Triple negative BC information needed

31st July I meant sorry 

Hi DDG1967

Sorry to hear that you have triple negative breast cancer.  Even though it's more aggressive than most other breast cancers it is treatable especially if caught early.  I was diagnosed with grade 3 triple negative with lymph node involvement nearly three years ago and after having chemo, surgery and radiotherapy I made a full recovery.  I'm still triple negative cancer free.

I'm glad to hear that you've given up on google as the information on there about triple negative is years out of date.  When I was first diagnosed my mother googled triple negative and what she read upset her pretty badly.  As a result she rang The Irish Cancer Society who told her that that the information she was reading was out of date and that triple negative was very treatable.  They keep coming up with new treatments regularly which leads to better outcomes for patients with triple negative.  There has been a number of new treatments even since I was diagnosed.  If you want information on triple negative rely on sites like this one and Breast Cancer Now.

You in all likely hood have 6 - 8 cycles of chemo, made up of about 3 - 4 cycles of either AC  EC and 4 of Taxol.  Treatment plans are tailored to an individual's type and grade of cancer.  You will also likely have radiotherapy to mop up any stray cancer cells that are not caught by chemo or surgery.  You will be given meds to help counteract any possible side effects you may have from chemo and you will also be given a couple of numbers to contact should you have any problems during chemo. One number will be your chemo ward and the other will be an emergency number in case you have any problems out of hours. While I won't say chemo is easy it is doable.

Make sure that you drink plenty of fluids while having chemo to help flush out the toxins from your body and try to get out for a walk everyday even if it's only a short one as it can help prevent side effects. 

Before you go to your chemo ward for treatment make up a rucksack with some things to keep yourself busy while undergoing treatment as treatment can take a couple of hours depending on what dose your chemo is.  What your chemo dose is depends on your height and weight and on any existing medical issues you may have.  You will also have a heart echo done before chemo starts to make sure that you don't have any heart issues.

Wishing you the best of luck with your surgery and treatment.

Best wishes

Daisy53

Thank you so much Daisy for your response and providing me so much information. I’m dressing chemo but you’ve survived to tell the tail and as you say it’s doable. I feel much more reassured now

Hi, I was diagnosed on 22nd June with Grade 3 invasive ductual breast cancer, oestrogen positive and HER 2 positive has gone into lymph nodes, took 10 days from biopsy for results, then had ct scan 3 days later, then 3 days after 1st oncology appointment  which they talked about my treatment then had bloods done and ecg, then the Saturday more bloods, then the Tuesday I had telephone appointment about what happens on treatment day, then hour later oncology appointment then half hour later picc line fitted, then Wednesday I had mri scan. Monday this week more bloods and then yesterday had my 1st chemo.

My treatment plan is ec-t chemotherapy so the ec part I have 1st for 3 cycles 3 weeks apart then I will have the t part which is docetaxel or paclitaxel for 3 cycles 3 weeks apart with phesgo injections as well and they will be every 3 weeks I think for 18 cycles, I will have surgery to remove anything remaining and the lymph nodes I think a lumpectomy and then radiotheraphy.

My 1st session went ok tried the cooling cap 1st 15 mins was a bit hard but got through it. I was there for total of nearly 4 hours because I done cooling cap. Then went home with 5 different meds including injections. Today I felt a bit nauseous but was fine after tablets kicked in temp has crept up about but so far stayed under so haven't had to call helpline. Next session is 2nd Aug.

Hope all goes well for you. Xx

Gosh you’ve had so much happening in such a short space of time. I do feel like I’m caught up in a whirlwind I can’t get out of and it’s spinning me out with info , appointments, changing treatments and emotions right now. I keep  thinking I got this!! Then have further information and I have another wobble for a few hours while I process it . I feel there is such a long journey ahead of me and it is going to last months and this scares me. I have no choice I just have to do what needs to be done to survive. I really hope you continue to have the strength and resilience to keep fighting this and know your never alone. One day you’ll be cancer free and a new chapter in your life will begin

I have metastatic TNBC, spread to my liver. It wasn’t, and still isn’t in my lymph nodes, it had travelled via my blood stream from an early stage tumour. I am not an oncologist but I read extensively and the following is what I understand from my readings and my own experience.

Chemo is almost always recommended for TNBC unless the tumour is very small or low grade. Most TNBC is high grade. If the tumour is greater than 2cms and / or they suspect it’s in your lymph nodes, you are likely to start with chemo, possibly also with immunotherapy, then have surgery afterwards otherwise it’s surgery followed by chemo. Chemo for TNBC in the UK is usually given in two halves, one half EC (epirubicin and cyclophosphamide) and the other half Paclitaxel with or without carboplatin. Not all TNBC cancers are the same, and whether they add immunotherapy will depend both on the grade and stage of your cancer, and on other things that will show up in testing. A form of immunotherapy called a PARP inhibitor might be added of you have the BRCA1 or 2 mutation, whereas a different form of immunotherapy called a checkpoint inhibitor might be used if your cancer has a protein that enables it to hide from the immune system. An example of a PARP inhibitor is olaparib whereas Pembrolizumab and atezolizumab are checkpoint inhibitors. 

My own journey has been surgery (wide area excision and sentinel lymph node biopsy), discovery of vascular invasion in the excised tumour, 4 rounds of EC, 12 weeks Paclitaxel, then radiotherapy. A CT scan for something else coincidentally found a secondary deposit in my liver just as the above was drawing to a conclusion. Otherwise I would at that stage have been released from treatment, in assumed remission. I then had what turned out to be an ineffective microwave ablation of the secondary tumour, and have subsequently started Pembrolizumab plus NAB-Paclitaxel.

As for prognosis, it’s very individual as it depends on your cancer, your response to treatment, your overall health. Whilst I know a lot about the range of outcomes of the people in the clinical trial that led to pembrolizumab being approved, I have not asked my oncologist for her view of myself. I don’t feel it would help to have a ‘use by’ date attached to me. I am trying to focus on living. Whilst realistically my outlook (with metastatic cancer) isn’t great, I currently feel well. When othe4vpeople ask me, I tell them to ask me again in 2 years. 

Wow, I cannot believe how much you’ve gone through . I am amazed it had spread and not through the lymph glands as expected , I didn’t even know that could happen any other way. I like the way your positivity and resilience shows through and keeps you so strong but I also know your likely to get your moments where you probably fear the worst as we all do! Knowing others personal journeys and the strength shown during times they can easily break a persons spirit  helps me to also remain strong as if your strength is shared through sharing. I don’t know enough about my cancer stage yet as still undergoing investigations and it’s very scary not knowing to be honest. All I know is that I’m not alone and we are all fighting together. Massive hug for you and I applaud you for your outlook to your current situation. I agree, I wouldn’t want my prognosis either as it can define the future hopes and dreams. 

Thanks. I wish you all the best on your journey. It definitely helps to approach it from the point of view of living your life / enjoying what you can, rather than thinking of yourself as someone who is ill. 

I started a blog following my surgery so you are welcome to read my full journey. Don’t let it put you off, I think I was very unlucky to get early vascular spread. community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

It has been a whirlwind, don't know what stage cancer is at, consultation did say he has looked at scan and doesn't think it spread but awaiting official results, not sure what scan he had looked at, as at the point only had mammogram and ultrasound and ct scan which I assume may have seen but only had it 3 days before, so will hopefully know that when i have a phone consultation on the 1st day before my 2nd cycle.

The not knowing can be the worst part I find. How are you feeling emotionally? In one sense it’s really good that they work so quickly due to the urgency of the situation  on the other hand everything is happening so fast since diagnosis it’s difficult to process it and I feel I want to put the breaks on for a breather but know it’s essential for tests/ treatments to be done as soon as,  to stop the spread. I am amazed how calm everyone appears to be. I do feel I’m calm because I just haven’t had time to process the whole situation. Some days I get scared and have a wobbly but they don’t last long and I’m back to my chirpy self again as if nothings happening and it’s not real. Is this normal ? I’m guessing so as feel pretty normal lol