So, i have breast cancer...
Hi there,
My name is Leila, I'm 34, mum to four kids (aged from 7 up to 15) and I have just been diagnosed on Friday 24/6/16 with Invasive Ductal cancer? It was quite a shock, thankfully it appears to have been picked up early, the mass is just 1.7cm. It all still seems quite surreal, logically I understand it all and could follow what my Surgeon was telling me, but it just seems so strange that its actually happening to me!
I had my body scan and bone scan today, that kind of made it feel a bit more real (apparently I have terrible veins 
so that kinda sucks). I'm off to see my surgeon again tomorrow and hopefully get some more info. I am on the Central Coast and going through the public system, so would love to hear any feedback from locals re waiting times, etc.
At this stage I have been told surgery then chemo, then radio, with details to be confirmed once pathology is back from my surgery. I think my biggest worry is planning for work, I work in reception/admin, and am on the front desk all day 4 days per week.
Can anyone tell me about when you are doing chemo, can you use the same toilet as the rest of the family? I have heard you cant, but we only have one toilet!!! Do I need to stay away from my kids if they get sick? Can you make other people sick?
Thanks in advance for any advice xx
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Welcome Leila and sorry for your diagnosis. it is a whirlwind start and so much to take in.
As to chemo., we are all different and some are able to continue work through chemo. Others like myself have not. Some have reduced hours and modified duties. It all depends on the type of chemo, if you need it and how it effects you during your cycle and how you can manage with the fatigue and being a Mum as well. You do not need a seperate loo...just a lid and flush twice. I also have some wipes for suspect seats...for myself or splashes from myself. You don't have to avoid people on chemo. Just sensible measures, good handwashing and bacterial wipes when out. They say most infections come from ourselves not others.....like your own gut.
I purchased some lovely natural coloured makeup which I wear most times when out and people always say how well I look. I have multiple hats as didn't like the wig much and coordinate them with my clothes. This time of year being cool nobody even realises I have no hair. So loosing hair and being a bit washed out can be concealed for work if need be.
Hope this helps and ask as much as you want. There are lots of people here to help. Make sure you are connected with a breast care nurse who will be a support person and can answer lots of questions regarding treatment.
Kath x
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Hi Leila. Welcome, but sorry you had to join us here. It's a scary time when you are first diagnosed. I remember having a lot of questions and being anxious. But 'surreal' sums up what I was feeling. I was in the private system and had a 4 week wait for surgery because the surgeon I choose was in high demand.
Like Kath said, you can use same toilet with chemo just flush twice with the lid down. It can be hard to be around sick kids during chemo you may want to wear a mask if they have a sore throat or cold and you will have to wash your hands a lot. You can't make others sick.
Since you have bad veins you may want to ask your doctor about having a portacath inserted. Chemo really damages your veins which can be a problem for some. A portacath goes under your skin in your chest and is used to deliver your chemo via IV. It means you can avoid using the veins in your arms for bloods and chemo. Another option is a PICC line in your arm. You get a lot of needles during chemo (some for blood, some for chemo, some for other drugs if you get sick) so it may be worth it. Other people get through fine without a port of a picc line.
Like Kath I couldn't work through chemo but I did work through radiation. Everyone is different.
Best of luck. Come on here and ask anything, any time.
Take care
Nadine
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Hi Leila, sorry to hear of your diagnosis but on this forum you know that everyone knows how you feel and can share their experiences too.
I was diagnosed 2 months ago, have had 3 surgeries and just yesterday had my second AC chemo. The other ladies who commented said all the other things (toilet, illness etc) but I have a few things to add. My 10yo son just had a nasty cold but I didn't get it thank goodness, I was careful but I still hugged him and kissed him on the forehead. He was great too and didn't leave his snotty tissues around for me to pick up! I washed my hands a lot too so maybe that all helped.
also re working, I was truly blessed and didn't feel sick at all after round 1. In the first week, I did nothing but lay around home waiting to feel sick but when that didn't happen, I contacted 2 of my bosses (I have 3 casual jobs) and went back, but they are only 1 or 2 days depending on the workload (sadly they tried to do the right thing and make my workload lighter but now there's not much to do!!).
I have a wig which looks great and natural, I wear it out but I'm still losing hair so it does get a bit itchy so I also wear hats, but as its winter they don't look out of place. If u have access to a cancer council office I highly recommend getting in touch about their wig library - I am in Brisbane and made an appointment and they gave me a wig, a fringe (which I also love) and 2 turbans for free, I just have to post the wigs back when I'm finished with them.
Take care and stay positive - you will get thru this!
All the best
Donna
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Sorry to hear you diagnosed. With a big family the three main things you may find hard or impossible at times is main meals (do up frozen ones or line up neighbours or family to drop meals in), washing and hanging out clothes (get the older kids to do it or stand on a box to reach the line like I did sometimes as the arm after surgery won't reach up for a while), and making up beds (get the kids to help you tuck in the sheets).
I was public hospital in coast of Qld and it was 3 weeks from seeing the surgeon to actual surgery (if you are having surgery first). I also needed a second op due to it spreading to the lymph nodes under my arm and that was another 3 week wait for surgery. Ask the surgeon if you can have a portacath put in your chest vein as it will make everything a whole lot easier on your poor veins.
Chemo if you require it is usually done in 3 week intervals. One day to give it and 3 weeks recovery. It may be best if you can take a week off work every 3 weeks. Do you have holidays you can stagger into one week off and 2 weeks on? At work stick to the normal duties and don't get creative. Your brain will get a bit fuzzy sometimes. To combat infection from kids at work, suck an antibacterial Strepsils a few times a day.
Well wishes for you on your treatment.
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Just so you know there are many different regime of chemo. I had 4 rounds of AC chemo 3 weeks apart. I am currently on taxol and herceptin. The taxol is weekly for 12 weeks and herceptin is 3 weekly for 12 months. So it is quite a commitment to being cancer free. Kath
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Hi Kath, thank you for your comments / advice. so relieved to hear that about the toilet! xx
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Hi Nadine, thank you for the advice. I think I will ask the surgeon about doing portacath or PICC line
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Hi Brenda, thanks for comments / advice. Its been great to have a read through the posts and some profiles, its given me a lost of encouragement. All the best to you on your journey too xx
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Hi Leila welcome, sorry you need to visit. I worked on an off during my chemo and wore a wig while working. Everyone has given you good advice you never know how chemo will effect you. Canteen is good for your children they now support young children with parents going through cancer treatment..
One day at a time sending you a hug xx
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Hi Leila
Sorry about your diagnosis. It sounds very similar to mine in that you caught it small and early. I also have small children.
I haven't much to add to what everyone else has said apart from I've had a few coughs and colds caught from my three year old. I just needed to keep a close on myself and make sure I didn't get a fever etc. I haven't so far.
I also had terrible veins and after two rounds of chemo opted for a Picc line in my arm. As a terrible needle phobic who was being continually stabbed, it was a life saver for me! The only negative was having it flushed every week but for me it was worth it.
In all honesty you won't know how you will feel during chemo until you are there because everyone has a different reaction. And it will also depend on how demanding your job is. Chemo brain is a real thing too! lol
Best of luck with your surgery.
x-Sherril
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Hi Leila,
Sorry to hear you've been diagnosed. With the surgery waiting time your surgeon or their receptionist will be able to give you an indication of how long the waiting period is for your surgery. Because it is breast cancer you will not have an incredibly long wait. As a lot of surgeons have private and public lists it will depend on which hospital you are being sent to and how full the surgeons list is for that hospital and how often they operate there with their public list. When I talked to my surgeon (who has a public list fortnightly at the hospital I was going to) she said that if I had been able to see her earlier in that week she would have operated on me the following day because she had an opening. As it was I then had a four week wait for surgery as her public list was full for the following fortnight. Rest assured that if you need to be fitted in more urgently they will do it.
Let us know how your getting on. Take care. Xx Cath
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Thank you everyone for your kind words, I have been to see surgeon today and got a date for surgery (15/7/16) so only a couple of weeks away (3 weeks after getting the big news). I have asked about the PICC line and the surgeon agreed it would be a good idea for me so that was a huge relief!
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Hi Donna, thanks for the encouragement. Its great to hear feedback about people not feeling sick on chemo, gives me some hope! Sounds like you have had a massive 3 months, wishing you all the best for the rest of your treatment xx
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Hi Leila and while I am sorry about the reason that had you join us here do know it is the a good place to be when dealing with BC. I have found the ladies here so helpfull and an incredible source of both knowledge and support post being diagnosed in late Feb.
Toilet use and sharing is no problem - you just flush with the lid down and make sure you wash your hands well and like many others I also use baby wipes to wipe down the seat post flushing... One thing I was not aware of beforehand but advised by my Chemo nurse to do is to keep my used underwear separate from other dirty clothing and to wash it separately. I also went and bought up a bunch of small face washer towels which I use for private bits post showering to avoid using the body towel on the same bits just in case... I keep both undies and those towels separate (in a bucket) and I wash them separately from eberything else on the hottest cycle with prewash and extended washing cycle. Also her advice was to ensure that is always sun/line dried. Also, that is only.required during the initial.7 to.9 days post chemo then U have nothing to worry about once toxins are out off the system...
Hubby is in charge of washing so when he handles my bucket he has to wear gloves... And also a few times when I had massive hot flushes during initial post chemo days I made sure my sweaty tshirts I sleep in ended up in the same bucket.
But that is about the extent of how complicated hygiene got for me...
As far as Chemo goes and ability to work everyone is different but if you end uo on the AC regime while some work and others do not keep in mind it would make you succeptible to various bugs so if you work at reception you may need some new routines to help you minimise exposure to various germs and viruses....
Due to allergy to antibiotics I was advised to stop working and stay confined to my home most of my Chemo and when I go out I always wear a facemask. So does hubby whonis nownused to wearing it on public transport in the shops etc... Getting used to it was a bugger for him but now we have a routine and all is good. I know it may sound weird but maybe worthwhile stocking up on them and having one at work in case someone germy is in reception area would be a good idea (not all the time but maybe just during 'dangerous encounyers')... Some ladoes also suck strepsil lollies or similar antibacterial lollies when in presence of people they think may be carrying viruses...
Also worthwhile getting a flu jab and having family get them too before the treatment starts so all are minimising risk of flu making it into the household...
We all respond differently to Chemo and just remeber to plan for the worst and hope for the best as preparing for all eventualities will help you should it get hard along the way - always good to have an alternative plan in place
wishing you all the best
hugs
Jel
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Thanks Jel, some great tips there
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