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","kudosSumWeight":0,"postTime":"2017-01-10T19:32:32.000-08:00","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:lymphoedema","text":"lymphoedema","time":"2025-03-25T05:01:55.402-07:00","lastActivityTime":null,"messagesCount":null,"followersCount":null}}]},"timeToRead":1,"currentRevision":{"__ref":"Revision:revision:18423_1"},"latestVersion":null,"metrics":{"__typename":"MessageMetrics","views":1805},"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":"Hello everyone. It has been ages since I have posted. Since this site was re done I no longer got notifications, then 2 major surgeries in 2016 and life kind of took over. I was diagnosed with Lymphoedema about 8 weeks ago. Everthing was going along swimmingly. I had lymphoedema but only to a fairly minor degree then one morning about 8 weeks ago woke with a swollen hand and arm. Such a shock. So have had the intensive therapy with the bandages and now have a compression sleeve which just keeps the lymphedema controlled to a point. My struggle is that I was just being able to move on after treatment and surgeries, then this. The constant reminder every day is there now and am really struggling. Is there anyone else in a similar situation? ","customFields":[]},"Conversation:conversation:18423":{"__typename":"Conversation","id":"conversation:18423","solved":false,"topic":{"__ref":"ForumTopicMessage:message:18423"},"lastPostingActivityTime":"2018-11-02T01:00:04.000-07:00","lastPostTime":"2018-11-02T01:00:04.000-07:00","unreadReplyCount":64,"isSubscribed":false},"ModerationData:moderation_data:18423":{"__typename":"ModerationData","id":"moderation_data:18423","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:18423_1":{"__typename":"Revision","id":"revision:18423_1","lastEditTime":"2017-01-10T19:32:32.000-08:00"},"ForumReplyMessage:message:18432":{"__typename":"ForumReplyMessage","id":"message:18432","conversation":{"__ref":"Conversation:conversation:18423"},"author":{"__ref":"User:user:13942"},"revisionNum":1,"uid":18432,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-newly-diagnosed"},"subject":"Re: Lymphoedema and recurrence fears","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:18432"},"parent":{"__ref":"ForumTopicMessage:message:18423"},"body":"I totally hear you @Andij, I am now almost 5 years on from my mastectomy and axilla clearance and had only very mild lymphodema for a few years, which seemed to be under control, but over the past 6 months things have changed a bit (particularly after I broke my other arm and couldn't do the daily self massage) and I'm seeing my physio fortnightly at the moment to have the massages, am wearing a compression sleeve almost constantly, doing the exercises and have had bandaging. Things are kind of stable, but certainly not back to normal as my arm and hand swells at the slightest increase in temperature (so not good right now!).
Having lymphodema feels like a kick in the guts after all we've been through and I struggle physically and emotionally to deal with it. Thankfully my physio is very sympathetic and is confident we can get on top of it, but I admit I do get sick of it all.
Hopefully things will settle for you soon. Best wishes, Jane xx","body@stringLength":"976","rawBody":"I totally hear you @Andij, I am now almost 5 years on from my mastectomy and axilla clearance and had only very mild lymphodema for a few years, which seemed to be under control, but over the past 6 months things have changed a bit (particularly after I broke my other arm and couldn't do the daily self massage) and I'm seeing my physio fortnightly at the moment to have the massages, am wearing a compression sleeve almost constantly, doing the exercises and have had bandaging. Things are kind of stable, but certainly not back to normal as my arm and hand swells at the slightest increase in temperature (so not good right now!).
Having lymphodema feels like a kick in the guts after all we've been through and I struggle physically and emotionally to deal with it. Thankfully my physio is very sympathetic and is confident we can get on top of it, but I admit I do get sick of it all.
Hopefully things will settle for you soon. Best wishes, Jane xx","kudosSumWeight":0,"repliesCount":0,"postTime":"2017-01-10T20:58:46.000-08:00","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:18432_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:customTheme1-1744167669796":{"__typename":"CachedAsset","id":"theme:customTheme1-1744167669796","value":{"id":"customTheme1","animation":{"fast":"150ms","normal":"250ms","slow":"500ms","slowest":"750ms","function":"cubic-bezier(0.07, 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Accept to continue or {url} it directly on the provider's site.","buttonTitle":"Accept","urlText":"watch"},"localOverride":false},"User:user:2574":{"__typename":"User","id":"user:2574","uid":2574,"login":"NettyRuz","deleted":false,"avatar":{"__typename":"UserAvatar","url":"https://onlinenetwork.bcna.org.au/t5/s/nkyiu94732/m_assets/avatars/default/avatar-12.svg?time=0"},"rank":{"__ref":"Rank:rank:39"}},"ForumTopicMessage:message:56812":{"__typename":"ForumTopicMessage","uid":56812,"subject":"Get it out now or wait and think?","id":"message:56812","revisionNum":1,"repliesCount":23,"author":{"__ref":"User:user:2773"},"readOnly":false},"Conversation:conversation:56812":{"__typename":"Conversation","id":"conversation:56812","solved":false,"topic":{"__ref":"ForumTopicMessage:message:56812"},"lastPostingActivityTime":"2024-02-17T00:48:04.000-08:00","lastPostTime":"2024-02-17T00:48:04.000-08:00","unreadReplyCount":23,"isSubscribed":false},"ModerationData:moderation_data:56821":{"__typename":"ModerationData","id":"moderation_data:56821","status":"APPROVED","rejectReason":null,"isReportedAbuse":false,"rejectUser":null,"rejectTime":null,"rejectActorType":null},"Revision:revision:56821_1":{"__typename":"Revision","id":"revision:56821_1","lastEditTime":"2024-01-19T16:22:36.000-08:00"},"ForumReplyMessage:message:56821":{"__typename":"ForumReplyMessage","author":{"__ref":"User:user:2574"},"id":"message:56821","revisionNum":1,"uid":56821,"depth":1,"hasGivenKudo":false,"subscribed":false,"board":{"__ref":"Forum:board:general-newly-diagnosed"},"conversation":{"__ref":"Conversation:conversation:56812"},"subject":"Re: Get it out now or wait and think?","readOnly":false,"editFrozen":false,"moderationData":{"__ref":"ModerationData:moderation_data:56821"},"body":"I think there is one very important factor here and that is everyone's case is different - there are 3 different cancers in the breast, (in your case hormone positive) the stage you are at & things like clear margins or not. You absolutely need to ask for more info or discussion from your surgeon because your scan and biopsy indicates if they do lumpectomy, wide local or mastectomy and when you do treatment if it all. You need to ask - what is the risk if it's just lump removal. In my case, my margins were not clear and I could have insisted on another wide local excision to save my breast (and I just got a recon anyway and my boob is nicer than ever!) but then the risk for cancer returning was high. The surgeon will absolutely have a recommendation but will also empower you to make the final call. They can't just decide mid-operation if they remove the whole boob or just the lump because it needs your consent. You won't be seen as a pain or the 'annoying patient' if you ask to chat some more, I know it's hard but it is your right to do so. Hearing everyone's story helps but it can be overwhelming and confusing and they are after all their cancer journey not yours. ","body@stringLength":"1193","rawBody":"I think there is one very important factor here and that is everyone's case is different - there are 3 different cancers in the breast, (in your case hormone positive) the stage you are at & things like clear margins or not. You absolutely need to ask for more info or discussion from your surgeon because your scan and biopsy indicates if they do lumpectomy, wide local or mastectomy and when you do treatment if it all. You need to ask - what is the risk if it's just lump removal. In my case, my margins were not clear and I could have insisted on another wide local excision to save my breast (and I just got a recon anyway and my boob is nicer than ever!) but then the risk for cancer returning was high. The surgeon will absolutely have a recommendation but will also empower you to make the final call. They can't just decide mid-operation if they remove the whole boob or just the lump because it needs your consent. You won't be seen as a pain or the 'annoying patient' if you ask to chat some more, I know it's hard but it is your right to do so. Hearing everyone's story helps but it can be overwhelming and confusing and they are after all their cancer journey not yours. 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