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
  • Hi alera90,

    I am so very sorry to learn of your lovely Mum's passing - it is all such a shock! My Dad passed away 5 years yesterday and I am still so very sad (secondary in bile ducts - primary unknown).

    I just cannot understand why people who have had breast cancer are not given a full body  scan - in my neck of the woods, those who have suffered with bowel cancer are given an annual CT scan as standard!

    Having been diagnosed in November 2015 with lobular breast cancer (right breast with spread to two lymph nodes - one macro and one micro) I have now had my first annual follow up (February of this year) -  this entailed a mammogram of my left breast and thankfully all 'appears' to be fine.

    My mum will pay for me to have an MRI/Cat Scan in six months time. I have asked to have my blood tested for CA 15-3 and CA 27-29 but to no avail. I am anxious every day but I just try to get on with things.

    Once again, I am so sorry for the loss of your Mummy.

    X

  • Hi Dunanat1,

    Thank you for your response,

    I am so sorry to hear about your dad x

    I wish there was Annual Body Scans too but the truth is I'm not sure if it would have made any difference as sometimes the cells have broken off from the Primary Cancer before it's discovered and just become dormant without detection until they are big/serious enough to be seen or cause symptoms. 

    I am very conscious that for anyone that has had BC I sound all very doom and gloom and I really do not mean to x  I think it will be really good for you to have the MRI and Cat Scans, it will be a good peace of mind it's a shame about the blood tests though, I don't understand why they cannot do them :( 

     

    I feel there is so much emphasis placed on Mammograms but very little focus on those that have actually had BC and how to monitor and help these patients.

    I hope yours MRI/scans are ok when you have them and I wish you as many Cancer Free years as possible xx

     

     

     

     

  • Hi Alera,

    So sorry to read about your Mum.

    There doesn't seem to be a standard approach within the NHS to annual scans for people with a history of cancer. Understandable given that there is often a small risk of triggering cancer with excessive CT scans and X-rays but how else can recurrence be diagnosed in good time?

    I am in partial remission and have a chin to pelvis CT scan approximately every six months as part of my watchful waiting regime. 

    Not sure what the answer should be.

    Best wishes

    Dave

  • Hi Alera I too am so very sorry for your loss. My mum was diagnosed with triple negative breast cancer last June. She found a lump, was referred within 3 weeks, and had a lumpectomy about a month later. They found evidence of spread to her lymph nodes but did not scan other areas of her body. She endured months of chemo and finished radiation at the end of January. Her consultant said this was all to ensure she was in the all clear. Less than a month later - late last month - she started a headache that didn't go away. We found out yesterday she has several tumours dotted around her brain. Breast cancer mets. I do not understand why she wasn't scanned when they confirmed it had gone to her lymph nodes. I've read that 10-30% of TNBC patients get secondary brain cancer. I'm extremely angry. She was assured they'd got it early. She was assured that the horrendous chemo and subsequent radiation was pretty much overkill. But she didn't have any sort of follow up. She even received a letter at the end of her treatment in January saying she was in remission! Now she has been told she has up to a year left, but it depends on whether or not it has spread elsewhere I guess. She has a further scan on Sunday. From what I have read with her type of bc it is more like 5-7 months, if that. She is 61. I just wanted to say I completely agree with you. And I am finding it difficult not to be angry about the lack of urgency / interest shown in scanning other areas of her body when she was first diagnosed. Who knows the difference it could have made.
  • Hi to all I had diagnosis of breast cancer march 2013. Found to be in four nodes. So treatment was wide local incision to remove tumour followed by another procedure to ensure margins were satisfactory. I then had 6 chemo treatments which were horrible, 35 radiation treatments followed by 4 boosts to tumour bed. I had 18 treatments with Herceptin as I was her2+. I had a full body scan including bone scan. In 2015 I started having pain in my lower back which prompted another bone scan which thankfully was clear. In 2016 following a mammogram I was diagnosed with micro calcification which resulted in 3 diagnostic mammograms followed by a guided biopsy to ensure the cancer was not back. All in all I cannot fault my treatment. I understand that it is hard to spot tumours in the early stage as they need to be about the size of a pinky nail. Anything smaller the machines font always pick up. I live with the threat of a recurrence as we all do but as my younger sister died if the disease under 2 years before my own diagnosis I am acutely aware that BC can return st anytime. She had 16 years clear but still died just after her 50 birthday. Until a person has personal experience it's hard to understand the fear which seems to seeped into every aspect of our life. I think more needs to be done about metastasis and less of the NHS money being spent for e.g. On tourism treatments which are usually very costly from what I read. Anyway sorry for rant the initial post had an affect on me when I read it. WA

  • Hi Tabz, thanks for getting back to me. I am so sorry to hear about your mum it's absolutely heartbreaking especially when she went through all that treatment recently. Its devastating being given a prognosis, I though we had plenty of time left but mum was gone in 3 weeks. I hope your mum has as long as possible with minimal suffering xx

  • Hi Willian, thanks for getting back to me. So sorry to hear about your sister and that you have dealt with this horrible disease too. I've read lots of research into Metastasis (probably around 80 pages deep into google) I just can't seem to switch off and it keeps me up at night that this is happening, cancer is spreading and nobody truly knows why or how to stop it I almost want to become a scientist to figure it out myself. I agree with you regarding the NHS money, at the moment it almost feels like if the Cancer has spread they really can't do anything other than try and control it "palliative chemo" how can we send people to space but we can't figure out why cells and cancers spread and kill 100's of people a year? x

Reply
  • Hi Willian, thanks for getting back to me. So sorry to hear about your sister and that you have dealt with this horrible disease too. I've read lots of research into Metastasis (probably around 80 pages deep into google) I just can't seem to switch off and it keeps me up at night that this is happening, cancer is spreading and nobody truly knows why or how to stop it I almost want to become a scientist to figure it out myself. I agree with you regarding the NHS money, at the moment it almost feels like if the Cancer has spread they really can't do anything other than try and control it "palliative chemo" how can we send people to space but we can't figure out why cells and cancers spread and kill 100's of people a year? x

Children
  • Hi again,

    Maybe I'm being over-simplistic but we've known for decades how cancer cells spread - individual cancer cells break off from the primary cancer and migrate around the body either via the blood stream or via the lymphatic system. They can be released naturally or, ironically, via surgical interventions which can sometimes do more harm than good as there is a risk that a slow growing primary can be inadvertently metastasised by the surgeon. There are papers out there which describe this at cellular and molecular level. e.g. Yoneda 1990.

    How to prevent this happening is a far more difficult question. I sometimes use the metaphor that this is like trying to stop dandelions spreading in a garden. You can't stop the seeds floating across on the wind, but you can uproot the whole plant before the seeds mature, you can poison the ground to stop them taking root or you can burn all the young plants before they mature. Analogous to the cut, poison and burn cancer therapies (surgery, chemo and radiation).

    Google isn't always the best option. 

    Apologies if you've already tried some of these :-)

     

    Best wishes

    Dave

     

     

  • Hi Davek,

    "You can't stop the seeds floating across on the wind, but you can uproot the whole plant before the seeds mature, you can poison the ground to stop them taking root or you can burn all the young plants before they mature. Analogous to the cut, poison and burn cancer therapies (surgery, chemo and radiation)."

     

    I had this idea...

     How about if we put the cancer cells in indefinite state of dormancy? Instead of just killing them maybe we can just put them to "sleep" by making it a permanent "winter season" for them and overtime maybe their natural lifespan would took over and they will die out without spawning any of their mutated daughters.

     

    I think it offer some advantages like reducing the chances of further mutation and evolution by arresting any flawed process of genetic translation and replication completely. It would also make the cancer cells more vulnerable to environmental stresses and immune actions since they are more likely unresponsive and unable to adapt in such a dormant state. It could also lead to cancer being treated as a chronic disease which will make therapeutic protocols more like preventive rather than reactive.

     

    Of course such treatment still depend on what kind of triggering inhibitor/activator agents will be use and what are the effects they have on normal cells metabolism and functions.

     

     

  • Hi Davek, thank you for your response it was helpful and thought provoking. X