Queries made with NHS

[ginkgo]

Q1: Why do my records say 'possible' squamous cell, when I had a biopsy.

A: we were told that it had been confirmed to us at a meeting on 11/11/21. but the resulting report still says 'possible' and neither me or my husband recall being told a confirmed diagnosis. Reason given: we were too upset to hear, even though the report confirms my version!

I admit many reports can be faulty, one having told us we were on holiday while I received chemo, which was NOT true.

Lots more questions were submitted, but I have lost my voice which makes telephone converstions very difficult, via text to speech software.

I will update as more answers come forth, but they are as follows:

2: Why no follow up after radiotherapy? I had to ask (push) for a follow up after 6 months.

3: Why no further action when the tumour reduced to 2.5cm and me feeling fit as a fiddle?

4: Why assume enlarged lymph nodes are cancerous without a biopsy? My tumour reduced from 9cm to 2.5cm and I have read that lymph nodes can become enlarged when disposing of waste material from radiotherapy. Is this true?

5: No metastases. I asked about surgery after Question 3, but was told it was a nonstarter because of initial diagnosis, ie. no surgery for stage 4 lung cancers.

6: Advised that stents weren't worth considering dur to future problems caused by them. I queried this as my husband has circulatory stents which have been excellent. I was told bronchial stents are a different ballgame, but then I read here that one gentlemen had received 3 bronchial stents. Which consultant was correct?

7: I had 2 sessions of palliative radiotherapy of 8 gray each which worked a small miracle by reducing tumour from 9cm to 2.5cm, but I have been advised no more radiotherapy can be given. True, or not true?

Sorry to be a pain and keep harping on, and I am NOT chasing compo. I want to ensure that no other cancer patient is fobbed off with no treatment. Most of this refers to the respiratory team decisions and they are the ones answering. Can we trust them to police themselves?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi ginkgo

Sorry to read you have had treatment for lung cancer and encouraging that the radiotherapy had reduced the tumour from 9cm to 2.5cm.

From what you say, you have presented these questions to the NHS? It would be best to make an appointment with the consultant to have your questions answered.

Meanwhile, we can provide some information in response to your queries.

1. Sometimes, pre biopsy the doctors may place 'possible' as part of the referral process and if a biopsy is inconclusive, it usually states it is so.

2. Follow up post radiotherapy, can be from 6 weeks, and then 3- 6 monthly, this can depend on the oncologist and hospital.

3. Only the oncologist can answer this question about no further action, and it is good you felt well.

4. A PET scan can show up any lymph node activity which can be suggestive of cancer, other reasons can be infection or inflammation. Not every one has a biopsy of the lymph nodes and often it can be taken that from the size of the original tumour, there is the potential for spread to the lymph nodes. This link from Cancer Research UK details the staging of lung cancer quite well with some diagrams: cancerresearchuk.org/about-... Sometimes with radiotherapy, the lymph nodes can gather some fluid as they are not able to filter and drain any substances as they normally would, equally, if there is cancer activity then this will affect their function.

5. A lung tumour of above 5cm does not often have surgery as a treatment option, especially if there is potential spread showing in the lymph nodes, it would be of no benefit, however it is more beneficial for the person to have radiotherapy to reduce the tumour size and stop it growing and spreading.

6. Bronchial stents are not used for lung cancer and it would only be used if there was a blockage present as it may aid breathing, it is used sometimes in other respiratory conditions such as chronic obstructive airway disease.

7. Radiotherapy is not usually repeated, the instances it may be re introduced would be for severe symptom control management or if the tumour regrows, and even then this is evaluated by the multi disciplinary team.

If you have any concerns or feel you are not getting any answers, you could contact the Patient Advice and Liaison Services at the hospital, unless you have done this already and switchboard can put you through.

I hope this helps and you are welcome to contact us if you would like to discuss anything, our ask the nurse helpline is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[ginkgo in reply to RoyCastleHelpline]

Thank you for your response. I have now had replies which all backup the relative consultant. None of this helps me personally but I hope the consultants queried will understand more of what patients need from them instead of fobbing us off with half baked replies.

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

Hi ginkgo

Communication is so important in any stressful journey with cancer and perhaps patients sharing their experience can improve that for others.

I hope you continue to keep well and you are always welcome to contact us if you want to chat.

Kind regards

The Roy Castle Support Team

0800 358 7200

[ginkgo in reply to RoyCastleHelpline]

Thank you. This forum has given me the opportunity to converse with people who understand what we go through. I had a good session with the Macmillan nurse and am very grateful for the time she gave me. Unlike the GP registrar, she proposed various solutions and I am now feeling far more positive, and that I can stay at home for longer.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

That is so good to hear and great to find someone that can relate to where you are and provide some useful suggestions.

Take care of yourself

The Roy Castle Support Team

[JanetteR57]

Sorry to hear of your dissatisfaction with your care in some quarters but good to know that you have responded well to treatment and that your nurse has been supportive.

I was diagnosed in 2011 and back then there was little information available about possible lung cancer treatments and the wide variety now available wasn't around. I didn't even know clinical nurse specialists existed until a couple of years after my surgery when I heard them mentioned at a Roy Castle event I attended as a fundraiser so never had access to one.

Having been involved in LC research since 2013 I've witnessed the explosion in new treatments and changes in existing treatments as more has been discovered about the many different types of lung cancer and its many potential forms/mutations/biomarkers. Many patients with seemingly similar cancer will experience different treatments or ways through their pathway as much can be due to different ways services are organised i.e.whether seen at a specialist cancer centre or like me, in a district general hospital, having to visit other centres elsewhere for different care aspects with none of it really joined up from a patient perspective (or IT perspective but that's another story about the NHS in general). Also many patients have other conditions (known as comorbidities by clinicians) that can influence their care)

I was asked a couple of weeks ago by my GP if I smoke despite him knowing I've never smoked which is why my LC diagnosis was such a shock in January 2011 and know it is in my records that I don't.

Sometimes records don't reflect the latest situation, or clinicians don't read them or as you've found, sometimes incorrect information is recorded which I've certainly found during hospital stays when records were completed after the fact about what I'd eaten for example saying I'd had weetabix which I haven't touched since I was a young child as it makes me retch. Then I found notes that I'm allergic to dogs which I'm not (but I am allergic to cats) and as you say, that then gives rise to doubt in other areas. I complained about my initial visit/stay, misdiagnosis and delayed access to treatment and like you, was given incorrect information that didn't happen - saying I'd had a peak flow meter on a certain day when I was unable to blow into one at all! Prescribed meds by the hospital also had the incorrect name on every packet yet when I queried this was told they couldn't tell who had been dispensing (at 5am in the morning there can't have been many in the hospital pharmacy)

Surgery is usually for localised cancer - mine was 7cm but hadn't spread beyond the lung - once it has, systemic anticancer therapies are used - radiotherapy, chemotherapy, targeted agents, immunotherapy - more often now in combination. Each has different agents/modes of delivery within them so many patients receive different types. The follow up after treatments is often also based on patient's fitness - I had open surgery and quickly went into an annual pathway which was equally scary.....

Many tests for lung cancer build up the whole picture and nothing is usually accepted in isolation - images that look incorrect are escalated to a different type of imaging which may or may not confirm what was suspected, a pathologist may comment about the description of the biopsy and put a question against this if they only had a small sample of a large tumour for example as there may be other characteristics in another part . I guess in a nutshell what I'm saying, is that the picture builds up over time from different sources of evidence which is what clinicians use for treatment decisions at the time. Treatments are approved by NICE and part of the national optimal lung cancer pathway, NICE guidelines and BTS guidelines based on evidence at the time but are regularly reviewed when things change.

I think overall your concerns relate to communication improvements needed between patient and clinical team. Desktop research/google can only go so far - those dealing with lung cancer everyday after all their training should find ways to explain to patients in terms they understand that are clear and recorded accurately.

Many patient complaints/concerns relate to this area as our expectations differ from what actually happens or in many cases doesn't happen.... so I'd encourage you to ask your Trust to look at this element to improve it in future.

Many Trusts are willing to look at patient stories/cases within their governance (board meetings, quality and safety meetings) so worth contacting PALS or the Trust about this.

In the meantime, it's encouraging you've responded well so far, and hope you can pick up the pieces of your life and live it whilst you can.... good luck.