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 

Fiona 

thanks so much for your fepky 

yes 3 years is agonising for us but what can we do lovely . 
but what gets me is that in 3 years if it’s not caught can you imagine how much it’s travelling through body so when they say it’s harmful how can it be as harmful as that 

what do you think ? 

love Lara x 

I was told that the mammogram doesn’t show progression that quickly but who knows? A workmate and myself were diagnosed within three months of each other. She died this morning while I am free of disease right now. It’s scary!

Fiona 

I’m so sorry about your work colleague how terrible .I can imagine the shock 

my bestie and I both were sane within 4 months of each other .

have you had annual mamos since all clear ? 

I had annual for 2 years but now three yearly.