All the tests to update new diagnosis
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Hi everyone,
Thank you all for your earlier messages.An update after today’s appointment with my surgeon.Two additional places that were biopsied last week - 1 area OK and the other the biopsy missed (it was very small and difficult to see with ultrasound) however, the surgeon is comfortable to leave that and MRI it again in 6 months - it was also on the opposite side to the other 2 areas of concern on the same breast.At the end of March I will have ultrasound and sentinel lymph node dye test. The next day a lumpectomy both breasts and one sentinel node biopsy (we did discuss mastectomy and lumpectomy and good cosmetic outcomes, too).The surgeon will take enough to ensure good margins are clear and also remove out anything nearby should there be anything the MRI didn’t show.2 weeks off work.After operation:Wait for operation pathology to talk next steps.Potentially radiotherapy would commence 6 weeks later.Breast care nursing team should be reaching out soon (surgeon said).Although it’s still a lot - I feel ok.It’s a good outcome from today’s appointment.Need to get through the surgery, the node biopsy and pathology and then we can go from there.One step at a time.
I do feel very confident with my surgeon.
Feeling like I might even sleep tonight!Thank you again for your care and support. Any advice or comments gratefully received.N 🌸5 -
It sounds like everything is going along nicely @Nicky123 and that you are at ease with what is going forward xx Great that you'll have a BC Nurse to chat to as well .... they will be your first port of call with any concerns post op ..... as well as us!
Just make haste slowly after the surgery - is your Work 'flexible' in case you need more time off? Do you have family/friends to help you at home afterwards and driving home from hospital? You won't be allowed to drive for a little while - and watch out for bumps in the roads ..... have a pillow to hug on the way home as the bumps really hurt if your boobs 'bounce' in the first few days. Silly things like hanging the washing, mowing the lawn in that first month ..... walking the dog, vacuuming ..... take up any offers of help!!
Having both breasts done will impact the use of your arms too (I only had the one done) .... So cook up a heap of meals & freeze them .... and put stuff you use 'lower' so you don't have to reach up for anything heavy in that first week.
In the mean time, keep as busy as you can - and even look at taking up a new hobby too as a distraction!! (I thoroughly recommend Ukulele!. LOTS of uke groups in Sydney.) I can help with ANY songs you like!!
take care xx1 -
Such great tips for me @arpie, thank you so much.There are things here I never would have thought of - including the pillow and help for more than 2 weeks.I have 2 weeks off and can work from home for as long as needed - which is so good.
I also came across a great free app to have family and friends help - struggling with asking but know I need to. It’s called, Gather my Crew. I can schedule tasks and people volunteer. I’m overwhelmed with everyone’s generosity already.I’m wondering what the sentinel node ultrasound and dye test the day before the main surgery will be like?Thanks again
nicky 🌸1 -
My breast care nurse called this week - what an amazing service and support. She was able to give a lot more information re the surgery and what to expect - and also that the ultrasound and dye injection appointment would likely last 3-4 hours (not the 1 hour of the actual ultrasound).Two members of the exec at work know now and they have been so supportive - this makes a big difference, particularly as I have only been in a new role for a couple of weeks (I’ve been at the org for 9 months).Can anyone comment on having a test pre surgery rE lymphoedema (Sozo test) to get a base line?
in other news, I have booked in a massage for Sunday PM to try and relax. Still exercising everyday.Thank you all in advance
Nicky2 -
You are very fortunate to have met with Breast care nurse. I did have an early SOZO test. But it was done only as a baseline. I had it done post op Mastectomy but prior to discharge. I attend a lymphomas and physio clinic for laser and have my SOZO checked and arm measured. I find it reasuring, and if there are changes would deal with that then. The laser is supposed to speed healing.
The SOZO test is nothing worse than standing on something like a set of scales and your hands go on a ledge. You stand still like that for about 30seconds. They input information re weight and height DOB. You feel nothing.
Ask while at hospital if they can measure you, they may not offer.
I didn't have a dye test. Because I had already had a positive for cancer lymph glands biopsy prior to surgery. Seen on US.2 -
I didn’t have a base line test before surgery, would have been a good idea. I did get a bone density test before starting hormonal therapy, which was important. I had a mastectomy and lost 17 lymph nodes but found my arm movement recovered very quickly. Best to take it slowly to begin with but as you’ll find, no two people react to treatment the same way! Best wishes.2
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@Abbydog and @Afraser thank you both for sharing your thoughts and experiences.Good news that the sozo is easy - that will make for a nice change after the testing poking and prodding (necessary I know) so far. They are talking rebaseline as you’ve said.I went to shop for some post surgery bras today and lost it in the change rooms. It was a lot of things all at once - how awful and unattractive the bra made me look and feel, how this was just the beginning and how I have always just taken my breasts for granted (maybe not the right words).
I have to apologise if this sounds insensitive - given all of your experiences. It’s just how I was feeling.I left that shop and marched myself to Kmart. I figured if I didn’t get it done today, I wouldn’t go back. I ended up finding some cheaper and ok (still not amazing but less surgical feeling) ones.I wondering if the bras are just about being front fastening and no underwire or do they need to be really supportive too (how much is enough?)? I already wear bras with no underwire and they are soft. I’ll follow up with the breast care nurse this week.It’s a roller coaster and I am sure this will be one of many times I feel like this. I’ll also consider seeing a Counsellor at some stage, I’d say.Ps I also bought a chocolate Easter rabbit at Kmart. I’ve been off chocolate since last year - so thought, this calls for it. I’m sure I sound silly!).Thank you both again,
Nicky 🌸2 -
@Nicky123
Gradually, you’ll feel more confident about doing things, at least some things, your own way. I wore an underwire bra for a year after my mastectomy - large boobed, with a persistent seroma (not common!) and only found a good supportive non-wire bra when I was finally fitted for a proper prosthesis. My ‘normal’ bra was perfectly comfortable, didn’t impact at all on my scar and was seen by umpteen professionals!
The probing and poking goes on a bit - I once joked that if someone walked up to me in Collins Street and said, just slip off your things so we can have a look, I’d probably do
it without thinking!
A counsellor can be a a good idea - your medical team are focussed, properly, on your body. Some tlc for the emotions and the brain are in order too - in the scheme of things, a bit of chocolate is perfectly fine.2 -
Hi everyone - this time in two weeks I should be home from surgery. I will ask my breast care nurse however, I’m wondering a couple of things -
Pathology post lumpectomy (both sides) and sentinel node biopsy (one side) - how long does that take to come back? Is this where they classify things and that helps decide treatment (radiotherapy previously discussed but my surgeon is taking one thing at a time… surgery, pathology and then…).We have also discussed if she finds more when she’s there she’ll remove - and also no more than that and mastectomy without discussion (so that would mean additional surgery).I am staying overnight due to both sides but any comments, thoughts or details you can provide are really appreciated.
many thanks
Nicky 🌸0 -
Hi @Nicky123 ...
Pathology results 'time' can vary - from memory, mine took a couple of weeks, but it seemed like 6 months - hopefully yours will be quicker xx ......
The surgeon may suggest what he 'thinks' will happen relative to your results - but it is only after you see the Medical Onc and Radiation Onc will you will know for sure what the treatment path will be, as that is their specialist area. xx Make sure you ask your surgeon for a paper copy of your results, for your records.
Your Breast care nurse will definitely be your 'go to' person for answers to your queries .... and us
take care & all the best for your surgery & results xx0 -
Thanks so much for the quick response and advice @arpie - it’s so comforting to hear back from everyone here - and you’ve been providing me with lots of reassuring and helpful info over the last couple of weeks, thank you.It’s a bit of a lull at the moment - but keeping myself busy with work and also some good downtime and exercise as well.Getting a chronic illness plan tomorrow (I think that’s it) and saw the chiro today. Massage coming Sunday. Feels indulgent but might be a while between massages.Speak soon - hope you’re all having a good week.Nicky 🌸1
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My pleasure - having 'been there, done that' - I will always remember how daunting it all seemed at the start - totally unknown territory & taking your top off for all & sundry ..... and joining BCNA was the best thing, as we 'get it'!
Re our medical team, it is their job - but to us, it is our lives! And the ripples spread out & it is amazing how many people are affected by YOUR diagnosis!! Mind you, I didn't tell everyone straight away, either - some (even family members) didn't find out for 12 months! LOL. I just couldn't be bothered re-explaining it to everyone every day - plus it was stressful!! I tried to get rid of as much stress as I could.
ooooh - enjoy the massage!! Grab whatever you can get!
It's supposed to be really hot in Sydney today - I'll be out on the water in my kayak, in a cooling breeze xx
Just keep doing what you love doing - now & forever! xx
take care xx0 -
You’re so right rE who we let know and others - it’s quite exhausting, isn’t it @arpie?
For me - getting through the surgery, having pathology results and knowing what is next will be a better time to let more friends know - in the meantime I am feeling very well supported by a smaller group.I really feel so grateful and comfortable here - knowing as you say, that you all get it and I can be unfiltered.Enjoy your kayaking. I am at the GP waiting to get a chronic illness plan and will go for a swim at the end of today if I can - another warm day.Best wishes And thanks again,
Nicky 🌸2
