Could really use some inspiration from a positive experience
Comments
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Thanks so much @DebP for sharing your story - yes it seems that the ILC 'club' is a cosier one than some of the others. Did they diagnose your positive nodes pre-op? I'm a bit confused about the 'node' bit right now. I've read about some women who have had sentinal node biopsy prior to breast surgery and others who have the node biopsy during surgery - I guess these are questions I'll have for my surgeon next week.
Yes I will be absolutely much more on track when I have a treatment plan and I love the parting words from your oncologist. I know I have a difficult time ahead but I'll definitely get through it, especially with so much support
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I had an enlarged node on the left so it was biopsied pre op- positive so axillary clearance first surgery. The right sentinel node was biopsied with surgery- I went back for a second op to clear my right axilla and for further resection on the left as my margins weren't clear. I have 2 friends that have been diagnosed sine I have - they both had sentinel node biopsy during surgery.
If I can offer any advise its don't do too much research - you will come across things that will scare you senseless and might not be pertinent to your case. Breast cancer treatment has come along way. In a way we are lucky that so many resources have been plugged into research.
You are doing ok. Focus on one day at a time, one baby step at a time. xxx
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@Deb P xxxxxxx1
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That is great news you are clear for mets. I was just as surprised when I got my results a few years ago. I thought for sure I would be riddled with it but no, just a bit of arthritis in my thumb and that was it!
Nowadays doctors like to keep all the images and reports to themselves in their computer systems and we dont often get to carry the dreaded envelope of results. If you want a copy at any time to keep for yourself, your GP doctor can access and print out that sort of thing. It did help me when a cyst showed up in my last mammogram. I asked the doctor was it in my original tests but she couldnt be bothered scrolling back that far. I had a copy at home and looked it up and yep the cyst was there at original diagnosis.3 -
Hi East Mum. I am fairly new also nearly 2 months since diagnosed.. Each and every one of us have a different Journey some have a hard time, but I have found some things help me as everyone is stressed to the Max at the start as we don't know what is ahead of us.
1. Don't Google, go on Breast Cancer site only and look on this Forum as lot of people have similarities. McGrath Breast Cancer Nurses are awesome to talk things through.
2. Tell yourself, I will listen to my Surgeon as he is the one with the knowledge and will put you on your right track for your Journey, also ask him questions and concerns you have when you see him or her, start writing them down and take them when you see them.
3. Sleepless nights are terrible, I now try and I say TRY to tell myself I cant change things so I have to go one day at a time and I try to tell myself before I go to bed what is happening next day not wonder if, as that gets my mind racing.
4. Also when appointments get changed, expect it, it can happen as it does, and then you wont have a meltdown like I did.
I wish you well on your Journey.
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@Eastmum. Hi ya, I was diagnosed ILC Jan 5, right boob. Core biopsy on Dec 29th had shown it as cancer. I saw the surgeon on Jan 15th, Sentinel Node Biopsy on Jan 16th and the Lumpectomy performed Jan 17 with sentinel node removed removed as well. I get my pathology results tomorrow. My FINGERS AND TOES ARE CROSSED.
It is interesting that you have a chronic cough ... cos I do too ... don’t know why. I also had 3 colds in the lead up to this diagnosis... requiring antibiotics ... when I haven’t had colds for years. 3 on the trot including over Xmas!
i was surprised the post op dressing for my Lumpectomy is as small as it is!! Try not to get too stressed (she says knowingly!!) Tho it is very hard not to. Decide early who you want to tell ... and those you don’t. You don’t have to tell everyone (even family) unless it is in YOUR best interests. You will find that most will be incredibly supportive.
It is scary ... confronting ... and we’ve all been there .. and we are here for you now. The info and support you get on THIS forum is pretty well the only one you need to follow. Ask away ... someone will assist with a helpful reply.
Lots of your friends etc May start offering advice ... drink iodine, cut out sugar, protein, stop drinking wine .... ain’t nothing you do just now that will change things in the short term ... so ignore it.
I found that a small log shaped pillow to help support my boob when lying on my sides .... preventing it from hanging. 10ndays late and 8 can sleep on my tummy ... my preferred sleeping position.
I hope you have good friends and family to support you as this really helps too.
cheers. Roberta
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Thanks for the encouraging words @Mollygirl
@Brenda5 - I've actually got all my films and reports - I haven't left the imaging rooms without them - the only report I don't have is the biopsy report, which went straight to my Dr as he was interstate and wanted to call me as soon as he received them. Hoping to get a copy this week!
thanks for the tips @Julesjourney - I'm afraid I've googled way too much already LOL - can't help myself! But now that I'm over the staging scans, I'm a bit more relaxed although I'm sure I'll be googling again as soon as I've seen my surgeon. You're right though - nothing beats this site! It's real info from real, amazing people, and the support here is absolutely incredible. I"m so grateful!
Hi @arpie - all the best for your pathology results! My GP told me my cough could be due to reflux, but I don't have any other symptoms. They've found ILC in both sides (only a very tiny one in the RHS) so I'll probably be heading towards a bilateral mastectomy, but I haven't had my post-biopsy consult with the surgeon yet, so I'm hoping to get all the options and info sometime this week. Thanks so much for the advice and tips. I am absolutely blessed with incredibly supportive friends and family - I haven't told anyone (apart from my husband and kids and one very close 'survivor' friend) - waiting for a treatment plan so I'll have all the answers to the million questions I know I'll get, plus hopefully I'll be able to have reassuring news for all of those people who will be in shock to hear - I hate the thought of causing my friends and family to worry. xx2 -
@Eastmum I don't know if anyone's said this (it's 4am and I'm not sleeping but can't be stuffed going through the posts)... When you're ready for people to know you might find it's easier if you don't have to do the telling. I know that I just wanted to bunker down and not be always having to handle people's well-meaning questions. My husband told his family (my immediate family are all gone), friends and colleagues, I told 2 close, key friends and asked them to spread the word but tell people I didn't want calls all of the time asking about the cancer. I also told my boss and asked her to do the same. I used facebook messages to inform extended family as well as some friends who l don't see often. One of the best things I did was to set up a blog so that I could post updates about what was happening to me and how things were going. I made sure that the url for this was passed on to those who wanted to know. My husband set it up for me on wordpress while I was in hospital. This means that I can read people's comments and messages when I feel like doing it and I don't have to respond straight away, or at all, if I don't feel like it. And everyone feels they're in the loop - I think they also feel that they don't have to make that effort of ringing up and knowing what to say.
All the best with results for you and @arpie.5 -
@Eastmum. @Sister. Thanks for that.
I only told my close friends/family initially cos I knew I would Blub if I met them at the shops .. particularly my uke group buddies, who have been incredibly supportive - one even cooking 3 meals for us, post op! If you don’t let them know, they may be even more upset when they DO find out!
When my husband was diagnosed with stomach cancer in 2010, he didn’t want anyone to know ... but I was a wreck keeping up the pretence. He had most of his stomach out .... and is going great guns even now!! Eats whatever he wants and was competing in triathlons again just 6 months later!!
The ‘blog’ is a great idea .... to inform all at the same time .... I will look into that, as it may be a long term event! Xx2 -
@Dany1 .... Thanks ..... Really good news for me .... Clear margins on the Tumours & all 3 nodes also clear, tho I WILL have to do 4 weeks of radiation & possibly Temoxofin afterward (but not confirmed.)SO happy ... this is as good as I'd hoped.
@Eastmum How are you going? I hope all is going well.
All the best to everyone ..... it isn't easy - but all going well, a good result is achievable. xxx
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@Sister Thank you for your best wishes. So far, so good!
How do I go about doing a blog? It will sure save a lot of messages & emails!
@Julesjourney How are you going, Jules?0 -
@arpie My husband set mine up for me while I was in hospital so I can't talk you through it. I can tell you it is with wordpress.com.au and there would be instructions on the site. I think that he selected some sort of privacy option (security through obscurity) so that it would be less likely to come up on a general search. So, it's not completely private in that someone out there could stumble over it, but it's not public either. The first time a friend posts a comment, it does not go on the site until I have approved it. After that, that person's comments just go up automatically. I've had so many friends tell me that they've found it really good. They want to know what's happening but don't want to bother me. It also serves as a kind of online diary. The url for mine is www.scullen.com.au/gayesblog/ if you want to have a look. Gaye2
