Not Good News

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Hi All

I was originally diagnosed with triple negative breast cancer in 2020, I underwent a lumpectomy, with sentinel lymph nodes removal and a breast reduction.  I then started chemotherapy and during this time felt a lump further up but in the same breast as I had the other lump removed.  I queried this with my BCN and was informed that it was scar tissue so I took their word for it and continued with chemotherapy and radiotherapy.  All throughout the treatment, I was experiencing shoulder pain, the lump was not reducing and my right hand/arm started to ache and slight numbness occurred.  I queried again with the BCN and again was told nothing to worry about it was scar tissue.  I had radiotherapy and finished this in December 2020.  In January 2021 I contacted my BCN again to say that I was having a lot of pain and would like to be seen again.  The BCN assured me that there was nothing to worry about and that she would send me for a scan to put my mind at ease.  I had a further biopsy and was devastated to learn that this was another cancerous lump.  I was advised to have chemotherapy again and then a mastectomy to remove the breast.  After trying chemotherapy, the lump progressed to the point that I could no longer have surgery to remove the breast due to the fact that there was also a cancerous lump that had formed in the lymph nodes and was situated in an area where it was dangerous to operate.  

I was told that my cancer was then incurable, inoperable but treatable.  I have tried several lines of chemotherapy and since my latest diagnosis I was given Eribulin and Capecitabine a further course of radiotherapy all of of which have progressed my cancer and I can no longer have the breast removed.  I have lymphoedema in my right arm/hand due to the treatment, this was also something I had to battle to get referred to the clinic,  The cancer has now progressed to the whole of the breast, skin of the breast, 1 rib and chest muscle.  I now have to undergo another biopsy to see if I am suitable for a clinical trial.

I am trying to be as strong as possible to not let my family see how hard it is to hear the news, but find myself breaking down when no-one is around.  I'm not certain I am going to be suitable for the clinical trial or if it will either work.  Although I am feeling well within myself, I am terrified but holding on to faith that something will help to shrink or stabilise the tumours.  I did read an article about a drug called Trodelvy that was used in Mount Vernon Cancer Centre in Northwood, Middlesex for a patient who has triple negative breast cancer.  It is a licensed drug but is not yet approved by NHS.  Has anyone had any experience of this drug or any other treatments they could suggest?  I am determined to keep fighting on and hope that they can find a suitable treatment plan for me.

Apologies for the lengthy message and thank you for taking the time to read this.  Any suggestions of anyone else experience of a treatment that has worked for them that I can raise with my oncologist would be greatly appreciated.  

Thank you

  • Hi FaithDe

    Sorry to hear that your Cancer has returned and that surgery is no longer an option. Apart from the two chemo drugs that you mentioned what other chemo drugs did they give you?  I was given AC and Dose Dense Taxol to treat my triple negative breast cancer which worked for me.

    Best of luck with the results from your latest biopsy and hopefully you’ll be suitable for the clinical trial.

    Best wishes

    Daisy53

    Community Champion Badge

  • Thank you , after surgery the chemotherapy was FEC-T, I was ok with the FEC part but had to stop the 3rd Docetaxel due to reactions after being admitted into hospital after each session.  I've also tried carboplatin, Eribulin and Capecitabine.  If there are any other treatments that have worked for others suggestions would be greatly appreciated.  I'm not sure how long it will be before I know about the trial, just waiting for a date for the biopsy, due to staff shortages it means a delay in getting this done.  It is scary as within 10 months the cancer has been progressing.  

    Hopefully like you say I am suitable for the trial.

    Thank you and Take Care

    FaithDe

  • Hi 

    I am so sorry you are going through this. I too have been breaking down a lot when no one can see me - in tears tonight because sometimes it just seems so unfair. 

    I dont have experience of Troveldy but my oncologist told me this week this would be the third chemo to try if the new chemo I start next week doesn't work. I've been on capecitabine which hasn't worked so next week I start on Gemcarbo (gemcitabine and carboplatin). If this doesn't work she mentioned the Troveldy but she did say you had to have tried 2 lines of chemo before they put you on this. So do keep pushing because it sounds like you've had at least 2 chemo regimes?

    We can only have faith and prayer (if you believe in prayer) that they WILL find something that will stabilise and even shrink the stupid cancer. 

    Take care.

  • Thank you so much , I do believe in the power of prayer. I don't think I would remain so strong throughout all this without the prayers.  I haven't heard of Gemcarbo, however I already tried carboplatin that didn't work for me.  I have noticed that there are a few members who have been put forward to try Trodelvy, I'm just praying that this is the breakthrough that we all need to even stabilise the cancer.  

    I'm trying my best not to feel the area where the tumour is but each day when I shower I feel the lump and it makes me so anxious that this tumour is going to keep progressing.  Hopefully I will hear something from my oncologist to see if I am suitable for the clinical trial or if Trodelvy is an option for me.

    I'm sending you virtual hugs, I know what you mean sometimes it really does seem unfair.  Each morning, i'm thankful that I get to another day.  

    Take care , you are doing great and I am so thankful for you all for all the encouragement I receive.

    Hugging