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Diagnosed with triple negative breast cancer.

Lilly96
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Hi. I was diagnosed with stage 3 triple negative breast cancer last week. We know it has spread to the nodes under my arm. I am now being tested for the BRCA1/2 gene and at the weekend had a few mri’s and another biopsy of a node resting  in my collarbone that has enlarged since my last biopsy’s.

They want me to be part of the Partner trial, which I think I’d be silly not to take part in. But I am so worried that my scans will show that it has spread further than my nodes and I won’t be eligible for the trial anymore. The trial is my best option.  I had Bowel cancer 10 years ago aged 29, which resulted in a resection and chemotherapy. I was so lucky to come out the other side it.

I have read some articles about TNBC, but to be honest it’s all a bit too much at the minute. Everyone keeps telling me, ‘you’ve done it before, you can do it again’. But what if I can’t? I can’t tell them this. I’m trying so hard to be positive for them and don’t want to show them my fear.  I’m just so tired . 

I don’t really know why I’m posting, maybe it’s to get my fears off my chest. I’m still working my normal hours and intend on doing so until the chemo starts in a couple of weeks, but I am struggling. I’m really tired and have a lot of pain in my shoulder and arm. 

I guess what I’m asking is has anyone had experience of the Partner trial. And what were people’s treatment options (if any?) if The TNBC had spread further?

Apologies for the long post x

 

  • Hi Lilly96, 

    Wow it sounds like you've got a lot going on at the moment. I'm not surprised that you're feeling tired and struggling with everything. I hope that getting everything written down helped. 

    We've another fairly new member to the forum [@Annjo8]‍ who has also recently been diagnosed with TNBC. I'm going to tag you into her post shortly so hopefully the two of you will be able to connect and support each other. 

    I've also looked throught the forum but I can't find reference to anyone who is on the PARTNER trial at the moment. We do have some information on our website about it which I'll link for you here. 

    I know there's lots going on at the moment Lily. I hope that you're able to try and take some time out to look after yourself as well. It's easy to feel over whelmed by it all and if it helps to come and offload here then please do that anytime. If you think it might help to talk to someone then our team of nurses are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • Offline

    Hello

    i start chemotherapy on Tuesday for TNBC and like you I feel tired all the time but I’ve been told the tiredness is just another form of emotions we are going though. 

     

    You need to keep postive (yep I know it’s easy to say but hard to do) and look forward as it will help you. 

     

    I to am waiting for my genetic results and crossing my fingers it’s negative as I have two children who are been my rock and keeping me going.

     

    ive never heard of the trial you have been offered but I would say take it jump at the chance to throw everything you have a kicking TNBC’s ***. 

     

    More ladies/men will be along soon to give more advice to us x

     

    WE WILL BEAT IT HUN AS WE ARE STRONG AND FIGHTERS xxx

  • Offline in reply to Annjo8

    Hi. 

    Thank you for your reply and I’m sorry I have taken so long to get back to you.

    i went back to oncology Thursday to talk about my treatment plan, which was due to start next Friday, but it’s been put on hold. My cancer is advanced and growing quicker than they expected. It is moving quickly up my body, and because I’ve weakness in my left arm they sent me for a brain scan on Friday.  I’m not allowed to drive until they have the results, which should be Tuesday. If they are ok, then the treatment plan goes ahead as normal. If not, then I don’t know what will happen. 

    I have decided that there is nothing I can do, I am not in control anymore, but I will fight every step of this journey with all I have. 

    I hope that your chemo hasn’t hit you to hard and that you have a good support network around you. My family and close friends have been amazing and I feel very lucky to have them in my life. 

    It would be lovely to keep in touch. 

    WE CAN DO THIS!! 

    Take good care of yourself xxx

  • Offline in reply to Moderator Jenn

    Thank you for taking the time to reply to my post. It has been a huge help.

    My journey seems to be taking a turn in a different direction for the moment and treatment has been put on hold until I have the brain scan results. 

    All I can do is just wait for now. 

    Thank you once again and take care xxx

  • Offline

    Hi lilly you want to find out exactly what the trial entails first before you try it, i had option of trial but you don't know what treatment you were having, one was experimental nobody new what would happen, i turned it down, i wanted to be sure it would work properly for me. Up to you but find out first,. 

    Billy 

  • Offline in reply to Billygoat

    Hi Billy.

    The trial that they were offering had already proven to be successful and the treatment they were offering was only available privately or through the trial and not on the nhs, which is crazy. 

    I was offered a trial 10 years ago when I had bowel cancer, which was half the amount of treatment, which I declined. Who would accept half the dose of treatment with an aggressive form of cancer? 

    Unfortunately I had a phone call today from my consultant to tell me that the latest scans show a large amount of cancer is also in my arm and chest. What this means, I don’t know, apart from the obvious.  He said that the trial isn’t the right treatment for me now. They are having a meeting tomorrow to discuss my case. I am going back Thursday to see him and he’ll explain the findings and what the treatment plan will be. 

    Fingers crossed I will know everything in a couple of days. 

    Thanks for your reply x

  • Offline in reply to Lilly96

    Hi there, 

    I'm sorry you are back to the waiting game again. I'm crossing my fingers for you x

  • Offline in reply to Kajena

    Thank you [@Kajena]‍ I went back to oncology yesterday and it wasn’t the news we were expecting. There is too much lymph node involvement and the treatment plan has now changed to management of the cancer rather than cure. For the moment there is no plan for radiotherapy or either an operation. There is talk of immunotherapy to run a long side chemo, but that depends on tissue sample results. I will have a scan a few months down the line to see if the chemo is helping to shrink the tumours or not. Fingers crossed. 

    I just can’t quite get my head round it all. X

  • Offline in reply to Lilly96

    Hi Lilly

    first I would like to say I’m so sorry for my late reply my chemotherapy was pushed back a week due to needing a dentist (typical) 

    my chemotherapy went well and I gave the cold cap a go (looked like I had Lego bricks on my forehead as the cold cap was to low and left a cold burn so felt like I had done 10 rounds with Mike Tyson just on my forehead) but what really knocked me for 6 was the injections to boost white blood cell count, the pain in my hips and ankles was horrible and the next day constipation kicked in.

     

    my next chemotherapy is on the 24th July and I’m going to ask for a dietitian to help me (still not right with food).

    i had my phone call today about my results for the genetic testing and my gene are normal no mutations so I will need to talk to my team about what that means for surgery wise but I’m still definitely going for radiation treatment once chemotherapy and surgery is done just to make sure x

     

    im sorry to hear your journey has taken a different path but you still keep positive and kick it’s *** hun as you are strong and have got this xx

  • Offline in reply to Lilly96

    Hi Lilly,

    I'm very sorry that your treatment plan has changed. I hope you are *** well and that the chemo is having an effect x

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