Just chipping in to send our warmest wishes at this challenging time.
I'm glad the Forum allows you to write things you perhaps haven't shared elsewhere. I hope this brings you comfort.
We're here if you need to chat. Our breast care nurses are a phone call away on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
Sending positive vibes
Sounds like you have been going through a difficult time, it is strange how the cancer cells change in type isn't it but I guess that is the nature of what cancer is it adapts and alters its make up in order to keep reproducing and then its up to our oncologists to play catch up with new treatments ?
I am 2 months into recovery from keyhole surgery to my lung to remove what turned out to be two nodules they found another one hiding in there when they went in to remove the other one, I went for my results but couldn't see the consultant as he was on leave and the other Dr I saw only had information on the one nodule and gave me a treatment plan based on one nodule,when I questioned it, he said the second nodule was probably nothing abnormal as it wasn't in the report. I spoke to the lung surgery team on a phone appointment and the dr told me that both were sbc, so I now have to wait to see the consultant oncologist in 2 weeks to confirm whether I stay on the same treatment plan or not, I am hoping I will be still on hormone therapy only and follow up scans as want to stay off targetted therapy if I can, I have been given info on palbociclib but the dr who saw me said he felt the side effects would outweigh the benefits but of course he was basing this on incomplete and incorrect information !! My husband said he probably read the report wrong! The lung team insisted they sent details of both but as a patient you are left stuck in the middle not knowing who is right or wrong ! Anyway on the plus side I had a short visit to the shops yesterday ! First visit outside to something other than a medical appointment since January!
Hope everything goes along OK with your treatment
Hi there. Just wondering how everyone is getting on?
My tactic of shutting it away in a mental box didn’t last long. At clinic on Friday I asked some hard questions (because my husband wasn’t with me) and really didn’t like the answers. When your pet oncologist says it’s “very worrying”, you know all that optimism (it’s just the eye socket and a few skin lesions, after all) is misplaced. The main problem is that it’s triple negative, which reduces the treatment options. I knew I had 2 different tumours first time round but not that one was TN. (And I haven’t told my husband this, just skirted round with vague details, so it’s extra lonely).
I have a supposedly ‘kinder’ tablet treatment but I am really struggling with the twice-daily dosage and fatigue beyond fatigue! I have seen/felt a tiny bit of reduction in various places so it hopefully is working. Cycle 2 starts tonight. I’m trying hard not to dread it.
It IS worth it, isn’t it? Right now I’ve only just got my blood cells back and they’re now going to be destroyed again, poor things. I really wish there was a magical targeted treatment. Anyway, I’d love to hear how you are all getting on.
All the best,
Yes feeling you are not alone during this difficult time helps. I started my treatment on Thursday and whilst it made it feel very real, it is good to start and feel that it can make a difference. Diagnosis and having no treatment is worse. Sending lots of love to you all x
I so agree that diagnosis is just devastating, but lovely to find some hope here. Wishing you all the very best and lots of happy fun moments in the madness that we face, but we face it together xxx
That is so encouraging thank you for sharing, I am finding after initial secondary diagnosis the waves of helplessness and no hope are huge, sharing your story has given hope. Thank you
Hi its carol.... just wondering how your getting on and that you got all the information you need. Hope you have started everything and your well into your treatment...stay strong.. xx
I am waiting for treatment to start seems to be taking so long just want to get started. Reassuring to see people living with secondary breast cancer as being told its incurable felt devastating.
Im sorry your husband finding it hard , men do need bit long to get round things but dont worry he'll get there, you always got us to talk to until then. There so must information leaflets out there so when you go for your chemotherapy or your cancer plan the nurse will be gave you all the information you need if not asks for them when you get your plan , i know it all can be overwhelm thats why you need someone with you to take in all the information and asks the right questions, let your family get involved to support you , dont forget the doctor work for you so dont be afraid to asks loads of questions..Dont worry your husband come round ...good luck
Thank you so much Liz, I’m so pleased to hear you’re stable. I’ll be starting the same drugs as you though bone injections will be monthly. I’m hoping that the side effects will be tolerable. So many things going through my head at the moment including trivial stuff like being able to plan breaks away etc. With regular hospital visits and monitoring how has that worked for you?x
It must have been such a shock to receive your diagnosis after 20 years, your head must be spinning. I wish you all the very best with your treatment, the support on this forum will help us through. Take care.x
Thank you Carol, it’s reassuring to hear that the treatment is still working for you 8 years on. I’m trying to take things a day at a time, not always succeeding but hopefully the anxiety will settle a bit once treatment starts. I really appreciate your wise words, thank you.x
Aw you are welcome its a nightmare to get your head around it all and at the beginning I was all over the place. Once you get your treatment plan you are right it will give you a sense of direction and then you have covid in the mix too. Someone on here said we are living with sbc not dying from it (hopefully). Its hard to deal with all the terminology and scenarios but good to know we are not alone in this fight xx Liz
I think your words emphasised for me the problems I have with language in Cancerworld. When you read “incurable” you/I immediately infer all the negative connotations. But treatments are improving rapidly. Incurable isn't fatal. It means we have to live with it.
For me, it’s waiting for the facts and the treatment plan that is a nightmare but generally I’ve been dealing with it with pragmatism. There’s nowt I can do to change it, is there?
Take care and I wish you continued success.
I am 3 years into treatment for secondary breast cancer in lungs base of spine and pelvis and all tumours stable on palbociclib and letrosole and bone strengthener infusion every 3 months. Plus scans 3 to4 monthly. Initial breast cancer 13 years ago. New treatments and although its not curable it is treatable. Sending you newly diagnosed love strength and positive thoughts. Liz
First, may I thank you for writing 8 years. My spirits lifted a bit.
I’m so sorry it’s a constant struggle. I guess as treatments are improving (in results, if not kindness to our bodies) they will keep trying while you choose that route. All credit to your staying power.
Thanks for the encouragement. My husband is suffering more than me, though I’ve had a rocky day today and guess who’s on the receiving end! I try to talk to him so he is better prepared for the results etc on Friday but it sets his anxiety off again (and I’ve always been the anxious one in the partnership). I certainly can’t talk to him about my anxieties as I have. To be the tough one. It’s our Golden Wedding in August. I just want everything to be normal by then, even briefly.
That sounds like some rollercoaster. You’re right. There are so many what ifs. I’d like to ask loads of questions on Friday but I know they won’t have all the answers and I know I don’t really want to know. That’s how I got through the first time - just left them to it once I knew my phobias were being respected. But this time, I feel I should face the reality. Then I think why?? What’s wrong with Land of Denial if it gets me through? I have had to change the name of my blog - it was defiantly called It’s only a disease! I really believed it didn’t merit all the surrounding fear. So much for defiance lol.
Yes, we must establish a mutual support group in one of the SBC forums. I haven’t explored them yet.
I wish you all the best with your results,
Hi...ive been living the last 8 years with incurable cancer plus going through chemo for the whole 8 years non-stop ive had it all radiotherapy, 6 different chemotherapy, had it in tablet form and drip form.. im still here to tell you take each days as it comes , you'll have good days and some bad days , you'll have more good days than bad . Its ok to be scared talk with your family and talk about everything dont suffer on your own ok .. they wont want to talk about the bad things that come with cancer but make them , keep fighting and stay strong...armagh fighter ....xx
Hi angel2001, jaybro
It seems like I might also be joining you both too! I too have a preliminary diagnosis of secondary breast cancer and am awaiting confirmation of this, the waiting is the worst time !, I had a mastectomy last August following a recurrence of left sided breast cancer after 20 years, during the investigations into this they also found a low grade idc on my right breast and a pulmonary nodule on my right lung, so I had mastectomy and right wle and removal of sentinel node, no chemo ( low oncotype score), no radiotherapy due to previous damage, the lung nodule was too small for them to investigate in June last year, so I started hormone therapy anastrazole In october, they rescanned the lung nodule in December and found it had doubled in size,so I had a pet scan which showed it was mildly active, my onco says that this could be due to it being sbc and the hormone therapy is working on it- so I have had thoracic surgery last week to remove the nodule and the surgeon told me they found another one too! Which was removed So I am now awaiting the results, they have told me they can't exclude primary lung or lymphoma either so I fully understand what you are both going through, but I have sort of accepted that it is sbc,but what if it isn't?? What if the other nodule is cancer too?? Omg, I have so many what if's going through my head and why me ?? After 20 years I thought I was safe! How wrong i was ! Anyway good luck to you both, maybe we could continue to support each other on this forum ? As we are on similar journeys so to speak
Thank you for your very honest reply. It helps to know I’m not alone dealing with all the emotions that come with a diagnosis like this. I am blessed to have wonderful support but only those in the same position can ever truly understand. I wish you all the luck in the world too with your treatment. I hope you get some encouraging news on Friday. Thank you for your advice, I plan to ring the helpline and look at the other support you suggested. Take good care of yourself.xx
I have no advice, I’m afraid, but suggest we join forces. Two weeks ago, I had my preliminary diagnosis of secondary BC (in my medial canthus - eye socket - which is a bit unusual) and get my full diagnosis and treatment plan next Friday. So I do understand how you feel. 1. Angry 2. Cheated. 3. Terrified. 4. Angry. 5. Hopeless and so on. I’m guessing these are all justified and healthy emotions but, for me, it doesn’t work.
I’ve spent my whole life controlled and limited by anxiety and phobic disorder. I guess I’m well-prepared for more anxiety and so I’ve tucked it all in a mental box. So far, it’s worked. I’ve been phlegmatic, with just a bit of seepage of terror. My husband is the one falling apart, sadly. I imagine it will all change after Friday when I know if it has spread further and what treatment lies ahead. I’m not looking forward to hearing all this. What I don't get it that I feel fine. This has to be a mistake, but I know it isn’t.
For the first time yesterday, I did a bit of reading on this site about secondary BC. It struck me that there are many incurable diseases and people live with them for decades so is this the death sentence we dread? ‘Incurable’ sounds terrifying but, until I’m told precisely how long I can expect to survive, I will interpret it as having to learn to live with the fact that there will be treatment, constant monitoring and that dreaded time of awaiting results - frequently - combined with times of good health - and then more treatment. Am I being annoyingly naive?
I’m sending you a huge hug and a suggestion that you focus on what you can do something about - your fear. Talk to the nurses here? Contact Maggie’s. They offer free online counselling. I’ve already established that I’m entitled to more free sessions with Breast Cancer Haven and I’m planning to talk to the medical herbalist once I know what will be happening. They also offer useful online classes like yoga, nutrition, EFT, free of charge. Just talking out your fear and anger may make a big difference though. Overwhelmed is not a good state to be in.
I wish you all the luck in the world (so long as you share some with me!) with your treatment and hope you soon see an improvement. PM me if you like. We can be two unlucky statistics together.
Take care. I hope you get some good responses I can learn from too.
This is the forum I hoped I’d never have to join. I was diagnosed with inflammatory bc, ER positive in 2014. Chemo, mastectomy, radiotherapy and delayed reconstruction. I had lymph node involvement so knew I was at higher risk of it returning. 7 years on it is now back in my bones and I’m struggling to accept it can’t be cured. I have my treatment plan, radiotherapy starting soon followed by oral chemo and bone strengthening injections. Very overwhelmed and would be grateful for any advice on coping during these early days following diagnosis. I’d love to hear some positive stories to balance the worry I’m feeling right now. Thank you for listening.x