Invasive Lobular Carcinoma Diagnosis
Mez_BCNA
Administrator, Staff, Member, Moderator Posts: 1,134 ✭
Moderator moved @LJS comment to own discussion post in 'Newly Diagnosed':
LJS Brisbane, Qld
I have just been diagnosed with early stage invasive lobular carcinoma in my left breast. The shock and horror of the diagnosis has left me a mess. For a very healthy person, I couldn't believe it. Always had my two yearly mammogram and no symptoms at all! The staff at Breastscreen Qld have been amazing...so kind and empathetic. I am now to make an appointment with the surgeon. Trying to stay positive and work out how to tell my family is so hard. This online group seems a wonderful support. Be strong everyone says. So hard.
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So sorry to see that you've joined our exclusive little club, @LJS ... the club no-one wants to join!
Yes, the shock/horror after the diagnosis is so real ... I felt the same & remember it well. Like you, I was totally healthy in body & mind at the time (less so now!) .... and my regular Breastscreen totally missed mine (as it was Lobular too & it can be more difficult to identify on Mammogram, specially with dense breast tissue, which I had at the time!) Feel free to join the Private Lobular Group, where we put lots of updates on ILC as we find them .... just click on this link & hit 'join'
https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc
Re telling your family (and friends) .... there is no easy way of doing it, but I found that an email was good, as it helped me keep control of the emotions (I'm a bit of a sook & cry very easily!) .... Also, you don't have to keep repeating it all, over & over ..... then let them know that you'll update them on details as they come .... so that you don't have to field so many phone calls. They will undoubtedly want to help you ..... and it could be things like mowing your lawn, picking up the kids from school/sport - or even supply meals ..... lean on them & accept any help they offer - as it is a win/win situation - they want to take pressure off you & it gives you a break xx. After your surgery, you may be limited in some areas for a little while - so all the more important to have someone there to do the household chores etc.
We have many members in & around Brisbane - they should be able to guide you on facilities nearby .... I know that they have free programs aim to improve your quality of life and help you navigate the sometimes very daunting cancer experience - so well worth contacting them (probably after your surgery.)
https://www.wesley.com.au/services/the-wesley-hospital-choices-cancer-support-centre
Also check out this thread for lots of info on the forum (including what to pack for hospital and also some tick sheets to monitor your mental and physical health as you continue thru your treatment plan.) We also have a bit of fun, showing off our art & craft, gardens, pets & even have a laugh (god knows we need a laugh now & then!)
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
Take plenty of deep breaths ..... take one day at a time, one hour, if needed ..... and do NOT use Dr Google! A lot of info on there is out of date & not relevant to your diagnosis - and will just scare the pants off you .... so stear clear of Dr Google!!
take care & all the best xx
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Hi @LJS
I had the same diagnosis same side, April last year. Mine was estrogen and progesterone positive and negative for herceptin. I clearly remember that kick in the guts feeling when I heard the word, it's cancer, come out of the drs mouth. From then on it was a whirlwind of appointments and tests. Once the plan was decided on things for easier. Take care and crumble and cry when you need, but also know that you've got this!4 -
So sorry to hear about your diagnosis @LJS - this is a testing phase. 🌼🌻🌸 I endorse the great points already made in the thread. Glad you have found this forum, there’s a wealth of care and practical support.Telling our family and friends is tough but take care and do so at a pace that suits you: there’s no right or wrong way. I sent the link to BCNA information sheets to concerned family and friends about the different cancer types, to read in their own time, so it eased the need for me to ‘educate’ them.
Hope the next few weeks get easier.2 -
Thankyou for putting my post in the right place. I was delighted to see responses so quickly. It makes you feel less alone and reaffirms that my feelings are common to most in this scary situation. Thanks so much!5
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Hi @LJS
I too had lobular cancer after having a clear mammogram only 12 months prior - they call it the “ sneaky” cancer as it often doesn’t show up on mammograms.
You have come to the right place - everyone in this forum “ gets it” it a way people who haven’t had this diagnosis can’t.There is also a wealth of info on the BCNA website .
I found the emotional toll of the diagnosis as challenging as the physical toll - I saw a psychologist specialising in cancer related distress for a couple of sessions and that helped.
Also if you listen to the Dr Charlotte Tottman podcasts on here - “What you don’t know until you do “ - they are very helpful - she is. Psychologist specialising in cancer related distress who herself got breast cancer.
Take care , avoid “ Dr Google” and feel free to post on here any time and you will find the advice and support a great asset.2 -
I am wondering how much the universe thinks you can cope with. I lost my husband two years ago so am still struggling to adjust to that life change. I broke my foot badly at Christmas and am still recovering. Now this diagnosis. This year is just awful!3
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I am So sorry to hear of your loss, @LJS - I lost my husband to cancer just over 2 years ago too, so know how tough it is I am slowly getting 'less sad' ... but it is still not easy.
Gosh, breaking your foot would have been horrible too - I hope you come good soon xx .... Yes - these things are surely sent to test us
You can do this, buddy xx. Chuck ANY question our way & we'll do our best to help you thru any speed humps - as we've 'been there, done that' already!
Take care3 -
@LJS it’s never easy to cope with the loss of our life partner mine has been gone 9 years in August. I’ve found keeping the good memories alive not his horrible fight against this rotten disease. It was frightening to be diagnosed only 15 mths later. With BC Since mine have since lost my dad and little brother to cancer as well. All different cancers. I have to remind myself that I have be been given extra time than what they each had with advances in medicine even since I was diagnosed.we live in a very lucky country re our health system.Try to keep looking on the positive side Its amazing where we can draw strength from.I often check out Friday funnies and Wise Words for a lift of spirits.You’ve found your way to a great source of support and information no question is too strange or dumb. We get it.6