Triple Negative Breast Cancer support and advice
Can-bra
Member Posts: 2
Hi,
I am a 39-year-old mother of a 3 year old, the sole breadwinner in our family, who was diagnosed with breast cancer in September. I had a lumpectomy in early October, which removed 2 x Grade 3 cancerous tumours (one large and one small). I'm currently recovering from surgery.
Post-surgery results have revealed that I have TNBC. In positive news, the margins were clear and so was my sentinel lymph node. But in less positive news, my Ki67 rate is 60%, which I understand means my cancer is very aggressive. I also need to get genetic testing shortly for the dreaded gene mutation. I'm still awaiting advice on my chemo regimen, but I know they want to start it as soon as I have cleared one month post-surgery.
I had hoped to tackle this with my usual style, grace, and gusto - preferably with just one surgery (like my mum had a few years ago), a bit of radiotherapy, and maybe some medication thrown in for fun. In fact, I was looking forward celebrating a cancer-free Christmas. But obviously, I'm now in this for the long haul. And the one thing I had hoped to avoid - chemo - is now the one thing that seems absolutely necessary.
I've been struggling in the last couple of days to keep hold of a positive outlook or find my sense of humour, which until now has always been a reliable coping mechanism whenever life has thrown me a curveball or two. It seems positive thinking is not doing me much good either, especially when brutal reality sends along its next blow.
The added worry I have in the back of my mind is that I was selected to perform a special project role at work for the past year in a different location. After a year, we've finally settled here - unpacked the house, found childcare, support networks, a routine - and the extended treatment plan may mean my workplace decides that its in "my" best interests for them to relocate us back to a more streamlined position elsewhere. It's enough to come to terms with what is happening medically right now, without throwing in a move, to a place where we have no childcare, less support, living out of suitcases or unpacking boxes, on a reduced salary, where we would have to find new doctors, while tackling all the big cancer-related issues. It's too much. I am really hoping I can sell it to the company that this is manageable and treatable where I am, that if we can ride out the next six months or so, I am not a complete write-off - even if it involves a few additional costs, including that I will be off-line for a little bit. This way, at least my family life will remain stable and I won't face unnecessary delays or distractions involved with an unwanted relocation, chewing up valuable time and energy, that I could be using to fight the cancer.
So I would really appreciate advice or contact from anyone who has had TBNC and can provide any advice on the way ahead.
I've tried to find the TBNC Support Group on here, but the link from previous threads doesn't seem to be working.
I'm particularly keen to hear from anyone who has had TBNC and has managed to keep working for at least part of the time during chemo. Do you have any tips? Are the side effects likely to be worse at the beginning or towards the end of treatment?
Friends and family from various places have offered to come and visit for short stints to help out. Do you think this would be useful or is there little they can do?
Any tips also on undergoing chemotherapy with a spirited 3 year old in the house (who is very much a Mummy's girl) would also be appreciated.
I know I have lots of questions - my head is still spinning from all this - but thanks in advance for your help.
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Comments
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Hi Can-bra, unfortunately I don't have any information to help you with re TNBC but I just wanted to welcome you and say how sorry I am that you find yourself on this site. I didn't require chemo or radiation but many of the wonderful ladies in this forum will have experienced similar diagnosis and treatment as you and will be happy to share their experiences. This is definitely one time when you need to put yourself first and not be afraid to ask for help or accept it when offered. Wishing you all the best with your treatment plan. We have all had different types of breast cancer, surgery and treatment but we have all shared the same feelings of disbelief and dread and discovered we have boundless strength. We are all here for you, Jane x1
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I have a friend who is undergoing ACT or TAC chemo for TNBC. During the week of AC she was unable to work but could the next 2. She is yet to start taxol. I myself wasn't able to work through my treatment of ACT-H but I also didn't have a driving need to. I do hope all goes well. Everyone is different. You will become very tired on this...I urge you...if you have a wonderful friend or relative who can give you support., or even stay with you for 6 months ..grab it....don't be too proud. Take care. Kath x1
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Hi there,
I have had triple negative twice (18 months apart). First time like you I had a lumpectomy, chemo and rads. I tried having chemo on the Friday and going back to work on the Monday, but I just couldn't do it, mentally as well as physically. I then had the week after chemo off and was much better doing that. I did have ever only work part-time. I think everyone is different and with good support you may be ok. It all depends on how you react to chemo. The second time around I had to do chemo again and did the same thing, taking the week off after chemo. I really needed to work, it helped me to cope believe it or not.
Good luck and hugs to you.
Paula xx1 -
I didn't have TNBC but I did work through chemo -3 months of A/C and 3 months of Taxol ( herceptin for 12 months). I didn't have nausea or fatigue (did have a few other side effects). I took a day off for A/C once every three weeks and half a day for Taxol weekly. But it seems almost impossible to know how you will go until you start. My reactions to chemo treatments remained much the same throughout but I did develop some unexpected side effects that required medication but did not affect me day to
day. Some side effects of Taxol can be irritating - I lost my tastebuds and had a rather bloody nose periodically.
I agree with mum2jj - working was a wonderful way of keeping cancer in some sort of perspective. But as reactions vary wildly, it's not possible for everyone and some people prefer to spend time on other things. Your work project sounds really important to you and doing it will be a very positive thing which is good. Attitude helps but it's not always enough.
With a little one who needs your time too, take any help you can!
Best wishes.1 -
hi @Can-bra
I had tnbc in 2012 .... I got very sick but not everyone does.... reading between the lines ... Can you do some of your work from home ..... ? just a thought.... Take any offers of help be it family or friends coming and staying , learn to let go of the things that are not as important .... if you have good support with someone staying and they are doing the everyday things like cooking cleaning etc .... you can concentrate on things like resting and if you are up to it .. working then it will take a huge load off for you.... I have to say I am cancer free now 4 years since diagnosis....
hugs and energy to work thru this time.
we are here and happy for you to come and ask questions and vent or cry and laugh ... YES we do still laugh about things here...
Alice
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Hi Can-bra, Welcome to the site!! (Love the name
). I don't have any suggestions or comments regarding your chemo. I do however think that you would have a case work wise on compassionate grounds to remain where you are as the moving alternative would simply create totally unnecessary trauma. As you have been selected for your special project you are obviously a valued member of your workplace - do you have a good boss? Or someone in Hr who you can run these worries by and try and get some clarification/answers or even a work plan in place to allay your fears. Hopefully your workplace is progressive in their WHS approach and would be approachable with a modified work timetable to adapt to your treatment needs and treatment reactions. Definitely get the tag team assistance going for you and your daughter and also involve your daughter in helping you - nothing like being mummy's big helper. Wishing you all the best, let us know how your getting on. Xx Cath 2 -
Hi Can-bra
I was diagnosed with TNBC in April 2016 and currently doing taxol treatment, my AC treatment was every 3 weeks, originally was suppose to be every 2 weeks this was due to my recovery being so slow. I found the AC very hard and there was no way I could of worked that period, the fatigue was the hardest part for me to over come. The taxol treatment is a lot milder and I have found I have more energy and stamina, it all depends on how your body responds to treatment, you might be able to work, its not going to be easy but not out of the question just go easy on yourself and listen to your body. I hope you have someone who will be a good support for you as you will need it. It's a long journey, you will have good days and bad days but we are strong women, we keep our chin up and we keep going, take care Sophie
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Hi Can-bra, I received an almost identical diagnosis to yourself August 2015. So sorry to hear your news. It really sends you into a state of panic. I'm older, 66 and was very fit when diagnosised. I'm retired and have a wonderful husband to support me also a beautiful family. I got through the 6 months of chemo ok but could rest when I wanted to. My biggest problem was getting shingles during chemo and I it really knocked me. Maybe shingles is not any issue at your age but I believe people preparing to have chemo should be immunised prior to starting chemo.
My research reads that TNBC reacts very successively to chemo, so that is good news.
You seem to have so much to consider but it's so important to put yourself first. I understand your work is important, I was a career women too, but your health is everything, especially with a beautiful little 3 year old. Agree with previous comment accept all the help you can get, people want to help so let me but be assertive enough to stop the help when you need to.
I also had 20 rounds of Radiothreaphy which went well. My main problems have been once everything finished, tummy problems. And fatigue! Try and do when possible a walk every day, I have now returned to a light exercise program and continue to walk as much as possible. One day at time time is important to remember, although at present with so much going on with you this probably seems hard. Also everyone is different to how they react to chemo.
biggest suggests is to use this site and put yourself number one.
Take care.
Anne-Marie2 -
Hi Can-bra
I was diagnosed with TNBC in July. Like you I thought it just be lumpectomy and then radiotherapy. But due to grade of tumour now doing AC chemo every 3 weeks then taxol weekly then rads. I took the decision not to work during treatment but to concentrate on my recovery, fitness both mental and physical and caring for family. As others have said you need to listen to your body and put yourself first. I am glad I made this decision as the treatment is knocking me around a bit especially the first 7-10 days after dose- fatigue mainly.
Don't hesitate to ask for help from friends/family- as independent strong women we sometimes forget to do this! And it is certainly a long journey so grab all the support you can!
Take some time to breathe and take one day at a time. I would hope that your work would allow you to stay where you are for the duration of your treatment and be understanding of your situation. I spoke with my HR department and boss and luckily they were understanding of my decision to take leave of absence.
Hopefully your work will be able to assist you with whatever decision you make.
There is endless support on this site with lots of information from those who have had to join this club.
Take care xx
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Hi Can-bra, I am TNBC too, and treatment was surgery, chemo and radiation. I wasn't sick - the pre-chemo meds took care of that - but the fatigue you feel is cumulative, and even though you are very positive, it can catch up. I agree with Socoda about talking to your boss, as you are obviously well-respected at work. It would be hard to re-locate just now as you need all your resources to fight this, and need a network in place for child care etc. Check with your local Cancer Council for what services are available eg cleaning volunteers/transport to appointments - it all helps. Work seems to vary with the type of chemo - some are harder to take than others. I had Taxol/Carboplatin and only suffered from some chemo-brain towards the end of treatment. Hopefully your HR dept can lighten the load a little whilst you adapt to treatment. Having said that, I am now over 4.5 years past surgery, so it does all come to an end eventually, but it is a real fight and you don't need re-location to add to it all! I hope you can sort it out with your employers. Stay in touch. Big hug. x Michelle1
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Hi @Can-bra welcome to the online network. As you have already seen the members are just incredible and are here to help you as much as they can. In regards to your questions about the TBNC support group, this group was on our old platform. The only groups we currently have on this new platform are all listed under "Groups". It seems that some old conversations are starting to appear that include some old links, sorry for the confusion.
You will be able to find information under our "tag" specific to Triple Negative breast cancer.
Please let me know if you need any help.
Ann-Marie
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Hi, just thought I'd add some things I found were helpful - I have another disability as well so really couldn't have worked through treatment. I have 2 young kids and my husband works away a lot. I did get worse as time went on - it was cumulative - and they changed my chemo for the second half and I had bad reaction. I was always worse for week 1 then much better for week 2 and 3 - even though my bloods were not good and I was at risk for infection in week 2 and 3 I felt much better - so plan more rest time in week 1 and stay away from coughing kids and childcare centres in weeks 2 and 3). I ended up having to get family to come and stay for week 1 of the cycle for the from cycle 4 onwards. (I was alright on chemo day and the day after while still on the steroids - that's when everybody assumed I'd want someone to come with me to chemo but it was the 3 -4 days after that I found most difficult)
I used woolworths home delivery - I have set up a basic shop list that I can order every time - 3 clicks and it's done - with kids to look after I didn't have the time or energy to walk around the shop
I paid a cleaner to come in weekly - so at least kitchen and bathroom were hygienic
I was lucky that I had income protection insurance so my income didn't change too much and it helped pay for some much needed extras and I also had a small trauma/critical illness policy attached to my home loan (it paid about $10,000 for breast cancer regardless of if I was working) - might be worth checking if your super fund or home loan or credit card has that in there automatically - it really helped me lots
I cooked and froze meals in weeks 2 and 3 because there was no way I was well enough to cook in week 1 of the cycle and brought easy to prepare stuff and fresh fruit for week 1. used the slow cooker lots, with microwave rice and vegies
I contacted the local Family day care service and arranged to have emergency child care pre approved including overnight care in case of emergency - luckily the couple of occasions when I had really bad side effects and had to go into hospital I had family and friends available. But I did use the child care on a couple of occasions on the weekends for a block of 4-5 hrs just so I could know kids were happy and safe and I could catch up on sleep.
when my arm and hands played up (combination of effects from surgery and chemo) washing my girls hair became too hard so I just took them to the hairdresser once a week and paid to have them wash and brush the hair and plait it up for me
when I had issues with pain I was worried about driving and taking pain medications so I didn't take the medications - not a good idea - then a friend said why not use a taxi (I should have thought of that but when stressed and in pain you don't always think of stuff) - so then I kept pain under control better used medications earlier and it really helped
I got my nails painted once a week - with the taxol/ taxotere/carboplatin I was told if you use dark nail polish and stop the sunlight getting to the nail bed then you are less likely to damage the nails and have them come off the nail bed and with the peripheral neuorpathy I lost the co-ordination to paint them myself so just got someone else to do it
I now get a podiatrist to cut my toenails because of the peripheral neuropathy my fingers don't work well enough to cut the toenails safely
and don't forget to ask the breast care nurse for any info on support in your area
Good luck - hope this info helps and just take one day at a time and know that everyone is different and whatever you need to do to get through is ok - for me I gave myself a hard time about using childcare on the weekend - but really - it's better my kids have some extra childcare now and I look after myself properly so I am here for them for the next 30 + years - don't beat yourself up - be kind to yourself.
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Hi Can-Bra,
I am so pleased to have found your post. It seems we have a very similar - if not identical diagnosis and personal situation. I have also been searching for information and support - specifically success stories for TNBC, G3, KI67 = 60%.
I have found a closed Facebook group focused on support for young women diagnosed with breast cancer. It doesn't specifically target TNBC but I have already found the group to have a supportive aspect - just with individuals sharing personal stories and events. Let me know if you would like further info and I can send you the link.
I am 44 with 2 young girls. I was had by biopsy on the 12th Oct, confirmed on 13th Oct with TNBC, grade 3.
I had surgery the following day. Post surgery pathology confirmed TNBC, grade 3, KI67 of 60% and thankfully clear nodes and margin. I met with my oncologist on Tuesday where I was advised I will have a port inserted and start Chemo on 8th Nov then genetic testing on the 16th.
Like you, the timing for my work hasn't been great. I was due to start a new and exciting role on the 10th Oct having left my old company on the 7th Oct. Finally it felt like my life was heading in the right direction, a new home, a fabulous new job which was designed for me, beautiful family and good health. It was on the 8th when my world was turned upside down. My new company has been great with allowing me to immediately take time off for the surgery and recovery although I'm not sure how I can justify holding the role where I will need time off for treatment when I haven't had time to establish myself in the new role or organisation - or build up any leave options. I went into the office 1 week after the surgery - it has been a beautiful distraction. I am really hoping I can pull this off and work through as much of the chemo as possible. If I don't keep the role, I'm not sure how I can support my family with the mortgage, my children's school fees etc. I'm sure I will work something out, but at the moment my head is ready to explode with new information I am trying to absorb.
I know all treatment types are different and your treatment plan may be quite different - but I have been advised I will be going through 2 rounds of Chemo and then radiation treatment (or mastectomy - dependent on the outcome of genetic testing). My treatment plan is 4 treatments of AC at 2 weekly intervals then weekly treatment of TC(? - hard to read the oncologist's writing) - a total of 5 months of chemo treatment.
Sharing treatment side effects - and most importantly tips on overcoming them with someone in a similar situation would be great and I'm happy to connect with you and share mine if you like as I go through these next steps.
For now, my most important focus is on keeping my head positive in the face of such an unknown situation. Before the chemo starts I am taking one day at a time, enjoying my family and getting out and active to keep myself busy and most importantly for me - away from the internet (I have deliberately tried to avoid the internet searches - the general searching hasn't helped me at all). BCNA and sites advised by my surgeon are the only sites I now refer to - they deal with fact, geographically relevant information and people I can relate to.
Until 2 days ago, the thought of chemo petrified me - I couldn't mentally deal with the thought of putting a poison into my body and the thought of terrible side effects. That was until I caught up with a dear friend who has been through chemo for a different cancer. She told me to think of chemo not as a poison but as the drug that will save my life. Without it, the options are not great, but with it, the odds are in our favour. She changed her position to think of the side effects as ones that were necessary for the chemo to do its job. Stay focused on the good that the chemo is doing. Just this small tip alone has allowed me to move into a more positive position going into chemo.
There is some really great advice in information in the previous responses to your post. I hope you find the help and support you are looking for. Where your friends and family have offered to come and help you, try to accept what you need - it will be good for both parties. It's hard when loved one is sick - but when you're far away and unable to help it's even harder. They will be happy to see you and feel they can support you and most importantly, you will have the help you will need.
Take care,
Sharon x
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Great to hear from you Sharon! I have sent you a message!0
