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youngdogmum

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Re: Duration of endocrine therapy in premenopausal Australian patients
MicheleR Hi Michele No..I’ve come to my own conclusion that there simply isn’t the data to support taking Zoladex beyond 5 years but some people are choosing to continue. I’m no closer to a decision about how long I want to stay on for.
1 year ago Place Hormone blocking therapy
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Re: Duration of endocrine therapy in premenopausal Australian patients
cactusk said: Hi there, I was peri-menopausal when I was diagnosed. My onc has said that although 5 years is standard at present, studies will come through within the next 5 years that make it more likely that I'll be on the AI's for at least 7, but more likely 10 years. For the ovarian suppression, I was surprised that I would need to be on this for more than 2 - 3 years, given i was near to (but not quite) menopausal, hence my understanding that at least 3-5 years for the Zoladex, and that could be extended. I'm not sure what tests would need to happen for this to cease. I can choose an oophorectomy at any stage to cease the monthly injections, but I'm not keen for another procedure just yet. Have you discussed Ribociclib with your onc too? i'm also on Zometa (as 6 monthly infusions) and I"m not sure how long that will go on for - i assume as long as the AI's do. K Interesting, there are a couple of studies already that show a small group benefit from 7 years but very few do benefit from 10 years of AI. I struggle internally with the decision to continue on these or switch to tamoxifen… I’ve long missed the boat for ribo, I believe it’s only approved for the first two years of endocrine therapy (it was still a trial when I was diagnosed and I chose to not enrol) . I am still child bearing age/haven’t had children yet (I am now 33, was 27) and tbh I am not keen on further treatment if I can avoid it. I did 2 years of Zometa infusions but have stopped, as a new study showed 2 were just as beneficial as 3 and my bone density has stayed fine so far, it’s declined but is still normal. I pay for an annual BMD to check.
1 year ago Place Hormone blocking therapy
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Re: Duration of endocrine therapy in premenopausal Australian patients
cactusk said: Grade 2B, Stage 2, 10 years AI (letrozole) and (at least) 5 years ovarian suppression @cactusk can I ask why 10 years of AI for you when the studies say 5 for most? (I am genuinely interested to hear the recommendation from your onc) what Is your plan for ovarian suppression beyond the 5 years? An oopherectomy?
1 year ago Place Hormone blocking therapy
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Duration of endocrine therapy in premenopausal Australian patients
Hello all Very long time since I’ve poked my head into this discussion forum. I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total endocrine therapy. I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. Please comment with your doctors advice and your stage/diagnosis. Are you doing: 5 years ovarian suppression and aromatase inhibitor 7 years ovarian suppression and aromatase inhibitor 10 years ovarian suppression and aromatase inhibitor 5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 10 years tamoxifen alone
1 year ago Place Hormone blocking therapy
aromatase-inhibitors
hormone-therapy
young-women
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Re: Womanhood when you're diagnosed young
Hi @linda87.. Lots of questions which are normal and a big part of our grief as young survivors. Very very normal to focus on survival. Can you have biological children? The short answer is yes probably .. Id recommend jumping on the FB group Babies After Breast Cancer, heaps of success stories. It’s a complicated situation and depends on multiple things: - It’s possible that chemo could make you menopausal... but it probably won’t. Are you on Zoladex during chemotherapy? It’s a needle to suppress your ovaries which is supposed to keep your fertility safer. If not, ask your oncologist why at the next appt. If you are menopausal after chemo that makes having a baby harder. - Having a pregnancy depends on the length of your treatment which depends on the type of BC you have. Sometimes triple negative patients need to go on oral chemo after the IV stuff is finished if it didn’t kill all the cancer and you wouldn’t be able to have a baby whilst you’re taking that for example, but once it’s finished you could. For hormone positive BC there is 5-10 years of oral medicines called “hormone therapy” recommended (tamoxifen, Letrozole, anastrazole and exemestane are their names). You need to come off these to have a baby. The timeframe to when it is safe to do this is unclear and currently being studied, most oncologists recommended doing at least 3 years then coming off. That will put you at 37/38. This is the reason breast cancer survivors are the group of cancer survivors least likely to have children, as our treatment goes on for a long time and their fertile window becomes shorter and shorter. If having a baby is something you want, most oncologists will support it. There was a lot of old school thinking that no BC survivors should have children, but particularly hormone positive patients, as the hormones that feed the cancer are raised during pregnancy. The current available evidence is that this is not true and pregnancy does not cause an increase in recurrence or mortality. Adoption is very very difficult in Australia… Sex and life after cancer in general is different. The hormone therapy medicines can impact sex life, I’m not going to lie about that! But their benefits are HUGE and they really do extend the lives of hormone positive patients. I was very focused on survival as well for the first year but I am coming up to year 3 since I was diagnosed and I focus on living my life now :) I am happy and healthy. Will I have children? Hard to say… is there a void?? Yes and no… I have probably overwhelmed you !! I should mention a friend of mine was diagnosed a week before me with triple negative BC, she is 8 months pregnant with her first at 32!!! And all she has ever wanted to be is a Mum. Take care xx
4 years ago Place General
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Re: Chemo clinics around Australia
Hello @Cazlin is this because you’re on indefinite treatment for stage 4? That trip sounds great but I’m not sure it’s very practical. With my knowledge of the healthcare system (nurse and patient) because each state is funded separately there is issue with who pays for what when you don’t live in catchment. There is a similar agreement for this when people need long term dialysis for kidney failure but I believe it’s not a continuous thing; for example there is a wedding in Canberra and you live in Brisbane. Your team can arrange a one off week in Canberra to receive dialysis and you get to attend the wedding/holiday/whatever it is. But I’ve never heard of such a lengthy, multi-clinic agreement and these one-off trips generally take quite a long time to coordinate, as a space for treatment needs to be negotiated and a doctor agreeable to “look after you” for the time you are in their area. I’m sorry that’s probably not what you want to hear. I think you would be best to do short trips and return home for chemo each three weeks. There’s also the issue if you get sick between rounds of chemo and potentially needing admission to hospital - our interstate health systems don’t talk directly to one another and it can be a lengthy process getting important information in a hurry. As are interstate transfers from hospital to hospital (this is one of my jobs actually for paediatric patients and it’s complicated).
5 years ago Place General discussions
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Med shortage thread
Given the current climate I thought we should start a thread so people can post if they are having difficulty getting any BC specific meds and their location to help others trying to track them down. Had a 6 month appt with my onc on tues and neither onc nor CNC said Zoladex or Femara were currently an issue and they feel both are common enough that Oz will have a good supply. For reference Femara is made in Switzerland and Zoladex in UK. I am on Gold Coast and filled a repeat last week with no indication of supply chain issues.
6 years ago Place General discussions
medications
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Re: Testing question
@LibbyA if there’s an abnormality and an MRI is recommended I would advise whoever she sees at the Wesley to refer her to a breast surgeon who can then refer for a breast MRI bulk billed. However this will of course incur a private doctor fee to see a breast surgeon so perhaps $150 out of pocket? I’m not sure what type of doctor is running a breast clinic that isn’t a breast surgeon... is there not a breast surgeon in that specific clinic she can ask to see to do the above?? @KarynJ very specific rules around bulk billed breast MRIs unfortunately.
6 years ago Place General discussions
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Re: Testing question
Does she not see a breast surgeon at the Wesley? They should be able to order it and make it free. Otherwise try qld X-ray they are relatively affordable (mine was $400 whereas I’ve heard others close to $1000)
6 years ago Place General discussions
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Re: Hi I have just been diagnosed
Basically what I’m saying is there is little to no difference except sitting about waiting a bit longer. If this is going to annoy you and you can afford the out of pocket gap if there is one, head to the private. If not, go public, same treatment same radiation therapists. I live really close to GCUH so getting to and from isn’t an issue but if you have to travel from Tugun for example to then have to wait maybe 45 minutes a few times, private makes more sense. Most of my waits were less than 10 minutes :) @HunnyB
6 years ago Place General
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