Grade 3 triple negative

Hi I’ve just been diagnosed and wondered if anyone on here has the same as me? They said it’s grade 3 triple negative whatever the hell that means?! I am booked in for a lumpectomy and dual technique SNLB on 19th. Pretty clueless so any advice would be much appreciated! 

  • Pre assessment is mainly asking questions about your general health, they will weigh you measure height, maybe do mrsa swabs, go through all your contact details, normally fairly straightforward,  bra wise I got a couple of the M&S good move sports bras they were back fasteners (couldn’t get on with front fasteners) just fastened it at the front and spun it round, they were comfortable as you have to wear them all the time for weeks, take an overnight bag just in case, I stayed in as the blue dye made me sick, another good tip is get your house all organised so you can rest when you get home, easy dinners no ironing and physical cleaning.  I found pottering about just enough for a few weeks, washing my hair was tricky as you can’t lift your arm over your head for a while, get some dry shampoo and get someone to help.

    xx

  • Great advice! Thank you so much. I’ll take all that on board. Much appreciated x

  • Hi Cereza,

    im triple negative stage 2 grade 3. Was diagnosed on 3rd of December and started chemo on the 20th. I’ll have chemo up until the end of may and then a full mastectomy and lymph nodes removed. I’m having chemo first as my lump measures 10cm in my breast and 4cm in my lymph nodes. So time was of the essence to get some drugs in me and get it shrunk before surgery. I was misdiagnosed back in June unfortunately. 

    Reading some of your other posts, I was signed off work from the day I was diagnosed. From what I can tell they needed to act quick in my situation and I’m having chemotherapy weekly so works out of the question for me for a while.

    it all sounds gloom and doom but I’m positive, I’ve not felt sick and I’ve still got hair on my head. I get out walking most days. 

    I made the mistake of Googling all sorts and it did start to make me feel down. Stick to these groups they are more positive and helpful. Take each day in your stride and you will be fine. 
    all the best with your treatment xx

  • Aw thank you so much. Wow 10cm is big. Mine is only 1cm so I need to get a grip! You’ll kick it’s butt I’m sure! Good luck, sending love xx

  • Hi Cereza

    I've been lurking on the forum since my diagnosis 8th Sept and finally feel in a place where I can engage. I was diagnosed with stage 3, grade 3 tnbc with lymphnodes involved. It looks like we are on slightly different paths as I have completed chemo first (dose dense EC and paxitaxol 4 rounds of each over 4 months) and I'm booked to have a lumpectomy and sentinel node removal 27 th Jan. So you'll be having surgery before me. I found out this week that chemo has done its job and I've had a complete response and my breast tumor was large.

    I wanted to message as I remember feeling so overwhelmed trying to get my head round TNBC! The team I've been working with in Edinburgh have encouraged me to remeber that all statistics for our type of cancer is very outdated and it is treatable. 

    Good luck with your op next week!

    Cheers

    Lizzy

  • Hi Cereza

    So sorry you have joined the club none us of want to belong to. As others have said, do not Google TNBC - it is all so negative. Listen to your own specialists. Get trusted, recent and relevant advice.

    This is my first ever post so please forgive me if I ramble on! I too have Grade 3 TNBC. Mine is Stage 3a and my tumour is 14cm - huge... All my lymph nodes are affected on the right too so they will be removed during the mastectomy. I am having weekly chemo (Paclitaxel and Carboplatin for 12 weeks/4 cycles) followed immediately by EC, another combination, for 9 weeks, every 3 weeks, for 3 cycles then a mastectomy and lymph removal (I have asked for a double mastectomy) then radiotherapy.

    My timeline went like this:

    26/11/21 - had my mammogram, uktrasound and biopsies (I knew it would be breast cancer, had a gut feeling before the appointment and my instincts at the appointment confirmed it)

    03/12/21 - diagnosed

    09/12/21 - MRI with contrast

    17/12/21 - PET scan to see if it had spread

    21/12/21 - scan results (the very worse part. I was terrified it had spread - thankfully it hasn't).

    23/12/21 - met my Oncologist

    31/12/21 - first chemo of cycle 1

    07/01/22 - second chemo of cycle 1

    12/01/22 - GFR Estimation (kidney function tests)

    14/01/22 - third/final chemo of cycle 1

    21/01/22 - day 1 of cycle 2 and so on.

    Your plan may differ as it is individual to you but I hope that gives you a rough idea of what may happen.

    One reason I am telling you this is because you mention you work in a school. I am the HR for a large secondary school and would like to reassure you that you should be given paid, authorised leave for all medical appointments, treatments/recovery and be entitled to contractual sick pay as well as statutory sick pay. You cannot be discriminiated against for having cancer and given the ongoing pandemic, it would be a good idea to work from home, if your role allows it. I am very lucky in that my role can be home based and I have managed to work so far. My chemo takes 6+ hours per session so I simply do not work on chemo days. I could work during chemo day at the moment, but choose to use that day to focus on just me so I can beat this. Your health and wellbeing is the number 1 priority. My treatnent happens to be on a Friday so I have the weekend to rest as much as I can (whilst also being a single mum 24/7 to a gorgeous 10yr old - my motivation to beat this).

    Speak to your Head/Principal about your diagnosis and ask for reasonable adjustments for the duration of all of your treatment and recovery. You are legally entitled to time off and to reasonable adjustments to allow you to continue working. If you have a school based HR, speak to them or the Trust HR if you are part of a MAT. They should be supportive. I certainly hope they will be.

    I'll stop waffling on now!

    Best of luck with your treatment. You can do this. Stay as positive as you can. Chemo has not been as bad as I thought it may be (and I have a pre-existing rare respiratory condition) but everyone is different. It is a necessary evil so I choose to embrace it and see it as a positive. It is shrinking the cancer and is one step closer to having the unwanted squatter cut out of me. Bring it on!

    By the way, I am using the cold cap as my son is so attached to my hair - he has played with it as a source of comfort since the day he was born. I've had my almost waist length hair chopped off into a very short style to make the possible hairloss easier for him to cope with as the cold cap may not work. Touch wood, three sessions in and I still have hair! They said given the strength, type and frequency of chemo I am having, my hair would likely fall out after the first treatment. Seems to be working well so far. If it stops working, I will grab the clippers! If it's something you want more info on, let me know. Happy to share.

    Be kind to yourself and rest when you need to. On that note, I am off to bed xx

  • Hi Frankie0109,

    Hope you don't mind me jumping in on your post. I was diagnosed the same day as you. Grade 3, Stage 3a TNBC with all my right sided lymph nodes affected up.to my collar bone. My breast tumour is 14cm.

    I started weekly chemo on 31/12/21 and should finish end of May. Like you, time is of the essence and I am more than happy for things to move quickly. I finished Cycle 1 today. So happy about that!

    So sorry to hear about your misdiagnosis earlier in the year. At least they are on the case now.

    Would be lovely to keep in touch, if you would like to, and see how you are going as our journeys sound similar. Best of luck to you xx

  • Hi Lizzy,

    I have also been lurking in the background since my diagnosis on 3rd December 2021. I have Grade 3, Stage 3a with a 14cm tumour and all lymph nodes affected on the right up to my collar bone. Do you mind me asking what size your tumour was?

    I am having chemo, full mastectomy then radiotherapy. Also awaiting genetic testing results.

    I am so pleased to hear the chemo has worked for you. That is such positive news and must be a huge relief. Best of luck with the next steps. You can do this!

    So nice to hear good news about TNBC. As you say, everything online is utterly soul destroying and outdated xx

  • Hi KMama,

    Our journey/treatment plans are pretty much the same from the sounds of things. I’ll be finishing chemo around the end of may also. I don’t know if anything will change along the way depending on scans. I guess the oncologist will advise me of this when I see her next Friday. 

    I’m having a picc line put in next week. The cannula is not working for me at all. I’ve been feeling fine with the chemo so far which has really caught me by surprise. I struggle to sleep the night after treatment though thanks to those pesky anti sickness steroid tablets. Lack of sleep brought me here though! 

    Im so happy the cold cap is working for you so far. I also had my hair cut to a short bob in case it doesn’t work. I had my 3rd treatment on Thursday and I haven’t noticed any thinning as of yet so fingers crossed for us!
     
    What advice can you give me for managing with the picc line? I know nothing.

    kelly x

  • Thank you for sharing your story Lizzy! You’ve come a long way then already and are doing fab! Yeah everything on Google is so outdated. I’ll let you know how my op goes next week! x