Angry

My mum was diagnosed at the beginning of January with a 3cm squamous cell tumor of the right lung,After tests and more tests and more growth and no treatment due to start until the 6th May we were told on Wednesday that it has now metastasized to her bone.We have been to every hospital in the north east and were told it was curative by surgery.Then when it had enlarged to 9.3 cm it was still curative via chem/rad combined.Now following radiotherapy marking and a final pet scan prior to combined therapy starting we are told we are at stage 4 now and it is palliative treatment only. So much time has been wasted,so many missed opportunities to act and now we are told sorry,change of plan we can't fix this.I am so very sad and so very angry,we are having to shout every step of the way.

My mum is 63 and has had her life taken away from her because of non stop procrastination.

Three different bronchoscopies at three different hospitals, three pet scans,three ct scans,a surgeon,an oncologist a chest physician and no treatment for four months.how do we let this happen to people? Mum starts gencarbo on Tuesday though we are still awaiting a time for this.Totally horrifying experience,i have no faith in these people at all.

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  • This is scandalous, how on earth has it taken 4 months for your mum to start treatment. I really feel for your mum and family. You should speak to your local MP and kick up an almighty fuss about this.

    But more importantly please try and give your mum plenty of love and support. Also nobody can predict how we will respond to treatment, there is always hope.

    Best wishes Rab

  • This is absolutely appalling. I am sure there is a timeline to work to and it isn't 4 months! I had a 8cm tumour removed with no spread so something could have been done. Unfortunately it won't help your mother but someone should be held to account. The flip side is, as Rabbie says, nobody knows how she will respond to chemo and there is always hope

    Caroline x

  • I know how you feel my husband had one mistake after an other but you are unable to do anything about it you just have to wait for them to get it right we was told in dec 2013 he had 2cm had chem times 3 two scans he had it in his left lung we was never told it could speed to the brain and it did that was in jan this year he died on the 18 feb this year we did not even have the palliative team in until the day before he died then it was to late he died at home I feel like you they should have done more he was 63 years old had a lot of living to do and he put his trust in them

  • Shaz

    I am so sorry that you and your mum find yourself in this situation. I can only imagine that the last few months have been hopeful and then increasingly frustrating. There are guidelines in place for the time from diagnosis to treatment and the delays you have experienced don't seem to reflect those.

    It is worth writing down an account of what happened, where and when. You may want to talk to your hospital Patient Advice and Liaison Service who can advise on your options in terms of complaint or investigation.

    I hope this week's chemotherapy goes ahead and makes your mum more comfortable. It may be worth talking to your mum's Chemotherapy or Lung Cancer Nurse and explaining that she has not had much continuity in her care. Meanwhile this may be emotionally draining for you, supporting your mum and working so hard to get her care sorted. Feel free to use the forum to share your understandable anger, frustration and upset. If you need any specific information please feel free to call us on 0333 323 7200 option 2.

    thinking of you,

    Lorraine on behalf of the Information & Support Team

  • Thank you so much for your support. Currently at Ncct whilst the mothership gets her first round of chemo. We are all in panic mode x

  • My mum has now undertaken her first treatment. Symptom wise she is tired,dizzy and her speech is a bit slurred. The hot flashes have also made a re appearance.Does this all sound normal for gem carbo?

  • Hi , I have had one cycle of GemCarbo . The first week i felt light headed , dizzy and hot flushes. But after the first week of treatment (day 1) no more side effects only feeling tired. Does your mum see the oncologist on the 3rd week after each cycle, week of no treatment. This would give the opportunity to discuss these symptoms and check them out. Or discuss it with your mum's allocated nurse specialist.

    Thoughts for you all and hugs .

    x

  • Thank you for your reply hun. We are on edge with every new symptom. Mam goes for bloods on monday so we will speak to a nurse then. Take good care of you love xxxx

  • Hello Shaz

    Hope blood results yesterday showed some promise and you got the chance to talk to the nurse.

    thinking of you and your mam,

    best wishes

    Lorraine

    on behalf of the Information & Support team

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