Cancer Talk Week - Vikki talks about the importance of early diagnosis

2 minute read time.


This Cancer Talk Week we are talking about the General Election 2015 and about making sure cancer care is high on the political agenda.  Vikki is one of three people who have offered to share their story. Here she talks about how early diagnosis could have made a difference when her father was treated and why it’s important to push for earlier diagnosis and better support.

Vicki sitting on the sofaMy father Ade had a persistent and very nasty cough for about 18 months or so. He went to the GP with his cough and they told him it was bronchitis, meaning he was given antibiotics.

The cough didn’t shift so he was given a further two courses and eventually it gradually settled of its own accord.

Months later he started getting pains from his hip. We didn’t think much of it really. He’d had an accident in his teens and the hip had been pinned. There was always a chance he’d develop arthritis in it as he got older and we assumed this was what was happening. He wasn’t a man who complained, he was very stoical, and he didn’t talk about it much, but he could see that it was getting worse.

He eventually had a hip scan and was told that he had a secondary bone tumour in his hip, with further secondaries in the spine, pelvis and ribs. The primary site was the lungs. It wasn’t operable, the lung tumours were too close to the central core. They call it ‘inoperable’ these days, but it’s just a new name for ‘terminal’, we all knew that.

He’d be offered palliative radiotherapy for the hip and then three cycles of chemo to try and shrink or slow the lung tumours. We were horrified – we’d gone from a dodgy hip to terminal cancer in days. It’s impossible to take in and accept it immediately.

He died eight weeks later. Now there’s just us learning to live differently and adjust to a new way of things. We all have good days and bad days, mum especially. The family dynamic has changed without him here and it’s hard to accept that and learn to do things a different way. The ‘firsts’ are hard, like the first birthday without him and their wedding anniversary.

Sometimes I wonder if the people left behind are the ones getting the rough end of the stick because for them there isn’t any peace, not at this stage anyway, although a friend has assured me that it does get easier as time goes on.

What is important is that Ade went to the doctor with a cough which he was worried about 18 months earlier. But at no point was he given a scan or an x-ray, despite having been a heavy smoker for 30 years and being slap in the middle of the average age to develop lung cancer. From questions I have asked of other people and families affected by cancer, he isn’t alone in this.

If someone has a persistent cough and they are worried about it, especially if they are in the high risk category like Ade was, and then they need to be put forward for a scan and further investigation.

If it can save someone from going through what Ade went through and their family from feeling what my family has felt then it’s certainly worth doing.

Help us make cancer a priority this election.  Find out how you can be part of the change at www.timetochoose.org.uk

Anonymous
  • FormerMember
    FormerMember

    Hi first of all I would like to say sorry for your loss and the feelings and thoughts related to your fathers quality of care. My experience has been very similar at the age of 47.I believe I wasn't seen has high risk due to my age. I have been a smoker, and except full responsibility for that choice I made.

    I had been to the Gp over 2 years ,family history of lung and breast cancer, passed away between the age of 44 and 57. highlighting changes to my breathing each time I was given a course of antibioctics, at one point they thought it was more connected to my anxiety because I was due to fly. Which I informed them was not the case , as I had flown since being a child and had no fear what so ever. I was given a steroid inhaler to use on the plane , along side ventoliin.. It was on my medical notes for years that I have suffered from joint pain , especially the neck , shoulder and back. I was informed it was spondylitis and given an exercise sheet to follow. I did exercise regular and started the gym. The exercise did relieve the joint pain , so like your father I wasn't one to complain. In Feb 2014 I felt severe pain in my shoulder and went to A & E, which I have never used before. The nightmare began, I was diagnosed with terminal Lung Cancer. A very small tumour but 3 lymph nodes affected. I do believe that I didn't receive any scans due to not fitting the tick box on age ,type of cancer and a few other ailments that were put to one side. A & E investigated further due to my blood tests. White cells alarmed them , so a CT scan was carried out and tumour found.

    I have spent 2014 keeping fit and well and still able to enjoy social activity's . I have been I finished all treatment and had great reductions , and the cancer is seen as controlled. December was admitted due to headaches, sickness and loss of speech, only experienced for one day. I was informed that I now have a spread to the brain , and have various sizes of brain mets. Shock , no one had discussed the high risk of spread from lung to head , this information would have prompted me to pay for and possibly have the chance to catch the mets with less or more treatable options. The area I live in is very rural , a lot of services and treatment we have to travel for. I feel that not just me , there will be other people in the same situation , not being treated as an individual , treatment that is tailored to their own cancer and needs. Lack of informed choices , lack of time given, misleading information and having to carry out their own research on treatment and side effects. It has impacted on my life and present condition I am in. I have mentioned on a few occasions a referral to a hospital with more resources . Due to the level of service and best options available. We had even said we would pay private for a second opinion. The answer was I wouldn't be treated any different under the Nice Guidelines. Our joy over my primary condition and general health overrode our gut feelings , which was the uncertainty of the next stage in our local service. I was offered full head radiotherapy , and queried the dose to be given. As I had been placed in class 1 for brain mets. Not an option for Radiotherapy at present due to having more than 3 mets. But option of Radiotherapy and review for radiosurgery .The Nice Guidelines highlights the dose to be given that been allocated to my specific class of brain mets. Which is the highest dose to be given , with the best chance of reduction and killing off cells. This would offer further options of treatment. Due to severe steroid side effects , they rang on New years eve to say I could attend for an assessment .

    When I arrived a different person was allocated to me , and informed me that another oncologist had set up treatment today. Again I asked about the dose and was informed that it was lower than I had asked about , but the outcome would be the same. My husband and I was so pleased that I was receiving the treatment as soon as possible , due to the worry over how long I would have had to wait. Well another nightmare, I went home and researched the dose I had been given. Alarm bells, the dose does not offer the treatment for the my personal needs , is not allocated to my performance class and may prevent further treatment due to only being used for control of severe symptoms at the end of life. I have not got any of the severe symptoms. I rang my nurse specialist to discuss this, the person who set up my Radiotherapy would not clarify anything with her. And I am still waiting for an appointment to discuss the treatment. I have gone private and the consultant who I have seen was quite shocked relating to the treatment given. And informed me that I would have been able to go to many Uk hospitals and been given the treatment to meet my needs , the treatment given is rarely used even in the Uk, it is a very old regime . There is a chance it will not provide what I need.

    On a positive note , the second opinion has written his thoughts about my treatment given and offered a chance of chemotherapy and transferring to that clinic. I have lost all trust and confidence in my local service and people receiving the same standard of care in different county's. I will have a lot of travelling to do when I transfer to the other clinic ,my prognosis is poor I am totally aware and understand my situation. But we will feel we are receiving a higher standard of care , moving out of a post code area. My family and I are so frustrated , angry , let down that people experience this kind of service. Seen as a number and not a individual can impacted on a well being of that person living with cancer and how long they may have left . The secondary cancer will end my life sooner than expected but the treatment offered has had shortened my life even more. Creating anger , frustration , upset , stress that my family and I have to cope with.

    A lot still needs to change in the standard of care and quality given to cancer patients . The same standards should be delivered throughout the uk. Not delivered on the post cost lottery or who has the most funding . The Uk needs to catch up with the services and treatment delivered in other countries to provide the best opportunity for people to live longer and have the resources available to them.

    Best wishes to all

  • FormerMember
    FormerMember

    My Mum had been going to her GP since @Oct 2013 with re-curing chest infections.They said it was COPD.(My Mum was 63 at the time and had give up smoking @6 years prior).My Mum continued to go to GP with other symptoms,coughing-which kept her awake all night,difficulty breathing,pain under her rib,pain in her shoulder-they did send Mum for X-Rays on a number of occasions,we were told the result was either normal or showed infection.Even when My Mum went to GP coughing blood up in March 2014,he sent her for yet another X-Ray.It was only when I took Mum to out of hours,because of the pain in her back,we were told she really should have had a CT Scan done by now.

    A couple of weeks later,this is inbetween being sent to A+E requesting a CT and being diagnosed with pleurisy via a blood sample,she was sent for a CT.We got an appointment to go to Chest Clinic on 1st August for the results.This is when we were told there was a tumour.We weren't expecting this at all.All her X-Rays were fine,we said to each other'it can't be anything bad else it would have shown on an X-Ray'-Mum nearly went on her own for the results,we didn't think it could be anything so bad.

    Since that day,1st Aug,it has just been a nightmare.The catalogue of errors from everyone involved in My Mums care/treatment is shocking to say the least.This is not including the numerous times beforehand when this could and SHOULD have been diagnosed.She was sent for a Bronschopy and a Petscan to confirm what tumour was.Any information I have found has been after the event-too late to do anything about it.

    Petscan result showed it was Stage 4,spread to bones.Very High SUV-aggressive cancer(results were sent to GP dated 19thAug).They couldn't get a biopsy from Bronschopy so had to wait for appt for a needle biopsy in through back.(They should have known they wouldn't get a biopsy this way from looking at X-Ray=more time wasted)When we were finally told,mid Sept @6 weeks later,amongst the wrong information given regarding benefits etc(which lost My Mum @2k)we were given McMillan books,one being Guide to Lung Cancer.This is when I found out-GP Guidelines-Mum,x-smoker,over 60,COUGHING BLOOD UP-URGENT REFERALTO CHEST SPECIALIST.

    I would be here all night if I listed everything but basically,if it had been found earlier it could have been taken out and My Mum would still be here.

    If it had been diagnosed just 1 week earlier it would have made a difference to My Mums quality of life.

    The earlier Cancer is diagnosed the more chance you have of beating it.It would help if GP's are up-to-date with current guidelines etc but half of them graduated in the 80's,they haven't got a clue-bang out of order.Our lives depend on them,you should be able to trust they know what they're talking about.Everyone says-don't google your symptoms but I would recommend a lot of GP's should do this.

    If people JUST DID THEIR JOB and followed the GUIDELINES set My Mum and countless others would still be alive today.Hugs and Love to Vicky.Take Care..xx

  • FormerMember
    FormerMember

    My Sister went to see her GP four or five times in a year with pain in her ribs, coughing and shortness of breathe. This was in 2008. He constantly dismissed her telling her she didnot need an x-ray or a scan. He told her ladies of her age do not tend to have the same lung capacity and she was worrying about nothing. He even gave her an inhaler with no ither investigations.

    Eventually, my Sister went to another GP in the oractice who sent her for an x-ray in March 2009. She was recalled and given an appointment for a CT scan. Eventually a bronchoscopy was completed, then a PET scan.

    My beautiful Sister was told in April 2009 that she had stage 4 Non small cell lung cancer. It was in her right lung, her chest cavity, and was in lymph nodes next to her aorta. She died in October 2011 age 71, by which time her cancer was in her spine, jaw, and both lungs.

    The GP took early retirement.