Hi there, I’m new to this site and to be honest very scared. I had surgery a week ago to have a cancer removed (lumpectomy). Results are in. Clear margins and clear nodes (that’s the good news) Grade 3 Stage 1 so caught an aggressive cancer early but I’m also triple negative. For the first time since my diagnosis my doctor used the word chemo and it scares me more than the initial diagnosis. Everything I read about triple negative is scary. Everything I read about Chemo is scary. It still needs to be discussed wether chemo will be beneficial for me. Has anyone been diagnosed with triple negative and not required Chemo?

Hi there @Jezabel . I sent this message to another lady that asked me about my double. I also had TNBC may 2016 aged 43 stage 2a grade 3 no lymph nodes involved all scans clear 8 rounds of dose dense chemo. (4 rounds of AC and 4 of paclitaxol 2 weeks apart). Negative for the gene and no family history Please remember this was my decision and the right one for me but may not be what you want or may not be right for you ok. Like @AllyJay i wanted piece of mind and I chose to have my first mastectomy for the following reasons -I had a 3cm tumor left boob and only B cup boobs and because of where it was and I was going to lose my nipple anyways I just did it. That had always been my lumpy boob and I was sick of always stressing about it and I also didn’t want to have chemo as well as rads. Less treatment the better I thought. I had the second one off 6 months later as my guts told me too its that simple I had a referal done through the public system but the wait was going to be at least a year or even two at the Royal brisbane so I said fuck that I wanted to get it done and get on with my life its “not recommended” to have the healthy boob removed and I said i dont care I want it off. I have no regrets at all about my decision love whatsoever. I’m a nurse and I wanted to reduce my risk as much as possible. That’s it. But remember many women keep their boobs for various reasons which is totally fine and I totallly respect that it’s just not what I wanted to do. So I went in as a private patient in the public system in qld I paid the overnight bed fee ($350) up front and didn’t get the rest of the bill til around 8 weeks later and all I had to pay was the gap fee so it was only a few hundred bucks out of pocket. I was told I didn’t need my ovaries out only if I was positive for the gene which I wasn’t. I’ve had a hysterectomy in the past but kept my ovaries but they assured me it wasn’t necessary as I was triple neg and not hormone receptive.The only regret I have sometimes or and sometimes not for me is the fact I didn’t have the immediate recon. I’ll be waiting at least another 12 months for that and that’s just for the first procedure the changeover will take at least another 12 to 18 months after that. At the time a new set of tits was the last thing on my mind. Had I known the wait would br so long I may have done it. Who knows. Sometimes I don’t know if I can be bothered with the surgery anymore, time off work etc then sometimes I want it done! Liaten to your surgeon but trust your guts too and do what’s best for you that’s it. Hope this helps. Margie. Xxx

hi there @Kellee so glad you got through dose 1 ok, so far so good, now 5 to go, just count them down, ask for some emla cream for your next cannula it will numb your hand and help heaps with the discomfort, the hospital gave me the patches to put on my portacath prior to being hooked up also, you could also ask if your gp has some you can use or you can get it from the chemist but it can be expensive, the hospital will give you the patches which is heaps easy to apply and you just put them on 30 - 45 minutes prior to them putting in the cannula and make sure you drink plenty of water prior to pump up those pesky veins. Get your gp to check your boob love if it hasnt settled down, and NO ONE is a whinger or complainer on here woman, you arent feeling or saying anything none of us havent felt or said already love big hugs. margie xx

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.

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.

Hi there @Kellee. I was diagnosed may 2016 aged 43 with stage 2a grade 3 TNBC in my left boob. My lymph nodes and scans were all clear. I qualified for the gene test as I was under 50 and had no family history of any breast cancer. My treatment was slightly different from @volunty. I had what’s called dose dense chemo - that means I had 4 rounds of AC chemo 2 weeks apart followed by 4 rounds of paclitaxol two weeks apart. Chemo was shitty at times but doable. I was working as a nurse so took the time off work as it was peak winter when I and I didn’t want to delay any treatment by getting crook with some bug. it was also discussed early on whether to have the chemo or not but it also significantly reduced my risk of recurrence so it was a no brainer for me. TNBC is a less common type of breast cancer but responds really well to treatment. I had my mastectomy prior to chemo so the cancer itself was already gone. The chemo was done to mop up any strays that may of been lurking. I chose to have a mastectomy, I was given the option to keep the boob have chemo ands rads or have the mastectomy and just have chemo and that’s what I did as I felt the less treatment I needed the better and also because I live brisbane Northside and getting to the Royal Brisbane daily was a logistical nightmare. I then then decided 6 months later to take the right boob off as a prophylaxis measure as my guts told me too. This was the right decision for me and one that I don’t regret at all. I also didn’t want the ongoing “scanxiety” as I’ve always had lumpy cysty boobs and I would always be stressing about it. Please keep in mind this was the best decision for me but may not be the right decision for you. Like @volunty she has kept her other boob with no issues. I am on the huge qld health wait list for recon now, had I known it was so long I may have opted for an immediate recon. I’ve been waiting 2 years and I’m so used to not having boobs I wonder if I’ll ever actually do it! so chat to your team and discuss what your options are and then you can do what’s best for you. You may not even have to go down that path. My best advice is to keep an open mind, try not to google anything and listen to your team so you can decide for yourself what you want to do. But also trust your guts. It is doable, you do come out the other side, being bald isn’t that bad and you will soon find out who your true friends are. I had ones I’ve had for 30 years pretty much ignore me and ones I didn’t expect to step up who did. Delegate where needed, take help and support of any kind if it’s offered, Believe me people don’t offer if they don’t want to. And if you ever need to chat please feel free to PM me anytime and I’m happy to give you my number. In the mean time try and take each day as it comes and don’t think too far ahead. Once you have a plan life is easier and you can work your life around it then. And remember there are no stupid questions on this forum, ask any of us anytime anything and there is always someone to help. Biggest hug. Margie xxx

Triple Negative | Online Network

LMK74
Member
7 years ago
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.
Sister
Member
7 years ago
@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.
Afraser
Member
7 years ago
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.
smokie08
Member
7 years ago
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
Paulamarie
Member
7 years ago
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.
Kellee
Member
7 years ago
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
volunty
Member
7 years ago
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.
Kellee
Member
7 years ago
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.
volunty
Member
7 years ago
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.
Kellee
Member
7 years ago
@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 :(