Triple negative and chemo

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Hi All, newly diagnosed Triole negative Stage 1 Grade 3! Radiotherapy and Chemo mentioned as options but think I read Triple neg almost certainly will need chemo any thoughts on this please? I’m so scared of losing my hair and want to be prepared as much as possible! Thanks xxx

  • Morning Lou Lou like you I'm triple negative grade 3 diagnosis in Jan/Feb and am Kent based I have been having chemo before surgery to try and shrink lumps I started on EC fortnightly and have now moved to Pac/Carbo weekly I opted not to use the cool cap as I found it was just one step to far for me  I did loses a fair bit of hair after about the 3rd treatment just little bits to start with then slightly larger but never huge amounts I did though get very painful hair follicles so I took the plunge and had a buzz cut  which stopped the pain and actually since then I have lost very little hair I hope your treatment goes ok 

    xxxD

  • Hiya, aww nice to hear from another Kent girl Kissing heart this is my thoughts not sure I can handle being there even longer to have the cold cap but will decide once I know when this is all starting! Was the surgery options discussed with you or are they Huggingiting make that call once they see how the cancer responds to the chemo to decide? Hope you are doing ok and sending hugs Hugging

  • At my first breast specialist meeting which was with the consultant that will do the surgery we discussed my lumps and what they thought the best way to go was and it was decided chemo first to shrink lumps so that hopefully I can have lumpectomy rather than mastectomy with the probability that I will have radiotherapy afterwards then I was transferred over to the oncology consultant who discussed the chemo regime with me and looked at my veins etc to see what the best access would be have very bad veins and bruise easily so I had a port put in one of the reasons I didn't do the cool cap was because once desisions had been made everything moved very quickly last MRI on the Friday port insertion operation on the Monday first chemo on the Tuesday so I was feeling very battered and sore the idea of sitting in a mask for extra time for something that might or might not work was to much and actually I'm glad I didn't do it on some ways as it means once the chemo has gone through I can go rather than waiting the extra time to defrost and I've quickly got used to the short hair 

  • Thanks. A lot more has come out today so unless the shedding stops in the next couple of days I think I will probably clipper it before I go to Wednesday’s chemo session and not bother with the cold cap again. It will be nice to leave as soon as the chemo is done rather than sit around for 90 minutes. I needed to wear a scarf today to stop my scalp getting sunburned, but at least I still have a fringe at the moment. 

  • The shedding does slow and then you have another shed after round two….waiting to see if round three is the same…it’s slowed again for now. Xx

  • Hi Oou Lou, I am feeling ok thank you, and feel really lucky as no side effects currently.  I normally work in a hospital reception, and due to the risk of infection, my oncologist has advised not to work. In my mind in any other place of work, I would be able to go in. Due to having 2 cancerous nodes, as well as tumour, there wasn’t an option other than chemo first. The tumour has responded very well, and has shrunk in half with 3 x 3 weekly EC. Let’s hope the 12 weekly works well before surgery. Due to the position (under breast near ribs) and the original size of 13mm, mastectomy wasn’t discussed, just a lumpectomy.  
    if my nodes weren’t affected, it would have been chemo after lumpectomy. I too am a planner, and you will feel so much better once you have a plan in place, and treatment starts. 

    keep me updated as to how you get on. Good luck x

  • Unfortunately it’s almost all gone from round 1. I haven’t yet braved the shave, but there’s not enough coverage left to protect with cold cap when I have EC round 2 tomorrow 

  • Hi Lou, I hope you are doing OK and there has been some progress in your treatment plan. I was diagnosed with Triple Neg Grade 3 in April 2021 and had surgery, then chemo and lastly radiotherapy in Feb this year. It has been a long year but one good part was that I used the scalp cooling and didnt loose any of my hair! I cut it short before I started the treatment and it did thin a little but it was definitely as success despite the pain! Sending hugs x