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 | BCNA Online Network

120 Replies

kmakm
Member
7 years ago
@Kellee We did thank you!
Kellee
Member
7 years ago
Glad to hear all is well, have fun!!! @kmakm
kmakm
Member
7 years ago
Thanks @Kellee, I'm good. Actually having a few days off and am in Sydney exploring while my husband's at work (he's working in Sydney a lot at the moment and has a flat provided by work as it's cheaper than a hotel) . My sister has the kids. Last night someone was carrying on like a pork chop in the middle of the night where I'm staying. Woke me up and I couldn't get back to sleep. Very wakeful. On the train going to meet @"Kiwi Angel" now. Met @Eastmum a couple of days ago. This forum rocks!
Sister
Member
7 years ago
You've been through the wars, @Kellee. I would strongly suggest that you consider getting a port. They're not fun but they save a lot of anxiety and problems.
Kellee
Member
7 years ago
@kmakm I’m thinking of smothering my head with sorbelene cream. It’s not sore, just itchy. Maybe yesterday’s heat rash flared my eczema. If it doesn’t work I’ll go to the GP.
You look like you’ve been up all morning, everything okay?
kmakm
Member
7 years ago
I'm no expert @Kellee, and we're all different, but my head was sore for quite a long time before my hair started falling out. Could you get your GP to have a look?
Kellee
Member
7 years ago
Thanks @kmakm Could hair loss occur so soon after chemo? Xx
kmakm
Member
7 years ago
My scalp was sore, itchy and tender as a precursor to my hair falling out. Once the hair was gone it all stopped. K xox
Kellee
Member
7 years ago
Hi @onemargie guess who’s wide awake, I think the nanny nap through the day hasn’t helped. I will definitely ask about the gel. I’m not sure if I mentioned this earlier but through all my scans and treatments I tell the medical staff of my phobia of cannulas. I’m always told I have good veins, yet the cannula always gives me grief the whole time it’s in. I have a history of bad experiences. When I was having my bone scan I freaked when I realised I was having the cannula. He told me not to worry as the ones they used were a lot finer than what others were using. Guess what, no pain. I walked out feeling confident I could do this, but the next 2 cannulas, different scans and departments, were once again painful. When it came to chemo day the nurse decided to go through the vein in the top of my hand. Instant anxiety, I actually thought I was going to faint. When I had surgery the anesthesiest tried my hand and it was so painful he had to stop and find somewhere else. I keep going over my fear with everyone but I think they think it’s all brought on by anxiety. My hand started to get a red line, it hurt when it was taken out and my vein is all bruised. I used to think it was me too. I’m starting to wonder if the cannula is too big for my veins given the time the smaller one was used and the result was more comfortable. I’m not sure if I can get over this, it’s now consuming my brain. It’s the first thing I think of upon waking.
Change of topic, if anyone can help. I have eczema, before chemo, and my first chemo was 4 days ago. I’ve woken up with a very itchy scalp. I did change shampoo, I’m using Sulkin, I think that’s right, the one with out additives and chemicals and I’m very itchy. When I went to hospital yesterday with the red rash on my face, neck and boobs my mum noticed my scalp was red ( I was already red before shampooing). Did anyone else experience this or could it be my eczema. Any advice on helping the itch would be appreciated xxx
mum2jj
Member
7 years ago
Glad you went and got checked out. You are not a complainer. Sending you hugs.
Paula x

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