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!

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 xxHave 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 tottmanAlso 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#latestWhack 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-womentake care & all the best with your ongoing appointments xx

That’s a wonderful update @lorns well done you! And here’s to a happy NY.That’s a great observation about how you feel now. A friend “warned” me that people can feel adrift. This forum has been a help 🌸☺️🌻!In my case I decided that I would treat myself as a “restoration” project, because after 14 or 15 months of treatment, I admit I felt pretty depleted! It gave me time to rebuild before immersing myself into the busy-ness of everything! Your post - the enjoyment of Christmas and the beach and the mullet - gave me a terrific smile 😃 to start the day. Sending you lots of positive energy to manage through the hurdles and hi fives on getting to this point! 🙌 ⚡️💐

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 😘

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.”🌺

Thanks @Blossom1961have done this and added your comment also :)

Information Overload! | Online Network

lorns
Member
12 months ago
@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.
iserbrown
Member
12 months ago
@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
lorns
Member
11 months ago
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.
cranky_granny
Member
11 months ago
@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 job
Locksley
Member
11 months ago
@lorns sorry to see you here. Once step at a time. Lean on people who offer you any support with errands, party planning, home help. Your port will make Chemo easier was dodgy veins. Be kind to yourself.
oseikka
Member
11 months ago
@lorns thinking of you, you are a super woman. Delegate as much as you can. I'm sure your daughter and your mum all they want is to have you there. It's the oxygen mask on the plane thing, focus on you right now and let others (who i'm sure will be grateful) to step up and organise things. Sending you hugs and positive vibes.
lorns
Member
10 months ago
Seems about time for an update...
My daughter's birthday party went off without a hitch and she had a wonderful time. Though my knitted knocker disappeared up towards my shoulder over the course of the party and no-one thought to tell me I was majorly lopsided :#
Port-a-cath was installed and is now all healed up. It was much more painful than I expected from how the procedure was described. I'm getting used to having it there and negotiating hugs with kids whose heads are at that height.
Enjoyed a weekend away with the family at the beach which was wonderful, cold but wonderful. Cabarita Beach (northern NSW) is just stunning and reminds me so much of my absolute favourite place, Point Lookout on North Stradbroke Island.
I had my first chemo treatment last Tuesday. I'm on the AC-T protocol. I went in with low expectations, and hoping for the best. As the infusion finished, I suddenly felt exhausted. I had some nausea but was easily managed with the meds and finding foods that didn't set it off. Helped to not get hungry, hunger definitely is not good for nausea. I had horrible joint aches for the first couple of days. The first 3-4 days were the worst, the fatigue was pretty intense. I'm now at day 10 and feeling pretty good - gratefully so.
I had to go into emergency twice to get things checked out - of course these things happened on the days that my GP doesn't work so couldn't see them. The first was after my face & neck turned bright red - and I mean beetroot, bright red. No clear answer for it, likely a reaction to something - either meds or my skin deciding it suddenly didn't like something I was putting on it. The second, I woke up with a very sore ear and throat, spent all day in emergency waiting for bloods & swabs. Again, no idea what it was but sent home this time with antibiotics for just in case.
The emergency visits were a real head-f*k for me. I've always been the sort of person who brushes things off, works through sickness - I have a real intolerance for being sick :D (ironic, right?) and having to get every little thing just makes me feel like a big hypochondriac. I mean, there were people who were having real life & death emergencies while I was there, and I'm sitting there wasting people's time with a sore ear - it felt so dramatic. It's going to take some getting used to.
In anticipation of the hair loss, I enjoyed a final trip to the hairdresser and got it cut short. Then dyed it hot pink for a bit of fun :) I've booked in for a Look Good, Feel Better workshop - which looks like a lot of fun (for anyone coming across this, here's the link - https://lgfb.org.au/).
Anyway... that's where I'm at so far. Grateful for having a fairly mild time of it so far. It'll be good going into the next one with an idea of how I'm going to respond.
arpie
Member
10 months ago
I am so glad your daughter's birthday party went off so well. hehe, I bet no-one noticed your knitted knocker going north! ;)

Portacaths tend to be easier in the long run - did they give you a swab to rub on it before you got to the clinic, to deaden the pain when the needle goes in? If not, ask about it xx Drink plenty of water in the days following each infusion xx Eat what you can, when you can - meal times don't 'count' any more. ;)

No, you are not a hypochondriac @lorns - you've been told to seek medical advice if things go 'wrong' ... so well done you. You do need to be proactive from here on. Well done on chopping your hair & doing the colour!! That would be a surprise to family & friends!! ;) The look good, feel better workshops are terrific.

Check out this post to see if you might be interested in some lovely bright caps to wear (specially with winter kicking in now!) Hubby used to sleep in his beanies when he lost his hair to chemo. @LeighLeigh has them available xx
https://onlinenetwork.bcna.org.au/discussion/26560/chemo-caps#latest

take care & all the best for your ongoing treatments
lorns
Member
10 months ago
Thanks @arpie - I was sure to put my husband on boob duty after that to let me know if it was travelling. I managed to get a silicon prosthetic a week or so after which doesn't head off in strange directions :D

Thanks for the pointer, I haven't looked at caps to wear yet so this is helpful.

I'm trying to hard to get over myself re the "chemo-chondria" (as I'm calling it). A nurse in emergency said "Welcome to cancer, it's a barrel of fun!" - made me smile :)
unicorn3
Member
10 months ago
@lorns glad to hear you are doing well. I’ve read your story and many others but have never posted my own. Yours reminds me of mine so much and your age is similar, I’m 48 but my treatment is the opposite of yours. I’ve already done the 6 months of ac/t chemo, t first which was much easier than ac, then surgery, mastectomy (8 weeks ago) and 20 lymph node’s which all came back completely clear. I had the port put in before chemo and now just waiting for 3 weeks of radiotherapy as mine too was in the middle of chest and neck area also.
I’m glad your daughters party went well I remember being right at the start of diagnosis at my daughters 7th birthday last year but had to pretend everything was normal as no one knew yet.
It’s tricky managing cuddles with the port and then the mastectomy, my daughter was always asking which side she could cuddle me on 😆. Thankfully now I can just about manage either side
i found the ac chemo the hardest of all this so far, nausea and headaches and just general fatigue but I found I felt good just in the week before I was due to go back for another round. Small meals often and salty foods seemed to help me, rest when you can which is easier said than done when you have kids
I hear you on the emergency/hospital stuff I was the same, never got sick, these surgeries were the first time in over 25 years I’d had surgery or even been in a hospital (apart from kids of course)
Best of luck with the rest of your treatment