My mum has stage IV NSCLC. I just want to stop her suffering.

[shtks]

Hello. I am new here. The place where none of us want to be.

My lovely mum was diagnosed with NSCLC on 15 July 2016 with spread to lymph nodes and scull. She has had constant neck, shoulder and chest pain since late last year but her GP failed to investigate for cancer. She has been taking Gabapentine, slow release morphine, Oramorph and paracetomal over the last few months and although she was still in constant pain but at least she was able to walk down to the local shops and come and stay with me at weekends.

My mum started chemo on Monday and has not dealt well with it. She cries constantly, doesn't want to see or talk to anyone and has stopped eating. It is absolutely heartbreaking. She has never asked about her prognosis but I called and asked the specialist nurse who said 3 to 6 months without treatment and 3 to 12 months with. My family and I would have preferred her to have quality rather than quantity of life and wish she could make an informed decision but I think she is in denial or she just doesn't want to know.

I just don't know what to do for the best. I want to hold her and tell her to stop poisoning her body and enjoy the rest of the time she has but I don't want to upset her even more. She has a Macmillan nurse. Should I call her and ask her to broach the subject with my mum? I don't want to see her suffer like this...

Sorry for the long post but I just want to do the right thing.

Love to you all x

[Mum2charlie07]

Hi there, so sorry to hear about your mum. My mum was diagnosed in June after a history of bone pain and unintentional weight loss. Her doctors also failed to investigate for cancer. Mum has stage 4 non small cell which has spread to her spine. Since she found out she has had one lot of chemo then got an infection but will restart once it has cleared. Ignore what doctors say re prognosis as they truly do not know. I work in a gp surgery and we have patients who are given months and are still going strong after years. It is still very raw for your mum, for you all. I agree it needs to be her choice but I would still encourage her to fight this. There are so many treatments out there now than can help so many. I would ask the Macmillan nurse to come and have a chat with her. They have been wonderful with our family. As I said please ignore the predicted prognosis by the doctors etc. They do not know for sure. As you will see from many of the posts on here people have survived this wicked illness for years and your mum can too. Thinking of you and your family and here if you need to talk. Best wishes. Emma.xx

[Jackie46]

I agree with other post. I thought i sent one yesterday but not sure it registered. In essence needs to be your mums decision but with as much information as possible. Mine was picked up incidentally after a scan for something else so I've been lucky. However it is really important to question decisions about management. With your mum look at what clinical trials are out there as well. Have a look on the cancer research uk website and ask her consultant and cancer nurse specialist. I was on a trial that shrunk my cancer before surgery but a lot of these drugs are used more in later stages. As family be there to support your mum. I think it's often worse for families and I know mine have got very frustrated with me at times. As the person with cancer you can feel like you've lost control of everything and may act irrationally at times. I know I have.

I wish you lots of love and hugs. Not sure if this helps but I hope so x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear shtks,

The mental health of people with cancer is a vital part of their overall well being. Your mum’s initial reactions to her illness might not necessarily reflect what she is really feeling just now. Remember you will both be dealing with powerful emotions such as shock and disbelief at the recent diagnosis. The fact that you are considering phoning the Mc Millan nurse is good as you and other members of your family may need their help and support to deal with the mixed emotions you will all be experiencing at this time.

It is very important that your mum’s pain is well controlled. Some people experiencing pain often see pain as a sign of advancing disease and this contributes to psychological symptoms of fear, depression and anxiety. Again, the Mc Millan nurse will assess your mum’s pain and the effectiveness of her medication and adjust her doses accordingly. She will keep in touch regularly and will be a good source of support.

Sometimes, people try to protect those closest to them from the truth by denying it, even though they are aware of what’s happening. You mentioned in your post that you have other family. Talking openly with each other about your feelings can help support you, your mum and other family members through the anxiety and uncertainty of the future. You may find that your relationship becomes stronger as you face the challenge of your mum’s illness together. Knowing that you will be there for her throughout the weeks and months ahead will help to reduce your mum’s anxiety. When words fail you or don’t seem enough, a hug or holding her close as you mentioned in your post can be very comforting indeed.

When the time is right, it might be worth reminding your mum that she will probably have good days when she will feel better than the bad days when her energy reserves may be lower during chemotherapy. You also mentioned your mum used to stay with you at week ends, although the future may seem uncertain for both of you, it’s important to talk about planning to do nice things and make the most of the days when she is feeling better after the chemo has finished.

You and other family members may need information about what health and social services are available to you locally. The benefits of having a local Mc Millan nurse for support is that they can carry out a full assessment of your mums physical and psychological needs with you present and let you know of other services you may call on in the future should you wish them.

Your mum will be followed up in the clinic after her treatment, be sure to write down any questions you have for the doctors and nurses. She need not make decisions in isolation. Many people respond very well to their treatment and although cannot be cured symptoms can often be managed well.

You will be the best person to know if you should advise her to fight the compulsion to withdraw from the world or others around her and remain active and engaged as long as possible.

Please don't hesitate to call the Helpline if you need someone to talk to 0800 358 7200

All the team at Roy Castle send their kind regards.

[Marieke68]

Dear Emma,

Did your mom have a mutation test (genetic sequencing) or is she checked for PD-L1? Also my mom has nsclc adenocarcinoma, stage 4 (her GP also failed to check for cancer for 2 years although she even had cancer 2 times before in her life, breast and ovary). However, she had a biopsy which was tested for mutations and turned out she has the EGFR mutation. Therefore now she has targeted therapy and is taking pills (Iressa) instead of chemo. This is much more convenient than chemo and has less side effects.... It's a very rare mutation but there are many more they can test for. Don't know what type of lc your mom has and if mutationtesting is useful for her (or maybe she had all these tests already) but would ask her oncologist for sure. Or I would ask a biopsy tissue tested for PD-L1. If the tumor is PD-L1 positive she might be able to benefit from a immunotherapy (Opdivo,Keytruda) which can have very good results in some patients.

Not sure if this helps but I hope so...

Take care

Marieke