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I was hoping that I might find other TNBC ladies on here to connect with, as I navigate the side effects and potential prognosis that a TNBC diagnosis brings with it. I am interested in hearing how other women are being treated with this diagnosis - as there isn't really much 'new' in the space of TNBC with trials and the like. I am being treated by Rick De Boer in Melbourne (St Vincent's Private).
It's a big, bad and scary term - but luckily for me I am not metastatic. I had to advocate for myself after initially attending and being told it was 'just' a cyst. I was told to repeat the ultrasound in 3-6 months. Two weeks later, I was in pain and felt the rapid change; the tumour had double in size and was now a grade 3 tumour. I thank my assertiveness every day for returning to the GP.
Reading through others stories, I am shocked that in 2023, women are still being missed and not offered biopsy in the first instance. I now know that the only way to truly diagnose a lump is through pathology. Lucky for me, I had pain in my boob (another misconception...'breast cancer is not normally painful').
Looking forward to connecting with you all.
Elise x","kudosSumWeight":0,"postTime":"2023-07-24T18:01:11.000-07:00","images":{"__typename":"AssociatedImageConnection","edges":[],"totalCount":0,"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}},"attachments":{"__typename":"AttachmentConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[]},"tags":{"__typename":"TagConnection","pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null},"edges":[{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDE","node":{"__typename":"Tag","id":"tag:triple-negative-breast-cancer","text":"triple-negative-breast-cancer","time":"2025-03-25T05:01:42.661-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDI","node":{"__typename":"Tag","id":"tag:young-women","text":"young-women","time":"2025-03-25T05:01:39.456-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}}]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:155455_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":686},"visibilityScope":"PUBLIC","canonicalUrl":null,"seoTitle":null,"seoDescription":null,"isEscalated":null,"placeholder":false,"originalMessageForPlaceholder":null,"messagePolicies":{"__typename":"MessagePolicies","canModerateSpamMessage":{"__typename":"PolicyResult","failureReason":{"__typename":"FailureReason","message":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","key":"error.lithium.policies.feature.moderation_spam.action.moderate_entity.allowed.accessDenied","args":[]}}},"archivalData":null,"customFields":[],"body":"Hi there, I'm new to this community...and the cancer journey. I am a 39yo school teacher with two beautiful young children (4 and 2yo). I am halfway through five months of chemo with surgery and radiotherapy to follow...
I was hoping that I might find other TNBC ladies on here to connect with, as I navigate the side effects and potential prognosis that a TNBC diagnosis brings with it. I am interested in hearing how other women are being treated with this diagnosis - as there isn't really much 'new' in the space of TNBC with trials and the like. I am being treated by Rick De Boer in Melbourne (St Vincent's Private).
It's a big, bad and scary term - but luckily for me I am not metastatic. I had to advocate for myself after initially attending and being told it was 'just' a cyst. I was told to repeat the ultrasound in 3-6 months. Two weeks later, I was in pain and felt the rapid change; the tumour had double in size and was now a grade 3 tumour. I thank my assertiveness every day for returning to the GP.
Reading through others stories, I am shocked that in 2023, women are still being missed and not offered biopsy in the first instance. I now know that the only way to truly diagnose a lump is through pathology. Lucky for me, I had pain in my boob (another misconception...'breast cancer is not normally painful').
Looking forward to connecting with you all.
Elise x"},"Conversation:conversation:155455":{"__typename":"Conversation","id":"conversation:155455","solved":false,"topic":{"__ref":"ForumTopicMessage:message:155455"},"lastPostingActivityTime":"2023-12-13T18:07:32.000-08:00","lastPostTime":"2023-12-13T18:07:32.000-08:00","unreadReplyCount":18,"isSubscribed":false},"ModerationData:moderation_data:155455":{"__typename":"ModerationData","id":"moderation_data:155455","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:155455_1":{"__typename":"Revision","id":"revision:155455_1","lastEditTime":"2023-07-24T18:01:11.000-07:00"},"ForumReplyMessage:message:155467":{"__typename":"ForumReplyMessage","id":"message:155467","conversation":{"__ref":"Conversation:conversation:155455"},"author":{"__ref":"User:user:20667"},"revisionNum":1,"uid":155467,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"subject":"Re: Triple Negative Diagnosis","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:155467"},"parent":{"__ref":"ForumTopicMessage:message:155455"},"body":"I am so glad your friend stuck to her guns & got seen. As I understand it, if you go thru a regular Radiology service, you will be charged, no matter your age - but Breastscreen Vic/NSW/QLD/SA/WA/TAS and NT have NO RIGHT TO SAY 'NO' if you are over 40!! And they DON'T have to pay for it themselves or go thru their Health Funds (who wouldn't cover it anyway, I think!) If they are currently UNDER 40, they may have to pay for it - unless there is close family history or they have the BRCA gene ... I am not sure ... A buddy in regional Vic, in her 40s has just been diagnosed with BC & is seeing the surgeon on Mon. :(
I would like to advocate for the mammogram program to be from 30 onwards for all women wishing to access it. I think it would save our healthcare system a lot of money in the long run if screening were available to a wider net of women. It is on the increase in younger women in any case. It's scary and sad.
Precisely, @Elise_Rim - but I think we'll be pushing it uphill to get it down to 30, given the resistance they already show for those aged 40-49 and over 74 (who everyone forgets - but there are MANY who develop BC aged over 74!) when legally they SHOULD see them! Sadly, they don't look at 'earlier mammograms' as 'preventative' - they see it as 'over servicing'!!
Those who HAVE had MGs under 50 and over 74 also don't get reminders to attend again in 2 years .... they need to 'diary it forward' themselves as a reminder!
Same as some of the Stage 4 treatments - sometimes they only give the 'better ones' as almost 'palliative care' choices, instead of early on in the diagnosis, when immunotherapy has been known to actually stop some cancer in its tracks .... it really is a false economy - but they just can't see it! :( ","body@stringLength":"1915","rawBody":"I am so glad your friend stuck to her guns & got seen. As I understand it, if you go thru a regular Radiology service, you will be charged, no matter your age - but Breastscreen Vic/NSW/QLD/SA/WA/TAS and NT have NO RIGHT TO SAY 'NO' if you are over 40!! And they DON'T have to pay for it themselves or go thru their Health Funds (who wouldn't cover it anyway, I think!) If they are currently UNDER 40, they may have to pay for it - unless there is close family history or they have the BRCA gene ... I am not sure ... A buddy in regional Vic, in her 40s has just been diagnosed with BC & is seeing the surgeon on Mon. :(
I would like to advocate for the mammogram program to be from 30 onwards for all women wishing to access it. I think it would save our healthcare system a lot of money in the long run if screening were available to a wider net of women. It is on the increase in younger women in any case. It's scary and sad.
Precisely, @Elise_Rim - but I think we'll be pushing it uphill to get it down to 30, given the resistance they already show for those aged 40-49 and over 74 (who everyone forgets - but there are MANY who develop BC aged over 74!) when legally they SHOULD see them! Sadly, they don't look at 'earlier mammograms' as 'preventative' - they see it as 'over servicing'!!
Those who HAVE had MGs under 50 and over 74 also don't get reminders to attend again in 2 years .... they need to 'diary it forward' themselves as a reminder!
Same as some of the Stage 4 treatments - sometimes they only give the 'better ones' as almost 'palliative care' choices, instead of early on in the diagnosis, when immunotherapy has been known to actually stop some cancer in its tracks .... it really is a false economy - but they just can't see it! :( 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icon"},"localOverride":false},"ModerationData:moderation_data:155471":{"__typename":"ModerationData","id":"moderation_data:155471","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:155471_1":{"__typename":"Revision","id":"revision:155471_1","lastEditTime":"2023-12-13T17:54:33.000-08:00"},"ForumReplyMessage:message:155471":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:1538"},"id":"message:155471","revisionNum":1,"uid":155471,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-discussion"},"conversation":{"__ref":"Conversation:conversation:155455"},"subject":"Re: Triple Negative Diagnosis","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:155471"},"body":"Hi @gorgybee, welcome to the ‘exclusive TNBC’ group. 😒 I’m sorry that this has happened to you. Like me, I have no family connection to the beast either.
I have just completed 3 weeks of daily radiotherapy after having what appears to be a very similar regime to yours. Chemo (AC, then taxol/carbo), surgery, then radio. So I’m ’through the other side’ so to speak.
I hope you’re coping okay. I found a woman in Melbourne like myself who answered any questions I had and I am happy to do the same with you. I found it super helpful to cancel out the noise and speak to people who had been through the experience. Also relying on my fabulous medical team.
Look after yourself.
Elise x
","body@stringLength":"754","rawBody":"Hi @gorgybee, welcome to the ‘exclusive TNBC’ group. 😒 I’m sorry that this has happened to you. Like me, I have no family connection to the beast either.
I have just completed 3 weeks of daily radiotherapy after having what appears to be a very similar regime to yours. Chemo (AC, then taxol/carbo), surgery, then radio. So I’m ’through the other side’ so to speak.
I hope you’re coping okay. I found a woman in Melbourne like myself who answered any questions I had and I am happy to do the same with you. I found it super helpful to cancel out the noise and speak to people who had been through the experience. Also relying on my fabulous medical team.
Look after yourself.
Elise x
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