I’m completely confused - saw ONC last Tuesday who said my CT scan was clear but bone scan showed BC had spread to bones. I was put on tamoxifen and ONC said I would be having radio therapy together with the injection once a month for bones. Today however I have come home to appointments relating to chemo - they have my name on so not a mistake. Can you have chemo, hormone treatment and radio theraphy all at the same time - that is what it looks like to me - very confused and even more frightened as ONC didn’t mention chemo at this point.
I am seeing the ONC in the morning - this appointment was supposed to be in the radiotherapy outpatients but on this tatty printout I received today it says oncology treatment.
I think that you may find that the treatments that you mentioned are classed as ‘oncology’ - it isn’t just chemo, but the whole cancer treatment that is called ‘oncology’!
I have the monthly Zometa (bone strengthening infusion) at the oncology dept. All of my treatments hormones - Letrozole and the Zometa are under the guidance of the oncologist.
I also have bone mets, yet am not having chemo. From listening to others on here it is common for bone mets to be treated with ‘just’ bisphosphonates and hormones (if not triple neg)
Hope that your appointment goes OK and that you don’t end up with chemo!
Helen, yes we will do the rads together if that is indeed what I shall be having, if you see my previous blog I’m not sure now - seeing ONC in the morning to try and clear things up - it would be nice to have a clear idea of what treatment they intend me to have! Nicky thanks for the information about oncology departments but the confusing thing is I have consent forms for radio therapy to take in tomorrow (handed to me by the ONC last Tuesday) and a printout and letters stating next week I’m to attend a ‘chemotherapy clinic’ and ‘long session chemotherapy’. Do you think they have just got things a bit mixed up and should I worry?
I was reading your post again and found it very comforting, thank you. That obviously seems to be what we all feel when told about secondaries, thats it, we’re finished! But obviously this is not the case now, perhaps 30 years ago it was. I was also thinking about you not having sites such as this when you were first dx, we must be thankful for that at least and the good advice we can all find here. Thank you again.
Grrr… I posted quite a long reply then went to check something and ended up losing what I had already typed!!!
So myfanwy I was answering your post! I will try again. Like Val (scottishlass) I really don’t know how those of us diagnosed long ago managed to get through it all without the backup of forums like this. I do remember when I was dx with bone mets that i had weeks before I would end up in a wheelchair and probably just months before I died :(. Like I think you said (only I dare not go back to check or will lose this) the staggering thing was I didn’t even feel ill. From what I read myfanwy am I right in thinking it was recently that you had a mastectomy? because normally most of us would have chemo either before or after the mastectomy. It may be that they are working out the plan of action for your following treatment. Did you have radiotherapy after the mastectomy or is that what is now being arranged? Then because you are hormone positive you will get tamoxifen. The bisophophonates are to help with the bone mets and then chemo would be to mop up any nasty bu**ers that might be roaming around. It’s a long haul ahead of you but you have us all here to talk to and be there to hold a hand whenever you need it - and let’s all hope you have a long life ahead of you yet once this is all under control. Hope I haven’t confused things even more just that I wasn’t sure when your first diagnosis & mastectomy took place.
It was lovely to get your message. I found my lump at the end of July and dx with BC early August. Had my operation to remove my breast and subsequently nodes towards end of September. I had my scans mid October and was told about the bone mets day after bone scan and put on tamoxifen. Another week passed and I saw my ONC again when she said I would need radio therapy treatment and possibly chemo later on. A week on I now don’t know what to expect when I meet my ONC tomorrow, thought it was just to get marked up for radio therapy but not sure now I have received all the paperwork regarding chemotherapy. Still no date to have monthly bone injection. I’ll let you know tomorrow. All a bit scary at the moment.
Hi Myfanwy, I hope the ONC is able to put your mind at rest tomorrow so that you know what treatment they are planning for you. Do you have a Breast Care Nurse at your hosptial because if I am confused or incertain about something I find that she can usually explain things to me and if she doesn’t know she will try her best to find out. The uncertainty of it all is really difficult and waiting for results is just the pits. We know how you feel. Hope all goea well tomorrow. Let us know how you get on.
Hi dawn, Hope you are doing ok at the moment. I am knackered tonight but it is because I was up extra early taking my Dad for a lumber puncture. No results from that for 2 weeks approx. Had to go for a nap when I got back and than had dinner. But am just as tired again now. Much love Val
Thank you so much for all your help, it really is appreciated.
Having seen the ONC this morning my treatment is as many of you ladies thought, tamoxifen, bisphosphonates and radiotherapy. The references to chemo were just sent as a matter of course. Feeling a bit better now.
Hope everyone is having a reasonable day - its a beautiful sunny autumn day where I live - what about you?
Helen, my rads start on the 24th - blog to you later.
Also I was reading on this blog that taking calcium, Vit D and magnesium supplments is a good idea - I asked the ONC about this and she also thought it was a good thing to do. Any other suggestions for supplements? I’m drinking lots of green tea as I’ve read it may be helpful.
Glad you’re a bit less foggy about things, Myfanwy. It sounds like we’re together with drugs too. I’m on arimidex. It’s a bit like tamoxifen but for ladies whose ovaries aren’t working. Also herceptin every three weeks along with pamidronate which helps to strengthen bones. My cancer markers show it’s all working rather well so lets keep shovelling the tablets in.
The scientist in me finds this all very interesting. We really are an amazing machine. I’ve needed to know how all these drugs work and it’s fascinating. I’ll not rabbit on about the science as I don’t know if any of you are “geeky” like me! But the way pamidronate works involves calcium and I too have heard that calcium supplements are good. I’m afraid drinking green tea is like sipping pond water though!
My mum seems to have improved. She took my dx very hard but she seems to have shook off her depression a bit and is now being referred for a new knee. Go Mum!
The west country has gone cold now and the winter seems here today. The hedgehogs in the garden have stopped coming for food so must be hibernating. I know it’s winter now cos I got my Christmas notebook out today and started planning.
Thanks so much for asking after me a few days ago. Sorry for the delay. My pain medication was far from sorted, but is now. Phew. I feel like a new woman!! I can actually do things!! I have a week till the op so will now be able to prepare properly and sort out everything. However, I have been told NO LIFTING, BENDING or CARRYING!! It is amazing what you can’t do with these restrictions – but I’m sticking to them!! I can’t risk it as they said it my permanently damage my nerves and I don’t want that!! In hospital again on Friday (tomorrow!!) planning what surgery to have – an impossible choice. A massive op with better chance of a good outcome but big risks, or a smaller op (still 4 hours on op table!!) with poorer out come but smaller risks (e.g. walking again, nerve damage etc) I sometimes feel like I’m in a film or a soap opera with these massive decisions having to be made – and then the dramatic music starts!!
Hi Ladies, hope you dont mind me joining you. Just heard yesterday that my recent MRI has shown a spine tumor and will find out shortly what happens next - rads, chemo, op ?? Feeling ok about that but the onc also wants a CT scan asap to check organ spread - that seems far more scary. Have read back through some of the posts and there are lots of us in the same boat so I hope we can all help each other get through whatever life throws at us next ! Keep well everyone x
Evening Ladies,
Wasn’t going to check tonight but my fingers just strayed towards the laptop!
Welcome Debonair7! I’ve only just joined in and feel much better for knowing there are others out there going through the same stuff.
Will think of you tomorrow, Sadie. I’m sure you’ll decide the right thing for you. Life is indeed a soap opera or, as Ronan Keating said “life is a rollacoaster, you just gotta ride it”
Love Helen
Helen, I love your expressions, ‘keep shovelling the tablets in if they work’ - I’ll always keep this in mind and it will make me smile.
Where is that Sadie - today was decision day - have we heard - no! Sadie, hope the glums haven’t got the better and we all hear from you soon.
Deb, when is the CT scan? Let us all know - everybody on this site has really made it possible for me cope and get through day to day on a reasonably level plain.
Hi All!! A ‘Sadie’ update, but has to be brief. sitting is really painful now with the vertebrae crumbled! Sort of controlling the pain - ish! Op on Thursday to remove tumor and vertebrae – massive op, but smaller than original plan (6 hours not 14 hours!!). Less risky but will spill tumor cells, so radiotherapy important afterwards! Best Wishes to all – sorry I have not read everyone’s posts but thinking of you all!! If you can spare a thought for me 9am on Thursday, I would be grateful! Thank you and I will post again after op, but it will be a while.
Just seen your post. All the best on Thursday. 6 hours op still sounds pretty long! But it will be worth it if it does the trick. Hope the rads afterwards kills any cancer cells that’s escaped the knife.
We’ll all be holding your hands and with you in spirit by your op room.
Take your time after the op and update us in your own time.
Dear Sadie,
Thanks for update. Will be thinking of you Thursday and praying if thats ok. Enveloping you in safe and positive thoughts. Hope recovery is quick and you’ll soon be back on here telling us how well you’re doing!
Lots of love Julie x
Hi ladies
Hope you don’t mind me joing in. I’ve just been told my liver tumours are getting bigger, after 4 x A+C chemo. Now having to change to Taxol, on a weekly basis. Of course i’m worried but, the thing I don’t understand is that i feel better than I did when I first started??? Tumour markers have come down too. Why is it that I feel so pathertic and helpless?
love to you all
JANE X
hi Jane,
You’re not pathetic, it’s a tough blow when you get news of setback so no wonder you’re feeling fragile. This blasted desease is so difficult to try to understand it’s so confusing when tumours grow but markers decrease, however the next treatment will hopefully kick in very quickly and get you back on even track. Cyber hugs to you, Julie x
Thanks Julie… I have lots of love andd support here at home but as you know, unless you are actually experiencing the disease or treatment, you do feel very alone, particularly after a set back. I do try to stay positive, keeping myself busy and trying to ‘be normal’ doing ‘normal things’…dammed hard though… I wondered if anyone out there had had weekly chemo and wondered what i should expect? Will I have to be extra carfeful regarding infection, should i stay away from the world and his granny?? Is it worth buying those new christmas shoes??? So many questions…sorry,making myself depressed (LOL)!
Anyway, things will start rolling on Friday, will keep you all informed.
Sadie… Hope your op goes well…and will be thinking of you and wishing positive thoughts
Hugs to all
Jane xx