HER positive cancer and lymphnodes

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Hi, I am new to the Macmillian community page. I am currently supporting my mum though breast cancer. She was diagnosed with stage 1 breast cancer on the 6th September 2023. At the time of her diagnosis the treatment plan was to have a lumpectomy/removal of some lyphnodes to test and 5 days of radiotherapy 2 months later. My mum has today had her follow up appointment from her operation. The cancer is still stage 1, the operation successfully removed the lump and had not spread to any of the surrounding tissue. The cancer was however found in the sentinel  lymphnodes so her treatment plan has changed. My mum has been given 2 options, she can either have all her lymphnodes removed or have radiotherapy to target the lymphnodes as well as the previous cancerous area of the breast. If my mum was to have the lymphnodes removed, these would be tested and if the cancer had spread to more than 3 lymphnodes more test would be carried out to see if the cancer had spread to anywhere else in her body. Alternatively, if she was only to have the radiotherapy, she would never know if the cancer had spread to other lymphnodes or any where else in her body. There is also the higher risk of lymphademia if she were to have all the lymphnodes removed. My mum has also now been told that because of the type of cancer she has, HER2 positive, chemotherapy for 5 months would be recommended to prevent the cancer from coming back as well as radiotherapy. It’s also recommended that she has an injection every 3 weeks for a year after the chemotherapy treatment. Me and my mum are both in shock and absolutely devastated as this is not at all the treatment plan we expected. I appreciate that she is very lucky and that there are a lot of women out there in much worse situation than she is. I was hoping to be able to reach out to women who had a similar diagnoses/treatment plan to my mum so she can hear their stories and maybe help her decided what to do moving forward. I am absolutely terrified that the cancer may have spread because I cannot bare the thought of loosing her. I would be so grateful to anyone who can offer advice/reassurance for me or my mum.

Lucy x

  • I didn’t have my nodes removed but wish I had. It’s one way to be sure any nodes with cancer are dealt with. Some cancers are not responsive to radiotherapy and we find out after the event. I would have received more specific advice if the number of affected nodes was known. There’s still a lymphoedema risk from radiotherapy, though lower than surgery. I think that’s what swayed me in the end as my dominant arm was at risk. It’s a tricky decision. 
    I also took turkey tail mushroom capsules as read it was helpful for HER2 positive cancer. 

  • My experience sounds very similar. I was diagnosed dcis with micro invasion July 2021. Had mastectomy and 3 lymph nodes removed and 1 of the nodes came back positive….then her2 came back positive. Because of the positive node I had a bone scan and ct scan, they were both fortunately clear but it was a very stressful wait for results and I then had 6 sessions of TCHP and finished off with the 3 weekly injections.

    They dealt with the lymph nodes with extra radiotherapy, I was told this would deal with anything left lurking. I do still worry that there might have been more nodes affected but have learnt to push these thoughts aside and try to trust my medical team and am mostly getting back on with my life now….fingers crossed!

    The treatment is hard and feels never ending but it does pass. Best wishes to you both x

  • It seems a common theme that once you have had surgery your treatment plan changes. I had successful surgery for grade 3 tumour and was told I was cancer free last November. I expected radiotherapy all done by Christmas. However when I saw oncologist chemotherapy was recommended and then radiotherapy so went with that. Huge shock to us too. But I went with it and don't regret any of it. It wasn't nice but should it come back at least I know it isn't because I refused any treatment. Also alot of travel insurance ask if you have declined any treatment so worth doing just for that.

  • Hello Lucy,

    I completely get how you're feeling,  it's a very stressful time. My cancer was her2 positive as well. I was diagnosed in Oct 2019. Mine was 2cm in my breast and they found a further lump in the same breast and also it was in 2 nodes. Stage 2b. I was of course terrified.  I underwent 5 months of chemo,  then surgery which involved a substantial reduction in my boob but I just wanted it gone. I had complete clearance of all nodes under my arm. I then had radiotherapy and a year of herceptin injections every 3 weeks. Its a long slog but now I know it was worth it, still here and living life. I've not suffered lymphodema so far but I know it's a lifetime risk. I do regular massage on it to help with drainage. 4 years later, life is good and your mum will be OK, just be the lovely daughter you obviously are and hold her hand thru this difficult time. Wishing you all the best 

    Julie x

    Charlieandlola