I mentioned in the thread 'Forum Etiquette' about the situation regarding my wife. Now, sixty-four days after urgent referral, she has finally received a diagnosis and we're finding it difficult to understand fully what it means and what it portends. It reads:
1. T3 N3 M1b left upper lobe adenocarcinoma (lung cancer) with spread into lymph nodes in neck and chest and into liver.
2. Performance status previously 0 but husband (me) reports deteriorating
Like everyone else on the planet I've consulted Doctor Google and while looking only at what I'd consider reputable sites - e.g. NHS, Macmillan - to try and understand these technical terms and from what I gather it's not good. Despite several scans and biopsies doctors still don't have enough material to suggest any course of treatment and she will have a guided needle biopsy next week to try and get, as the letter says, "more material for molecular and PD-L 1 testing to help guide systemic therapy."
The earliest her consultation suggesting any treatment is pencilled in for August 15th, EIGHTY-TWO DAYS after urgent referral.
The letter also talks about "if her performance status deteriorates she would no longer benefit from systemic treatment."
This is extremely worrying. Not only is it proving next to impossible to obtain information from her biopsies (and despite being told this next one is more likely to be successful than the others, we have our doubts), now there is talk of not being able to offer 'systemic' treatment.
She was put on a short course of 15mg Prednisolone daily for five days to help her combat physical weakness and this has definitely helped. But from tomorrow that changes to 2mg Dexamethasone daily (which her cancer nurse told me is equivalent to 12mg Prednisolone).
Naturally she is also worried about side effects from this, having already experienced insomnia pretty rapidly from even a short course of Prednisalone.
Neither of us can read anything optimistic - and believe me we've tried - from this diagnosis and while I wouldn't expect anyone on here to offer any false hope, it would help us face the future if it could be explained in more detail what it all means. By that I don't mean the TNM system as such but what it indicates with regard to possible treatments.
This is all happening so fast it's really difficult to take in. Sixty-five days ago we were enjoying our first meal out since the initial Covid lockdown with no thought of anything at all wrong. A little over two months later my wife is on steroids just so she is fit enough to attend hospital appointments.
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scotleag
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Hi, so sorry to hear of your wife's diagnosis and totally understand your worries and confusion. Not sure how much help I can be but I think T3(stage 3)N3(3 nodes) the guided biopsy is the best way forward for specific treatment and looks like they are testing for possible immunotherapy treatment. I know at this stage me saying stay positive may sound silly to you but honestly positivity goes a long way, treatment is so advanced now and there is some amazing stories. Once you have your plan it will make more sense, so many people live with lung cancer for many years. Please don't give up hope you can do this I promise you 🙏
So sorry to hear of your journey so far with your wife's diagnosis, which must be so difficult for you all. Within a few months , all your lives have changed, and it is bound to have a huge emotional impact for you all.
I assume the previous biopsies were inconclusive, hence the decision for the needle guided biopsy, which means they are still looking for a treatment option that will provide the best outcome for your wife.
Unless lung cancer is caught very early, as in stage 1, most treatments are to destroy the cancer cells and stop them spreading, along with the aim to provide extension of life, and for many people this can be a good number of years.
The PD-L1 is a specific protein that is on the cancer cell, that tricks the immune system pretending to be normal cells, however Immunotherapy drugs expose this protein and the immune system starts to destroy and stop the cancer cells growing and spreading.
It can take 2-3 weeks to analyse for these specific cell mutations, and it may be why your next appointment date is 15th August.
You could contact the oncologist secretary at the hospital to discuss further or speak to your wife's lung cancer nurse specialist. If you wife does not have one, the secretary or the GP can make this referral.
If you are looking anything up on the internet, we would advise, in addition to the NHS and Macmillan support online, ours at roycastle.org and Cancer Research UK at cancerresearchuk.org
You may be interested to know that there are many people who are stage 4 lung cancer and are a few years into or past their treatment, with new drugs such as Immunotherapy and Targeted Therapies.
You may be interested to look at NICE (The National Institute for Health and Care Excellence) guidelines on the recommended treatments for lung cancer, this is a flow chart for those that have the PD-L1: nice.org.uk/guidance/ng122/...
This link, from NICE, is the recommended treatment options for other cell mutations: nice.org.uk/guidance/ng122
We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link:
We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...
Hope you hear from others in the forum, who have been where you all are and will provide support and encouragement.
If there is anything else you would like to discuss, you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Happy for your wife's excellent outcome! How did she weather the radiotherapy? Was it targeted or to the entire chest? I may have RT in coming months and am anxious about getting through it. Thanks in advance.
It was the old method so not quite the gamma knife one.She was OK for 4 sessions but then got constipated and this caused UTI as well. Only lasted a week though.
sorry to read how isolated and confused you and your wife are at what is usually the most difficult period to get through - waiting, new language/terminology and coping with an unexpected diagnosis with little support. I remember feeling equally baffled and didn't even get the information you now have prior to my treatment 11 years ago.
The TNM scores you've been given are an international measure in lung cancer set by IASLC and they have changed twice since my diagnosis in January 2011. As you've no doubt found out the letters relate to the tumour, nodes (lymph) and metastases (spread to other organs). The letters relate so the stage as well. I've been involved in lung cancer research since the end of 2013 and have seen such a change in treatments for lung cancer in that time - not only every mode of treatment changing how its delivered (dose, agent, timing) as well as new treatments like immunotherapy and targeted agents for different types of mutations. However the downside of so many treatments is that they have to test (usually biopsy) to find out the most appropriate type of treatment whilst doing other investigations (usually imaging and blood tests) to confirm or deny their initial thoughts to either rule things in or out. This all leads to delays due to the process as well as backlog in the system as a result of the pandemic.
The performance status relates to how active/able your wife is and they've commented that although they've assumed it to be a certain level, your comments that she is deteriorating have been noted. These can be used to determine a person's fitness and ability to tolerate what can be very harsh treatments so yes, I share your concern about the length of time it's taking although it's not unusual these days.
Does your wife have a lung clinical nurse specialist assigned to her yet? If not, contact the hospital number and ask to speak to the secretary of the consultant to see if she can be allocated one to discuss her concerns.
There are many and different treatments even for advanced lung cancer but they're much more targeted now than blitzing everyone with harsh radiotherapy or chemotherapy and hoping for the best . Steroids are commonly given to alleviate symptoms not only of cancer but I've had them for long courses at high dose for nasty chest infections since my diagnosis and like your wife, experience sleeplessness on them - but they can be useful in the short term. I hope you get some answers from her clinical team who can be much more specific based on her results when they have them but know from patient friends and colleagues in LC research that some do respond to treatments which can often include combinations of treatment types.
Rather than googling generally, and although macmillan and CRUK are trusted sites, they're not lung cancer specific - I'd suggest Roy Castle Lung cancer foundation to be informative, in plain English and regularly updated information. If your wife is found to have specific mutations like EGFR or ALK then there are other charities for those with much more detailed information about patients and treatments with those specific mutations. Good luck to you both. roycastle.org/about-lung-ca...
Hi scotleag Thank you for sharing your wife's latest situation. I'm sorry to read it - its such a horrible time for you both.
I can see there have been some really helpful posts already so I'll try not to repeat any of the advice given there.
I've just looked back at the process my husband went through - he had an MRI for hip pain in mid Feb '21 and this was the 1st indication something was really wrong. Next was a chest CT, liver MRI, a different chest CT and then an EBUS procedure to get a sample from a lymph node. Unbelievably this biopsy contained only normal tissue. He then had a CT-guided biopsy of his lung and this got the sample needed to confirm it was lung cancer. That took a month.
We then had to wait almost another month for the genetic mutation testing to be done (and decide the plan). This was done in two ways, tissue from the biopsy looked at under the microscope and also a blood biopsy (where blood is taken and sent to the US. They look at what's called the circulating tumour DNA (ctDNA) - i.e. DNA that the cancer cells shed into the blood).
His performance status was classed as P0/1 at the point at which he started treatment. His treatment is really successful and he is 'no evidence of disease' at the moment. He started with huge tumours in both lungs, lots of lymph node involvement and many mets in many bones (the biggest being 8cm in his femur) and I hope that gives you reassurance that today's systemic treatments can be really effective, even when there is lots of cancer through the body.
I know you'll understand when I say those 2 months were horrendous. We just wanted to get some treatment - any treatment - before the cancer grew further. The cancer team though was very clear that the best way is to wait and get a personalised treatment plan in place. We knew from the PDL1 result from the biopsy that my husband would be able to have immunotherapy if he didn't have any genetic mutations but the final piece was finding that out (he couldn't have any of the targeted treatments).
His cancer team wasn't worried about the additional weeks we waited to start treatment - they didn't think his health would suddenly deteriorate to such an extent to change the plan, and in fact, they were right, it didn't.
Its good to hear you have the needle-guided biopsy and the treatment date booked in. You could ask your team about getting a blood biopsy simultaneously perhaps as these only need a blood sample (to get info about genetic mutations). I don't know how widely available these are on the NHS though, but it may be worth asking.
I hope this gives you some comfort that waiting for a number of months is fairly common but it means the treatment plan will be the best it can be. Whilst you wait, keep looking after her, and look after yourself too.
Hopefully all the information other people have put here will help a little. The time between diagnosis and treatment is the worst. I too had to have a second biopsy but it is worth it as if there are mutations then there is specific treatment that is more beneficial for those.
The only other thing I would suggest is ask for sleeping tablets from your GP as the steroids are harsh for the insomnia also if your wife is very anxious maybe some anxiety meds too.
I took everything that was offered and it really did help and don’t forget for you too as it’s not just your wife going through this.
I hope you start to get some news soon, take care and try and enjoy some more meals out.…
Thank you all for your messages. I thought I'd respond here rather to than each individually though they are all greatly appreciated. To answer the most commonly raised questions, yes I'm looking at Roy Castle and CRUK as well as Macmillan & NHS. Also my wife does have a specialist nurse though we can't always get a hold of her. There is a team of four and one of them always gets back to us.
I should have mentioned that an additional problem is that a return trip to the hospital is over 50 miles (and that's where any treatment would be too). We are reliant on public transport and even if we could arrange some kind of patient transport that doesn't reduce the distance any and the trips by themselves are quite draining for my wife.
We don't live out in the sticks. We're in a town with decent transport connections, just unfortunate that there isn't another hospital that treats cancer nearer to hand.
Thank you all once again for your kind, considerate comments.
Hi Scot, thanks for the update. Please do let us know how you get on. You will always find support on this forum and someone who has been through what both you and your wife are going through. xx
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