Triple negative and chemo

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

  • Lou Lou

    I had the same diagnoisis 2 years ago hopefully your lump will shrink as mine did nearly to nothing, losing my hair scared my so much

    but I heard about real hair wigs that could be stuck to your head, you shower and style them as if they were your own hair, going back once a month to have it taken off styled and stuck back on, I never had to see myself bald, I'm not vain I just could not handle it.

    Not sure what paart of the country your in but this is available in London area

    Good Luck x

  • Hiya Spangle, 

    Thanks for this! Do you mind me asking did you have chemo before and after surgery and if so how quickly did you lose your hair I just want to be prepared? I am in Kent so easy to get into London and had heard of a salon that offers this could you give me any recommendations and how long the process takes from consultation to having your wig ready to wear? Hope you are doing well now so good to hear that! Thanks so much x

  • I am also grade 3 triple negative. I had an 18mm lump, no spread into lymph nodes. I had a wide area excision with sentinel node biopsy and am now having chemo and will follow this with radiotherapy. It seems to be a standard recommendation for this cancer unless it’s very small. I was given a voucher towards a wig. 

  • Hi Coddish, 

    Hope you are doing well? That was my understanding too that it would be chemo followed by radiotherapy but my consultant hasnt confirmed anything as yet but need to be ready! How are you feeling through the chemo? Who do I contact re the voucher and can it be redeemed anywhere? Sending you a hug and hope your going well! Xx

  • Yes I am doing well thank you. One thing to bear in mind is that each step is decided by the relevant specialist. It’s the medical oncologist, not the surgeon, who will advise on whether chemo is recommended. I saw the oncologist about 6 weeks after surgery, went back a week later to consent, and then started chemo the following week. The oncologist referred me to the service within the hospital for the wig. I don’t know that all hospitals work the same way, mine is a very large University teaching hospital. I am also cold capping to try to preserve as much hair as I can. 

  • Thanks this has really helped! Wishing you the very best through your treatment! How’s the cold capping not sure I will do this as my hair is so fine and fear I will lose it anyway! 

  • Hi Lou Lou. I was diagnosed in Feb 22 with 13mm tumour and two cancerous nodes. Started chemo 3 x 3 weekly EC beginning of March, then started 12 weekly Pax with Carb every 3 weeks. I will have lumpectomy 4 weeks after chemo finishes, then 6 weeks after that 3 weeks of radiotherapy.

    I too had thin hair and tried the cold cap for the first 3 treatments. The hospital put me in contact with someone who helped source a wig. I lost over 50% of my hair with the first 3 treatments, so decided to give up.  I had my hair shaved last week as my hair looked awful. I felt so much better once the decision was made, and wear my wig out, but scarfs, hats etc when I am at home. I was a shook, but we all know it will grow back. 
    Good luck x

  • I am on day 20 of my first cycle (EC). The shedding started on day 16 and has been gradually building up. I don’t know whether I will keep enough hair for it to be worthwhile or not. At the moment I am just raking out the loose hair regularly and going along with it. Will cold cap again for my cycle this week, but I have also bought some clippers…

  • Hi Sandrad, hope you are doing well, how are you feeling in general through treatment? Have you been able to work if needed? I am hoping I will find out more about my treatment plan once all my results are back, I am awaiting genetic testing results and a microbubble test on lymph nodes to be sure no cancer there! The wait is the worst!!! I had considered cutting my hair short before treatment but don’t think I can handle that before so will just go with the flow. How did you feel about lumpectomy over mastectomy? I have micro calcification in my right breast along with the  tumour in my left so I am torn but I my consultant is saying probably lumpectomy and chemo either before and after or just after so I feel I know nothing for definite at this point. I am a planner and unfortunately it seems that you have no control over any of this which is hard! Thanks for your reply and I hope you are kicking its butt xx

  • Good luck Coddish, I think I may try the cold cap at least for the first and see how I fair! Wishing you all the best x