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

mum2jj
Member
7 years ago
@Kellee, this disease sucks. Kate has given you good advice. Hang in there til Monday.
Huge hugs
Paula xxx
kmakm
Member
7 years ago
Ah @Kellee that sucks. This is such a prick of a disease.

Try as best as you can to stay in the moment and not cross any bridges until you get to them. Are you with good support people this weekend?

You are very stressed. Most people carry their stress in their upper backs. Could it be you're doing that?
Hang in there lovey. Take some deep breaths and plan to do something good tomorrow and Sunday. Kate xox
Kellee
Member
7 years ago
Hi @mum2jj @AMM5 thank you for sharing your experiences. Very appreciated. I thought I was travelling okay until this afternoon. My oncologist sent me for a CT scan and various heart and blood tests this week. I received a call late this afternoon to say my CT scan showed 3 nodules in my lungs. I’m booked for a PET scan on Monday. Major emotional setback. I’m really worried as I’ve been experiencing upper back pain. After my bone scan came back clear I figured my pains were muscular. So you can see where my brains going with this. My anxiety levels have truely peeked 😢
Kellee
Member
7 years ago
Hi @Mantis how did your appointment go?
kmakm
Member
8 years ago
No worries @Mantis. Have a good weekend. B)
Mantis
Member
8 years ago
Thanks for sharing this post for me @kmakm :)

@Kellee it looks like we're both in a very similar place. I had a lumpectomy two weeks ago and also have an oncologist appointment next week, mine's on the 11th. Chemo has been on the table for me since my initial GP diagnosis and my surgeon confirmed it will be necessary. I'm ok (well as ok as you can be) with it. My mum went through chemo for bowel cancer when I was in my 30s and I know it will be rough but I understand the drugs to help with the side effects have improved a lot over the years. I think anything I can do to stop the little fecker coming back will be worth it!

I'm sure we'll be in touch and able to help each other through this xx
kmakm
Member
8 years ago
@Mantis You might like to read this very recent thread. Hang in there darl, big hug. K xox
mum2jj
Member
8 years ago
Hi @Kellee,
sorry I missed this post. I was diagnosed with triple neg 9 years ago (yesterday) see recent post.
I had a 3cm aggressive tumor, and one positive lymph node. I went on and had a lumpectomy, chemo and radiation. Unfortunately I did have a recurrence 18mths later about 2cm from original lump. It was also 3cm. I am not telling you to scare you, but to let you know that even with this shitty diagnosis and treatment, there is hope, even after a recurrence. Sadly (at the time) I went on and had a mastectomy and then immediately more chemo. You know at the time, I was so scared the cancer would be elsewhere in my body, that when I found out it wasn’t I honestly didn’t worry too much about the mastectomy or even the chemo. I just wanted it out and treated...FAST.
No chemo wasn’t a barrel of laughs and having to do it twice in such a short interval was not ideal, but I did it, and here I am 9 years out from 1st diagnosis and 7 1/2 years out from second and I am here to tell the story.
sending you a huge virtual hug.
Paula xxx
kmakm
Member
8 years ago
Sorry @Kellee. I was 51 when diagnosed and having treatment. Wasn't menopausal before, am now...
AMM5
Member
8 years ago
Hi Kellee
I was diagnosed at 51 in May 2015 with a 4.5cm triple neg tumour. No lymph nodes effected though I had 3 removed. I had an immediate skin sparing mastectomy with an expander (so I could have breast reconstruction later). I had FEC-D - 3 rounds of FEC every 3 weeks and then 3 rounds of docetaxol every 3 weeks. This was followed by 25 rounds of radio as the tumour was in the chest wall and muscle. 15 months later I had the other breast removed and DIEP reconstruction (Tummy tissue). After nipple recon and tattoos 6 months or so iI then had my remaining ovary removed. I had previously had a hysterectomy and left ovary removed for a benign cyst. Its been a tough ride but Im please to say Im doing very well 3 or so years later.
Look at it as, chemo stopping any rogue cells in your body and radio and mopping up any in the breast/chest area.
Try and look at your lifestyle, diet and exercise as being as healthy as you can be can only help. Please dont google or look at statistics as they can be out of date. Also whenever I seem to meet a group of women there is also another TN one.
The onco text wasnt available in australia in 2015 but my attitude is that i would have had chemo anyway as this is the time to stop any your cells dividing/spreading.
Chemo is tough but doable. I was also terrified but it wasnt as bad as I imagined. The nurses are very good with needles. Its what they do all day remember.
Annmaree xx

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