Newly diagnosed
@Vix1963 message moved from the activity section by BCNA moderator. Hi peeps Last 7 days been a whirlwind- HISTORY-24 years ago I had two lumpectomies ,one from each breast - both benign. Have h...
Forum Discussion
Transferring my answer from Activity to here ...
Oh my gosh, @Vix1963 - I am so sorry to see you join our exclusive club - but you are in the right spot for support and comfort, when you need it - plus information from those who've 'gone before' xx
Mine was lobular as well, Grade 2. It wasn't picked up by my mammogram just 3-4 months earlier - my GP found it 'by accident' when doing other checks on me .... so lucky me! Lobular is particularly difficult to 'see' on mammograms, specially if you have dense breast tissue, as the tumour shows as 'white' and the more dense breast tissue ALSO shows as 'white' ..... making it very difficult to 'see' on the films, as it is white on white. Back in the 80s, when I was first 'investigated' due to lumps that I'd found, they said I had 'lumpy breasts' and it was most likely cysts. I think the 'lumpy breast' was an euphemism for 'dense breast tissue' but I wasn't advised of that at the time. 🙁 We have an Invasive Lobular Group that you might like to join, where we put up any new information that we find regarding Lobular .... as it is a particularly 'sneaky' one, as it doesn't always show as an actual 'lump' .... until it is bigger.
I am not in Vic, but I've heard excellent reviews of the Austin - and I am sure that Frankston has an excellent reputation too. Having family and friends nearby is always a bonus (altho just now no visitors are allowed in NSW hospitals due to covid ...) If you are having your heart surgery in Austin, you would then be more familiar with it & how it works ....
Re losing hair with chemo - some do, some don't. My husband has just had 9 months of chemo & didn't lose his hair... then changed to a new regime of chemo in Dec & sadly, lost most of his hair 2 weeks later. 🙁 Ask about using a Cold Cap - I understand it can be a bit uncomfortable ... but if it helps you keep your hair, well worth considering. Gosh, if your Onc says you 'may' lose your hair - it could be an option to have it cut off 'early' and made up into a wig? Or you could donate it
https://www.cancervic.org.au/get-support/wig-service/donating-your-hair
Only your medical team can fill you in on the time frame, but I have no doubt it will kick off soon.
Take a trusted friend or family member with you to your appointments & even consider recording the meetings on your phone - so you can go back over it later on.
If you check out this link, it gives a lot of information on the whole 'forum' - and a link to 'tick boxes' at the bottom, to help you formulate questions for your Surgeon/Oncs. Print your questions off & give them a copy & you keep a copy, tick them off & take notes, as they address each one. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
The first month (or 6) since detection/diagnosis is always a big blur .... I hope you have supportive family & friends to lean on .... put up any questions that you have - and we'll do our best to address them. xx.
Wishing you all the best for both your procedures, and ongoing treatment xx
Mine was lobular as well, Grade 2. It wasn't picked up by my mammogram just 3-4 months earlier - my GP found it 'by accident' when doing other checks on me .... so lucky me! Lobular is particularly difficult to 'see' on mammograms, specially if you have dense breast tissue, as the tumour shows as 'white' and the more dense breast tissue ALSO shows as 'white' ..... making it very difficult to 'see' on the films, as it is white on white. Back in the 80s, when I was first 'investigated' due to lumps that I'd found, they said I had 'lumpy breasts' and it was most likely cysts. I think the 'lumpy breast' was an euphemism for 'dense breast tissue' but I wasn't advised of that at the time. 🙁 We have an Invasive Lobular Group that you might like to join, where we put up any new information that we find regarding Lobular .... as it is a particularly 'sneaky' one, as it doesn't always show as an actual 'lump' .... until it is bigger.
I am not in Vic, but I've heard excellent reviews of the Austin - and I am sure that Frankston has an excellent reputation too. Having family and friends nearby is always a bonus (altho just now no visitors are allowed in NSW hospitals due to covid ...) If you are having your heart surgery in Austin, you would then be more familiar with it & how it works ....
Re losing hair with chemo - some do, some don't. My husband has just had 9 months of chemo & didn't lose his hair... then changed to a new regime of chemo in Dec & sadly, lost most of his hair 2 weeks later. 🙁 Ask about using a Cold Cap - I understand it can be a bit uncomfortable ... but if it helps you keep your hair, well worth considering. Gosh, if your Onc says you 'may' lose your hair - it could be an option to have it cut off 'early' and made up into a wig? Or you could donate it
https://www.cancervic.org.au/get-support/wig-service/donating-your-hair
Only your medical team can fill you in on the time frame, but I have no doubt it will kick off soon.
Take a trusted friend or family member with you to your appointments & even consider recording the meetings on your phone - so you can go back over it later on.
If you check out this link, it gives a lot of information on the whole 'forum' - and a link to 'tick boxes' at the bottom, to help you formulate questions for your Surgeon/Oncs. Print your questions off & give them a copy & you keep a copy, tick them off & take notes, as they address each one. https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
The first month (or 6) since detection/diagnosis is always a big blur .... I hope you have supportive family & friends to lean on .... put up any questions that you have - and we'll do our best to address them. xx.
Wishing you all the best for both your procedures, and ongoing treatment xx