Triple Negative

@volunty I am going through the public system too so you have answered another question for me. My journey seems to be all about percentages lol. I wish I was that lucky with lotto. I’m struggling emotionally at the moment. Outwardly people think I’m so strong, inwardly I’m frightened. I thought having the operation behind me I would soon start my radiation, something I had excepted. Not once had I thought I’d need chemo, especially after being told I had clear  margins and nodes. It sets in motion a new set of questions and doubts and the waiting game begins again :(

Hi Kellee, I had no further testing prior to chemo, it was pretty standard treatment for my diagnosis so it's a decision based on the fact that statistics show that there is a % increase in long term remission/survival rates if you throw chemo at the cancer as well as clearing what you can via surgery (and rads).  Personally, it's not an easy decision as I found it hard suddenly to be thinking of my life in percentage rates, and to be perfectly honest I'm not even sure what my decision would be today even with a year of knowledge and experience under my belt.  That said, I feel so good to have it behind me and have good health return and glad that I've done what I could. I did my entire treatment via public health btw, excellent care and very few additional expenses.

Thank you, glad to read you are recovering well @volunty I can’t believe how this site has settled my emotions. ❤️ I’ve been told I don’t need further surgery so that’s a positive, is there any testing involved in deciding wether chemo therapy would be beneficial? I’m seeing a lot of expensive testing and wondering if this will apply to me. 

Hi @Kellee I was also diagnosed with triple negative (TNBC) a year ago. Lumpectomy followed by single mastectomy as the margins were clear but there were extensive spots of invasive DCIS lurking hence the mastectomy. Chemo was recommended and it's not an easy decision - I went ahead with it as there is just no way to identify which of us will not be affected again and which will benefit from further treatment. Chemo was 3 months of AC (3 weekly) and 12 weeks of Taxol. I took 6 months off work to do it and it's not pleasant but doable. No radiation as nodes were clear. This week is exactly one year since the diagnosis and the 12 month mammogram of the remaining breast and ultrasound are all clear. I feel well, been back working since May and my hair we now describe as 'deliberate' in style rather than tennis ball. Many of the women here will confirm that the start is a rollercoaster of shock, absorbing information, steep learning curve and decision making. It settles (rather fast!) into a treatment plan and what to do next on a very practical level. If you can you try not to worry about the universe of what ifs out there and rely on your treatment team for information (ask, ask, ask) and advice. This forum has seen it all and then some, I used it a lot as I moved through the various phases, fellow travellers all. Good luck.

Thank you everyone, it’s so good to read inspiring comments. @smokie08 I have a really bad needle phobia too. That and hair loss are my main concerns. I will definitely back off when it comes to Google. Thanks again everyone xxxx

Hi @Kellee I had triple negative cancer early stages. I did 3 months heavy taxol chemo this was done every 3 weeks then weekly for another 3 months. Then surgery and radiation. My cancer responded really well to the chemo and was basically gone by the time I did surgery lymph nodes where all clear as well. I did work while doing chemo and had the odd day off when I wasn't feeling well. I found work a good distraction. I did get sick but the doctors do give you medication to help with this. 

Hi @kellee I am also triple negative my treatment was a bit different to yours as had chemo first as gone to the lymph nodes  did 4 lots dose dense AC then 12week  paclitaxel  with carboplatin for 3 doses  it is hard but  I looked at it as killing any little suckers that may have escaped.  I was very nervous about starting chemo but had a magic pill  before each session which helped  as needle phobic and didn't get a pic until all the good veins went but everyone is different. Try not to Google stuff  I never have I don't think it helps.  Take care  x

Hi there, I am one of the "bouncers"! Not entirely, I did have some side effects but I lived a pretty normal life through chemo. I did lose my hair and chose to wear a wig, but no nausea, no fatigue, no chemo brain. I worked as usual, with a small amount of time out for treatments. Unfortunately there's no real way of knowing how you will react (chemo effects are real, not imagined, but vary immensely) until you start. Remember your own words, it may be proposed as beneficial for you. Knowing that really does help get you through. Best wishes.

@onemargie Can you help @kellee with info on this?

I haven't got TNBC but have just finished the chemo.  It's not a fun experience but you can get through it and do remember, that everyone is affected differently.  And there's different chemo regimens.  I couldn't have managed work during it, but apart from that it was mostly manageable - for me it was all about giving myself time and space to deal with the side effects.  Others are able to bounce off to work (well, maybe bounce is an exaggeration) for most of their treatment.  The worst time was the first treatment when I went for days without getting stronger medication because I was dopey enough to think I wouldn't be able to get it on the weekend.  Once that was sorted out, and I got a feel for the timeframe of the side effects, I was able to manage it more effectively.

Anyway, welcome kellee - you've come to the right place for support, information and the odd laugh - we all "get it" here.

Hi @Kellee, welcome but sorry you find yourself in this club. I can't help with triple neg as I was hormone positive. Chemo is not as bad as you think. It's doable but each person is different and so are side effects. Some people have minor side effects like myself while others will get more. You won't know til you have it. Rest assured there are many meds to control side effects that are very effective. It is scary at the beginning but you will find lots of support here.