Hello Ladies
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
Hi Angel
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.
Jan x
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