Those cancer cells that lurk about are buggers aren’t they. Seems no matter how much chemo you have if one is left it will make its way around. How was your last scan result? Are you still on your first line of treatment? My oncologist said that one positive is that er+ cancers have more treatment options and new ones are being researched all the time and who knows what’s round the corner. I think the reason I’m so down today is because he used the word palliative and that to me means death...I’ve been a carer for a long time so I know that word well. It’s freaked me out no end today xxx
Hi, I dont mind at all. I had ER positive grade 3 initially, like you I had chemo and radiotherapy. Then 4 years later it had spread to my bones, first my pelvis but has progressively done the rounds to length of my spine, femur and pelvis. Had radio to 3 areas. Also have numerous mets to my liver. Like you I'm on targeted therapy since August last year and having a mixed response so am choosing to give it another 2 months before the mention of chemo comes around again.
I did ask what the outcome could be, only because I like to be in the know, I've worked in the NHS for 23 years so can read between the lines unfortunately. I still believe in new treatments as many new therapies are described as "games changers". If the results from trials are to be believed all if the statistics are out of date, so that can only be good news for us!
In the mean time I plod on, I did take early retirement last year and that did help me as trying to work on full pelt when I couldn't was exhausting. I'd definitely recommend it!
Oh no you haven’t come across badly at all I totally understand why you’d want to protect them. If you don’t mind me asking what type of breast cancer have you got? Mine is lobular grade 2. Did you ask what your time frame was? I didn’t ask and I don’t want to know as I know it will panic me even more. Xx
Lollypop84, I'm so sorry to hear you are really struggling.
You are right, it is an awful rollercoaster, I wish we could all get off.
I think that 3am witching hour is the worst when our minds run wild. Many times I'm lying in bed hoping the consultant is wrong with the time frame he's given me, praying I get to see my son's 18th or my daughter do her GCSE's. I dread results day every 2 months when I'm told the latest news, it does make me feel "why me?" on many occasions, then I read others threads and realise I'm not alone.
We all cope in our own way, and by no means is any of ours wrong, there is no right or wrong in this situation.
If my message came across like that I apologise profusely, I was just saying how we like to deal with it, be it right or wrong.
I hope you and your son get some good news and support from Macmillan and your medical team. Keep praying for the next miracle treatment, I know I am! Lots of love xx
Thank you for your reply bevC75.
I’ve been very open and honest with both my boys from the very start as I didn’t want any nasty surprises popping up. I went through chemo so lost all my hair and I was quite poorly at times so there was no hiding it I’m afraid. He’s much more positive now I’ve read him nice stories of ladies coping well and being here way past there prognoses which I believe is improving all the time. It’s a tough pill to swallow being told what we have and I have terrible days of panic and fear ( today is one of those days ) but then I think no I won’t allow cancer to do this to me and I pick up again. It’s a huge rollercoaster ride I wish I could get off as I’ve had enough of this constant fear and uncertainty. I find myself wondering how long I have left and will this work for me etc...it’s crippling me and I’m not living my life xx
I'm so sorry to hear of your diagnosis and that your son is struggling. I know how that feels, my children were 1 and 4yrs with my initial diagnosis, and 5 and 8 when my cancer returned. They are now 13 and 16.
I've always sheltered them and limited the information that I've given them. They know I have monthly treatment at the hospital, take tablets daily and have scans every 2 months, but that's it. If they ask further questions I do answer truthfully but maybe put a positive spin on it.
My mum was diagnosed when I was 14, she limited the information she gave me and as I've got older I'm thankful that she did.
If I had had access to the internet Lee the kids do today I don't know how I would have coped.
Being a teenager is a horrible time as it is. Sounds daft but my two are my babies and for me, I chose the ignorance is bliss route, working so far!
If your school knows they will have a school nurse and a pastoral career who can support your son and point him in the right direction, liasing with age appropriate services.
Hopefully these will give him the support he needs.
thank you for your reply, I think I’m going to take him to see the Macmillan nurse next week for a chat mainly about the medication and the fact people are able to live longer and better lives on these tablets. He seemed much better yesterday after a talk with his dad
( we’re separated but get along ) we’ve made plans for the weeknd so that’s given us all something to look forward to. I’m so sorry about your mum it sounds like your family have really been through it. I hope your mums treatment goes well and you continue to have good scan results xxx
Im sorry that your son that your son was struggling but glad he feeking nore positive. I think macmillan coming in speak to him would ve great help. My macmillan personally is great. Im 33 ni kids but diagnosed 32 was tough on all my family was diagnosed straight of the bat with secondaries im on lethzole and zoladex had first scan Nov results December and showed considerable shrinkage.
However since then my family received another blow and that is ny mum has been disgnosed with thyroid cancer i suffer from anxiety and depression see physcolgist but not seeing her tikk end of the monrh and mun stsrts her trestnent today six weeks of five days of radiotherapy and one day week chemotherapy. As while till i see ny physcolggist i reached out to macmillan nurse she saud she going to ring me more and visit ifvi want which to me has kinda nade mr feek better as dont want put on my family.
Love snd hugs
Thank you for your reply kindensurprise. It’s so nice to hear you all saying the fog will clear as at the moment it doesn’t feel like it will, I keep thinking of all the things I won’t see my boys do in the future and that’s sending me to really dark places and I just keep thinking how unfair this is on not just me but all of us. I feel totally robbed of any future. I know I need to not think about those things but it’s all I think about it’s draining me so much and I want to stop but I just can’t seem to, the only time I don’t think about it is when I’m asleep at night it’s exhausting, I’m in a daze all the time xx
Hi lollypop glad you are feeling more positive and your son is coping a little better. All the very best for tomorrow. Get on that treatment and begin the new normal. Lots of love to you and yours.
I am glad to hear that you are feeling better about things now.
I was diagnosed with my secondaries last October when my girls were 13 and 15. We had talked about bc over the years (my primary was in 2008 when they were very little), and how it is not curable. However, telling them about secondaries was a whole different ballgame given their ages, and I searched online for sources of help, largely without success, and got nowhere with my oncology unit either, but there is a booklet for teenagers whose parents have cancer available via the cancer research website (I think!) which helped a bit, as does talking and being honest.
It is hideously stressful waiting for appointments and to start treatment, but I think we all find that getting going with treatment enables the fog to start to clear, I hope it does for you.
I have also absolutely found the support on here really makes a difference, and I find stuff out, especially about people living well for a long time, on here far more than otherwise on the web, cos these are real people who are living with it.
All the best for tomorrow and your ongoing treatment.
Thank you so much Mexico, your post has really helped me. It’s so nice to know we won’t always feel like we do....at the moment I feel we’re in a black hole and can’t climb out. I’m seeing my oncologist tomorrow and treatment will start and I know I will feel better. I’ve had a good chat with my son today and he’s much more positive and happy about my treatment plan now. I also called the Macmillan nurse and they suggested for him to come in and have a chat with them about it all which I think will help him massively. This is a long journey with many ups and downs I’m sure but I’m ready to take it on. Good luck with your treatment, have you had any scans yet? If so I hope they were positive xx
i want to do a reply to you because I know what it’s like! How hard it must be dealing with your sons distress and trying to comfort him when right now it’s hard to find comfort.
i remember well when I was diagnosed in June 2019.....metastatic triple negative....me and my family went into a cocoon of misery. It was hellish. Shock, horror, grief, fear...etc etc. Unfortunately I think that is a stage that we couldn't avoid....and in those early days it is really about just holding things together day by day as best you can and lurching from one appointment to the next.
(I took a small dose of sleeping pills because I found I couldn’t sleep and struggled more to cope the next day, they helped me enormously during that time.)
But.....after about 3 months.....things did shift and treatment started and hope emerged and the family have come through the initial trauma and life is back to a sort of ‘normal’ for now. At the moment I am am well and living well and my kids (older than yours) are really on this journey with me, they been to meetings with the oncologist and know exactly what the score is, and I’ve decided to hide nothing from them. They have liked it that way and it’s been really helpful to me to know that they know as much as me (well almost!). But they are older.
good luck and hang on in there. It was great that your son said what he did....that was all good, despite being unbearable for you to hear.
Hi just wanted to send you love and hugs lollypop. I hate any change to my diagnosis ad I have to then put my family through more worry. It's the hardest thing. Even though my girls are on their 30ts now.
As a teacher I would recommend telling your son's school. They will or shpuld have support systems in place to help. Hope you can find some support to help soon. Love 💕 xx
Thank you for your reply catokitty, I’m sorry about your diagnoses I know how you feel it’s the worst news I’ve ever had to sit and listen to. I am hopeful I can live for a long time yet with the medication I will be taking, I’ve read positive stories on here and that really lifts my spirits. My poor son just can’t take this in and I don’t blame him, I’ve tried to assure him that In time it will get easier ( that’s my hope ) and we can start to live normally again. I hate that he’s in pain and I can’t take it away from him. I have another son of 10, he’s a bit more oblivious to it although he knows what’s happening he seems to switch off which I’m happy with but aware at a later time it may come out. My sons main worry is my dying really soon and leaving him, I have said the drugs they use now are very effective and people are living a lot longer now. I hope this gets easier for us all as my house isn’t a happy place at the moment xx
Hi @lollypop84 thank you for sharing your post. We are sorry to hear this and we would like to let you know that our breast care nurses are here to talk if you want to talk things through or find more support.
You can call them free on 0808 800 6000. They are available during the week 9am-5pm and 10am-2pm on Saturdays.
Social Media Officer
My heart goes out to you and your lovely son. I have no advice but just want to say that when I got my diagnosis the oncologist said the average survival for my presentation (spinal mets) has been several years but more people are now going on for longer because of the targeted treatments which are very successful and there are new drugs coming out all the time. The specialist nurse said to think of it as living with a chronic disease to which you have to adapt but life can still be pretty normal. There are people on this forum who have lived with secondaries for many years and hopefully someone will come on and offer some advice as like you I am at the beginning of my mets journey, Like you I aim to be around for a good while yet xx
I am so sorry you are in this situation, it is still very recent and I guess you are all trying to go through the shock of it all and what it means and trying to process.
Being 14 is a tricky age and I think it is positive he has been able to verbalise his fears and anger at the situation even if it is hard to hear. I would advise you speak to his school so they can offer support and maybe consider some emotional support for him if he wants to access this.
It sounds you have been able to find some good words but give yourself time .... it is a lot to process
I cannot comment on treatment but wishing you all the best and for good results
I need some advice please, since my secondary diagnoses last week my 14 year old is really struggling, he’s got no faith the targeted tablets will work for me as he said the chemo didn’t. I have explained that we’re given no guarantees when having treatment we all have to hope. I have said it’s not the chemo didn’t work it’s that it wasn’t the right treatment for me but it has done something as I’ve had no further spread and I was told from the start my spine was an area of suspicion. How can I reassure him? He thinks I’m going to die in the next year or so, I have told him it’s early days and we all feel really anxious but one thing I can tell him is I’m very much going to be in for a long time yet, his reply? No time is long enough I need my mum here until she’s old 😢 it broke my heart. What can I say to him? He’s beside himself and if I’m honest so am I and I’m really not coping at all. Please reassure me that the tablets will help so I feel like I can help my son in some way this is breaking my heart xx