Hi to all you lovely ladies.
Firstly, having read some of the previous discussions I’d like to say what an inspiration you all are and that you have all given me hope with this dreaded disease. Secondly, I’d rather not be here, but as I am I’d like to ask about treatments you have had or were recommended by your onc. I’ll give my history of BC 1st:
dx in Dec 2003. Had lumpectomy, rads, zoladex (2 yrs) and tamoxifen. No nodes involvement and very hormone receptive. After the 2 yrs of zoladex had finished my periods came back. Continued with tamoxifen and follow up appointments with consultants. I had a routine mammogram in Jan 08 which showed a lump on my original scar. I was due to have a mastectomy but CT and Bone scans showed a small area of secondaries on my right hip. Bummer! After the awful shock of this and eventually coming to terms with it I now need to get on with treatment. The cancer is still very hormone (both) receptive and Grade 2. I am waiting to see if it’s HER2 receptive but my onc doesn’t think it will be.
What I would like to know from any of you ladies out there who have had a similar experience to mine is what was recommended as your initial and maybe future treatment? I know we’re all different but it might make my mind up. My onc says I only need hormone treatment but my surgeon thinks I should have chemo (fec) first followed by hormone treatment as it has got into my bloodstream. If I need chemo to give me the best start then I’m OK with having it but I’m also aware it’s not always the best treatment for bone mets and would it be better to have it at another time when I may need it? If you’ve been in a similar situation what did your onc suggests?
Sorry there are loads of questions but it would help to know about your experiences which could help me get a wider view on the whole thing. I’m due to go back next week to see my onc with a view to starting treatment pretty much straight away.
Thanks for taking the time to read this. Hopefully I’ll join in with some other discussions later on - and not ask so many questions!
Nicky
Hi Nicky
Welcome to the forums, I’m sure the other forum members will be along very shortly to offer support and share their experiences with you.
I have added a link to a publication on secondary breast cancer of the bone that you may find helpful breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_bone_0.pdf
Kind regards
Katie
Sorry I can’t answer your questions, but thought I would leave a comment just to say how sorry I am that you are back again. I’m sure someone will be able to come in and offer some advice.
Hello Nicky, I’m sorry you have to join us but you will find so much support and information here.
My story is quite different to yours, I was diagnosed stage 4 from the very beginning, (bone mets) in 2003.
I’ve had excellent results from hormonal treatments and have had a monthly jab to stop my periods along with a bisphosphonate treatment (to strengthen bones) I’m only now about to start my first chemo, Xeloda and I still have no other organ involvement. I had hormonal treatments for years to maintain a good quality of life. I’ve been monitored throughout and if the need for chemo had arisen earlier I would have taken it. Good Luck…xxx
Hi Nicky,
Bummer indeed!! and you will probably not find many of us here with identical cancer and treatment - there is such variation. I was dx 18 yrs ago, had several new tumours and recurrences, and bone mets dx in 2002. I also had a lot of node involvement in chest, and neck so was on chemo and bisphosphonates. The chemo did not control the node problems and it was at this point they found I was her2 positive. So for the past few years I have been on just herceptin and bisphosphonates.
I think I would want to ask the oncologist why he was not offering bisphosphonates at this stage. I am also assuming you are coming the end of your tamoxifen 5 years? So is he switching the hormonal drug? It is a difficult one with the chemo - if you could have guarantees that a new hormonal would work life would be so much simpler!! If you do have chemo at this point you certainly have lots more options left if needed later on, but it sounds to me like it is Question Time for your onc. Do keep us posted on what you decide and how you get on.
dawnhc
xxxx
Hi Nicky
As everyone else has said – we’re all different – however your situation sounds very similar to mine!
My primary dx was in Sep 2003. I had WLE followed by rads, 2 yrs Zoladex, Tamoxifen. No nodes involved and was grade 2, er+ and pr+ but HER2-. I even had lumpy scar tissue which caused a bit of concern a couple of years ago but amounted to nothing. I was dx with secondaries in my right hip and pelvis last November. However, it was thought they were fairly extensive and so I had a total hip replacement in Dec. The orthopedic consultant was v happy with the surgery and it turned out the bone wasn’t as bad as originally thought. All the cancer was removed from my hip, I just have lesions in my pelvis. I had experienced a lot of pain which got progressively worse for about a year before I was dx. I was actually told in April it wasn’t cancer but arthritis, so I had carried on as actively as I could.
In terms of my current treatment. I was put straight back on Zoladex (also to try to protect my one sad little ovary through chemo – I haven’t had children yet and most likely won’t be able due to the nature of my cancer), came off Tamoxifen, had rads following the hip replacement and I’m now having FEC – I’m just over halfway through my course. I also have bisphosphonates – I take Bondronat tablets (I’m taking part in a trial) and calcium.
I’m slowly getting my quality of life back – something I never thought would happen when I first found out about my dx. Most importantly I have no pain. I’m recovering well from the hip surgery, apart from stiffness, I’m completely mobile, back riding my horse, walking my dog and taking on more projects at work. Though thoroughly enjoying being on mainly full-time sick leave! The FEC isn’t too bad. Just a week of feeling utterly lousy then I spring back into life and carry on as normal. I’ve even kept my hair thanks to the cold cap.
I have to say Belinda and Dawn and all the ladies on the secondaries forum are always a huge source of information and comfort to those of us fairly newly diagnosed. I’ve learnt a lot and feel like I’m slighty more in control of things by being fully informed of what treatments are available.
I hope this helps (do feel free to private message me if you have any other questions). I hope your next meeting with your onc is fruitful. I always drag my Mum along and she takes notes as it normally goes in one ear and out the other when I’m a bit stressed. These days i go in armed with questions.
Good luck!
Just to add, like a previous posting, I am on Zoladex, Bondronat and Calcium tablets. Radiotherapy to my lower back was highly beneficial. This has been for the past six months since it was found in my spine. It’s looking good but they are scanning me (bone, CT MRI this next few weeks to compare my images and decide next steps. If I have responded well to the above they plan to leave the chemo card for a later date… fingers crossed! My little boy starts school in September and I really don’t want to be seen as ‘cancer Mum’ on the playground when he starts.
Take all your questions to the Onc, they have your full picture and just go with what they say.
Take control over bits that you can… I walk regularly, do pilates and try to eat healthily (although I am a sucker for wine and chocolate!)
Wishing you all the best
Lou x
Thanks to all of you who have replied.
It’s interesting to see what else is going on out there!
I’m due to see my onc on Thursday and, by then, hope to be getting on with treatment. I have a few more questions to ask since my last appointment so can hopefully make a more informed choice and also make sure I’m getting the right treatment for me.
Thanks Rachel for all your input, the info about FEC and the cold cap were really helpful. If I go that route I’ll probably be back asking loads more questions 
By the way I’m based near Basingstoke and my onc also said the same thing about it being a chronic illness! Glad you’re feeling OK with the chemo, well as good as you can feel, and that you’re getting on with life.
I will let you know what’s going on after Thursday and will no doubt be asking some more questions. And Loulou I hope your scans are good when you go in a few weeks.
Thanks again
Nicky x