . My daughters a big hunger games fan and the day i was diagnosed played it for me…so fitting .Lets hope tomorrow will be kinder for all of us . Thank you all for your replies. Will let you know how it goes x
Hi TWB
I too am TN had WLE and SNB all clear. I never had any scans either. 1st onc appt was just told what chemo and rads was to have and was also given sheet with prognosis and % of it coming back etc, but as already said onc told me not to worry about statistics! Easy for him to say lol! I had ECG to check heart before chemo which I finished last year.
Good luck for your appt I am sure it will be fine. I forgot to write down any questions but onc was lovely and really explained everything in clear non medical speak so hopefully yours will too!
Jill x x
Hi TWB
I too am TN had WLE and SNB all clear. I never had any scans either. 1st onc appt was just told what chemo and rads was to have and was also given sheet with prognosis and % of it coming back etc, but as already said onc told me not to worry about statistics! Easy for him to say lol! I had ECG to check heart before chemo which I finished last year.
Good luck for your appt I am sure it will be fine. I forgot to write down any questions but onc was lovely and really explained everything in clear non medical speak so hopefully yours will too!
Jill x x
Thank you Jill. Just when I think Im getting there I think of something else and the worry starts all over again . Really down today. X
Hi all, just had phone call from hospital chemo starts January 4th FEC X6 . Nervous, but lets get the ball rolling. xxx
Great - you have a start date. Enjoy Christmas and prepare for the new year. Lots of help and advice available and if you haven’t already done so - then join the “starting chemo in January” thread. I am still in regular touch with all the wonderful ladies out of the August 2011 group and we are all going strong.
Thank you supertrooper,could you recommend things to take with me fo my treatment ? My head is spinning. Many thanks. x Pat x
Hi Pat - I’m dipping in here but I’m sure Supertrouper will be along with advice also.
Based on my experience and advice, I would take a bottle of water with you because you need to drink plenty (and then pass it plenty) and it was also suggested to me to take a packet of crisps - not sure why but I did it anyway - should have asked really, but there you go. With FEC, the nurses injected it into the cannula so there wasn’t really the opportunity to sit and read a book. There’s Fluorouracil, Epirubicin and Cyclophosphamide - one of them is red and will turn your urine pink (so don’t panic). The whole thing took about an hour and a half. They’ll monitor you and will explain it all at the time, what’s happening, what you need to do and they’ll give you a chemo book to record any side effects and they’ll fill in your blood count readings so it can be monitored throughout. You’ll be given meds to take and I would recommend writing up a chart of what to take when because it can be quite confusing. Also, unless you’re really good at swallowing tablets, don’t try what I did - I thought I’d try taking a whole batch of 8 at once (as I hate swallowing tablets) and it was not a good idea…
A friend of mine was rather stunned when I told him that I quite enjoyed chemo days! It wasn’t the bit with needles and toxic drugs obviously, but the social side of sitting chatting with the friendly nurses and other patients. I really found it quite relaxing.
No point saying anything about afterwards because we’re all different and it’s just a case of wait and see how it affects you. And of course there are different doses.
Best of luck. I’ll be thinking of you on 4 January but in the meantime try to enjoy Christmas as best you can.
X
Thank you Flori, what a lovely post and very helpful. I won’t be trying to swollow 8 tablets at once ! maybe 2.Will definitely try to have a fun Christmas. Hope you enjoy your Christmas too . Many thanks
Pat xxx
Hi Tomorrow will be …
How are you getting on with FEC. Due to start FEC75 in February. I am TN 8mm tumour (very small) but surrounded by large are of DCIS.
A bit scared - any advice would be appreciated.