As you know I was given the diagnosis of bc on Monday this week but have not got to return to the hospital until Wednesday 9 March for the plan of attack to be discussed with me and the date for surgery to be confirmed. My question albeit slightly jumping the gun is what comes first, Chemo or Radiotherapy, if this is required?
Sorry to be such a nuisance asking silly questions but I just cannot stop thinking of it all and information is so limited at present. I am really struggling to cope at the moment day to day and hour to hour. The waives of emotion are driving me crazy, laughing and ok one minute, tears and tears the next, is this normal???
Did anyone who has been through this find the waiting time to be a time when you cannot function properly? I am struggling to concentrate on any task and feel exhausted all the time. I then feel guilty for being this way and feel people will be getting fed up with me!
You are not hopeless, you are just getting a crash course in bc and it’s treatment. Not everyone needs Chemo, it will depend on the type of tumour you have and equally not everyone has rads. Some women have surgery first and some have it after Chemo. I am sorry I don’t know what information you have had so far in terms of estimated grade, spread, size or receptors. But these will be the the pointers that determine treatment. We each have our own bespoke version of cancer and the treatment is determined accordingly. I completely understand your hour by hour roller coaster. I would suggest you phone the helpline with what you do know, or contact your BCN to find out as much as possible.
Chemo usually happens if you are younger, or grade three,have a large tumour they want to shrink, or triple negative, or her2+ or have evidence of spread to lymph nodes.
rads happen if you have a lumpectomy, not clear margins, near chest wall, lymph involvement ( capsular invasion/ spread) am sure there are probably other reasons too.
Please continue to ask questions. You have a long wait.
Chemotherapy normally comes before radiotherapy. Don’t jump the gun, you may not need either. Sometimes chemo is given before surgery to shrink tumours. Radiotherapy is after both.
Take a deep breath and try to do some fun things/ keep busy while you are waiting. It will be easier to deal with when you know exactly what you are dealing with. We’ve all been there worrying in the waiting time.
i know just wot you are going through as i was told only last week i had bc but the next test have shown up inconclusive so have to go through it all again i have ask wot next and untill they get the next lots of results they carnt really say so i dont know wot will happen was told as im only 41 it will more likly be lump removed and then cemo hate this waiting game but we need to be strong
Tracy - you made me cry, PLEASE don’t feel you are being a nuisance, we have all been where you are now and it’s frightening place to be. Everything you say and are feeling is quite normal - tears, laughing and more tears. Waiting and the not knowing is the very worst part of this whole BC lark. I couldn’t function properly at all - I just tried to keep busy, watched loads of crap tv, cleaned the house and went into work. It’s hard, but I just wanted time to pass as quickly as possible.
You will have loads of questions, your breast care nurse will be able to help with all these ‘silly’ (although they are so NOT silly) questions and the helpline on this website is brilliant if you need to chat. Just remember you are not alone, we have all been in the place you are at the moment, as soon as you know what your treatment plan will be, you will feel calmer and be able to ‘get on with it’.
Usually, it’s chemo first and radiotherapy - you may not need it though, try not to think too far ahead - try to keep off the internet - use this forum instead, there are hundreds of us out there with you.
Thinking of you, never feel guilty about your feelings, NO ONE will get fed up with you.
hi i was diagnosed 3 years ago, with me it was lumpectamy , chemo, rads then herceptin. the best advice i was given (and it may seem obvious) is to take each step at a time. dont rush ahead of yourself. good luck with your treatment.x
Hi Tracy it is a pity that you were not given at least an idea of what to expect when you were dx, even if the details needed to be confirmed later - I was very lucky and was told that it was pretty certain I had bc, and would need surgery then rads at my first appointment at the breast clinic. This at least gave me an idea of what was to come (even if it didn’t actually work out like that!). It also helped that this was in the run up to Christmas (confirmed dx and plan of attack was 23rd December) and I was very busy at work, but I still varied between anger/tears/disbelief for at least a month.
The waiting is so hard for all of us, and unfortunately this doesn’t change as we progress along the treatment path. Please just keep asking us questions or call the helpline whenever you need to.
Try to prepare yourself a list a questions before you have your appointment and either take someone with you or write down the answers, as it can be very hard to take in all the information at first.
Lots of hugs to you
Sue xx
Ask as many questions as you need. Some of them on here, some of them to the breast care nurse, some to your specialist, depending what the question is.
The first thing that might help you get your head round is asking your BCN to go over the results with you. When you had your diagnosis you were probably totally spaced out by it all and I bet you didn’t take in ANYTHING after the word “cancer”. Ask her to go through it with you, and have a notebook with you (or beside you if you’re on the phone) so you can write it all down. That will give you a much clearer idea of what’s likely to happen.
Once you’ve got some basic information you can take your time to try to get your head round the implications of what you’ve been told. And ask anything you like, there is nothing silly about something that worries you.
And the Helpline on here is a terrific resource, so use it, they are lovely.
Hi
I would echo everything the others have said already. The waiting is by far the worst bit but once you have a treatment plan and some dates you will feel a bit more relaxed. The expectation is far worse than the treatments.
Mood swings are quite normal. I’ve had more up days than down as I tried to keep working as much as possible so I wasn’t constantly thinking about cancer. But you wouldn’t be normal if there weren’t some times when you need a good cry.
Don’t be worried about posting here a lot or asking what you think might be stupid questions. We all know only too well what that feels like and are here to support eachother.
Good luck
Debs
x
All I have been told so far is it is definately bc but it seems from the ultrasound that the nodes are all clear under arm. I am told this is a good sign apparently. I was told that the op should take place within 10 to 14 days after my action plan is given to me next Wednesday. Told I will probably be give the option of lumptectomy but also mastectomy if I wish. I have no idea what the size or grade is yet but I guess this will be next week. I am sure she mentioned radiotherapy during the discussion but it is all a bit vague. My husband is a great support and was with me and will be with me at the appointments etc so he will ask questions.
The other issue I have is I am actually registered disabled and not working at present as I have an upper and lower spine scoliosis which I have had all my life but I am on the waiting list for very major spinal surgery this year to try to straighten the upper spine 25% to enable my ribs to be removed from resting on my pelvis and allow my organs particulary lungs to function properly. This is worry enough so to now find I have bc really has been the icing on the cake for me.
Oh and if that is not bad enough I celebrate (or will at least try) my 46th birthday tomorrow, not the best present I have ever received!!!
Thank you all so much for being there, it really does help to know so many people care.
I was told that if they carry out a lumpectomy instead of a mastectomy it then it is usual to have radiotherapy, as there is breast tissue left. I was also told that the odds of recurrence are the same for mastectomy or lumpectomy with radiotherapy.
The chemotherapy question was left until after the lumpectomy when they had had a chance to analyse the tumour, unfortunately it came back as grade 3, triple negative, and that combined with my age (34)meant that I had to have chemo.
Hope your birthday goes well. It was mine yesterday, and everyone was really nice, but it didn’t match up to my plan of spending my birthday in the Caribbean, which was going to happen until all this kicked off.
Fingers crossed that your treatment plan isn’t too bad, but if you get the full works there is plenty of support out there to help you through.
J
Happy birthday, Tracy. We’re all going to have birthdays during this cancer crap, it’s not a short process. Christmas was pretty much the same for me as your birthday is for you, as I was very recently diagnosed and was still waiting for results of assorted tests. I would rather have just crawled off to bed for the day and let it all pass me by, but that’s a luxury we’re not afforded.
It looks like you got a preliminary result from your first clinic appointment, did you get told that on the same day you had your mammo and biopsy? If so, then they probably won’t have your full results yet. The nodes looking good is FANTASTIC news, and that will sink in gradually as you learn more. I hope that continues to be the status of your nodes, as that means that it hasn’t spread anywhere else, and even if you have to have chemo you’d probably end up with the slightly less tough version. Small consolation I know, but any consolation is worth hanging onto.
Yes I did get told on the same day as the mammo and biopsy in fact as soon as mammo was done the Consultant Radiologist who was going to do ultrasound etc said she had just spoken to Doctor who felt I could take the information that it was cancer. It was then she thoroughly checked under the arm and confirmed it was clear so yes good news.
Full results next week, want Wednesday to come round quickly but on the other hand I don’t.