lung cancer - please help

Hi Daisy _ Chain, So sorry to hear about your Mum, Your mum should have a lung cancer nurse specialist assigned to her. (if not do ask for one, they are invaluable to your mum and her family for explaining what is happening etc.) Here is a link which explains the numbers.https://www.cancerresearchuk.org/about-cancer/lung-cancer/stages-types-grades/tnm-staging

You can also contact the roy castle nurses on

03333237200

or have a look on there website where you can order booklets (free) .www.roycastle.org

I wish your Mum well and hope all goes well.

I am a lung cancer survivor of 7 years ago , and your mum will be in very good hands. x

Hi there,

Not sure I can be of any practical help but just wanted to say I am so sorry to hear about your Mum. My mum is in a very similar boat (she was diagnosed about 6 weeks ago and it came as a huge shock to us all- she’s in her 50s previously fit and healthy etc.)

We found the waiting to be really hard and also looked into speeding the process up. When we spoke to the doctor about this (we were with NHS and enquired about going private / second opinions etc) we were advised to ‘trust the process’. They said that tests and scans and things need to be done in a certain order and it can be risky trying to speed things up as things can get out of whack.

I found the waiting and not knowing excruciating (I still do!) and my mind tends to go to worst case scenario- but we were reassured that no matter how scary the diagnosis sounds (Mum has stage IV NSCLC) nearly all types of lung cancer are treatable in some way and as other posters have said, technology has advanced so much in recent years.

Wishing you and your family the best, and sorry you have to go on this journey. Xx

Hi Daisy chain, So sorry for your bad news about your moms cancer. Firstly DON'T worry. Your mom has been seen and the wait from diagnosis to treatment is about 8 weeks. I know this as my wife was diagnosed with advanced small cell lung cancer in February 2019. Sadly her G.P cocked up last year or it would have been found sooner. My wifes is on her left lung (the size of a golf ball) and is attached to her heart. Your mom will feel like it is taking ages but time drags when you get news like this. She should have a Lung nurse assigned to her so contact the hospital and ask for one. They will probably do a biopsy also but reassure your mom she is going to be fine. She has age on her side and sounds like a family that care!

My wife is now through her second cycle of Maintenance Chemo and is okayish. She has good days and bad days but they are keeping her alive.

God Bless you all and GOOD LUCK with everything.

J

Dear Daisy_Chain_12345

So sorry to hear about your Mum and the impact of the shock this has had on you all.

There have been good responses from the forum and I see Jillygirl has sent you a link on staging.

The T represents the size of the cancer: 1, being small up to 4 being large and the N represents the amount of spread to lymph nodes ( 0 being none and 3 lots of nodes involved)

It is frustrating the time waiting on investigations and results, once the PET scan has been done they should have a clearer picture on the cancer and what the best treatment plan will be for your Mum. It is encouraging that your Mum feels well.

Perhaps have a chat to the lung cancer specialist nurse about the process as each Hospital may be different. Is there a date for the PET scan? and they may plan to do bronchoscopy and biopsy. I have placed a link here about investigations, diagnosing and treatment from our web site, managing lung cancer diagnosis.

roycastle.org/system/file_u...

Useful websites for information are:

roycastle.org 0800 358 7200

cancerresearchuk.org 0808 800 4040

macmillan.org.uk 0808 808 0000

If you wish to discuss anything you can call us on our freephone nurse led helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

Hi Daisy, sorry to read your mum's news. I was 2 weeks after my 52nd birthday (8.5 years ago) when I turned up in A&E, otherwise fit and healthy with symptoms I'd never had previously. Despite it showing on chest x-ray, it was misdiagnosed as asthma and after a couple of months, CT and PET I was referred to a lung surgeon. I was told I had a large mass in my left lung and had to lose half my left lung whilst they found out what it was and decided any follow on treatment. I was told then they were treating it as lung cancer until they found out otherwise. Received my diagnosis on 13/1/11 - almost a month after surgery and 3 months after turning up in A&E. It was lung cancer - thankfully hadn't spread. I've also been told there is something on my liver each time I have a CT but as with the lung, my follow on treatment has been 'watchful waiting' as the specific type I had didn't response to chemotherapy. In the last four to five years I've been involved in lung cancer advocacy/research and attended many cancer conferences in the Uk and internationally. There have been improvements in every type of treatment and access to a wide variety of new treatments and new combinations of existing treatments - but all are specific to certain lung cancer characteristics - it is not one size fits all approach. This is the reason for the many tests and the length of time it takes to get histopathology/cytology results exactly right as treatment targets different markers/mutations or signals given off by the specific effect of the cancer on our bodies. I know it seems to take an age but it's really important for everyone's sake that the correct treatment is targeted at the characteristics of the tumour and the patient. There are national guidelines in place for the optimum treatments and times and going private is unlikely to improve outcomes - the best centres are reported to be those where more patients are treated i.e. NHS centres. Incorrect treatments can cause harm so better to wait it out and have the best possible treatment available. Lung cancer treatments and research are very fast moving which is why information on the internet can be so unreliable and out of date so if you must access the internet, suggest you use trusted authorised and regularly updated websites such as Roy Castle website. Incidentally I have had pneumonia in recent years and other respiratory conditions but so far the cancer has not returned and I returned to work, active life including swimming and travelling. I've also met patients at conferences and workshops who have survived many years. N0 means it has not spread to lymph nodes. good luck.

I know. My dad had bowel cancer in his 50s and it returned within 6 months after he'd had surgery and had spread. What I now know is that they hadn't removed it all. He was in hospital for several months and we didn't think he'd reach 60. He was 89 in February and is my mum's carer (she has alzheimer's) at home and 2 years ago, he had another bowel cancer and more major surgery, went down to around 7stone and looked so frail. Thought we were going to lose him - and I wanted to ask lots of questions - but he wasn't interested - he just wanted to get home to my mum and familiar surroundings. I certainly felt worse and powerless when it wasn't me being told the information than when I'm the patient. take care x

Daisy.... my heart went out to you... family sometimes suffers more than patients...? I too hade 2bouts of pneumonia and pneumonia biopsy.. diagnosis stage 1 cancer lower right lung.l .. can do no surgery because of location..have had two pet scans.. that God for that test...,3 months later cancer still stage 1...no growth... there r options open to me should I decide path I will take... my situation different than your moms... I’m an otherwise healthy 87 years old. your serious worry is the he reason I may decide to do nothing..for the sweet hurt u feel I do not want my last days to be sick from the procedures making me ill and my family worry and concerned ....I want to stay the course and healthy as I can be to enjoy my children/husband. I experience no pain.. with procedures/mediation I will b ill and might ? need help from my family...I chose to do nothing..,I will probably die from heart attack r stroke .. plans r pet scans every 3 months to locate any spreading to other areas.. sweet Daisy. You r hurting so much with ur concern of mother..?listen to her her doctors ..as time passes

Hi all

We had the pet results yesterday and they weren’t great. My mum is T4, n2, M1c. There were some suspicions on the pet that they think are cancerous on her ribs and spine so they’ve said they can’t do surgery now and we have to try chemo. We have an appointment with the oncologist on Tuesday.

I can’t stop crying and feel devastated. She looks and sounds so well so I don’t understand how this wicked disease is spreading around her body 😢 I looked at survival rates and wished I hadn’t as now feel even worse and so sick. I have 2 young preschool age children and I just can’t pull myself together to be a fun mummy for them. I just want my mum to be ok 😢

My heart goes out to you, your Mum and family. This is undoubtedly a very difficult time for you all. I was diagnosed with nsclc which had spread via two lymph nodes to my spine and femur in February 2016, having just turned 53. I had 7 days emergency radiotherapy on my spine then chemo until I could no longer physically tolerate it. For a year I had no treatment other than Denosumab injections to help protect my bones, then when I had further disease spread in my neck, lower spine and pelvis had another blast of radiotherapy and started immunotherapy, which I have been on since December 2017. My prognosis back in February 2016 was 9 months and at present my disease is stable so I wouldn’t dwell too much on the survival rates and there are new treatments being developed all the time. In fact immunotherapy has only been approved since I was diagnosed. I appreciate it is a frightening time, but where there is life there is hope. Having the support of family and friends makes a big difference, doing things you enjoy and making memories. I have met some lovely people during my cancer journey and many medical professionals who have gone above and beyond the call of duty to help. I hope your Mum copes well with the chemo and it helps. Our local Hospice provides support for outpatients and their families as well as inpatients and you will probably find yours does likewise. There may be services offered that your Mum and you would find helpful. In a situation where you have little control I feel it helps to take what control you can and I have done quite a bit of research into nutrition and feel I am doing what I can to help myself diet wise in this fight. As your Mum looks and sounds well, she is at an advantage starting her treatment. I hope all goes well. Sending you both love and positivity x

Please feel free to ask anything you like. I have been very open about my situation in the hope of raising awareness of lung cancer, particularly in never smokers like myself and in encouraging others battling the same horrible illness. I was so ignorant I never even knew a never smoker could get it until I did. Not that I am suggesting it is in any way deserved by smokers as nobody deserves to get this horrible disease.

I had emergency radiotherapy because due to the cancer having spread to my spine my spinal cord was about to go into compression. I had been being treated for pulled intercostal muscles with referred back pain. I had none of the usual lung cancer symptoms other than extreme fatigue. I managed four cycles of combined carboplatin and pemetrexed then five of maintenance penetrexed before it was making me too ill to continue, but had helped reduce the cancer. I don’t have any of the mutations for targeted therapy but your Mum might so that may be another option for her treatment.

Re nutrition, I have homemade granola for breakfast using a recipe from a nutritionalist/ herbalist which I could scan for you if you like. It is very nutritious. I also have a Yakult drink and a bowl of fruit. For lunch I have tuna, nuts and fruit and for dinner usually some sort of fish, often salmon and vegetables. I have wholemeal bread and drink mainly water or herbal tea. I am not gifted with that great willpower so do have treats, particularly chocolate, low fat crisps and the odd glass of wine. If I go out for dinner I have whatever I feel like. Supplement wise I take turmeric with black pepper, garlic, omega3, vitamin D, evening primrose oil and salvestrols.

I am aware of the assumptions made by some about Hospices but the one I attend is great and I expect others are too. I go to the gym there and there is always an OT or physio on hand, Tai chi and have just started a singing class there. They offer treatments like aromatherapy massages for outpatients and their carers too. There is a drop in centre where people can spend the day chatting, trying various art and crafts, etc. with lunch provided. It is about living and making the most of life however long that may be. I find it a positive place where I have met some lovely people and we have some laughs.

Something else I have found beneficial is reflexology, not least to help with relaxation. If you and/or your Mum have trouble sleeping there are some sleep meditations and sleep hypnosis sessions on YouTube you may find helpful. x

Thank you for your quick reply

If you could scan the recipe that would be wonderful thank you. I’ve just ordered the turmeric and black pepper plus cod liver oil for my mum. I’ll look at the others you have suggested too - thank you for the suggestions. Does your oncologist support you taking these?

We are waiting for the marker results so hoping we will get those next week. They seem to be taking forever. Almost 4 weeks now.

Are you still having treatment now? I’m frustrated that it’s taking so long to start treatment but understand they need the full picture. I just wish the results didn’t take so long. Since diagnosis my mum has developed a cough and now has a slight pain in her rib. I worry that it’s the cancer advancing before we can fight it. Although despite those two ailments she looks brilliant and fit so it’s hard to believe that this horrible disease is inside her. It breaks my heart

I would also love to raise awareness of non smokers getting nsclc as I my family and I had no idea you could get it either x

Having a bit of a problem getting a scan of the recipe to paste into my response. Will see if my husband has any ideas when he gets home later.

I am sorry should have explained that the evening primrose oil is for mastitis which I have had for years, rather than cancer, the omega 3 is to try and reduce my ‘bad cholesterol’ which has increased on the immunotherapy and the vitamin D is because I wasn’t getting much natural sunshine. It is really the turmeric and black pepper, garlic and salvestrols I am taking to try and help specifically with the cancer. My oncologist is aware of the supplements I am taking and has raised no objections.

I am still on treatment, immunotherapy as well as the denosumab injections to help protect my bones. In fact I am due immunotherapy again on Wednesday if tomorrow's blood test results are ok.

Can understand your frustration with the delay and I recall I was waiting quite a while to find out what type of tumour was in my lung, whether it had any mutations which would make it suitable for targeted treatment (it didn't) and it was subsequently tested to see whether it had any PDL1 expression (it did at 5%). Whilst it is annoying to have to wait so long it is obviously vital that your Mum receives the most appropriate treatment for her.

The cough your Mum has and pain in her rib may be totally unrelated as obviously we can still get coughs and colds like anyone else. It may simply be a bug with the coughing causing the slight rib pain. I hope you get answers soon and the situation proves to be more positive than you are anticipating.

Re raising awareness, I have shared my story where I live for lung cancer awareness month in the last two years in writing and I did radio and local tv interviews. I am sharing it again to encourage attendance in a Golf Day to raise money for the RCLCF. I think it is helpful when people speak out about lung cancer as it is sadly somewhat of a ‘poor relation’ when it comes to funding, despite the statistics. People need to know it can actually affect anyone with lungs!

Please post to let us know how your Mum gets on.

Sending love and positivity. x

Thank you Manninmaid for you reply. Don’t worry if you can’t send the recipe tonight - no rush at all. I’ve just order my mum the turmeric & black pepper capsules and also some garlic and cod liver oil. Anything to help. If you don’t mind sharing, what Salvestrols do you take?

I hope your bloods were ok today and I hope your treatment goes ok this week too. I really hate cancer and seeing how many people suffer

We are seeing the oncologist tomorrow even though the marker results aren’t back. We’ve chased today again to no avail.

Thank you for your kindness in replying even though you are also having treatment and have a lot going on. I don’t know you but I know that I admire you & your strength already! And I hope that one day I can also help raise awareness about lung cancer. But first I need to focus on my mum and find away to contain this awful disease. Thanks again. x

Hello Daisy Chain

The salvestrols I use are Platinum Salvestrols made by Salvestrol Natural Products.

This is the link for the granola recipe:

deliciouslyella.com/2012/05...

Hope the link works ok as neither my husband nor I could find a way of pasting in a scan of the recipe.

Bloods were ok thank goodness and treatment went ahead. Hope your appointment with the oncologist proved helpful. x

Feeling ok thank you and after trying numerous companies I am delighted to have found a travel insurance company that will cover me to travel to Europe on a single trip basis. So my husband and I are off to Cannes for a week. Can’t wait! 😊😎

Glad your Mum has started her treatment. Hope it helps and she has none or minimal side effects. I am so glad she has such great support. I don’t underestimate the power of love, prayer and positivity. Also hope she likes the granola. Everyone who has tried it so far has enjoyed it. 🌸😊x