Triple Negative
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Kellee
Member Posts: 73 ✭
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?
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Comments
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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.3
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@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.2 -
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.3
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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 x3
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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.2
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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.6
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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.1
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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.2
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@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
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Hi Kellee, I had testing to see if chemo was warranted. On the surface it wasn't, but my bad family history an responsibilities warranted a closer look. I was very lucky that my father paid for the test, known as an oncotype test. It cost $2998 I think. They test your tumour sample to see if chemo would have a curative effect if some cells had escaped and were looking for somewhere else to do their dirty work. The result came back as a clear yes (it's expressed as a number) so I gathered up my courage and did it. After some choice swearwords, a panic attacl and a flood of tears!
Some research has come out recently about the usefulness of the oncotype test. Take your group of breast cancer patients. There'll be a number who clearly need chemo, and a number that clearly don't. And in between there's a group where it is unclear if chemo would help or not. And because we don't know, we err on the side of caution and give the chemo to that entire group. Well the big study has tested a large population of that group in the middle and found 70% of them wouldn't need chemo at all as it would have no benefit. This provides tremendous justification for the government to subsidise these tests because of the enormous amounts of money they'd save, not to mention the suffering alleviated and the ongoing issues such as peripheral neuropathy that would be avoided. It wpuld save the government SO much money! Fingers crossed something gets done about it sooner rather than later. K xox
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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
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Thank you @kmakm @onemargie I’ve finally been given an appointment date to see an oncologist, September 12th. I have since spoken to the nurses from the McGrath Foundation, who will be with me through my journey if chemo is required, and say it’s likely I will have chemo. I’ve decided to live in the mind set that it’s going to happen rather than hope that it’s not. That way there won’t be any more shocks on the day, I’ve had too many of those lately lol.
Instead of googling or the scary details of chemo, I have a basic idea thanks to the nurses, I’ve been googling wigs, head wear, eyebrows and make up. Just trying to get my mind set in a good place.
I know what you mean by knowing who your friends are @onemargie I have lived with mental illness all my adult life, due to mental abuse growing up, when acrophobia set in and I couldn’t bring myself to travel any further then 15 km from my home I wasn’t any fun any more. I was good for baby sitting friends kids and taking them to school while they worked, but once they all grew up my friends disappeared. Thank goodness I have expanded my horizons, considering the hospital is 60km away. I still have the occasional panic attacks and my anxiety has been pretty extreme the last few weeks, but I haven’t let it stop me. Through tears and melt downs I’ve soldiered on.....so far.
You ladies may be able to help me. It’s been 2 weeks since surgery and my boob has become so sensitive it’s painful, especially my nipple. It’s that bad that the water from the shower hurts. Did you experience this and is there anything you can do or take to ease the pain and discomfort. Thank you again xxx0 -
Hi Kellee love, sounds like you've got your head on straight about the chemo. It sucks, but it's for a good reason, and they've got pretty good drugs for most of the side effects. You just have to roll with the fatigue, do all the mouth care recommended and exercise as best as you can manage through it all (helps reduce the severity of the side effects). If you do have chemo, find out what it's called (it's usually a series of inititals eg AC-T or FEC-D) and then you can get some help from the forum that's specific to your regime.
If you do have chemo you must find out if you can do a Look Good Feel Better workshop. They are pretty fun and you get lots of free make-up to take home.
Well done on pushing your agoraphobia boundaries. It's amazing that you're doing so well at this challenging time. Panic attacks and anxiety suck. Mine's been on the rise for the last 24 hours, not sure why.
My boob was briefly very sensitive and tender as the numbness wore off after my WLE. Why don't you give your breast care nurse a call and check it out with her? Hopefully she can set your mind at rest.
Stay in touch here, and let us know how you get on. Deep breaths, Kate xox1 -
Thank you Kate, @kmakm I have an appointment with my GP on Tuesday, if it hasn’t subsided I’ll ask the doctor.
I agree, panic attacks and anxiety does suck and they don’t care wether things are going well or not. They sometimes just creep up on you. I can tell you where every toilet is in a 60 km radius road trip from my home lol
I did read about the workshop. It amazes me how much support is available.
I will definitely keep in touch. This forum has been very calming xxx0
