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Impending mastectomy and lymph node removal

Lizzy03
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Hi, there this is my first post and I'm hoping someone can give me some advice!..

I was diagnosed with Her 2 positive grade 3 (and stage 3) breast cancer and lymph node positive back in September 2022. I have had 6 chemo sessions and am now having immunotherapy (antibody) treatment.

The latest MRI has shown there are no longer any signs of cancer tissue/cells in the breast or lymph nodes. Which is fantastic news of course, but I am now waiting for a full mastectomy and axillary lymph node removal, which as hard as I try and I have researched this a lot and am waiting on a second opinion, seems too much to go through, especially with such good results, from my scans.

I am seriously worried about the high risks it seems of lymphoedema, and of course losing my breast. I already have weakness in my right arm and continuous pins and needles, since my first biopsy ( the side I have  cancer) and Cording from the Chemo drugs and cannulas. So I  feel I would already be at quite high risk.

Is there anyone out there who hasn't gone down the route of this drastic surgery, and taken alternative treatment, or can advise me..

I do know of someone who refused surgery, and had radiotherapy instead of the surgery, but my family, friends and Doctors seem horrified that I may not go through with this. I have to make my mind up soon as I am due to have surgery in the next few weeks ( just waiting for a date) would appreciate any advice offered.

From a very worried lady! ...

 

 

 

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    Lizzy 

    welcome 

    I had lunpectomy and full auxiliary node clearance it wasn't that bad honestly I feel great I had this in July & august 22 x 

    happy to chat xx 

    love Lara ️

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    Hello. I had a mastectomy before Christmas followed by 5 sessions  of radiotherapy which finished 5 weeks ago. I didn't finish my chemo.  Oncologist stopped it as I was unwell and it was exacerbating an existing health issue.  My surgeon was keen to operate and remove the tumour asap as a result

    I feel I have recovered well from the operation.  I had hardly any pain after surgery. The aftercare was very good.  Radiotherapy was also painless .I have had a very slight skin reaction and feel quite tired although that seems to be getting better. 

    No sign of cells in the lymph nodes.  Check up in June .

    I can understand your concerns and hope that you can get plenty of advice and answers from your care team. 

    Just hoped that sharing my experience may reassure you about the procedures.  

    Very best wishes 

  • Offline in reply to Voirrey

    Hi, thank you so much for your replies, Lara and Voirrey.

    It means a lot to hear how positive you both are, and that your experiences were good ones, I'm pleased you have both had positive outcomes. And hope you continue to do well.

    I spoke with one of the breast care nurses yesterday and she's going to get some more information for me and chat again next week, so that's good progress.

    I am also hoping to have a chat again with the Oncologist. 

    They plan to do the surgery in the next two to three weeks, so I have to be sure before I commit to it.

    It's very scary, the unknown and I guess I'm thinking of the worst that can happen. 

    Best wishes to you both

  • Offline in reply to Lizzy03

    Lizzy 

    yes it's good to talk it through the only thing really that gif in my way were the drains I had these fkr around 8 days afterwards, and the not being able to drive other than that things went smoothly 

    I do have some tightness here and there which I massage and it seems to help .

    here gif a chat anytime good luck 

    love Lara ️

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    Hi Lizzy, 

    Im in almost the same position now as you were 6 months ago. I wonder if you can let me know what you decided to do and how you’re doing now? It’s so difficult finding the right information, but I’m desperate to keep my lymph nodes without affecting my reoccurrence risk. 

  • Offline in reply to Verity1

    Hello , I had bilateral mastectomies and lymph clearance on left breast ,last September. Followed by chemo which finished in March ,felt pretty good throughout. Wasn’t really given a choice about the left breast ,could have had partial  on right side ,but I felt happier having it totally removed. It’s a very personal choice .I did all the exercises the Breast nurse taught me ,after lymph clearance the gentle massage too . I have a little numbness under my left arm but nothing awful. I do massage that arm in morning after my shower and moisturise it too. When I watch tv at night I do the same , it’s a habit now . So far all is well ,always wear gloves gardening too .

    It is hard to know what’s right ,have another chat with breast nurses as well as consultant and tell them about your fears ,

    All the best R x

  • Offline in reply to Verity1

    Verity 

    I also had lunpectomy and full auxiliary node clearance to left arm 

    same as rumpelstilskin some numbness few pins and needles but not as bad as I thought it’s quite minor to what I had imagined it to be xx good luck xx

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