Hi
I’m new to this site and forum. Was using Macmillan but didnt get many responses, someone recommended to try here.
Primary BC was 1999, all clear until recently. Found to have fluid build up on lung which was drained and BC cells found. CT scan and Bone scan followed which showed to be ‘unremarkable’. I was offered PET scan which I took up but not expecting anything due to previous scans.
Sledgehammer between the eyes moment when consultant explained results of PET scan. 2.5cm tumour in lung with other nodes found. Also in several bones. I was shocked, stunned and unable to take it all in.
My treatment plan remains the same - push into menopause with Zoladex and daily Arimidex. Now booked for bone strengthening treatment.
I am at a loss what to think, do, say. Looking for some words of wisdom, help, support, anything! I need a positive path!
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good support as the many informed users of this site have a wealth of experience and knoweldge between them.
While you are waiting for replies, could I suggest that you give the helpline here a ring and have a chat with one of the team who are here to give you that extra support. Calls to the helpline are free, 0808 800 6000, lines are open Mon-Fri 9-5 and Sat 9-2. I hope you get the support you are looking for on these forums.
Sorry to hear your bad news - you will be in shock at the moment, its a lot to take in after being clear for over ten years.
I am sure others will be along soon who have experience of what you have been diagnosed with but until they arrive I just wanted to leave you a message to say you are not alone. You will have a lot of support from everyone in this forum. I log on every day and post up how I am doing - for my own records and also so that others that follow a similar path can get an idea of what lies ahead.
If you want a strong virtual hand to hold then you can hold mine, I am quite a spiritual person and a great believer in the power of positive thoughts. However, I have handed over my life to my Oncology team and soon my body to my breast surgeon.
Try to stay positive - there is so much that can be done to treat cancer now - it is no longer the death sentence that it used to be!
Come back and let us know how you are getting on, read some of the threads but be careful about which ones to read. We are a good bunch of fighters and survivors in here.
I would like to give you the warmest of welcomes to the forum that no one really wanted to be a part of.
I do know what you mean about MacM Site - to my mind it seems to be more full of supporters & carers than those with cancer, plust the fact that it is covering all cancers so it is hard to have your voice heard there.
You will find a lot of support here, and I hope, a lot of positive support. We are a bunch of women (mainly) living with bc. It must have been one hell of a shock after saying yes to the PET scan to have even more spread discovered but what a good job you did. I don’t have any experience of 2ndaries in my lungs, but was diagnosed a long time ago - in 1990 and only got a 5 year break before things kicked off again with a primary recurrence every year or so. 2ndary dx with extensive bone mets followed on in 2002. As Debbie says there is much that can be done now to treat cancer. I have also found that thanks to the new drugs that came along - herceptin particularly for me - I have been able to live with a reasonable quality of life for quite a good few years now.
It is hard when that sledgehammer hits you to believe that, but I hope as you read our stories and chat to us here we will all be able to give you hope for the future.
Sorry to hear your news & that you have had to join us, but I’m sure you will find these forums really helpful, and the ladies on here offer great advice & support to everyone.
I was in a similar situation to you 18 months ago - was suffering with pain in sternum & top of leg, but CT scan failed to show up anything remarkable, except for ‘unspecific changes’, so like you I was advised to have a PET scan, to ‘put my mind at rest’. The results of the PET scan showed bone mets in 4 places - again, like you, I was completely stunned.
Anyway, that was over 18 months ago now. I had a period on Zoladex & Femara, which stabilised everything for 6 months or so, then I had a bit of radiotherapy, but due to some small areas of progression I have had to resort to chemo again, which I started in August. I am hoping that my next PET scan in August (this will be my 7th!!!), will show that my bones are stable again.
I hope that your treatment plan gives you stability again & that you get the help & support from all the lovely ladies on here that will help enormously.
Hi H
Sorry to hear your news, I too was shocked when cleared to hear it was back. I spent about 3 weeks crying but now it’s nearly 3 months since I was told & I’m just getting on with things I have had a few set backs but wake up each day glad to be here.
I had a brain haemorrhage prior to my original BC dx & then I said to myself there are always people worse than you are - I believe this & remember it daily. Be strong with your BCC friends it will ease your anxiety and we will at times make you smile & you will get amazing support
So sorry to hear your news it must have come as a terrible shock given so many years have passed since ur primary dx. Really hope the hormone therapies get things under control for you. There are many ladies on here who have lived for many years with secondaries so there is hope
My onc has suggested a pet scan but I’m a bit nervous about what it might show. I remember another girl on here who had a clear ct but then a pet showed multiple lung mets just a few weeks later!? Can I ask how many weeks/ months was between the ct scan + the pet scan? Did u have the contrast injection with the ct scan? Seems bzarre that a 2.5cm mass was missed!? I’ve had a wheezy chest for several weeks + my ct last month was clear- can’t help wondering if it’s missed something, although I hope+ pray it hasn’t…
All the very best do keep posting we all have our fingers crossed for u xx
Hi,
Yes it is a terrible shock isn’t it! But you will find a way to cope.
My primary was 1999,had a few little scares which turned out to be nothing, then started to get pain in ribs, after a good 18 months complaining to GP had a CT, nothing, 6 months later another CT, bone mets!! That was March last year, so like you a long time after primary and beginning to believe I’d beaten it.
Am on hormones (Leterzole/Femera), Zometa (IV Bisphosphonates)and had a couple of blasts of radiotherapy. Still get the odd wobble but generally manage to get on with life. This site and the wonderful women on it are a Godsend. I hope you get as much out of it as I have.
To Debbie, Dawn, Dugsy, Jo, Gingerbud and Julie D - all the lovely brave and wonderful ladies who replied to me - a huge thank you. It was the boost I needed to know that there are people out who dont know me but willing to talk to me and offer their unconditional support.
I had a rubbish day yesterday with lots of tears. By the evening I was worn out! This morning I feel A bit better. I know I just need time to come to terms with this latest news and get on with my life.
Gingerbud - the gap between CT and bone scan to PET scan was less than 2 weeks. So not enough time for huge progression of condition. I did have the contrast dye with the CT. I dont know how the 2.5cm mass was missed. Something I need to ask my BCN perhaps.
Only you can decide whether you go ahead with the PET scan. Although my results were a shock, I am glad I know now and my plan was adapted to include bone strenthening treatment. These findings can also be my check points when I have next follow up PET.
Thank you again to you all for sharing with me and just being there!
Hi HelHel,youve been hit hard, now hit back,grab each day as it comes, deal with it as best you can,above all have hope, it was more than two years before I could look to a future, its not been easy but here Im nearly five years down the line since my secondaries were found,lungs ribs spine and srurnum, just had a little blip,last week,some spread,but lifes good, you can cope with this,you have to be just a bit more determind to do all the things youve dreamed of, me, Im 69 tomorrow and planning a trip to India, havent thought about how to pay for it yet or how much the insurance will cost,at the moment its just a great idea but Im working on it! Good Luck keep posative lv Ozzie
Sorry you have found yourself here but as others have already said, it’s a place of great support where there is always someone ready to share their experience and keep you hopeful and motivated.
I have been coming to the forums here and at breastcancer.org from the time I was diagnosed with stage IV in June this year, and have found them invaluable as I have had minimal support from my oncologist or breast care nurses.
I went along to the ‘Living with Secondary Breast Cancer’ day organised by BCC in Birmingham last week (they run at different sites throughout the UK) and would highly recommend what was an excellent and informative day.
Accept that you will have good and not-so-good days and take each one as it comes.
Hi, I’m sorry you have to join us but welcome to a mine of info and support from us living, with the emphasis on LIVING with secondaries. I was diagnosed stage 4 from the very beginning when my hip spontaneously fractured. 8 years later, and with a hip replacement I live well albeit I’m on constant treatment but life’s good, life’s precious. My bones are now in better shape than they were when I was diagnosed. Take time to adjust, it’s all ups and downs but we all seem to get there, we all move forward in our own way…x
Hmm trying to post a helpful link for those newly diagnosed but it’s not pasting at the moment I will keep trying.
Ooops, think this will work. An inspiring read, still read it when I feel the need, Australian women living with secondaries.
Thanks for the info helen. It’s so scary that a ct scan could miss something so significant! I’ve spoken to my oncs secretary about my concerns + my new painful lump in my neck + she has agreed to see me on on Tuesday. I will pushfor the petscan- don’t think she will object as she brought it up. Fingers crossed there aren’t too many surprises in store 4me…
Take care xx
Thank you all for your kind words. Since the sledgehammer blow on Monday, I have cried then dried my tears and thought OK, this is bad, but there are people worse off than me. Had a chat with myself and have had a pretty good week. Had some accupuncture to help with some pain that might be transferred pain. That is helping now and I dont feel as bad as I had been.
Ive seen my GP who has signed me off work until early November while I get my self together. My surgery have been very supportive. Also had chats with BCN who is just lovely.
Not looking forward to bone treatment Monday, but know what to expect now, so will deal with that and get it over with.
Had cheque in this mornings post for £300. Payment from private health care for stay at NHS hosp. I can find a good use for that!
Special msg for Gingerbud…my thoughts too that scans can miss but I dont know the technicalities of these procedures. Despite what it discovered, I am glad I had the PET scan. I’m glad too that you are discussing this with your cons. I really hope there are no surprises for you either. Be thinking of you for Tuesday appt and hope you update me.
Hasnt the weather been beautiful this weekend so far? I’m in the South-West. Lovely to be able to sit in the garden.
Hi!
I had a mastectomy followed by extensive chemotherapy and radiotherapy in August 2008. Everything seemed to be going fine and I was down to twelve monthly check-ups (though some people found it a little odd that all the check-up consisted of was a feel around the area of my breast removal and a mammogram on the other breast). The last check up was a couple of months ago and a few weeks later I developed a chest infection which after three lots of anti-biotics they couldn’t shift, I could hardly breathe, so they drained my right lung of two and a half litres of fluid. They performed a pleuridisis to re-fix my lung to the chest wall and the fluid they’d removed contained breast cancer cells which were also found in the area between my breasts (can’t remember the medical term for that part of the body is called!) and after scans it’s also been found in my bones!
I’m terrified but whats really scaring me is although theres no excess fluid in my lung I’m still very breathless after only walking from one room to another, I also find I’ve no appetite and it keeps feeling as if somethings stuck in my throat all the time and I’m finding it very hard to cough up cataarh.
Is there anyone out there with similar symptoms? I’m going for a detailed MRI scan tomorrow.
Bowders,
Can’t help with your symptoms I’m afraid but I think there is a lung mets thread which you might find useful.
Just wanted to say that I hope the MRI goes smoothly tomorrow and you will get a better idea of what is going on and what treatment plan you will have. I’m sorry you’ve had such awful news and it wil take time to take it all in but when you have a clearer picture you’ll be able to start preparing yourself emotionally. My thoughts are with you
Helhel,good luck with first zometa tomorrow am sure it’ll be fine. Yes lovely weather here in Sussex too
Ozzie that was a great post really cheered me up and made me smile, hope you had a lovely birthday!
Gingerbud, will be thinking of you too, hope scans go well and no nasty surprises, let us know how you get on.
Hi Bowders. Just wanted to say that I had this procedure done about 6 months ago, and I too, was left very breathless up until fairly recently really. Most people at the hospital have said that it’s quite normal, so I wouldn’t worry unduly about that aspect of it. Good luck with it all
Any kind of cancer aside, your body has been through some pretty major stuff recently and a serious chest infection is always going to make you feel wiped out.
Just like you wouldn’t expect to go jogging after a hip replacement, you need to give your lungs time to recover.
Hope the MRI went well and you get the results soon. Keep us posted…
Have had my first bone infusion. Unremarkable procedure despite me being as strung out before hand as a violin string!
Felt fine during and after.
I’ve now had 2 acupuncture sessions and I am feeling alot better generally.
I’ve had a visit from our local hospice with the emphasis on helping anyone who needs it. They have all sorts of treatments that I can take advantage of…and I will. Reiki, aromatherapy, reflexology etc. All free. Well you got to take what is handed out havent you?
I dropped into work to see my collegues and friends. I’ve been away from work for several weeks now but beginning to feel more human again, so intending to return in November on a phased return basis.
Hope everyone on this thread is well and stil enjoying some sunshine, albeit autumnal.
