Would you delay chemo ?

[AmyKB]

my mum diagnosed with stage 4 nsclc egfr negative has been told chemo is best first line treatment .. She is fairly well slight cough recently started having pains around tin area. Can start chemo in next 2-3 weeks or wait 6 weeks until next scan to see if any growth/mets ... Can anyone advise if we should wait as Onc says she is well and would suffer side effects but could wait until more symptomatic . They would monitor her closely so not too sick for chemo. Onc reckons will definitely need chemo within 6 months. The repeated message is we are not trying to cure but manage to prolong life. She has prognosis of 18 months. Feel like she's been written off by docs sometimes as no matter what I ask answer Is always same ... Did anyone have PET scan and would this show mets more clearly than CT. sorry for sounding jumbled up , my mind is In a whirl. Positive vibes to all of you and lord of live and light x

[willowtree]

Hi, I really dislike that the Onc has given an expiry date. There are many people surviving beyond the dates they were given and most Oncs now don't give them for that reason. Have you had a second opinion? Are you sure there are no trials available? You need to feel comfortable with the advice given to you by the Onc and getting a second opinion might help.Some people come through Chemo with little side effects , and others suffer but get good results. Can you give a little more detail about your Mum's diagnosis? You might also ask the same question on Inspire.com in their lung cancer survivor forum, you will get lots of opinions there. My husband had no effects from chemo at all, but it seems he was very resistant to it and his cancer spread rapidly. He waited at one point because he was getting a second opinion and I do wonder if it might of been different if he hadn't waited. Sorry you are going through this and good luck x

[scootermod51]

Hi Amy sorry to hear about your Mums diagnosis and I can certainly understand your worry and concern. It would be wrong of any of us on here to give any information that conflicts with your specialist but in my opinion it is worth noting they are only human and no individual can know everything. Oncs tend to seek advice from each other anyway as things change so quickly. If it helps this is my opinion. Don't delay, yes try for a second opinion but bear in mind if you do that in the same hospital you will be being reviewed my a multi disciplined team anyway who will have been involved in the decision making for you. I would start treatment straight away. I fell lucky caught my lung tumor quite early stage 2TN. Had a cough etc, and they said your young (52) fit and we could wait. My view was start now, I had already recovered two years early from a squamous carcinoma in my neck, after surgery chemo and radiotherapy. I am convinced of some other things though which depending on your mums health age etc can help. Exercise as much as you can. Develop a real PMA you would be amazed at what your mind can achieve when you focus it on you. Investigate dietary help. I have details of a great food trail that has helped me and will grow in use in years to come. Cancer cells thrive on glucose. I have had a pet scan and they use glucose in the radiation as it really lights up cancer cells that use it for food! Have a pet if its offered they are much more accurate than CT. If you can eliminate all sugars from your diet, including processed bread particularly white, the carbohydrates within it are turned straight into glucose that feeds your tumor, same for pasta and rice. Avoid carbonated drinks and adding sugar to tea coffee. You might find in tough, but trust me it has an impact. Eat lots of broccoli, sprouts, bok choi and salads. Fill up on proteins, cheese, chicken, fish are great. As well as steaks. Avoid cereals they are loaded with sugar as are yogurts! Turn you and your mum into label readers. At diagnosis my tumor was over 30mm, at my half way scan it had reduced to 8mm and my nodes looked clear! of course the chemo is doing its job but you can help yourself and prove the time scales you were given wrong!! Good luck feel free to ask questions, a great book is The cancer fighting kitchen, you will gt it on Amazon. xx

[Hidden]

Hi Amy, so sorry to hear about your mum's diagnosis. Like Willowtree I am surprised that your Oncologist quoted dates because everyone is different. I was also lucky that my tumour, pT2 Pn2 43mm squamous nsclc , was diagnosed early and surgery was a viable option. I also had a PET scan to show up some nodes that were involved. I had chemo which I got on ok with and am now clear. So I would recommend getting a PET scan and starting chemo early. Your mum's team at the hospital should be able to reduce any side effects. She may even stop or ask for a change of chemo drugs if things were really bad. Your mum should get plenty of exercise and as scooter says follow a very good diet.

You will get lots of support from this site.

Good luck Rab

[Yhp22]

Have you been on the Inspire website. It is very informative and used far more by everyone than this one. Unfortunately I find this one difficult to navigate and not particularly active which is a shame.

The link is inspire.com/groups/lung-can...

With regard to waiting or having chemo - it really is a very personal decision. Having now just watched my sister go through 6 months of the most brutal and radical treatment only to die in very difficult circumstances I feel quite different as to how I felt when she was diagnosed but everyone reacts differently so there is no clear answer.

The only thing I would totally recommend is that your mum asks for a brain scan - absolutely essential - irrespective of what anyone else tells you. Fight for it or pay for it but do it! Sadly the copious amounts of steroids just mask it all and if I hadn't constantly been asking questions I am not sure that she would have ever had a head scan and then an MRI - but it was all too late.My sister wasn't given one and sadly once she was displaying all the symptoms it was way too late. We were only told the level of the brain condition on the Friday and she died in a lot of pain 8 days later. There wasn't even time to get her pain relief sorted out (which is shocking and distressing and leaves you with a lot to deal with) as her condition deteriorated so quickly. If she had known about the extremely high risks of brain cancer and given the scans earlier then her choices would have been different. We literally ran out of time which took away any final choices or decisions and we feel cheated and are still suffering anxiety, stress and shock.

I do not want to scare you but It is only a couple of weeks since my sister died at 52 and it is still raw but the two things that I now feel so strongly about is the need for brain scans for lung cancer patients - on a regular basis and above all that if they are not going to make it then their end of life care should be handled properly and they should not die in pain but allowed to go in peace.

I should point out that my sister had all the body scans/PET/X-rays - many of them - all clear but NO BRAIN SCAN .... totally crazy. You have to push for everything - I always felt I could deal and battle anything but when you are so emotionally involved it is not possible to do it all so if you have the strength read as much as you as soon as you can so that you are informed and can ask questions and demand proper answers. I have found the whole process totally exhausting.

Good luck and hope that I haven't worried you too much but whilst there is hope and positive aspects for many there is also despair and negativity for others.