Information Overload!
lorns
Member Posts: 19 ✭
Hello lovelies,
I was diagnosed just over a week ago with invasive breast cancer in my left breast, after finding a lump. I went for a mammogram 2.5 weeks ago where they took core biopsies. Since then it has been an absolute whirlwind of appointments, questions, information dumps and just trying to find a minute to breathe and process it all. Of course, all while managing 2 littles on school holidays, home and work.
I am just reeling from all. How do you even begin to work through it?
Not much of an introduction, I know. Not really sure what to say, other than Hi!
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Hi @lorns , new here too! Diagnosed end of March with Invasive Lobular cancer in left breast. Came out of the blue, as I just went in for (will admit overdue) annual mammogram.
I completely get what you are saying - GP delivered bad news, straight to breast surgeon the next day and the past week has been more biopsies (double checking a couple of other suspicious areas)and scans. Last scan due this coming Monday, so hopefully by mid week I will know exactly what I’m dealing with. 100% agree there is so much information, and my mind is spinning! But I am so grateful that there is. I’ve started using the journal app and have a notebook as well. There is so much to consider (both medically and financially) and going by how quickly the ball has started rolling for me, I am gathering that quick decisions will be required.
Wishing you the best possible journey,over what I am calling my “bump in the road”. We’ve got this 😘8 -
Sorry to see you joining our 'special club' ... the one we never thought we'd have to join @lorns. Feel free to ring our Helpline on 1800 500 258 & have a chat - and if you find yourself feeling really sad - ask your GP or your medical team to refer you to a counsellor. Just talking to someone else about your fears & feelings, really does help. This disease mucks with your brain even MORE than your body, I reckon xx
Have you been assigned a Breast Care Nurse yet? They are another source of information & assistance.
It's a real roller coaster ride - and our emotions are up & down. Until your surgery is over, it is as if you are on a conveyer belt going from one appointment to another .... It is totally normal to feel sad & upset - check out Charlotte Tottman's Podcasts - she is a BC Psychologist who had a double mastectomy & chose to remain flat, so she 'gets it'. She has a very natural & easy speaking style & the podcasts are very easy to listen to. Click on the 'show the 22 tracks' and click on No 13 (which is actually the first one!) Or you can just listen to them in random order.
https://soundcloud.com/search?q=charlotte tottman
Also check out this post, which has lots of information preparing for your surgery, as well as tick sheets down the bottom to follow your mental and physical health to print off & take with you to your appointments (it is often easier just giving them a copy, than talk about it.) Consider recording your appointments on the phone, too, to go back over later on, as it is easy to miss bits whilst pondering what's just been said.
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest
Whack up ANY questions that come to mind and we'll do our best to help you ..... and if you keep this thread going as you continue your
active treatment, it will become a 'diary' that you can look back on later.
We also have a Young Women's group that you may like to join - I am not sure how active it is, but just reading thru the previous threads & comments may help with you & your young ones. Click on 'Join'.
https://onlinenetwork.bcna.org.au/group/10-young-women
take care & all the best with your ongoing appointments xx4 -
@Nickii2 what a whirlwind it is!! Your journey is so similar to mine, only I found a lump that triggered an overdue mammo. Also left boob, and also investigating a suspicious lymph node. I have an appointment with my surgeon mid-week to find out what is next.
Isn't it a bit much that on top of the disease aspect, we have to be thinking about finances and work etc. I'm just working my way through all the various resources, the Journey app sounds interesting.
@arpie thank you for all of that! Love a good podcast so this might be a good way to filter through everything. I'm 45, so not sure I'm a fit for the young women's group 😄 I have a breast care nurse, who I should talk to - still working out who to talk to about things.3 -
@lorns it’s everything coming at us at every direction. And I think the waiting to find out the final diagnosis and the way forward, even though everything really has been booked in so quickly, it is so bloody stressful. Send all the positive vibes I can to you for the best outcome possible xxxx
ps. The app is My Journey (my bad 🤦♀️)Also just out of curiosity are you having a nuclear bone scan done as well? I am having this done tomorrow along with cat scan, not seeing too many people dung the same. I’m sure its because the surgeon is being cautious !2 -
I was diagnosed October last year, routine mammogram and no symptoms. IDC (of no special type) 2cm with 1 lymph node involved. I am coming to the end of my chemo. I had a nuclear bone scan and CT. I was told it was standard to check for any further spread, and also the bone scan is used as a baseline for future reference as chemo can cause bone density issues, so I fully expect I'll have to have another one when I'm finished. My bone scan was fine, and I had a few unrelated things picked up on my CT, which were investigated further, but I was assured were not cancer related. I had a cyst on my liver which is apparently very common, and a cyst on my ovary which also common, and a very small nodule in my lung which they are 99.9% sure is historic either environmental or from an old chest infection, but they will keep and eye on it just to be sure. It hasn't changed during chemo, which they said was good sign it was nothing to worry about. My surgeon said that it is very common to find all these things, but once they find them they double check. It's pretty overwhelming to start with as you get rushed through so many tests, which can result in more tests and scans, but it does start to calm down and once I had a plan for treatment I felt a lot better, more in control, and my anxiety levels dropped a lot. The waiting was the worst for me. Be kind to yourself, and definitely make use of the support available if it gets overwhelming, the McGrath nurses have been brilliant, and helped organise all my appointments in the rush before Christmas so that I could get started on chemo before all the consultants went on Christmas breaks.6
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Hi Lovelies, I am also newly diagnosed (1 week ago), with mixed lobular & ductal in L) breast. I’m a 43 yr old mum to 2 gorgeous girls & work as an RN (and & am only a month into a new role with my nursing ☹️). I really wasn’t expecting this. I’ve had a few sad days, but I’ve been putting on a brave face for the kids & my friends, but today I think it hit me again. I’m still waiting for my appointment with the surgeon. Thinking of you all xoxo4
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@Katie46 @Nickii2 no bone scan so far. Isn't it weird what the scans picks up? I discovered a small hernia near my belly button and a cyst on my liver.@ruralmum2 it comes in waves, one minute you're aok and can talk about it no troubles; and the next a teary mess. Big love to you.3
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Hi @lorns
My GP told me to stay away from “ Dr Google” and to stick to official sources like the cancer council and BCNA.
There is a wealth of info on this website as well as on this forum.
Take it in bite size chucks starting with newly diagnosed stuff.
My GP also suggested I take my husband or another trusted person to all early and important medical appointments as another set of ears is very helpful .
Finally, I started a daily journal to write down all the important stuff including key dates.
Take care and there is no question too silly or trivial to post on here - we all “get it.”
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@Mez_BCNA Can you please put @ruralmum2 on her own discussion so that people can respond to her. I don't want her to get lost in this conversation.
@ruralmum2 This diagnosis rattles us in a way that no-one else understands. I went into an automatic zombie mode. Holding it together sometimes makes things worse. Try to focus on anything else and do whatever it is you enjoy doing. Once you have a treatment plan it starts to get easier. Sending big hugs2 -
Thanks @Blossom1961have done this and added your comment also
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@Julez1958 my Dr told me to avoid Dr Google also - and it's such a great piece of advice. I've been listening to the BCNA podcasts on my morning walks which have been really informative. I'm trying to focus what I look for / listen to on the part of the process I'm at - to keep it in small chunks.
I'm off for surgery next week. My lymph node biopsy showed cancer cells but they didn't have enough tissue to determine if it was breast cancer or lymphoma. They'll be removing the dodgy lymph node, doing a sentinel node biopsy with both dyes (interested to see how blue I go), and a simple mastectomy. Once pathology is back, we'll know whether I need chemo and/or radiation.
I've decided to put off decisions about reconstruction until I've got the cancer sorted out.
I think things will really sink in after surgery, even with all the tests and appointments, it still feels kind of unreal.3 -
@lorns
https://www.reclaimyourcurves.org.au/information-sheets.html
The above link takes you to an excellent site with regard to information for Reconstruction.
Also, the site has Information sheets, eg: What to pack for Hospital
Best wishes as you negotiate treatment. Once a plan is formulated a little ease comes into the day as the buts, what ifs et cetera are being sorted
Take care
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Time for an update... hard to believe a month has gone by.
I went in for a mastectomy and sentinel node biopsy on the 17th April, then swiftly went back under to have more lymph nodes removed as the sentinel node showed spread. Strangely, that hit harder than having the initial surgery - the thought of a second surgery was not at all in my thinking.
Pathology found 13 individual tumours ranging from 2mm - 13mm, a mix of grade 2 & 3, a large mass of DCIS - making my cancer both multifocal and multicentric, and extensive lymphatic invasion in the breast. Happily, the extra lymph nodes taken we're all clear of cancer.
I went home 10 days after the first surgery - thankfully with drains out. I couldn't fault the team at Mater Private in Brisbane - everyone I came across was just wonderful.
I'm healing well, despite a seroma and preparing for the next stage. Due to the pathology, I'm going for 6 months of chemo - AT-C protocol which is 2 rounds of different drugs - then on to 3 weeks of radiotherapy of the chest wall including lymph nodes in the centre of the chest and throat, and finishing up with hormone blockers.
It's my daughter's birthday this week and she's having a party next weekend. It's my Mum's birthday next week. I'm getting my port-a-cath installed this week - the wonderful nurse who did my PET scan told me I should ask for one if I needed chemo as I have difficult veins. I have to tell work I need more time off.
It's a lot.
I'm trying hard to think short distance, the next couple of days rather than into the more distant future. There's so much to think about if I do that.
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@lorns thanks for the update.It always a real bummer when things alter midst everything we already been through. I call it a pot hole in the road of life. It will get repaired it may not be perfect and hopefully it does the job2
