Forum etiquette

[scotleag]

Hello all. I'm on Health Unlocked for a different condition but I've been reading posts on this forum for almost two months. My query is if it's okay for me to post here with regard to someone else or is it only for people diagnosed. I ask because I don't want to post something if it's against forum rules.

[Cockailschemocancer]

Hi there.yes friends and family have posted about other people so I’m pretty sure it’s fine.

[jillygirl]

There shouldnt be a problem.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear scotleag

It is fine to post for someone else if they are kept anonymous, people often post about their loved ones and those they are worried about. It is considerate of you to check the etiquette on the forum.

If you would like to discuss anything privately, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, all calls are confidential and phone calls are not recorded.

Kind regards

The Roy Castle Support Team

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi scotleag

You may wish to look at the guidelines on 'safeguarding the community of health unlocked' support.healthunlocked.com/....

Kind regards

The Roy Castle Support Team

[JanetteR57]

During the pandemic I noticed a change in people posting online in closed social media groups as well as on sites like this - and it seemed primarily from relatives worried as they could no longer accompany their relative or friend to the appointment and were concerned that a) the relative might not be telling them everything, b) the relative might not have heard or remembered everything that was said and c) seeking reassurance that somebody else might understand and be able to support them. Such online groups are active throughout the night and weekends when often charity support lines are not staffed so provide a vital medium for those seeking help. Some state who the relative is e.g. my brother, partner etc but most operate under pseudonyms although not all do - so do be careful.

hope you find the answers and support you're seeking for your connection. good luck.

[scotleag]

Thank you all for your very considerate responses. Rather than start a new thread I’ll explain the situation here. Seven weeks ago my wife had an X-ray and CT scan which showed a shadow on her left lung. At a meeting with a consultant and nursing team two weeks later it was confirmed she had a tumour. Since then she’s had a PET scan, bronchoscopy and biopsies and has to have a guided biopsy next week as the samples taken thus far haven’t provided enough information to recommend any particular treatment.

This came out of the blue for my wife (though I had raised concerns with her a few months previously when she suffered a lengthy bout of incessant coughing) as her original x-Ray was looking for a suspected cracked rib after she had a sudden onset of immense pain, so bad she went to the urgent care unit at our local hospital where the X-ray and CT scan were done. Our world has been turned upside down and the medical processes involved are confusing. We’re not stupid people but sometimes it’s difficult to keep up with all that’s being said and done. For example the hospital phoned a few hours after her PET scan to schedule her bronchoscopy for the following day. They explained that the PET scan showed nothing on her neck that would prevent the bronchoscopy from going ahead. But when I spoke to her named nurse a few days later she said something had been found in her neck as well as her left lung.

When she had the appointment with the consultant life still seemed fairly normal but since then there has been a distinct and sharp deterioration in her health. She hasn’t been able to go out alone for over a month and when we do go out together it’s just for a short walk with frequent stops and usually we’re back home within an hour.

She is 65, of average height and build, and otherwise in good health. Prior to this she would go on long walks, do a lot of gardening and enjoyed swimming. Her appetite is good, she hasn’t lost any weight and isn’t in pain (there has been no recurrence of the pain which prompted her to get the initial X-ray) but she feels incredibly weak and has a lot of tightening in her stomach, particularly when wakening up. She says she isn’t having problems breathing but I can see any exertion results in laboured breathing.

Additionally, the hospital visits are subject to increased stress. Not just the stress of the appointments and procedures but the fact that we live 25 miles away (our local hospital has no cancer specialists), rely on public transport and are both classed as clinically vulnerable to Covid. My wife has had three vaccinations, I’ve had five and while we don’t know how effective hers have been, I’ve had a blood test which was negative, meaning I haven’t developed any antibodies. Although we are masked, travelling by train, bus and taxi with a lot of unmasked people to a hospital where again most are unmasked is an added worry as the last thing we need right now is to contract Covid.

I know every case is individual but I’m looking I suppose for general guidance on what to expect as matters develop. In particular I wonder if anyone else has had similar symptoms to my wife and if so how things progressed. For example is the lack of pain something likely to continue or does she face much more difficult days ahead? Is there anything that can be done to alleviate the physical weakness? Does anyone have any advice on how to handle things in general? We don’t have any informal support system in place. The nearest family members are three hours drive away and enforced shielding more or less since March 2020 means we don’t see friends all that often. So it’s basically just the two of us on our own. We’re taking things day by day at the moment. All we know about the future right now is that the guided biopsy should allow specialists to devise a treatment plan but the worry certainly at the back of my mind is that this new biopsy will provide no more information than the previous ones. What happens if that’s the case? She can’t just keep going to hospital for procedures which produce nothing of medical value.

I apologise if this is too long but I wanted to set down as much as I could in order to better inform anyone able to offer any advice.

Thank you.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to scotleag]

Hello Scotleag,

Sounds like there are a lot of things going on just now, this period around diagnosis can be very difficult, lots of planned investigations with no answers just test after test and understandably this causes a lot of anxiety. All these tests are to give the medical staff involved the best picture of your wife’s lungs and moving forward the best way to progress with treatment.

Once all the investigations are complete treatment will be decided with all the staff involved from the radiologists to the consultant oncologists, this is called the Multi-Disciplinary Team (MDT) after this meeting you will have an appointment where they will discuss treatment plans with you.

We have a booklet called “ Managing Your Lung Cancer Diagnosis” this explains the process of diagnosing lung cancer and gives you an idea of what to expect, this booklet will guide you through the various investigations and what to expect from them, I have added a direct link to this below.

roycastle.org/app/uploads/2...

We have other booklets here roycastle.org/help-and-supp... these contain various types of treatment and what you can expect from them.

If you would like to discuss anything you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on

0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[scotleag in reply to RoyCastleHelpline]

Thank you very much. Have downloaded-

[sassassas]

Hi scotleag I'm sorry to hear about your wife. I'm a spouse too - its my husband who has NSCLC.

I am about to rush out of the door so please excuse the quick response - there is so much to say to reassure and help!

Firstly, can I suggest you do copy this into a new post? Because you're commenting on an existing thread, I don't think it comes up again in people's feeds. I think you'll find you get more responses with a new post. You raise lots of good questions and lots of people here will have very valuable advice.

With Covid, your wife will be able to get the anti-viral medicines which are really effective if they are administered promptly. But you do need to have registered for these and have a PCR test ready in your cupboard. Your GP should be able to advise how to do this (and also make sure you're both getting all the boosters you need).

Its good to hear she is generally in good health - this will mean there will be lots of treatment options open to her. We would certainly recommend keeping as fit and healthy as you can as it will help with whatever comes next.

My husband is living with stage 4 lung cancer - he is as fit and healthy as he was before diagnosis - he's a very fit 55 year old. He had pain in his hip which was what led to the first scan but bizarrely it went away before treatment started. So, please don't assume that your wife's condition will only deteriorate.

It may take some time to get the complete diagnosis and staging for your wife - bear with it - we all know how hard the waiting is but it means her team will be able to get her the best treatment for her specific cancer type from the start. Are you at a good cancer hospital? They should be doing molecular tests so that they can determine if a targeted therapy is the right option, and looking at its PDL1 status to see if immunotherapy will work.

If either of you need emotional support or help with understanding the cancer and treatment, Macmillan has an excellent support line (chat or phone) as does Roy Castle. The people there are just brilliant.

To your point about not being stupid but finding it hard to keep on top of it all - totally get this. My job is to take notes at the meetings so that we can remember what was said afterwards! We also make sure we get copies of all scan reports emailed to us. Not everyone wants this but for us, its been really useful.

Hope this is helpful and best wishes to both of you.

Sarah x

[scotleag in reply to sassassas]

Hi Sarah,

Thank you very much for this. It's greatly appreciated and there's a lot of good advice there which I shall try to follow up. I'm sorry to hear about your husband's diagnosis and at such a young age too.

I've checked my wife's Covid vaccine status and unfortunately she isn't eligible for a booster. I suspect the lack of a formal diagnosis and - as of now - no treatment means she won't be considered clinically extremely vulnerable. She will of course be eligible for the autumn booster campaign for over-50s.

I'm afraid this part of your post has me flummoxed:

"Are you at a good cancer hospital? They should be doing molecular tests so that they can determine if a targeted therapy is the right option, and looking at its PDL1 status to see if immunotherapy will work"

I've no idea whether the hospital is good or not but I do know it's the only one within 75 miles. Nor would I have any idea how to go about checking its status, not that it would make much difference as the next nearest would require two hours by train followed by an hour by bus and the same back again. Also I've no idea about what molecular tests are. All I know are the procedures that have been carried out and the one next week. Though it's something we could raise when we finally have another consultation.

I particularly bear in mind your suggestion about taking notes. Right now I think if I were taking notes I'd lose concentration on what was being said but at the next consultation I'll ask for a full record to be posted out to us.

Thanks again for taking the time to respond and my best wishes to yourself and your husband.

PS As I've received a number of replies here I won't start another thread.

[JanetteR57 in reply to scotleag]

you could always ask if you can record the meeting on your phone... then you can play it back when you have more focus.

[JanetteR57]

Sorry to read of your anxiety which is perfectly understandable - I had a similar experience back in October 2010 - after going to A&E and a chest x-ray showing a 'lesion' but readmitted the next day and misdiagnosed and kept in for a week treated for 'uncontrolled asthma'. I'd had that as a child and young adult and not had it in decades and it felt quite different. CT scan showed a 'large mass' in my left lung but it took over a month to get a CT scan then sent for a PET scan... then referred to see a consultant who said whatever it was it needed removing surgically with half my left lung. Like your wife I hadn't lost any weight, was relatively fit (swam 130 lengths several times a week), working full time but exertion took any breathing ability away..I was 52 - I had surgery in the December and in mid January learned it had been a type of non small cell lung cancer. I raised funds for Roy Castle lung cancer foundation, attended one of their events held in Birmingham and was encouraged by another patient advocate (a nurse) to get more involved.

I've been involved in lung cancer research since the end of 2013 and can only say that things have changed beyond recognition in every sense.

Many breakthroughs in treatments have meant more and more information is needed upfront to determine what is going on, and what the most appropriate treatment might be whatever the condition. Not everything that might be suspicious turns out to be although they can still be nasty conditions even if not malignant.

Sadly the pandemic changed a lot of the system and put many aspects of the service under pressure.

I initially recovered well and returned to work, swimming and travelling - from 2015-2019 I ended up in hospital most years with serious chest infections - most of which produced far more severe symptoms of breathlessness and fatigue than my original diagnosis/treatment. None of them turned out to be not sinister (even with my background) but took time in imaging, bronchoscopies and blood tests to determine what they were and once identified and on appropriate treatment they all responded.

Hope this might reassure a little - it's a complex area - not helped one bit by covid.

The stress and anxiety of travel only add to the difficulties you're experiencing... could you drive? could you get a friend to take you? are there community groups in your area offering patient transport so you could avoid public transport?

Have you asked the nurses in the local hospital whether are any local support groups to help you?

I found keeping myself busy at home and work reduced my time to think about the 'what might be' and 'what if' as there's no amount of anxiety that will change the outcome. Stress itself can cause some awful symptoms including breathing difficulties.

Better to fill your time with more enjoyable things and thoughts then deal with the 'what is' when more answers are known. appreciate it's not easy so hope you get some answers soon. thinking of you both. x

[scotleag in reply to JanetteR57]

Hi Janette,

Thank you very much for this and it's good to hear that despite ongoing issues you've coped with this so admirably and got involved in research. The transport issue is, I'm afraid, not going away. As I said, we are a long way away from family and we haven't seen many friends thanks to Covid. On top of that we've lived in several different places and our closest friends are scattered across the country. There IS a patient transport scheme but it's heavily subscribed and so far we haven't received enough advance notice of appointments to be able to make a booking. Mainly we go by train then taxi from station to the hospital but we were advised not to take public transport after the bronchoscopy and ended up paying £80 for a taxi! I have epilepsy and am not permitted to hold a driving licence.

I certainly take your point about filling the time with enjoyable things. We are lucky in that we live by the coast so a walk to the sea is just a few minutes away. But other than the hospital we've had just one short break (three days) since the onset of Covid. We'd reached the end of our tether and we had several trips planned for the summer then this happened.

Fortunately my wife is an avid reader so there is no problem in filling our days with pleasurable pursuits which also act as a distraction from what's going on.

Best wishes

[JanetteR57]

That sounds positive that you have hobbies and enjoy reading. Understand re travel constraints - even in the area I live which has low car ownership, when our local Trust lost its chemotherapy service, it was £25 each way for an uber for the centre where chemo had moved to and really cumbersome to arrange non emergency patient transport through the trust especially for those otherwise relatively fit/working etc.

Some areas have local community groups able to step in - your hospital should know about them.

I also appreciate about having friends scattered across the country - having lived overseas for 2 years, I also have few local friends - but found some invaluable ... some I'd have hoped to be there sadly weren't - maybe unable to cope with the news but generally I've been humbled by people I've met through getting involved in cancer research community. Many of us are 'buddy supports' as we understand what it's like.

That's the beauty of online forums - usually always somebody online - Roy Castle lung cancer foundation offers many support services - but whilst you're awaiting diagnosis and more information, it may be more frightening to join support groups if she doesn't end up having that condition....

do ask your GP and hospital what more they can do to help... some Trusts have the service of a lung clinical nurse specialist before they're diagnosed to help signpost to other services, some have 'care navigators' to help people work through their way through this minefield - do hope you get some support soon... sadly the pandemic is continuing to pressure health services especially respiratory related before the heatwave hit.... good luck.... roycastle.org/about-lung-ca...

[scotleag]

Updating this. Yesterday marked the 62nd day since my wife's urgent referral by her GP, the latest day by which she should - according to targets - have started treatment. Yet we still have no idea of when this will be. Her guided biopsy was cancelled last Thursday (this was our 'fault' as she took an aspirin three days beforehand, not having realised it was on the 'forbidden' list) two hours after she arrived for it. But even if it had gone ahead there's no way treatment would have been started by yesterday.

Instead she had another PET scan on Monday. Thursday's abortive visit took so much out of her she didn't think there was any way she could make it to the hospital on Monday so her specialist nurse advised a (short) course of steroids. Her GP prescribed Prednisolone which she has being taking since Saturday but these are scheduled to run out tomorrow.

If the latest PET scan still hasn't produced enough to satisfy doctors (and from a discussion with her specialist nurse yesterday that appears to be the case) then she will have to have a re-arranged guided biopsy a week tomorrow.

That will be 71 days after referral. Then there'll be a wait for results, consultation between medics and finally a consultation where treatments will be recommended. We're now talking around a full three months after referral. Plus there's no guarantee the new biopsy will be any more successful than all the others. What then? Surely a course of treatment will have to be recommended at some point based on best information available. And if that's the case why not now?

Won't delay in treatment be more harmful than starting it now, especially as everything undertaken in the past month has produced exactly the same result?

Meanwhile the only thing helping her to approach anything like normal living is the steroid which runs out tomorrow. Does she get a fresh prescription? What side effects can this produce?

It really feels that we're no further forward now than we were two months ago at the time of the referral.