Newly diagnosed over Christmas..

@Tidden You should ask whether you have Invasive Ductal Cancer (IDC) or Invasive Lobular Cancer (ILC). The former is more common and easier to detect than the latter.

The big question at this point is whether your cancer is estrogen receptor positive or negative. You need to know because if it is positive (which is generally regarded as a good thing) you get to take Tamoxifen or an Aromatase Inhibitor. These drugs can (not will though) reduce your chance of a recurrence.

After that, you want to ask if you are HER2 positive or negative. This determines treatment choices as well.

You might like to ask about the size of your tumour/tumours as well. This broadly determines the Stage of your breast cancer, along with whether it's spread to your lymph nodes.

The other thing that comes up is the Grade, 1 being slow growing, 3 being fast growing. Some doctors don't seem to discuss this much. Cancer's cancer whether it's 'busy' or not!

That's probably enough to worry about at this point, but it will equip you with the answers to the most common questions you'll get asked by those who understand breast cancer. K xox

Navigating the online community formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

@Tidden - the girls have explained the @ function .....   I also turned off the email notification as there were SO MANY, so now, I just look for the red numbers up the top - they indicate that other threads you've replied to have also had replies, as well as you being mentioned specifically.  

To turn off email notification, just click on the 'settings wheel' on the far right of your name (up the top) and choose Edit Profile.


Then choose Notification Preferences & 'unclick' all the emails!  Then, just keep an eye on the top line or the 'pop up messages' that show whilst you are online ..... and hit 'Discussions' to update any new threads etc when you go online.


Your cancer type will only be identified specifically from the tissue they remove during surgery when it is sent off to Pathology.  The Core Biopsy identifies that cancer cells are present (and in what percentage) but doesn't identify the 'type'. So the Pathology Report is the one you  have to wait for to give your BC a name.  Sometimes the HER results take longer (mine took a week longer) - whether the tumour is positive or negative to Hormones ...  which will dictate some of your other treatment after surgery chemo/rads etc.

ALL doctors and health professionals should introduce themselves (also wear a name tag as it is easy to forget their names in the stress of the moment.)  They should also undergo specialist training in the passing on bad news to patients.  

Working in the medical field yourself, I think you may be interested in Dr Liz O'Riordan's Breast Cancer Blog - she is a UK Breast Cancer Surgeon & was diagnosed 2-3 years ago, with a recurrence in 2018 ..... and her blog follows her entire BC 'journey' - and how shocked she was at how patients are treated in some circumstances & not believed (side effects etc) in others.    After my Biopsy Appt Balls-up for most of December - I sent the link to my Rad Onc & suggested that everyone working in the Cancer Institute at Port Macquarie, read the whole blog!   She also instigated the use of names on the surgeon's caps in theatre, so that patients can see them!!
http://liz.oriordan.co.uk/Blog/

Do you have a good friend to go with you on your Pre-Admission appt and when you are admitted?  My sister in law was a godsend - asking very intelligent questions on my behalf, as I was still a bit in shock .....Most of your tests will have been done by now - so it is just the paperwork, really, I think.  They may ask what other medication you are on - and to bring it with you, you'll be signing your life away on the dotted line ..... to be honest - I've forgotten what happened at mine!!  Just make sure you have all your medicare/healthcare numbers with you ....

Wishing you All the best xxx

We tend to put @tidden or whoever if we want to make sure the post is seen by that person.

I'm now tagging so that soldiercrab will see this when she's online and respond as she has some resources that are handy

@soldiercrab do you have the links for how to use the forum

Best wishes 

Putting the @ symbol before the person's username tags them so that they know they've been mentioned in a post.  If it's their original post, you don't need to do it but for me it's easier just to go with the one thing as I'm less likely to stuff up.  If you click on a person's username, you will get their profile page, eg. if you click on mine, you will see info about me including what I have put up regarding my cancer experience.  To add to any threads, just type in the box and hit "post comment" using the @username if you want to tag someone in particular.

Am I as clear as mud??

I have to say that I'm finding it very bizarre that doctors aren't providing basic information about the test results.  I know there was some information that I didn't find out until after rads but I suspect that was more because of the diagnosis fog than anything else as my team were always pretty open about things.  You may have to request that your GP is advised of all results as they won't necessarily be.  My onc was happy to do this but said that they don't do it as a matter of course because often GPs are rather alarmed at some of the blood levels, etc. during chemo.

Hi kmakm, the first doctor that told me I had cancer was a young pregnant woman, very matter of fact and unsympathetic. The breast nurse that was with me at the time and was beautiful, she held my hand and was full of empathy. The second doctor, a consultant, called me into his room but failed to introduce himself, - big mistake! I work in the medical field and expect staff to have the common courtesy to introduce themselves. Anyway, once we got over that hurdle we got on fine. He never had the results for what type of cancer I have and said they must not have done them. I told him they were done because I discussed this with the first doctor. He mentioned this to one of the nurses, she said the tests were done but didn’t have the results. I kinda feel like I’m in limbo. I have a pre-admission appointment on the 23rd of this month and will be armed with a list of questions. Any suggestions?

 I am unsure how to use this network. i.e. Some people refer to me as @Tidden, why put @ at the front of my name. How do you reply just one person? ‘Sister’ posted a comment above yours, do I reply here, or do I click on her name?

@kitkatb People often report a ripple effect from their diagnosis. Mine caused four friends that I know of to go and have a mammogram, some of them for the first time. Two of them had to go back but fortunately it was all good for them in the end. We can talk about awareness as much as we like, but there's nothing quite like the sting of someone we know getting sick. As I've said to some of my friends, I may be the first person you know who has had breast cancer, but I won't be the last.

What a frightening experience to have happen to you @"Patti J" to have an implant burst like that.  I guess it is all personal choice isn't it about whether to have a mammogram or not and about respecting peoples decisions.
Wow @Blossom1961  that's a big family history to have of bowel cancer.   

@kitkatb. I have never had a free mammogram. I have never used breast screen. I found my tumour myself. You could see it through my skin. I now have implants and never have mammograms because one of my implants was burst on mammogram.
One of my cousins, who was a well educated woman, was a nurse, midwife, and had five children, all of whom were breast fed, refused to have a mammogram. She lived to be well in her eighties

@kitkatb For some people it is easier to bury their head in the sand than face a cancer confirmation. Bowel cancer is rampant in my family and yet my aunt refuses to be tested even though her mother, all her maternal aunts and all her siblings had it. Doesn’t make sense to me but then I am not in her head!