Reassurance needed, please share your experiences of the NHS

[motherno1]

My fit 60 yr old husband was diagnosed with lung cancer last July when he attended a rheumatology appointment due to chronic pain in his wrists, feet and ankles and they did a routine chest x-ray. He then had CT, PET scans and a mediastinoscopy, followed by surgery (not VATS) for an adenocarcinoma, plus there was an unexpected large second tumour discovered, that was attached to his main artery so instead of a re-section, he had his full left lung removed at the beginning of September. His cancer was staged at 3b and he was told there were infected lymph nodes which may have spread.

Less than 3 weeks later he had his follow up appointment and was discharged and told he had been referred to Oncology for chemo. The surgeon gave him a review appointment for 12 months ahead.

When we attended the Oncology appointment the consultant suggested he have 4 cycles of chemo but outlined and heavily emphasised the potential harmful side effects of the drugs including the fatality rate, without actually making a statement she made it clear that she thought we should reserve chemo in case it was needed at a later date as it could not "cure" only slow down cancer and would not be effective twice?

As a result my husband made his decision not to have the treatment and he was apparently discharged from Oncology. We only found this out from our GP later.

Since then he has suffered terribly with a non-stop chronic cough, been given antibiotics several times for and even hospitalised overnight once for chest infections. He has been back and forward to our GP who finally referred him for x-rays which came back "normal". At my husband’s insistence because the GP was going to do nothing further, he has now been referred to ENT to try and identify the cause of the loud barking cough.

The one time he called the MacMillan nurse, that we have never met, he felt she was abrupt and now won’t call her again. Mentally he is very down as he is constantly wondering if the cancer has spread. He is struggling at times with one lung and though he has found the drive to return to work. I just don't know how he copes as he is an engineer and the environment can be challenging due to fumes etc. He is extremely tired and sleeps 80% of the time he is at home.

What I don't understand is how my husband is not receiving more frequent follow up appointments even if just to give him reassurance? Has this been anyone elses experience?

I am a very recent joiner but the posts I have read suggest you all seem to be seeing someone on a regular basis? Does anyone know how we can get the reassurance that if the cancer is spread it will get picked up due to regular reviews?

[jujuju]

Hi I hear your concern and I am no expert but,myself in your shoes as much as I can, I will try and say what I would expect and try to do.Because your husband had affected lymph nodes I would have expected them to do a platinum doublet for chemo, 4 sessions ,3 weeks apart.Though even before that his tumours should have been tested for any genetic mutations which can then be (sometimes) helped with targeted therapies,generally pills. I have not heard that chemo is only effective once. I myself had a platinum doublet and now on a targeted therapy which will stop working at some point and my oncologist suggests either a mono chemo or in fact said I could do another platinum doublet as long as the drugs weren't the same as the original. Nice guidelines are quite specific about tumour testing and all hospitals were advised to test for genetic mutations from the end of March 2013. I would have expected a ct scan sometime after surgery and my oncologist and surgeon think they are best done every 3 months and sometimes a pet scan in between to give an extra eye to what is happening.I have read that some now only do a ct scan every 6 months as they feel it shows more if you understand what I mean. I don't know who you were referred to in the beginning after the rheumatology but my first port of call after things showed up on an x ray was a thoracic consultant and she then got me started on the tests that eventually sent me to the surgeon. Therefore if I was in the same situation I would ask to be referred back to her and explain my concerns and ask for a ct scan and or pet scan.

Chemo can be fatal but you say he was in good health so I would be wondering why not.So he needs to know if his tumour was tested for genetic mutaions, Specialist nurse,GP or surgeons secretary first places to try.If not ask if it can be. Referal to a thoracic consultant. In all honesty I would ask for a second opinion. You can also look up how the hopitals do in your area for lung cancer and maybe get referred to another one. One thing I would not do is give up.Generally we know our bodies pretty well and you may have to become a pain in the butt for your husbands sake. I know I can phone my specialist nurse tomorrow if I am worried or my oncologists secretary. I am in a part of the country where we have excellent care. I hope you have some idea where to go from here and hopefully more will come on and give you more info.Stay strong .Best wishes.Julie x

[jujuju]

Heres a link to the NICE pathways....pathways.nice.org.uk/pathwa... .Julie x

[suelakes]

I can't say I have been particularly impressed with the NHS. My Dad (67) was diagnosed in March this year with lung cancer that had already spread to the brain and bones (albeit only a small tumour in each other area). He eventually had to change doctors to get any further tests done having gone since January for bad headaches and specks of blood in phlegm. It seemed to take forever for appointments and scans and results. Mutation tests showed he had the EGFR mutation and was given Iressa. All seemed fined for a month and then he started having confusion and some memory loss. He had a follow up with the oncologist at the same time. Although we only saw a registrar, lovely as she is. The confusion was mentioned and just put down to steroids and dose changed. She said to call them if got worse. Which he did, drastically but could get never hold of the consultant, left messages with his secretary....nothing. Eventually the GP got on the case as she was so concerned. Had another meeting last week, all we got told was they were baffled by how down hill he had gone and could give no answers. We had already pushed them to order an emergency MRI - even pushing for this and as an emergency was going to be another 3 weeks. So we have organised one privately for next week.

Personally would have gone private from the start, treatment might be the same etc but at least as a paying customer they are more inclined to return your calls and you can get quicker appointments and scans.

[topgun]

is it not the case that having refused the chemo option, there was nothing further that could be done by the Oncology department, hence his being discharged from them. Personally I think you need to talk to another Oncologist. In the time since I was diagnosed with 3B cancer ( Jan 2014) , the only people I see are my Oncologists and the Oncology nurses. My Oncologist takes full responsibility for my health and I only need to see my GP in reference to my High blood pressure and cholestral levels or any non-cancer related problems. As for chemo being fatal, as far as I know that's only if lack of hydration during the chemo treatment affects the kidneys, but then the Oncology dept should be monitoring that with routine blood tests.

[Hidden]

Hi, I'm sorry that you are experiencing such difficulty in accessing optimal care for your husband.

The medical team have a duty of care to inform you of the risks of treatment, and they will advise you what they think is best. Given that your husband is otherwise fit, I am surprised that he was advised against chemotherapy, particularly as there was lymph node involvement. As stated in previous posts, chemo can be used more than once, but different combinations will be used at different stages, always guided by best practice and based on the fitness of the individual.

If you would like to speak to someone, you are welcome to call the helpline on 03333237200 option 2.

Best wishes,

Beth, on behalf of information and support,