Surely not again!!UPDATE!!Another Update!!

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UPDATE!! JUST GOT A CANCELLATION FOR MY CT SCAN IT'S TOMORROW AT 11:40am.Hi all iv had invasive ductal carcinoma breast cancer twice.1st in 2010  bilateral mastectomy, Tram flap reconstruction, Chemo, radio, Herceptin and hormone therapy.Only 4yrs and 8months later.I had a recurrence in 2015.Only this time it spread from my chest wall, into my reconstructed breast and into my lymph nodes.I had my right reconstructed breast removed and again, Chemo, Radio, herceptin and hormone therapy.HER2+ and invasive both times.I havnt been feeling well for a few months and iv been having tummy pain and fatigue for months so My GP sent me for an abdominal ultrasound scan on Wed last.I got a phone call from her on Thursday morning informing me that radiology had contacted her saying they have seen spots on my liver and there sending me for a Red flag CT scan on 29th August to see if it's secondary breast cancer in the liver.To say I am shocked is an Understatement.I feel like my world is crumbling around me.Barely eating and little to no sleep.1st BC at 32yrs old 2nd at 37yrs old I'm 45 now.Any advice would be greatly appreciated Thankyou.                                                                                                                                                   Had CT scan Tuesday last week got results here on Tuesday They needed me to have an MRI only of the liver this time last thst when it's showing up on the scans.Had a cancellation for this morning.It was for 10:30am.I came home and to my shock there was a letter from Oncology asking me to go up for and appointment on Wed 6th Sept at 3pm.I was only discharged from oncology a few months ago so it was a complete shock to get this appointment.I will keep you all posted about my results 

  • Hi CD41,

    Sorry to hear about your situation. Hopefully the CT scan will be clear, but if not, try not to worry too much.

    The shock and the not knowing is often the hardest part. If it does turn out to be mets, hopefully you'll feel better once there's a treatment plan.

    There are women who have been living with metastatic breast cancer for many, many years (20+). There are so many treatments now, both surgical, drugs and radio, and new treatments are being discovered all the time. My wife's oncologist told her to think about it as a chronic condition. She'll always need treatment, but if one stops working, they'll just try another.

    Did they mention a biopsy to check for receptor status again? Hopefully they will if necessary.

    All the best, and stay strong!

    Andy

  • Thankyou Andy no mention of biopsy just getting this scan done today and if it is cancer again they will most likely do a biopsy 

    CD41

  • I am sorry to hear this and hope you get the outcome from the CT scan quickly. 

    I have secondary breast cancer in my liver. My cancer journey started in January 22 with a routine mammogram. Small tumour found, but it turned out to be grade 3 and TNBC. It was excised with clean margins, lymph nodes were clear, and I hoped I would get away with it. There was vascular invasion at the tumour site, and that, together with the grade and type of cancer, took me into 24 weeks of chemo last summer. 

    I was about half way through that when I was hospitalised with diverticulitis. A CT scan was done, and it found a suspected cancerous lesion in my liver. This was confirmed through a liver MRI and PET CT. In November, I went through a microwave ablation process to take a biopsy and burn out the tumour. 

    By the next scan in March, the tumour had reformed, along with another. After quite a lot of faffing about, the hospital put me on immunotherapy (Pembrolizumab) and more chemo. There are some signs this is working for me as recent scans show some shrinkage. 

    The initial news about the secondary came as a “oh and by the way’ at the end of a chemo review phone call with one of my consultant’s registrars. I thought my world had fallen in, especially as there aren’t many treatment pathways for TNBC. I was lucky to find I had a PD-L1 positive cancer, which made me eligible for the immunotherapy. As you will know from your earlier experiences, waiting for results is by far the hardest part, and once you have a treatment plan, emotions settle a bit as you crack on with it. 

    wishing you all the best 

  • Hi Coddfish I'm sorry to read about your experience with cancer.I agree the waiting is the hardest part.I just hope they contact me sooner rather than later.Thanks for your reply I wish you all the best with your journey 

    CD41

  • Just sending you a big hug! 
    I hope you get to the bottom of what is wrong soon. Waiting and the unknown is so hard. I hope you can find something to distract you and nibble away at something to give you a little bit of energy. 

    I had breast cancer diagnosis twice too and then NED for ten years, nearly, as was diagnosed with something on my spine last year. Treatment is working for me and currently no evidence of active disease. 

    warmest wishes 

  • Hi Caroline22 Thankyou so much for your reply.The waiting is just Awful.Whats making it even worse is I'm having to suppress my emotions around my children 19,16 and 13yrs old They are so clued into things and have had to cope with my cancer diagnosis, surgery's and treatments etc.. over the years.I am a talker lol and usually speak to my friends and family over the phone about these things but im in Mama bear protective mode at the minute.Ultimately as far as my children are concerned there is nothing to tell them at the minute and I don't need them worrying until I find out what we are possibly dealing with.My hearts saying it will be fine but my heads telling me that it is possible mets.You are going through alot of things yourself and I am so glad to read your treatment is working.May I ask if its a targeted treatment or combination with Chemo? 

    CD41

  • Hi CD, 

    I hope your scan went well and you don’t have to wait long to get the results. Try ti keep busy.

    Yes absolutely right - kids pick up clues so quickly. Mine were year 6 and year 8 when the fun started. It’s a balance between letting them know and what info to give, and depends very much n personal circumstances. It does sound like you do need to talk to people- can you find a space where no young ears tune in? When I had my second primary and more recently the recurrence my head was all over the place too and in both cases kids were at home. It was tough.

    I am on targeted therapy as my cancer is er+ and her-. I started with denosumab and exemastane but that showed mixed results, so moved to denosumab fulvestrant and Ribociclib and that eliminated all visible cancer issues. So I am continuing to take this and hope it works a long time.

    big hug for you and hope it turns out as no cancer but if it does mean cancer then remember that over the past few years there have been excellent results with a range of new drugs for metastatic breast cancer and they are available on the nhs. Fingers crossed

  • Thanks for your reply Caroline22.I got my CT results on Tuesday this week.They said it is definitely showing spots on liver but before they make a decision on anything they want me to have an urgent MRI on my liver with contrast.I actually got a call this morning saying there is a cancellation for today.I had only 30mins to get to the scan and without breaking any laws we made it on time lol.My Husband was driving.I had been discharged from Oncology earlier this year which I was delighted about.They had said at the time they don't routinely scan unless I had symptoms.So I haven't had a scan about 1 and half years.When we got home from my MRI the post man had been.I opened the envelope and low and behold there was a letter with an Oncology appointment for me for next Wed 6th September.Well I though I was going to throw upNauseated faceThere is only one reason that I would be getting an oncology appointment after being discharged a few months prior.It has to be caner in my liver.Last weekend we had to tell our children as they knew something was up.I have been upfront with them and have axplained that we don't know for sure if it's cancer again or not.I have to say they all handled it remarkably well.Ofcourse there were a few tears.Iv also told them I have my oncology appointment next week and will know for sure then.It has made this whole thing alit more bearable for me as I can now talk openly about it all.I am hopeful they can manage it with treatments but I am also fully aware that if it is cancer that there is no cure.

    CD41

  • Also I was told it isn't in my spine,pelvis or lungs 

    CD41

  • If you think about it, the oncology appointment must have been set up before your MRI when they had decided to investigate your liver further, so it doesn’t mean they already knew something they haven’t told you. As you say, there being no cure for secondary cancer doesn’t mean it’s not treatable. Small areas can sometimes be ablated, although my experience of that was it grew back afterwards.  As mentioned previously I have metastatic cancer spread to my liver. It’s being treated with immunotherapy and chemo, and I am, for now, symptom free and living a largely normal life, albeit with a lot of hospital visits. Good that you don’t have to wait long for your appointment.