Best Of
Re: Newly diagnosed DCIS
So sorry to see you here, @Nafeesa - joining the club you never thought you'd join. It is a real roller coaster ride - both for your emotions & physically - early on, it is like you are on a conveyor belt - do this, go there, come back, go back there .....
Have you been assigned a Breast Care Nurse yet? They will become an important part of your team - and probably the first person to check with, if you have any concerns, specially after your surgery.
I hope you have good family & friends supporting you - if they offer to help (by way of meals, mowing your lawn, travel to & from appointments etc) say YES! ANYTHING to take pressure off you at this point in time. xx. Consider recording all your meetings on your phone as it is very easy to miss bits at the time .... you can go back over it later, if you need to.
Ask away on ANY question here & you'll get knowledgeable answers from those who've 'gone before you'! You can also use the 'Search Function' (click on the magnifying glass) and to see previous threads on the subject.
Gene Testing - BRCA gene? Is there a history of breast cancer in your family? If so, that would be a yes from me. Eventually, the hope is that it is done to everyone with all major diseases like cancer, as it is the only way they can work out who is likely to get it in the future & how to possibly circumvent it! The Yanks have it done at birth ... why not Australia?
There are also a few 'different brand’ genome tests available that check the DNA of the cancer to see if it has mutated from the ‘original’ ... and they then suggest specific drugs to combat it, if there are any. The tests are usually about $5000 - and eventually will be subsidised ... just not right now
The results from this one can indicate if immunotherapy would be of use to your treatment, if needed.
I went private with my surgery nearly 5 years ago, so I knew it would be done sooner & then it was GONE! (I had my biopsy results on Jan 5, saw surgeon on Jan 12 & had surgery on Jan 15!) Just be aware that there CAN be 'out of pocket expenses' with going private even if you have the highest health care cover. Your surgeon should give you a 'quote' on expected out of pocket costs. My out of pocket costs were about $6,000-7,000 over the next few years, as quite a few things weren't covered by Medicare or Health Care Plan - even $500 of my pathology (which really surprised me!) Then I went public for my radiation & it cost me nothing.
Whereabouts are you (you can edit your profile & put in your city or town/region.) If you are rural/regional, you can claim on travel & accommodation expenses thru your state Gov (we have a private group for rural/regional members, to discuss stuff.) We also may have members nearby who you can catch up with for a coffee & chat now the covid restrictions have lessened xx
Feel free to jump onto this thread & read a bit about the whole forum - including tips on what to take to hospital with you xx. There is also a link to some 'tick sheets' that you can fill in & take to the meetings with your medical team. We have many 'off topic' threads, where you can chat about your gardens, art & craft, even your furkids if you have some - and a couple of joke threads - yes, we can even have a bit of a laugh xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Remember .... take lots of deep breaths - take one day at a time ... keep doing what you love doing - keeping busy really helps stop your brain going berserk .... DON'T use Dr Google - a lot of info there is not relevant to your own condition & treatment & it can be downright scary going down some of those rabbit holes!
take care xx
Have you been assigned a Breast Care Nurse yet? They will become an important part of your team - and probably the first person to check with, if you have any concerns, specially after your surgery.
I hope you have good family & friends supporting you - if they offer to help (by way of meals, mowing your lawn, travel to & from appointments etc) say YES! ANYTHING to take pressure off you at this point in time. xx. Consider recording all your meetings on your phone as it is very easy to miss bits at the time .... you can go back over it later, if you need to.
Ask away on ANY question here & you'll get knowledgeable answers from those who've 'gone before you'! You can also use the 'Search Function' (click on the magnifying glass) and to see previous threads on the subject.
Gene Testing - BRCA gene? Is there a history of breast cancer in your family? If so, that would be a yes from me. Eventually, the hope is that it is done to everyone with all major diseases like cancer, as it is the only way they can work out who is likely to get it in the future & how to possibly circumvent it! The Yanks have it done at birth ... why not Australia?
There are also a few 'different brand’ genome tests available that check the DNA of the cancer to see if it has mutated from the ‘original’ ... and they then suggest specific drugs to combat it, if there are any. The tests are usually about $5000 - and eventually will be subsidised ... just not right now
The results from this one can indicate if immunotherapy would be of use to your treatment, if needed.I went private with my surgery nearly 5 years ago, so I knew it would be done sooner & then it was GONE! (I had my biopsy results on Jan 5, saw surgeon on Jan 12 & had surgery on Jan 15!) Just be aware that there CAN be 'out of pocket expenses' with going private even if you have the highest health care cover. Your surgeon should give you a 'quote' on expected out of pocket costs. My out of pocket costs were about $6,000-7,000 over the next few years, as quite a few things weren't covered by Medicare or Health Care Plan - even $500 of my pathology (which really surprised me!) Then I went public for my radiation & it cost me nothing.
Whereabouts are you (you can edit your profile & put in your city or town/region.) If you are rural/regional, you can claim on travel & accommodation expenses thru your state Gov (we have a private group for rural/regional members, to discuss stuff.) We also may have members nearby who you can catch up with for a coffee & chat now the covid restrictions have lessened xx
Feel free to jump onto this thread & read a bit about the whole forum - including tips on what to take to hospital with you xx. There is also a link to some 'tick sheets' that you can fill in & take to the meetings with your medical team. We have many 'off topic' threads, where you can chat about your gardens, art & craft, even your furkids if you have some - and a couple of joke threads - yes, we can even have a bit of a laugh xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Remember .... take lots of deep breaths - take one day at a time ... keep doing what you love doing - keeping busy really helps stop your brain going berserk .... DON'T use Dr Google - a lot of info there is not relevant to your own condition & treatment & it can be downright scary going down some of those rabbit holes!
take care xx
arpie
5
Re: Stage 2/ grade 2 - is chemo required?
Hi there @Annalyn...as mentioned above, trust your medical team and remember, chemo is not pleasant, but then neither is cancer. The fact that it is already in at least one node, shows its intention to travel. It already has its passport ready and bags packed and you would want to knock it off before it boards a plane to travel to some exotic location such as your lungs, liver, bones or brain. Your team would not recommend it if it was not necessary. Good luck with your treatment...Ally.
AllyJay
5
Re: Stage 2/ grade 2 - is chemo required?
Sorry to see you here in the club noone wants to join. Try to be guided by your medical team. Chemo is doable. Doesn't always feel like it at the time. Put one step in front of each other and just breathe as you go through your treatment.
Locksley
5
Re: Newly diagnosed, WLX / Lumpectomy - What's next ...
I guess I was a deer in the headlights and went about doing what they told me I needed to do. I was in a lot of shock and didn't have all my wits about me. I didn't have hubby with me as we were only expecting a routine answer that was indicated. He couldn't get a car park close by hospital and has mobility issues so I went by myself. Was all a nightmare. Felt like i was having an out of body experience. I have learnt a lot about myself along the way.
Locksley
5
S E QUEENSLAND SUPPORT GROUPS
If YOU live in SE Qld from Northern NSW to Mackay I have compiled a list of face to face support groups. I started local support group on the Gold Coast back in 2019 and we now have 630 members - We opened our support group to include Ovarian due to the BRCA gene then gradually to ALL cancers for women on the Gold Coast. We have Local leaders in each postcode/suburb and TYPE Leaders for each cancer so there are a lot of events and we have even got FREE exercise classes now three times a week at Palm Beach, Coomera & Southport. Also aqua classes ($5) but have a great support TRIBE where we BUDDY newcomers to the group and have ladies sewing and making PORT/Seatbelt cushions, bags for BFF Ponchos we deliver to ladies having mastectomies, and have hospital visit fairies who visit our lovelies in hospital and take one of CARE PACKS with ear plugs, sleep masks, hand sanitiser, tissues, hand fan, cool towel, chemical free deodorant, cleanser, and other toiletries and skincare, stress ball for exercise arms after breast surgery, non-slip socks, a journal and pen and mandala colouring KIT, hand crocheted Worry Worm and other items when donated. We also have a lot of WIGS & Headwear we loan to our members, and handy items like wheelie walkers, shower chair, wheelchair etc.
We will have our website working by Wednesday https://wcsgc.au and will have our interactive LIVE calendar working then too. 
sandramj
5
5 years, all Clear - signed off with my surgeon yesterday
Travelled to Sydney in the stinking hot weather on Thurs (no aircon in the campervan!) and arrived at my cousin's place, like a grease spot on the floor! Great catching up with them again & also caught up with an ex flatmate I hadn't seen in decades & a squash buddy that I used to play with weekly ... hadn't seen him or his wife since 1979! Such memories - and MANY laughs!! We all knew each other - and just slotted back into 'friend chat' beautifully!
I also saw my surgeon yesterday (lovely chap that he is!) - I'd cancelled last year's appt due to covid & hubby not being well ..... and he was frightened that 'something was up' when he saw my name on his list!! ..... but I was able to reassure him on that one! I really just wanted the 'final checkup' to be rubber stamped & finalised. He is very happy with how I am going & still amazed at how 'natural feeling' the BC Breast was, as sometimes the radiation can make them a bit 'hard' ....
So that's it!! No need to see him again, unless something DOES come up that concerns me .... tho I will continue to see my Medical Onc & Rad Onc for at least another 5 years (he indicated it would be for life, or at least the yearly MGs & US!!) He was non committal on continuing the AIs for another 5 years (not his area of expertise) but advised me that some of them DO impact your bone density, so suggested asking for a Dexa scan (I haven't had one for a few years now. ...) So next time I see my Medical Onc in 6 months, I'll suggest I stay on Anastrozole for the time being, as I am handling it much better than the previous 2 (Letrozole and Exemestane.)
And wouldn't you know it - last night, (and today) I have a persistent pain in my left hip area ...... hmmm, I may have strained it a tad yesterday when I was putting the trailer back in 'its spot' after arriving back home .... I hope so! I am taking some voltaren to see if that helps ..... But I will remain vigilant - as sadly my BC mentor (who put me onto BCNA in the first place) had her 5 year 'all clear' a few years back and just months later was diagnosed with mets from an entirely DIFFERENT cancer, which sadly caused her death - how the HELL did they miss that one??
So - onwards & upwards ..... I have lots of travel plans this year .... some short, some longer .... and who knows WHO I may catch up with on my travels!
I am sure there will be some BCNAers on the list! 
take care & all the best xx
I also saw my surgeon yesterday (lovely chap that he is!) - I'd cancelled last year's appt due to covid & hubby not being well ..... and he was frightened that 'something was up' when he saw my name on his list!! ..... but I was able to reassure him on that one! I really just wanted the 'final checkup' to be rubber stamped & finalised. He is very happy with how I am going & still amazed at how 'natural feeling' the BC Breast was, as sometimes the radiation can make them a bit 'hard' ....
So that's it!! No need to see him again, unless something DOES come up that concerns me .... tho I will continue to see my Medical Onc & Rad Onc for at least another 5 years (he indicated it would be for life, or at least the yearly MGs & US!!) He was non committal on continuing the AIs for another 5 years (not his area of expertise) but advised me that some of them DO impact your bone density, so suggested asking for a Dexa scan (I haven't had one for a few years now. ...) So next time I see my Medical Onc in 6 months, I'll suggest I stay on Anastrozole for the time being, as I am handling it much better than the previous 2 (Letrozole and Exemestane.)
And wouldn't you know it - last night, (and today) I have a persistent pain in my left hip area ...... hmmm, I may have strained it a tad yesterday when I was putting the trailer back in 'its spot' after arriving back home .... I hope so! I am taking some voltaren to see if that helps ..... But I will remain vigilant - as sadly my BC mentor (who put me onto BCNA in the first place) had her 5 year 'all clear' a few years back and just months later was diagnosed with mets from an entirely DIFFERENT cancer, which sadly caused her death - how the HELL did they miss that one??
So - onwards & upwards ..... I have lots of travel plans this year .... some short, some longer .... and who knows WHO I may catch up with on my travels!
I am sure there will be some BCNAers on the list! take care & all the best xx
arpie
7
Re: Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi @hopeful_cath01 I was diagnosed as Stage 4 Denovo with bone mets in Oct 2018. I started the same regime of drugs you have Ribo's, Letrozole and Denosumab. The protocol is/was to start you on the highest dose of 600mg. The studies showed that a large proportion of people just can't stomach that dose due to side effects, the most common being nausea and low neutrafils. I too suffered immensely on 600mg with nausea even with the maxelon and neutrafils went too low. So after some trial and error, many side effects, down to 400mg then down to 200mg. My body found my happy place was 200mg with minimal side effects, no nausea and I've been on that dose since then. The lower dose is just as effective as a higher one, its just that your body has to find the happy place where it can deal with them. Please discuss this with your Oncologist... When I started the drugs were still fairly new so I went thru several cycles to try and find the sweet spot for me and I had varying and different side effects each cycle til I settled. Please note all your side effects and discuss them with your Onco... your quality of life is important too. Best wishes, take care. Hugs Elise
Best wishes, take care. Hugs Eliseelisewjk
5
Re: I don't feel like myself
Dear @Capricorn68
It’s tough, everything seems to
happen at once. Reactions to AIs can vary a lot and sometimes are worst at the beginning so I hope things settle down. It’s also possible that you are reacting to the undoubted emotional
impact of everything that’s been going on. You’re dealing with your father’s declining health, your mother’s anxiety and sadness, a new job and, irrespective of a good prognosis, the impact of cancer, which may be a greater impact than you realise. Cumulatively, it’s wobble territory. Throw in reactions to medication and no wonder you feel teary. Many of us have found a short stint with an experienced counsellor useful. We do all the stuff about looking after the body, as you do, and some of it is good for the mind too but sometimes a focus, with a disinterested but enabling other, can at least help develop coping mechanisms and possibly unlock some long term strengths and resilience we never knew we had. Best wishes.
It’s tough, everything seems to
happen at once. Reactions to AIs can vary a lot and sometimes are worst at the beginning so I hope things settle down. It’s also possible that you are reacting to the undoubted emotional
impact of everything that’s been going on. You’re dealing with your father’s declining health, your mother’s anxiety and sadness, a new job and, irrespective of a good prognosis, the impact of cancer, which may be a greater impact than you realise. Cumulatively, it’s wobble territory. Throw in reactions to medication and no wonder you feel teary. Many of us have found a short stint with an experienced counsellor useful. We do all the stuff about looking after the body, as you do, and some of it is good for the mind too but sometimes a focus, with a disinterested but enabling other, can at least help develop coping mechanisms and possibly unlock some long term strengths and resilience we never knew we had. Best wishes.
Afraser
4
