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with uncertainty and waiting","id":"message:17289","revisionNum":1,"repliesCount":12,"author":{"__ref":"User:user:19351"},"depth":0,"hasGivenKudo":false,"board":{"__ref":"Forum:board:general-newly-diagnosed"},"conversation":{"__ref":"Conversation:conversation:17289"},"readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:17289"},"body@stripHtml({\"truncateLength\":200})":"Hi everyone, I'm 33 and have just had a double mastectomy for what they think is high grade, bilateral dcis. I chose mastectomy over lumpectomy/radio. I'm struggling emotionally less with the ma...","body@stringLength":"1136","rawBody":"Hi everyone,
I'm 33 and have just had a double mastectomy for what they think is high grade, bilateral dcis. I chose mastectomy over lumpectomy/radio.
I'm struggling emotionally less with the mastectomy and more with the idea of the disease.
Diagnosis to surgery was probably 3 weeks. I've been in hospital a week now with drains. Surgery went very well, I'm healing well, the surgeon is happy, physically i feel as good as i can, but it's such a big deal!!! I'm an emotional wreck.
I think that the main struggle is that sitting with the fear of the unknown. I've always worried about my health. I trust my surgeon and team, the hospital is amazing but I just can't stop worrying. I have been told that waiting on the original biopsy results is the worst time, but now I'm waiting on surgery results I'm similarly distressed.
When did you come to accept your diagnosis? Or, at least, when did you emotionally surrender to the process? What strategies did you use to cope/surrender? Is it this hard all the way or do you adjust?
Love and good wishes to you all, Jen","kudosSumWeight":0,"postTime":"2016-09-13T03:50:48.000-07:00","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:emotions","text":"emotions","time":"2025-03-25T05:01:41.462-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDI","node":{"__typename":"Tag","id":"tag:mastectomy","text":"mastectomy","time":"2025-03-25T05:01:41.271-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDM","node":{"__typename":"Tag","id":"tag:surgery","text":"surgery","time":"2025-02-12T19:23:18.420-08:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}},{"__typename":"TagEdge","cursor":"MjUuMnwyLjF8b3wxMHxfTlZffDQ","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:17289_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":322},"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,"body":"Hi everyone,
I'm 33 and have just had a double mastectomy for what they think is high grade, bilateral dcis. I chose mastectomy over lumpectomy/radio.
I'm struggling emotionally less with the mastectomy and more with the idea of the disease.
Diagnosis to surgery was probably 3 weeks. I've been in hospital a week now with drains. Surgery went very well, I'm healing well, the surgeon is happy, physically i feel as good as i can, but it's such a big deal!!! I'm an emotional wreck.
I think that the main struggle is that sitting with the fear of the unknown. I've always worried about my health. I trust my surgeon and team, the hospital is amazing but I just can't stop worrying. I have been told that waiting on the original biopsy results is the worst time, but now I'm waiting on surgery results I'm similarly distressed.
When did you come to accept your diagnosis? Or, at least, when did you emotionally surrender to the process? What strategies did you use to cope/surrender? Is it this hard all the way or do you adjust?
Love and good wishes to you all, Jen","customFields":[]},"Conversation:conversation:17289":{"__typename":"Conversation","id":"conversation:17289","solved":false,"topic":{"__ref":"ForumTopicMessage:message:17289"},"lastPostingActivityTime":"2016-09-18T02:53:16.000-07:00","lastPostTime":"2016-09-18T02:53:16.000-07:00","unreadReplyCount":12,"isSubscribed":false},"ModerationData:moderation_data:17289":{"__typename":"ModerationData","id":"moderation_data:17289","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:17289_1":{"__typename":"Revision","id":"revision:17289_1","lastEditTime":"2016-09-13T03:50:48.000-07:00"},"ForumReplyMessage:message:17292":{"__typename":"ForumReplyMessage","id":"message:17292","conversation":{"__ref":"Conversation:conversation:17289"},"author":{"__ref":"User:user:19351"},"revisionNum":1,"uid":17292,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-newly-diagnosed"},"subject":"Re: Coping with uncertainty and waiting","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:17292"},"parent":{"__ref":"ForumTopicMessage:message:17289"},"body":"Thanks Jane and primek for your thoughts. My care nurse is amazing but I don't speak to her about how I'm feeling very often. I might give that a go!","body@stringLength":"149","rawBody":"Thanks Jane and primek for your thoughts. My care nurse is amazing but I don't speak to her about how I'm feeling very often. I might give that a go!","kudosSumWeight":0,"repliesCount":0,"postTime":"2016-09-13T13:21:52.000-07:00","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":[]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:17292_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":0},"visibilityScope":"PUBLIC","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":[]}}},"customFields":[],"replies":{"__typename":"MessageConnection","edges":[],"pageInfo":{"__typename":"PageInfo","hasNextPage":false,"endCursor":null,"hasPreviousPage":false,"startCursor":null}}},"CachedAsset:theme:customTheme1-1743643394041":{"__typename":"CachedAsset","id":"theme:customTheme1-1743643394041","value":{"id":"customTheme1","animation":{"fast":"150ms","normal":"250ms","slow":"500ms","slowest":"750ms","function":"cubic-bezier(0.07, 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You might like to join the Young Women's Group .... you can discuss everything there in total privacy.
Re Private vs public - I went private for the surgery just to 'get it done asap' as my story started in the Oct/Nov & the diagnosis wasn't til early Jan the following year - and as you know, the waiting really SUCKS! Many surgeons work in both systems .... so ask the different wait times if you go private vs public with them.
I went public for my radiation & paid nothing. I cannot fault it here in NSW (rural) and I've seen my Specialist Rad Onc every time (I've never seen 'randoms') which has been very comforting. My ongoing Medical Oncologist is also on the Public System (and was recommended to me by my Rad Onc) and she is VERY caring & I pay nothing. She is also my husband's Onc (who is on palliative chemo) and as we went private with him, (less travel) so we pay $110 per consult (of which a portion is reimbursed by medicare) and whilst the chemo is free, the meds/tablets aren't (god only knows why!) but that is a minuscule cost compared to the convenience of not having to travel 1/2hr+ to the appts, if we'd chosen to go public.
Most I've spoken to who've gone Public have also been seen & treated in a timely fashion too ..... tho a few weeks may seem a lifetime, as you wait!
Going Private 'can be' very expensive. I was out of pocket about $7000+ .... even having to pay a $500 pathology bill that for some reason wasn't even covered by Medicare ..... So when comparing the two - ask the surgeon if he is 'no gap' (and also the anaesthetist! ) They should actually give you a written quote.
My girlfriend on the Sunshine Coast is very happy with her treatment under the public system in Qld - including a hip replacement and follow up physio & ongoing hydropool exercise etc, following mets to her hip.
Try & take a buddy with you to all your appointments as an extra set of ears and support, as it is easy to miss things at the time. I also recorded all my early appointments too on my phone, so I could go over them again later, for the same reason. Write down any questions that you, so you can tick them off as you ask them. Better still, print off 2 copies & give the surgeon one, so HE can go thru them all too! I do this on EVERY appt with hubby's consults.
It sounds like you are pretty busy just now with the house painting etc - try & keep busy doing stuff you enjoy, to take your mind off the appts .... once you have a surgery date, you'll be relieved & once you've had your surgery, you will just feel SO much better knowing it is 'out' .... I know I was!
Feel free to jump onto this thread to see some 'other areas' that we have in the forum that may be of interest to you - we love seeing everyone's pets, gardens, art & craft - and we even have some funny bits for a giggle when we need them! Start from Page 1 on the Friday Funnies - there are some BEAUTIES! There's also a link to what to take to hospital with you & a link to tick lists re questions to ask of your Medical Team. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Take care & all the best for your Appt on Tues xx","body@stringLength":"3749","rawBody":"Hi @NikkiJ6 - Welcome to the forum - but sorry to see you join our exclusive club - it is a massive shock to the system to get the diagnosis (as we all know.)
You might like to join the Young Women's Group .... you can discuss everything there in total privacy.
Re Private vs public - I went private for the surgery just to 'get it done asap' as my story started in the Oct/Nov & the diagnosis wasn't til early Jan the following year - and as you know, the waiting really SUCKS! Many surgeons work in both systems .... so ask the different wait times if you go private vs public with them.
I went public for my radiation & paid nothing. I cannot fault it here in NSW (rural) and I've seen my Specialist Rad Onc every time (I've never seen 'randoms') which has been very comforting. My ongoing Medical Oncologist is also on the Public System (and was recommended to me by my Rad Onc) and she is VERY caring & I pay nothing. She is also my husband's Onc (who is on palliative chemo) and as we went private with him, (less travel) so we pay $110 per consult (of which a portion is reimbursed by medicare) and whilst the chemo is free, the meds/tablets aren't (god only knows why!) but that is a minuscule cost compared to the convenience of not having to travel 1/2hr+ to the appts, if we'd chosen to go public.
Most I've spoken to who've gone Public have also been seen & treated in a timely fashion too ..... tho a few weeks may seem a lifetime, as you wait!
Going Private 'can be' very expensive. I was out of pocket about $7000+ .... even having to pay a $500 pathology bill that for some reason wasn't even covered by Medicare ..... So when comparing the two - ask the surgeon if he is 'no gap' (and also the anaesthetist! ) They should actually give you a written quote.
My girlfriend on the Sunshine Coast is very happy with her treatment under the public system in Qld - including a hip replacement and follow up physio & ongoing hydropool exercise etc, following mets to her hip.
Try & take a buddy with you to all your appointments as an extra set of ears and support, as it is easy to miss things at the time. I also recorded all my early appointments too on my phone, so I could go over them again later, for the same reason. Write down any questions that you, so you can tick them off as you ask them. Better still, print off 2 copies & give the surgeon one, so HE can go thru them all too! I do this on EVERY appt with hubby's consults.
It sounds like you are pretty busy just now with the house painting etc - try & keep busy doing stuff you enjoy, to take your mind off the appts .... once you have a surgery date, you'll be relieved & once you've had your surgery, you will just feel SO much better knowing it is 'out' .... I know I was!
Feel free to jump onto this thread to see some 'other areas' that we have in the forum that may be of interest to you - we love seeing everyone's pets, gardens, art & craft - and we even have some funny bits for a giggle when we need them! Start from Page 1 on the Friday Funnies - there are some BEAUTIES! There's also a link to what to take to hospital with you & a link to tick lists re questions to ask of your Medical Team. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Take care & all the best for your Appt on Tues 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