As I was stage IV at diagnosis with metastasis to the lungs, my treatment was over quite a long period and the last active treatment was March 22 when I had two lung ablations. The specialist hospital I am under has been amazing, with regular MRI (until March this year, now annually) and CT scans every three months.
Over 20 months ago I was told I had inflammation in one of my lungs which prompted scans every six weeks for a period, this was so stressful, not only for me but my family. However, early this year I saw a young oncologist who flicked through my scans, laughed and said the inflammation has been there since you had the ablations, but it hasn't changed and cancer does. I asked what it was and he replied, we don't know. This is my only...criticism is far too strong but observation if you like, if I had been told how long the inflammation had been present, it would have saved so much stress. Maybe they all thought I knew.
The three month scans continued, the last being early September. The oncologist rang me in Spain (really) to hold my follow-on appointment. The inflammation is still there, they are confident it is not cancer and my next scans are - drumroll - March! Six months. I can hardly believe it. No scanxiety this Christmas and March 2026 will be the fourth anniversary since any treatment at all. The word remission has never been mentioned to me but I think four years isn't bad going.
And of course I know there are others on here where their news hasn't been so positive, and I really don't mean to be insensitive to them. But many others have followed my history and been so supportive I just had to share.
Keep celebrating the wins, no matter how small. A three-month scan period extension is huge to me!
Irene xx
Hi Irene
This is wonderful news and SO good to read. I understand that you don’t want to be insensitive to others who don’t have such positive news, but the hope that you give others is very important, and everyone here will want to share in your happiness.
Remission was never mentioned to me either my own cancer at any point until I got past 5 years and asked the question. My surgeon was clear-she doesn’t consider me in remission, but cured!
I wish you many more years of good health and no scanxiety-and thank you for sharing this for everyone to read.
Sarah xx
Hi Irene,
So glad to hear that you’ve had some positive news and I’m pleased that you have shared.
After all that you have been through and are still going through, you so deserve to hear something good. What a relief to be free of the scanxiety for a while. Obviously wish that you’d been told this sooner but nonetheless good to know now.
Wishing you well xx
Hi Irene
This is wonderful news, so happy for you. I get you not wanting to be insensitive to others but I think we all love to hear good news. I know when I first came on here I was looking for good news. Also the fact that you are so supportive to everyone else while having your own worries is just amazing. You are a beautiful person. Sending hugs. Xx
Fantastic news for you Irene - you have been through the wringer (showing my age!!) so definitely deserve this. You are so supportive and helpful to us all on this forum so it's great to hear things are going so well for you.
As you often say to others - Gentle Hug
xx
When I first came on this forum terrified and isolated and also embarrassed to have such an ‘ unglamorous’ cancer you were so full of positivity that I immediately felt supported. I’m so happy to hear your good news!
Happyflower
xx
I am similar to you in that after a scan I am so full of fear as to what may have cropped up. I have been told by various oncologists (in the early days) 'there is inflammation in your peritoneum' 'stage IV cancer cannot be cured' 'we are concerned about your other lung' 'we don't know if there will be further treatment' and signed forms for systemic chemo that stated, (I can't remember the exact words) something along the lines of 'this is to relieve symptoms' - the positive option had a line through it. What kept me going was the words of the first medical oncologist I saw, who is a world-renowned expert and researcher on anal cancer, 'this is what you have, this is how we are going to treat it, I am hopeful that this can be eradicated, and if not, good long term control'. In that meeting she gave me hope when things looked very grim and everything she said came to pass. I don't know about the eradicated bit as I moved on to the clinical oncology department and didn't see her any more. But for me the biggest take from my experience is how very important hope is.
Thank you for letting me know the words you heard after five years! I am definitely not wishing my life away but the more time that passes...
Any word on your hip replacement? I thought about that when your name came up.
Irene xx
Hi Irene
My first consultant was a difficult chap-he wasn’t one to be dishing out hope, and I found that so unhelpful. I remember one time, a week or so into radiotherapy when I was being reviewed he asked how I was and I said I was feeling good. He replied “unfortunately, that means nothing “. Talk about a huge blow! I found that devastating and of course it was always on my mind after that. Still is, after 7 years!
My new consultant when I had my recurrence was like a breath of fresh air and focused on hope every single time I saw her. She was like a little powerhouse in her doc martens who refused to give up on me! Her empathy and calmness meant everything to me.
When I last spoke to her in March this year she told me she would never have attempted my surgery if she didn’t think I had a very good chance of cure, and here we are now having been able to say she succeeded.
Not so good news on my hip, unfortunately. I saw the orthopaedic surgeon on Monday and had got my head round the thought of more surgery. Within a minute, all my hope was taken away. I would be a great candidate on the basis of my x rays as things are so bad, but my risk of dying during surgery or very soon after is absolutely huge. This is because of the stroke I had last year and the pulmonary embolism caused by my chemo. He was such a nice chap, and explained everything very clearly. I also have renal disease and diabetes of course which further increases my risk.
If I had steroid injections into my hip, it might give me pain relief for about 2 weeks, but this introduces an infection risk, which with my other conditions is very high. I cannot risk kidney issues-having 2 stomas is enough without having another 2 bags for nephrostomies!
He has told me that he will speak to the anaesthetist team for their view but regardless of what they say I will not be going ahead. To get through cancer twice and die from a blood clot after surgery is not a risk I could contemplate. The normal risk of 1 in 600 is hugely amplified for me with my history-and that risk is too high.
So, he’s told me my pain will get worse, my hip will get stiffer and I’ll be even less mobile-I’ll always need a wheelchair. I have to confess I’ve had a few tears over the past few days as I never expected this. I’m concerned about how I’ll manage in the future in our house with near vertical stairs, being alone all day in the week when my OH is at work, and I need to accept that all hope of walking normally again is now gone.
I need to see my gp again for a pain meds review to see if he can try other things-I’ve just got my prescription filled yesterday and I’m on more than 400 pills a month and still in pain. There has to be something better!
Anyway, I’ll dust myself off and try to keep going-I can’t let this stop me from doing that.
Sarah xx
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