dont know what to think

my husband who has stage4 lung finished 4cycles of chemo in oct 2016 with some shrinkage to his tumours,the onc told us he would send biopsies for testing to see if he could have imunotherapy treatment, or it would be more chemo, he had another c.t scan a couple of weeks ago then back to see the oncolagist who told us that the tumour had decreased yet again,he finished his chemo in october how long does chemo keep working for ?we go back to the oncolagist in march were he is havingb a chest xray and not a c,t scan worried that if the cacer is active again it wont show on just a normal xray feeling very worried and feel he may get pushed to one side again it took about 4 biopsies and various scans before we got a diagnosis 10 months in all told it was a grade 2a then 3 weeks later told stage 4 really dont know what to think any more

8 Replies

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  • Hi Sue2428

    Do you have a lung cancer specialist nurse who you can speak to? If not, unlike myself I wasn't aware I had one and I wanted to know answers so I contacted the Secretary of the Onc. To ask him to phone me. That may or may not happen but it may be worth a try.

    March is a long way off but it is good news the tumour us shrinking. I think a chest x-ray just shows shadows on the lung and as you said a CT will show more. When you see the Onc. next look at the monitor with him so you can both see what's what. I found that interesting and helped me and my hubby understand better. My lung cancer was in 2012. I had an op first and then chemo. I'm on my fifth year and doing well.

    Keep pushing further, make yourself a nuisance if you have to but make sure you get some answers and get someone to explain to you fully.

    Keep in touch.

    Best wishes

    Hoggy

  • thanks for your reply, unfortunatley my husband cant have surgery because it has gone into the lining of his lung s told they wouldent be able to cure him but would just keep knocking it down ,i know they cant keep giving him scans but so scared that it will flare up inbetween xrays and things ,and it could be growing or moving to other parts,i understand that this is the norm but still cant help but worry, good news that you are doing so well long may it continue,x

  • Good morning Sue

    I fully understand the worry you have regarding your husband and not wanting to slip through the net. My husband was diagnosed with NSCLC in 2016 and one of the first things his consultant said to us was that he would check him by using X-rays instead of ct scans as it was safer due to the amount of radiation used in an X-ray to a ct scan. I am certain your husband is getting the best possible care for this disease, but if you have any concerns speak to your consultants secretary and ask for his appt to be brought forward. They are there to help and support you and your husband. Good luck and best wishes xx

  • thanks for your reply you have helped put my mind at rest hope all goes well for your husband xxx

  • Dear Sue

    It is encouraging to read that your Husband has had a good response to the chemotherapy and the tumour has decreased. However your concerns are understandable given the experience you have had with the lead up to the initial diagnosis.

    It is difficult to predict how long the chemotherapy is effective for in keeping the tumour reduced , as it depends on the type of cancer, how well the tumour and person responds to the chemotherapy. But from what you have written your Husbands tumour has reduced even further.

    Post Chemotherapy check ups are usually every 3 months for the first 1-2 years. along with xrays or scans.

    It may be useful to chat to the lung cancer specialist nurse about the worry you have of your Husband not being scheduled a follow up scan. Did the biopsy result show that your Husband may be suitable for immunotherapy, which is usually second or third line treatment after chemotherapy.

    If you wish to discuss anything you can call our free nurse led helpline on 0333 323 7200

    Kindest regards

    The Roy Castle Support Team

  • thank you for your response the dr did say they had sent his biopsies off for testing to see if he was suitable to have imunotherapy fingers crossed as i have heard very positive things about it.

  • My cancer is stage 4 and that is because it is in the lining or the pleura fluid. My understanding is that this is the secondary cancer and therefore what makes it stage 4 because it has moved. I also had some in the lymph nodes in my chest this was bumped off with the first type of chemo. The fluid hasn't gone but sometimes reduces with treatment. I had a second lot of chemo last summer and that also helped. It didn't reduce it much but pains that I had been having under my rib cage had gone. I am still on tablets at the minute and await another scan to see if they are still working. I was given about 6 - 12 months. I am still here 2 years on and fighting.

    I have also had a CT Scan approximately every 3 months. I have what is called a contrast scan which mean they pump something into me and take a second scan to compare the two. I had a bit of a reaction last time so I'm not sure what will happen on the next one.

    Good Luck and keep positive I believe it does help your mind as well as your body fighting it.

    Jeanne

  • thanks for your positive reply hope you go from strength to strengthx

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