Hi

My sister was diagnosed with triple negative breast cancer and treated for it 13 years ago whilst living in Canada, she had mastectomy, chemo and radiotherapy.  12 months afterwards she had a full body scan, I am guessing that was standard practice over there, although whilst having chemo the first time  a scan had shown it had spread to liver.  The doctors had been confident that the chemo had killed the cancer in her liver though.  So that may have been why she had a further scan after 12 months. She felt well, however the scan showed that it was back in her liver and lungs.

Not sure what standard procedure is, but they certainly need to do more in this country, my mum was also diagnosed with triple negative bc in 2020, had mastectomy, no chemo or radiotherapy as no lymph node affected, found out last november that it had spread to her bones and lungs, she died within 8 weeks!

Marie 

thanks so very much for reply 

I’m so sorry about your sister and mum , this is actual fact then in your family’s case as earlier screening would have detected this in your mums case , I’m so sorry to hear this Ho early how is your sister now ? 

im sure more can be done 

Yes, I am sure that a scan after 12 months would have shown the return of Mum's cancer.  She had been complaining to the doctor about pain in her back and ribs for months, but they just gave her painkillers and said that it was her fibromyalgia.  It may not have saved her, but at least she may have been able to have treatment and maybe some more time with us.

Sadly the 2nd bout of chemo didnt work on my sister, she died 6 months after it being found for the second time.

You take care and keep fighting against this awful disease.

Marie

Marie 

that’s awful what you have been through I feel as it’s those who are family struggle more my poor husband was worse than me . 
thank you so much for sharing your story about your beautiful family and I hope it wasn’t to painful to bring it up for you .

im always here to chat at anytime 

big hugs to you love Lara xxx

I have certainly lost faith in the NHS, I finally got a doctor to refer my Mum to an urgent treatment centre for her pain, they took an xray which showed a shadow on her lung, lesions on her spine and a cracked rib.  As it was a Friday they advised us to see the GP on the Monday to arrange a CT scan to confirm diagnoses of what they were sure was cancer. GP had to have bloods done before referral for CT, which I understood.  However, when bloods came back her Ovarian cancer markers were raised, doctor said he was not allowed to refer her for CT of her chest, until my poor 77 year old mother that was wracked with pain, had to endure an internal ultrasound.  It is a box ticking exercise!  However, the US never happened as she was admitted to hospital within a week and got her CT in there.

take care.

Marie 

yes same here , no wonder you. Hsve lost faith that is absolutely appalling, it’s like we have to be our own doctor and have to get through the pathway by begging of the feeling of being a nuisance so to speak to her heard .

that’s why o can’t understand why like I said earlier that they only do a mamo as like in your family’s cases prevention could have been done earlier this would have prolonged your mind life and also been much less stressful.

love Lara x 

Marie 

my friend had triple negative the same time as me hers was grade 3 mine was not triple negative but her2 negative I take a tablet now she doesn’t but I asked her about her annual check hers is soon and she said hers is only a mamo too xx 

Lara, unfortunately it sounds like that is the only check available on NHS in this country then.  I suppose in America and Canada you have to have private medical cover, so I guess it all comes down to cost again, no comfort for those affected though!  I will say though that they have their own problems over there too, even though my sister had private health cover, she still had to wait 4 months from diagnoses to having her mastectomy, had no treatment at all before that.  Seems every country has waiting lists............

We are heading for a situation here where anyone that can afford it, will go private for speed and reassurance.  I am damned sure that I would!  

I hope that your mamo is clear when you have it, fingers crossed the tablets that you are taking will keep it at bay for the future.

regards 

Marie

Mare 

thanks so much for the lovely chat today and thanks for well wishes xx 

Yes, I have come to the same conclusion and then moved on from the sadness about our beloved NHS. Different cancer = I got 3 totally independent cancers diagnosed in 2021 at the age of 49. I am an entrepreneur so I think that helped my mindset and also I was lucky I had money, and I sold 6 properties to pay for care! 

After about 6 months of observing the NHS system that was treating me, our beloved NHS, I moved to a private case, self funding Royal Marsden. I was aghast at many of the systematic failures, and the wait for over 6 months for surgery for two of my three cancers. The third dangerous cancer missed every deadline that was set for scans, and treatment commencement. 

For a while this sadness (and anger. I was trying to stay alive) actually became the 'story' when I needed to focus on health, well being and being sure I was having everything done I could possibly get done for my care. 

I was tumbling mentally as having 3 cancers diagnosed is a bit of a kicker punch! 

Once I got right way up, I changed team, and pay for scans quarterly, paid for 3 private operations (last one coming up preventative Hysterectomy this week) rather than the scan rate that was proposed for me. That proposed lower scan rate made me highly anxious and it did not fit, in my amateur research, with the data = which showed first 2 years 20% recurrence then down to 1%, so I wanted to catch it fast!

I also did genetic testing (super helpful), discovered I have a faulty gene, PMS2, so now I know that immunotherapy is a real option as my gene faulty in cancer responds really well to this = so I may have saved my future life or those of my family by moving to a private care that had more depth and more curiosity, when self funding. 

For a while I felt heartbroken than in my hour of need my beloved NHS community could not pick up the pieces safely, but I decided entrepreneur style to solve the problem and move forward. 

I am still in the after care of the NHS for one cancer and that team is magnificent, I simply paid for the op privately and am now back with the HNS post care, and the nurse is on my phone with a love heart as that is how I feel about her = amazing. The surgeon too, absolutely brill, and he told me 'normally I feel guilty if people pay private but with the current situation you have done the right thing'

It is a heartbreaking situation and also life threatening for cancer community. However my conclusion what to take action, and see the situation for the reality and ensure my health got looked after, and to leave anger and upset behind = does not help! I used to cry about how a less - what shall I call myself - empowered, or let's be honest, stubborn, driven and focussed patient, would not get the care I was able after the first 6 months, to get for myself. I just had to of course remain polite but not be worried about what the underperforming system or at times doctors, thought of me. 

Good news = cancer free 2 1/2 years on, and hoping very much to stay that way. 

I wish you the very best and I think the need now is to solve this in partnership with good doctors but not be worried to require, demand (with politeness) more, and if that is not forthcoming find a team (and sadly fund it personally) that will give you the best quality care and after care. 

Susannah

Susannah 

that’s a inspirational story good for you doing all your own work and brilliants it’s all worked out for you .

i have a unlimited private insurance however I was told at my call if I loss or  or not they will only give me a mamo once a year .

if you don’t mind me asking how did you find out you could have these additional tests scans .

I asked for a mri was told no which is unfair 

im now cancer free and what to stay that way way can I do to get these additional check I can self pay myself and advice 

love Lara x 

Hi Lara, yes I was told no many times too.

I did a lot of reading, mainly pubmed - https://pubmed.ncbi.nlm.nih.gov/ and then also looked into cancer treatments in all the developed countries for my more dangerous one. They varied with regards follow up. I also looked at NICE clinical guidelines and also checked a lot of medical papers again focussing on my cancer. I then put together what seemed to me to be the right follow up, based on international guidelines not UK ones. 

When I started I have never paid for private medicine so that are was all new, but the poor system I encountered meant I had to change teams. So I looked at the leagues of cancer hospitals internationally and chose the top UK one and called them up as a self paying patient. Not cheap but I am alive and being tested at a run rate that makes more sense to me. 

I kept a folder 'Cancer sort out' created 3 weeks after diagnosis and before I knew if it was terminal or not, and every time I found a new thing I added it to it in the early bewildered stages and then later when my feet started touching the ground again I sorted it out and started to get additional tests, almost all privately. Things like parasite testing, virus testing, heavy metal testing, vitamin and mineral testing, vitamin D testing etc. Because cancer can be caused by chemicals, viruses, parasites, genes as well as back luck I wanted to eliminate any more problems since I already had 3 cancers diagnosed n one year!

The gene testing was me asking the Marsden 'Why did I get 3 cancers in one year' and they have Prof Ros Eeles, who was and is fantastic, who researches this area. https://www.cancerresearchuk.org/our-research/researchers/professor-rosalind-eeles

A ton of bewildering research, slowly pulled back into shape for someone totally non scientific and non medical! 

The brill news is that work has already saved someone else's life, as I tell friends and acquaintances to get a schedule of proactive tests = and one guy did, had a colonoscopy and his doc said in less than 2 years what we found would have turned cancerous. So being proactive and getting tests early is absolutely life saving. 

I am not a doctor nor in charge of the NHS budget. But I don't understand why testing is not done more often as it must be cheaper than treatment. 

I am super excited (if that is the word!) in the upcoming blood biopsies = already available in the USA now being trialed in NHS, Galleri blood test https://www.cancerresearchuk.org/about-cancer/tests-and-scans/blood-tests/galleri-blood-test Available in the USA for $995 I will get it done annually. 

I also get my blood tested at RGCC for circulating blood cancer cells and they test them to see what might work best against these cells, again interesting cutting edge, which will in a few years time I hope become normal - personalised testing and combination therapy. 

I didn't take part in the Care Oncology clinic tests but they interested me too. 

All to say, I did a massive (and overwhelming) research going from knowing nothing to learning a fair amount then chose the tests that were right for me. 

I found that the negative = I was misdiagnosed 2 years earlier, and one department was simply not competent = eventually turned into a positive as sadly I could not hold trust in my original cancer team as they were not able to do a good job, so it meant that whilst that was an awful experience it pushed the onus back onto me, and within 6 months I moved teams and put into place what I think is a testing cadence better suited to staying alive for me!

Would not want to go through it again tho!

Susannah

Hi Lara, yes I was told no many times too.

I did a lot of reading, mainly pubmed - https://pubmed.ncbi.nlm.nih.gov/ and then also looked into cancer treatments in all the developed countries for my more dangerous one. They varied with regards follow up. I also looked at NICE clinical guidelines and also checked a lot of medical papers again focussing on my cancer. I then put together what seemed to me to be the right follow up, based on international guidelines not UK ones. 

When I started I have never paid for private medicine so that are was all new, but the poor system I encountered meant I had to change teams. So I looked at the leagues of cancer hospitals internationally and chose the top UK one and called them up as a self paying patient. Not cheap but I am alive and being tested at a run rate that makes more sense to me. 

I kept a folder 'Cancer sort out' created 3 weeks after diagnosis and before I knew if it was terminal or not, and every time I found a new thing I added it to it in the early bewildered stages and then later when my feet started touching the ground again I sorted it out and started to get additional tests, almost all privately. Things like parasite testing, virus testing, heavy metal testing, vitamin and mineral testing, vitamin D testing etc. Because cancer can be caused by chemicals, viruses, parasites, genes as well as back luck I wanted to eliminate any more problems since I already had 3 cancers diagnosed n one year!

The gene testing was me asking the Marsden 'Why did I get 3 cancers in one year' and they have Prof Ros Eeles, who was and is fantastic, who researches this area. https://www.cancerresearchuk.org/our-research/researchers/professor-rosalind-eeles

A ton of bewildering research, slowly pulled back into shape for someone totally non scientific and non medical! 

The brill news is that work has already saved someone else's life, as I tell friends and acquaintances to get a schedule of proactive tests = and one guy did, had a colonoscopy and his doc said in less than 2 years what we found would have turned cancerous. So being proactive and getting tests early is absolutely life saving. 

I am not a doctor nor in charge of the NHS budget. But I don't understand why testing is not done more often as it must be cheaper than treatment. 

I am super excited (if that is the word!) in the upcoming blood biopsies = already available in the USA now being trialed in NHS, Galleri blood test https://www.cancerresearchuk.org/about-cancer/tests-and-scans/blood-tests/galleri-blood-test Available in the USA for $995 I will get it done annually. 

I also get my blood tested at RGCC for circulating blood cancer cells and they test them to see what might work best against these cells, again interesting cutting edge, which will in a few years time I hope become normal - personalised testing and combination therapy. 

I didn't take part in the Care Oncology clinic tests but they interested me too. 

All to say, I did a massive (and overwhelming) research going from knowing nothing to learning a fair amount then chose the tests that were right for me. 

I found that the negative = I was misdiagnosed 2 years earlier, and one department was simply not competent = eventually turned into a positive as sadly I could not hold trust in my original cancer team as they were not able to do a good job, so it meant that whilst that was an awful experience it pushed the onus back onto me, and within 6 months I moved teams and put into place what I think is a testing cadence better suited to staying alive for me!

Would not want to go through it again tho!

Susannah

Susannah 

thank you so much for the detail and info I will look at these in detail 

how are you feeling now ? Are you still having treatment? 

love Lara x

Susannah 

can you self pay and get the blood test done in Uk already ? X 

Hello Lara,

I am fine now = all cancer free. My latest scan (2 weeks ago which was the super important 2 year mark for my dangerous cancer) was 'unremarkable'. We all want to be unremarkable when it comes to cancer! I am having a hysterectomy on Thursday but that is preventative due to the PMS2 gene so am jittery but fine! 

My original oncologist after 18 months told me about low dose aspirin, which has had a fair amount of research and has been shown to cut recurrence rates in colon cancer = he studies it for his masters. So for 75p a packet I take a daily low dose aspirin and think more folks might want to know about that. 

I have not yet had the $995 blood test done, but I am heading to the USA for Thanksgiving to see my sister so will arrange to get it done then. I am also scouting to see if it is offered privately here but not yet found it, sure it will be soon. 

Books set me off on a lot of research. Basically combination therapy is fascinating - books like Prof Ben Wallace who survived a terminal brain cancer diagnosis. 

It also showed me that the politicisation of patients can speed up things = for example USA HIV patients protested in droves to get combination therapy speeded up, whereas we cancer peeps do not protest politically. 

My choice (so I am a non protestor too) was not to go through the trauma of a formal complaint procedure, as I needed to focus on healing, but really, for my fellow cancer patient, I should have done to try to improve the system. 

Take care and hope all remains good with you 

Susannah

HI Laraj, I am not sure yet - I am going to the USA for Thanksgiving so I will get the blood thest there. I am sure it will come here very soon but IU have not as yet found it in the uK. It is being tested in  the UK but already approved and available in the USA 

Susieee 

so lovely to hear from you , I’m so happy your 2 year were clear that’s the best news .

lovely you are going to America hope you have a great time 

thanks also for the info it’s always welcome 

keep in touch love Lara xxx