The wait is frustrating and worrying. And so many questions!
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Hey @KatWat I've just caught up on this thread, we all absolutely know where you are at and how incredibly stressful it is. I think the key is as its overwhelming is to slow everything right down. My last diagnosis was Stage 2 also but grade 3 so I had to do chemo, no node involvement either ER+ only. Only your Oncologist can tell you after pathology results what your recommended treatment would be, I didnt have a choice in treatment nor do most people. So wait and see what is said. Its hard to know how you will go with Chemo, unfortunately I made all these plans how to work around it all but I was drug sensitive and ended up having to take a few months off work. I work in education so have an inbuilt income protection component with Vicsuper, not alot of Supers have this but its worth checking. I was Income protection for 2yrs from treatment which allowed me to work 3 days a week and receive up to 75% of my predisability wage of those 2 days, it was taxed heavily but it was better than nothing. Centrelink are USELESS!!
I was raising my 2 children alone at the time, so I know what you mean about finances. I had savings and over the long period I spent over $20,000 of my own money to survive. If you go public you'll have no out of pocket at all, I did radio public but chemo private. Really makes no difference care was the same.
So 1 step at a time and see what your direction is first, its so hard to not spin into the world of whatifs and try and plan without clarity...so hold tight. You will manage and you will get through it. Hugs Melinda xo1 -
Hi @KatWat
Dont hesitate to call our helpline on 1800 500 258, we can certainly help with some of your questions.1 -
Oh my goodness!! Thank you, everyone, for your support and advise. I finally have an appointment with the oncologist on Thursday (and he happens to be my GPs brother!) I've been back at work this week, great to keep my mind off things but I'm exhausted today. The team want me to consider having an OncoType test done but it costs about $2000 I think. From what I can gather it's a test done on my tumour to determine whether or not I'll benefit from Chemo. I barely have a spare $10 let alone $2000!! Anyway will keep you posted...
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Try not to stress about the oncotype test. Ask your doctor about the ki67 number. My breast surgeon told me yesterday that it's a poor man's oncotype test!
If you do have a choice about chemo, try thinking about how you'll feel further down the track. Will overtreatment or undertreatment sit more comfortably with you as a risk? Do your due diligence so that you can't look back and torture yourself once you've made your decision. Life's hard enough to live without throwing regrets into the mix. It sounds like neither decision is wrong or right at this stage. Try to choose the one that is right for you and you alone.
Be kind and gentle with yourself. It's a dreadful time but it will pass. Hang in there. K xox2 -
@katwat great news you have your Oncologist appt, let us know how you go with it. I agree with the Oncotype test, your the first Ive heard of them wanting it here in Australia. Its something used more in America isn't it?? anyway, for $2000 I wouldnt bother, I think you'd get a pretty good idea of your diagnosis by everything else. M x1
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@melclarity It was deemed useful for me, and was raised by both my breast surgeon and oncologist. EndoPredict. Thanks to the generosity of my parents I did it and followed the indicated advice, which was clearly that chemotherapy would have a curative benefit if some random cells had escaped and were looking for somewhere else to roost. No regrets.2
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@kmakm oh that's interesting, I know its big in the States but not used so much here. I did ask my Oncologist about it but he said the same thing its very expensive and not widely used because of that. I know ladies Ive spoken to OS have said they found it useful in making a decision for treatment. I would have thought too we would have something more available to go together with our diagnosis from pathology uuugh.
Having said that, I was over treated for DCIS in 2011, I had a major lumpectomy, radiation and tamoxifen for 4yrs. I had a recurrence inspite of all of that worst luck, though its been reported that Tamoxifen doesn't work in 1/3 of cases. So at my 2nd diagnosis in 2015 I had a tumor 2.5cm ER+ only, no node involvement, I couldnt have radiation twice, so my only treatment available was chemo. 1yr after treatment I saw a genetic counselor and I was BRACA 1 & 2 negative, and together with all my Specialists decided on a single mastectomy/diep flap reconstruction Feb 2017. So its super hard to know if you are under or over treating, I feel Ive over treated all the way even now with a mastectomy as all pathology was perfect and like the Oncologist said theres no way of knowing at all, whether it would have or wouldnt have come back again. As you said it really comes down to what you want and can live with I guess. Uuugh its all tough going no matter what.. xx Melinda1 -
@melclarity True. It's really is incredibly difficult and fundamentally challenging to the core.
Interesting what you say about Tamoxifen not working in one out of three. Can you recall where you heard that?
I am curious about "all pathology was perfect"! Do you mean all your pathology numbers indicated that Tamoxifen should have worked, ie prevented another tumour?
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@kmakm it was published by the National Breast Cancer Foundation here's the link
https://nbcf.org.au/news/research-news/breast-cancers-produce-own-estrogen-to-evade-treatment/?utm_content=article_estrogen-treatment&utm_medium=social&utm_term=Article,Marcomms,Research&utm_source=facebook
Once I finally had a mastectomy it was a year after treatment and the lumpectomy, pathology of the breast tissue was perfect there was no trace of anything, which I was clear after the lumpectomy originally. So whilst you sought of go oh great news after a mastectomy breast was perfect and clear...its like hmmm it was preventative to stop it coming back, there was nothing wrong with the breast.
The specialists actually don't know what happened in my case, in their opinion with my over treatment there was no way I could have had a recurrence and yet I did in the same spot. So safe to say surgery, radiation or tamoxifen didnt work and they just dont know.
I'm heading into 3yrs clear 2nd time and honestly I dont think much about it anymore. I was unlucky, but theres no crystal ball, I think it just comes down to Ive done all I could and thats all I can do really.
Everyone is different for sure, but have to admit Ive suffered more from treatment than anything and I'll never be back to where I was physically, so your life is fully compromised absolutely. I just move forward as best I can as we all do. x
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@melclarity From what I've read of your posts it sounds to me as if you've been extraordinarily brave. Chapeaux. And you are so generous with your experience. It's appreciated. K xox1
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Ohhh no braver than anyone else here, thats a certainty. We are all joined together through this, I think it helps to give back to others too...it is the toughest thing Ive ever been through...so we all get it here...implicitly. Hugs xoxo M1
