Hi All

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Just to say Hello, just diagnosed with ILC in one breast ER+ PR+ HER2-, 6cm and now waiting for recent node biopsy spotted on the MRI.  Told a mastectomy on the one breast is required due to the size and have an appointment this Friday with the surgeon I assume to schedule and confirm the extent of the surgery.  I am in the UK, age 53, had papillary thyroid cancer with a total thyroidectomy back in 2008.  So not new to cancer though this does feel very different compared to that, feeling more worried about recurrence and have no idea how I will feel having one breast which is going to be very noticeable as I have always had fairly large breasts.  So frustrated as spent the last year and a half really focussing on turning my health around living totally clean in diet, household products, beauty products and adding things like breathing, meditation, red light therapy, rebounding and such and made major improvements in my health, so was a real jolt, though I appreciate the disease likely started a good 5 years or more ago.  

all that said I am focussing on what I can control and figure my health being so good now puts me in the best position to get through this so trying to take comfort from that and do all I can to support the treatment and recovery whatever that may look like.

not a group any of us want to join but hope sharing experiences and learning from you all will benefit us all.  

I have read a recent study just this month that radiation doesn’t seem to make a difference to recurrence or overall survival depending on your personal risk, ie not higher risk than intermediate risk and those I have not had that risk grade yet wondered if anyone has pushed back on radiation due to this study called supremo 

  • Hi. Sorry to hear you are going through this. I also had HER2 negative  ER positive and one sentinel lymph node affected. 

    Just wanted to say I have been reading loads recently on new studies etc and had heard of this one. This study is in relation to those that are at an intermediate risk of recurrence so probably need to ascertain that first which can be found by having an oncotype dx test which may be offered to you. It is always worth asking about these studies though. There was another study which found 5 sessions of radiotherapy were as effective as 15 sessions which at the time I was just about to start so I raised that study also but it did not apply to me due to my age (40 at diagnosis). 

    Also was watching an interesting programme on channel 4 last week about scientists trying to find cures and they said they now know that cells are pre-cancerous for 10 years before they turn into cancer. Very interesting and worth a watch if you like researching etc. 

  • Hi, I’ve just had a look at this trial data. Whilst there was no difference between the two groups measured by 10 year overall survival rates, the website that I looked at seemed to suggest that was a difference of recurrence rates in the chest wall between the two groups. 
    Ive copy and pasted the section from

    https://www.nejm.org/doi/pdf/10.1056/NEJMoa2412225

    “A total of 29 patients had a chest-wall recurrence — 9 (1.1%) in the irradiation group and 20 (2.5%) in the no-irradiation group (between-group difference, <2 percentage points; hazard ratio, 0.45; 95% CI, 0.20 to 0.99).”

    It might be worth asking a professional to decipher this in the overall context of the study,  as they will understand more, I guess. 

  • Thank you for that insight and yes, I just started watching it.  I am not sure when you were diagnosed but hope all going well.  I will certainly be asking for the gene test to get a clear idea of risk and doing all I can to stop recurrence, I just wish there was a way to know what sparked it to grow which I know they still have yet to identify.  Thank you for taking the time to reply xxx

  • It’s a very interesting watch.

    i was diagnosed  October last year. I completed chemo in Aug and radiotherapy in Oct. I’m now on letrozole and await blood test results to see if I’m ok to go on another drug Abemaciclib. I’ve also got an appointment in December for my first bone infusion. 

    Yes do. I had the gene test and I am brca2 positive so I think genes play a big factor.