38 year old, newly diagnosed spread from Bowel.

Hi, Staceyjean85, I dont have your type of secondary cancer, but i am in the secondary group with it in my bone so i do understand where you are at the moment. Processing this info takes time there is no other way to put it really. This is still very early days and your brain can not, and does not, want to take it all in. I am going to say the same thing i say to many on here, it will get easier when you know what your treament plan is and how you are going forward with this. I was first diagnosed 20 years ago with breast cancer, and i have been secondary for 4 years now. I hope like many to be here for as long as possible and with a good quality of life fingers crossed. You will hear there are many new treatments for all types of cancers and guess what there are. I have been that person watching others enjoying themselves and getting so upset, i hope you can still do all you want for a long time to come. I live with secondary and at times its like being on a roller coaster but being positive really helps. We still get mad, cry, scream, and dread every scan, but we find the strength to carry on and you will too.I wish you all the best on your journey. Just one more piece of advice keep notes, keep all appointment letters of times and dates of CT scans ect. I would also write down department phone numbers and all consultants secretary numbers these will be invaluable in the future. I can only wish you the very best for your treatment and hope it all goes well for you. Dawn x

Hi Staceyjean85 

I am sorry you find yourself here, I can’t imagine what it must be like to have to face this with such a young family. All I can say is take it one day at a time. You have no other choice really, and it’s really important to enjoy time with your family. I have secondary cancer in my liver, in my case from triple negative breast cancer. I have been through chemo, an ablation (which didn’t work), immunotherapy (which did work but had material damaging consequences for my kidneys, lungs, thyroid). It’s almost 18 months since I found I had secondary cancer and I am still here with a similar level of cancer in my liver to what I had at the start. Treatment has not been continuous, but I know I will be in an out of treatment for the rest of my life. I was able to get back to running, until the immunotherapy damaged my lungs. It will seem more manageable when you start treatment. 

Thanks so much Dawn. I've just brought myself a nice A4 pocketed diary and a folder. I think I need physical paperwork rather than the phone to keep all my stuff too. I feel OK tbh but I'm definitely in denial. Especially now as I'm on steroids which are giving me ALOT of energy. Not that I'm complaining x 

Thanks mate. I don't know yet if I am eligible for immunotherapy but this has really helped me have a think about asking questions. Is the cure more successful than the damage? How long will it add to my life. More research! 

How do you feel with your liver mets? I'm so sore tbh its happened so quickly. I'm breathless too which makes me tired. They've doubled my dose of steroids so I feel better today. On examination my liver is enlarged so i wonder what this means. 

I have my next full diagnosis and results meeting with treatment plan on Wednesday so I'll have lots of questions then. Can I ask how long did it take for you to become suitable for ablation? Did they say you were not eligible to start? 

Thanks so much for the reply

Stacey x

I don’t have any symptoms as I am lucky the cancer is still quite contained. I think ablation is not an option unless the lesions are small and few in number. I was eligible at the start but when they grew back they were too large. Pembro has shrunk them so a second round of ablation is currently under consideration. 

Hi Staceyjean85 

You have hit the nail on the head with one of your comments “how do you even process that kind of information” 

My husband was in exactly the same boat as you (secondary liver mets x4 after bowel) and I simply fell apart and could not take it all in! Give yourself time, it took me a good couple of weeks to begin to function without constantly thinking about it and crying, so I can only begin to to have a minuscule insight into how my husband and you must really be feeling. 

I know we both found it a lot easier to cope after a face to face conversation with the oncology team, who were slightly more positive than the colorectal team that first told us. Ince we had a treatment plan in place things looked better!  I do hope that this might be the same for you! Send you lots of positive thoughts x