Progression of secondary cancer from primary bladder cancer

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I was diagnosed with bladder in 2017 and had bladder, full hysterectomy & top of my cervix removed at age 33. Then in 2022 I was told nodules in my lungs that my oncologist had been keeping an eye on were in fact cancerous. I received one round of radiotherapy and then had to stop as there was a few more nodules growing in both lungs. I’m almost a year and a half into immunotherapy and was doing well until about 6 months ago when they noticed 2 nodules were beginning to grow again after pausing for so long, so radiotherapy was mentioned as an extra treatment to add on top again. Then last weekend I had a seizure which resulted in a head scan which has shown the cancer has spread and I know have a small tumour at the side of my brain, I’m still waiting to see my oncologist to find out what the treatment plan will be moving forward but I’m just wondering if anyone else has experienced these same changes/secondary cancers? I’m not really sure how to feel, I’m an upbeat person and need to be able to be me and do my daily things in life and I know that shouldn’t change, but I guess I’m just looking to see if anyone can share any similar experiences with me. 
Thanks in advance, I hope this makes sense too. 

  • Hi Flamingo37, welcome to this group where I hope others with experiences like your own, for example with immunotherapy, will come along to share. I was also diagnosed in 2017 but so far 27 doses of BCG treatment is holding my cancer at bay. We all hope our screenings will continue clear but we also know that bladder cancer frequently reappears. Alongside messaging in this group, I hope you are getting good support from your family and friends at this tough time? Do you have a Cancer Nurse Specialist who might put you in touch with professional help to reflect on your options and talk through your feelings? I think Macmillan might also be able to direct you towards talking support. You seem to be coping incredibly well with the developments in your cancer, and definitely there is no fixed way for anyone to feel. I totally agree that the most important thing is to continue to do the daily things which matter to you and despite the setbacks I hear that determination coming strongly through your message. Respect to you for your brave, positive attitude. Sending you love. Hx

  • An thank you for your reply, being hopeful is the only way to be really, helps keep the sanity at bay.

    This is the second time I’ve written in here, I wrote back when the nodules in my lungs were found but was made to feel like I was over reacting as nodules can come and go, which I knew, I was only looking to see if anyone had anything similar, so I’ve been off this for a long time, as that kid of judgement was uncalled for in my opinion and not what I thought this group was about. 
    I’m just looking to see if anyone has had the same primary cancer that’s lead to the same as me, to have a chat with. I know it’s probably a long shot but if I don’t ask I’ll never know I guess. 

    As of yet I’m not seeing the need to talk to specialist nurses yet but I shall if I feel I need too though, I have the best people around me and can’t thank them enough for their support but they will never really understand things from properly, if you get what I mean.️

    I hope that your treatment continues to keep things at bay for you and you are coping as well as can be with everything too, also hope that treatment isn’t being too harsh on you either. 

    really appreciate you taking time to reply to me. Thank you! Heart

  • Hi,I’m so sorry to hear your cancer has spread.I remember you sent me a very kind reply when you were about to have immunotherapy.Sorry I can’t help but I just wanted to wish you well.I hope something can be done to keep it at bay.Love Jane xx

  • Aww Hi Jane, I remember talking to you before. I hope you’re keeping well! 
    Thank for thinking of me and taking the time to write Heart️ xx

  • Hi,I’m not too bad thanks.If they can find out why I keep coming out in hives things will be better.Take care.Love Jane xx

  • Few similarities only  , currently seeing my mum going through some tough times. Bladder cancer with multiple lymph nodes involved that has spread to her lungs, currently waiting for first radio session followed by combined chemo/immuno treatment. Unfortunately she couldn’t have more than a failed TURB and a debulking of the bladder due to the size of the tumour , her treatment is classed as palliative.

    We’re all new to this so can’t be of much help in terms of advice but I would think radio will be your first line of treatment for the new tumour . 

  • Thoughts are with you all just now going through this isn’t easy. I do hope the treatment plan helps your mum and pauses any more/growths and it isn’t too hard on her. 

    im thinking radiotherapy will be the next step too for the new one just not sure immunotherapy will continue anymore as doesn’t seem to be working anymore. I have my app tomorrow so hopefully get a bit more of a clearer picture.

    many thanks for your reply, sometimes it’s a horrible blessing knowing that others are going through the same. Wish you and your mum all the best.

  • Fingers crossed for a useful appointment Flamingo37. Hope your oncologist come up with a new treatment plan which will help. Be thinking of you today Hx

  • Best wishes for your appointment.Love Jane xx

  • Hi Flamingo37, how was your appointment? Did the Multi Disciplinary Team come up with a good treatment plan? Sending a hug Hx