When "catching it early" means nothing

I lost my beautiful amazing mum one month ago to Metastatic Breast Cancer which had spread to the Ovaries,Liver,Bones and Peritneoum. She had an early stage Breast Cancer in 2007 for which she had a lumpectomy and radiotherapy followed by 5 years of Tamoxifen. Up until Jan this year she was walking 15 miles a day and teaching multiple group fitness classes then the 2nd week of Jan she had a few aches and pains in her back for which she went to the doctors and was prescribed painkillers then a week later she was struggling to get out of bed and being sick. Doctors did blood tests and mum received a call to go A&E as she had high calcium levels in her blood. 3 days later and after multiple scans and tests she was told it had come back and was widespread. She had been for regular mammograms and took amazing care of herself, she had no lumps or bumps in her breast in fact the Oncologist said that what is likely to have happened is a few tiny cells from the Original Cancer escaped and laid dormant going undetected for years and then they woke up and started going everywhere. There was no opportunity to catch this Cancer early and it makes me really upset and angry when all the advertising campaigns are geared towards checking yourself and catching it early when this wasn't possible in my mums case (and plenty of others I am sure). Mum had no symptoms until it was very late and she gained her angel wings only 3 weeks after diagnosis at 56. I have read that only 5% of money donated to the big cancer charities actually goes towards research into Metastatic diesese and how it happens and still no one really knows how/what and why it happens and yet this is the only way that the big C actually kills. Another shocking figure is that 30% of early stage Breast Cancer comes back similar to the way it did for mum. My question is what is being done to prevent this and are we any closer to actually finding out why and how we can stop this from happening? Thanks in advance x

Parents
  • Your mothers stories sounds so similar to mine. Breast cancer in 2007, lumpectomy, chemo and radio. But then I'm younger than your mom, I waited to start my family till the all clear and then had two children 2011 and 2013. Have had mammograms and been ok health wise until feeling poorly in December 2016. Went to hospital in February 2017 to get lung drained as fluid had built up. They analysed the fluid and could see ovarian cancer cells that travelled up to lung. I am waiting for a consultant appointment to start treatment. I feel so cheated, why wasn't this cancer picked up sooner. Why was I only being monitored for breast cancer.

  • Hello everyone

    Although this conversation started as a question to the nurses it seemed to have changed into a broader discussion, so we haven’t been posting, as we didn’t want to interfere.  I hope you don’t mind me coming back into the discussion now, please ignore my post if you think I’m interfering.  The reason I am posting, is that I am wondering if there are some things I can say which might help to explain or add to the things you have been talking about. 

    Firstly I wanted to reiterate one aspect of CRUK Nurse Julia’s post, which is that a lot of the basic lab research we fund is looking into the biology of cancer, how it spreads and how it is able to survive in other parts of the body.  If scientists can understand this better it will help enormously in stopping this from happening or treating it once it does.

    Another issue that a few of you have mentioned is around follow up for cancer patients.  One of the difficulties with many cancers is that once they have spread, the treatments we have currently available can only usually control them for a while rather than curing them.  So sometimes it is debatable whether doing additional scans to detect recurrence earlier actually helps people to live longer.  And with many cancers, except in situations where it’s been shown by research that additional monitoring helps, it is better only to do tests to look for a recurrence once new symptoms arise, rather than going and looking for it while someone seems otherwise well.

    Early detection of the primary cancer is still important though, in most cases, if cancer is caught at an early stage it is much more likely to be cured.  But sadly even in this situation, a proportion of people still have a recurrence, sometimes years after initial treatment.  And it is heart breaking when this happens.

    As more research is done, especially in developing more tailored treatments that home in on specific characteristics of individual tumours after they have spread, it may be that ongoing monitoring is more helpful.  These treatments are usually categorised under the umbrella terms of biological therapies and immunotherapies and are the ones that we hope will, as joyfulljourney mentioned, turn some cancers into long term chronic conditions.

    There is hope.  Some cancers now can already be treated successfully once they have spread. For example, when bowel cancer has spread to the liver, sometimes removing the secondary cancer can improve survival.  When I first started cancer nursing back in the late 80s this was unheard of. And some testicular cancers can be cured with chemotherapy even when they have spread to the lungs. 

    Please do call us if there is anything you want to talk through with us individually.  Although we can’t always make things better we might be able to help with explanations and we are always able to listen.

    I hope this has been helpful

    Martin 

     

Reply
  • Hello everyone

    Although this conversation started as a question to the nurses it seemed to have changed into a broader discussion, so we haven’t been posting, as we didn’t want to interfere.  I hope you don’t mind me coming back into the discussion now, please ignore my post if you think I’m interfering.  The reason I am posting, is that I am wondering if there are some things I can say which might help to explain or add to the things you have been talking about. 

    Firstly I wanted to reiterate one aspect of CRUK Nurse Julia’s post, which is that a lot of the basic lab research we fund is looking into the biology of cancer, how it spreads and how it is able to survive in other parts of the body.  If scientists can understand this better it will help enormously in stopping this from happening or treating it once it does.

    Another issue that a few of you have mentioned is around follow up for cancer patients.  One of the difficulties with many cancers is that once they have spread, the treatments we have currently available can only usually control them for a while rather than curing them.  So sometimes it is debatable whether doing additional scans to detect recurrence earlier actually helps people to live longer.  And with many cancers, except in situations where it’s been shown by research that additional monitoring helps, it is better only to do tests to look for a recurrence once new symptoms arise, rather than going and looking for it while someone seems otherwise well.

    Early detection of the primary cancer is still important though, in most cases, if cancer is caught at an early stage it is much more likely to be cured.  But sadly even in this situation, a proportion of people still have a recurrence, sometimes years after initial treatment.  And it is heart breaking when this happens.

    As more research is done, especially in developing more tailored treatments that home in on specific characteristics of individual tumours after they have spread, it may be that ongoing monitoring is more helpful.  These treatments are usually categorised under the umbrella terms of biological therapies and immunotherapies and are the ones that we hope will, as joyfulljourney mentioned, turn some cancers into long term chronic conditions.

    There is hope.  Some cancers now can already be treated successfully once they have spread. For example, when bowel cancer has spread to the liver, sometimes removing the secondary cancer can improve survival.  When I first started cancer nursing back in the late 80s this was unheard of. And some testicular cancers can be cured with chemotherapy even when they have spread to the lungs. 

    Please do call us if there is anything you want to talk through with us individually.  Although we can’t always make things better we might be able to help with explanations and we are always able to listen.

    I hope this has been helpful

    Martin 

     

Children
  • "I have read that only 5% of money donated to the big cancer charities actually goes towards research into Metastatic diesese and how it happens and still no one really knows how/what and why it happens and yet this is the only way that the big C actually kills."

     

    Is that true? Where does the other 95% go then?

  • Thank you Nurse Martin that was helpful and appreciate you taking the time to respond with some interesting and valid points. It was also interesting to hear about cancers in the late 80's too. Hope there is a cure for cancers that have spread in my lifetime or like has been said it can be treated like a chronic illness. Thanks again x

  • Hi Jack, I'm not sure where the rest of the money goes, I think out of all the charities Cancer Research as they have said are researching into cell biology and how cancers spread which is a relief to know but I guess Cancer is such a massive epidemic that they have to spend money else where too, I wouldnassume a lot of money is spent on advertising, leaflets and awareness. Re the 5% I read this on a lot of sites, Second Hope in the UK and Metavivor in the US.

  • Hi [@jack2015][@alera90]‍ I Just thought I would pop onto this thread with some information about how we spend the donations we receive.

    For every £1 donated, 80p is used to beat cancer (the remaining 20p goes towards raising funds for the future). The majority that we spend each year goes towards our ground-breaking research.

    We have a  really informative blog which shows you how and where the money is spent which you might find of interest. You can view it here scienceblog.cancerresearchuk.org/.../

    If you’d like to find out more about our finances, you can read more information in our Annual Report and Accounts http://www.cancerresearchuk.org/about-us/how-we-are-run/annual-report-and-accounts

    I hope that helps clarify things for you

    Best wishes

    Moderator Sarah