I had salivary gland cancer found in lymph node 11 years ago so was classed as meteststic. They never found the primary source but a neck dissection was all the treatment I needed. I was finally discharged after 10 years(last year).
I found a lump in my patriod gland and was urgently referred back to ENT(7th Jan) wasn’t seen until 14th March, by which time I had a change in voice and felt I struggled to swallow. After urgent biopsies and scans I’ve been told my cancer is from an unknown primary source and it’s treatable not curable. I’m 46 working mum to twin boys. My world has been ripped apart, I can barely stomach eating and sleep is non existent. I will be starting chemo in the coming weeks and they hope to get me on trials for targeted therapy. I had it in my head it would be an operation worst case , lose my voice few more scars. I’m so scared to the point I don’t want to ask questions. I was running half marathons until recently, no other symptoms other than above. How after 11 years how can this be happening and have spread? I’m trying to keep it together for hubby and kids, want to work as much as I can during treatment for my own well-being. Any advise tips for treatment:dealing with hospital/oncology etc
So sorry Lynne. My only advice would be to make sure you have time with your team to have everything explained down to the last full stop so that you understand exactly what you’re dealing with. That will give you a baseline.
How old are the children? Kids are pretty resilient in the face of sickness. More than we imagine. Do you need to keep it together? This is a road and battle ( if you like to call it that) for all of you.
I remember when I got Ill I felt such a burden and wanted to spare my family what I was going to go through. I got all my affairs together and retreated into myself. My husband was furious with my behaviour and he was right. I imagined how I would have felt if things were the other way round. We tackled it together and there was much strength in that.
I hope you have years ahead of you all and that whatever treatment your team arranges gives you all those hoped for years.
There have been remarkable results from trials so hold onto that
Stick around. There’s lots of support here
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
My boys are 16 and about to start their exams next week.
im just feeling so lost and scared.
Hi Lynne Like Dani I’m so sorry you’ve found yourself in this position yet again. The waiting fir treatment and fear if what’s going to happen floors ys all. Have you been given a cns or Macmillan nurse I found mine an invaluable source of information.
Your boys will cope you’re their mum you’ll be surprised how resilient they will be.
As for working it depends on how you can cope with treatment sm sure wit will understand. There’s some excellent results with trials so fingers x and please rant at us on here we’ve Ben there in many cases more than once.
Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Lynne. I am so sorry to hear your story, but welcome to the group. I was similar to you with a lymph node positive, but no primary found. Tonsils removed, most lymph nodes on the right removed and tongue biopsied. No sign of the primary. Just over a year later they found a tumour in my tongue, but when they went to cut it out it had disappeared. I am a year down the road now and thankfully OK.
I understand the emotions and fortunately my boys are now adults. I don't think age makes any difference to the emotions of your own kids. It is tough for them.
You need the support of the family. Dani has given good advice through her story and I would concur about sharing your journey and the fact that those around us have, maybe, a harder time of it than we do as patients. All they can do is support as best as they can whilst on an uncontrollable ride. At least we have a measure of control over this ride.
I guess they say treatable rather than curable as you are CUP and there is nothing to definitely say "its gone" at the end of the treatment. I am told I am cured, but my strange situation leaves me feeling uncertain and I suspect you will feel that way at the end. We just have to make the best of what we are given and not let it dominate our lives once through treatment.
A really positive thing is that treatments are so much better than your first time through them.
On a practical level I would let the school know of your situation and the effect it may have on the exams. There may be some allowances the examination boards can make in these cases.
We're all here for you when you need us.
Hi Lynne
I am so sorry to hear about the recurrence of your cancer. After 11 years of being clear it must be a real shock for you. It is only natural to try and shield your family from things as I know I did. I did not want to worry them and held off for some time before coming clean. However holding it in does not help and my family were upset with me that I had not told them sooner. My 3 daughters who are adults were so supportive throughout my treatment and I don’t know how I would have managed without them. You can’t do it alone and it’s amazing how resilient your family can be after the first shock.
I had also just been given the all clear 6 years after my treatment and then a month later I had another cancer in a different part of my jaw. It was devastating initially as I had thought I had put it all behind me and was moving on with my life. Initially I got very panicky too and there were a good few tears shed before I decided that I had to get on with it and have the treatment.
My cancer is also only treatable and not curable but that doesn’t mean that you can’t have a long life. My surgeon is wonderful and I have every confidence in him. He has me on a ‘watch’ list and says that if anything crops up again he can get onto it quickly which is very reassuring. In all I have had 3 operations for my jaw cancer but yet I am still here living a good life. The treatment is a pause in your life but you will get back to doing all the things you were doing before but you can’t rush the recovery time.
I found asking questions of my surgeon really helped me. It is the not knowing that I found hardest so hearing the info from him helped me get my head around things. Some of the things he told me were hard to hear but it definitely helped. When it came to the operations and radiotherapy and recovery knowing what to expect during that time made it more bearable.
The treatments they can do although hard at times have a very good result. I’m sure you will get a good result too so hold on there.
I have found the support of this forum invaluable so keep in touch and ask any questions as most people here will have experienced something similar and should be able to give you a helping hand.
Wishing you all the best for your treatment.
Lyn
Sophie66
Dear Lynne
im so sorry after all this time you are once more having to fight cancer and you are so very young. I have had three oral cancer surgeries in five years. I would only tell you to not get to caught up in the treatable/curable difference. My doctors here in the states have never used either word. Each time I went through surgery that particular cancer was removed with no trace found. Yet it returned close by. Don’t hide from it. Be strong and do whatever you have to do to have it removed from your body. And don’t be afraid to ask questions. You have a young family and a lot of life ahead of you. This too shall pass. I send you prayers and hugs
Csrolyn
Thank you, I have CNS but I’m just so scared to ask questions. I know once I’ve settled n started treatment my head will be in a better place. Thank you
Hi the schools return tomorrow after Easter Break. I have emailed the school so hopefully will have a chat with the guidance teachers. Thank you for your reply and I feel there is going to be a lot of support here.
Thank you . It’s good to know I’m not alone and others have been/are going through a similar journey.
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