What a couple of weeks I have had. After being called back to Breastscreen NSW (amazing service and staff), I had the battery of tests at the post mammogram assessment including 3 biopsies. Originally a lump and calcifications (left) and Stage 2 DCIS and calcifications (right) in between Stage 1-2 DCIS. To the surgeon (amazing, feeling very confident with her) and then an MRI yesterday to rule out a higher stage. Called back today for another 2 biopsies (left again, completely different places) and another MRI. Lymph nodes are looking ok.Back to the surgeon on Monday AM to discuss treatment options when pathology is back. I am so grateful for how kind all the nurses, radiologists and doctors have been / even when I have ‘lost it,’ almost fainted or felt nauseous etc etc. Taking it one day at a time and trying not to predict or worry. It all happens so, so fast - so much to take in and to recalibrate every visit - something new and something more.I know that all these tests and checks will help to work out exactly what is happening and then formulate the best treatment plan moving forward. I don’t have any questions at the moment - well, lots but know I just need to wait. I do want to say how helpful it’s been reading the posts and discussions. I’m sure I’ll be back for more in the future. Thank you, Nicky (51, Sydney)

Great to hear the margins are clear @Nicky123 and all the best for your appt with your surgeon, he will then refer you on to the Rad Onc, as well as the Medical Onc re the ongoing treatment, and possibly a lymphodema specialist too, so you are aware of the exercises to do to hopefully prevent lymphodema take care & all the best - let us know how you go .... make haste slowly - but get back (as you are able) to doing things that you love doing, to keep yourself active & engaged, both mentally & physically xx

Breast care nurses are there for everyone diagnosed with BC. They do not come to your house but they help you manage all your appointments and listen to any concerns you may have. You should have already been given one if they have one in your area. Ask at the hospital or look up McGrath BC nurses online and it should tell you if there is one in your area. All the best

Hopefully you get the results that you hope for. Perhaps you will be offered a good BC nurse, if not ask about them. They sound terrific, sometimes.

Hi @Nicky123 I had my surgery at at St Vincent’s Private here in Sydney and although there was a breast care nurse I never spoke to her until a couple of days before the surgery and then she visited me in hospital a couple of times .My medical team were great and the care I received in hospital was excellent .I have heard great things about the Mater.

@arpie these messages mean so much to me - it’s been such a massive two weeks or so and the support in this group - yourself included - had been so comforting and helpful. Of course, kindness makes me quite teary at the moment, too! Thank you for your comments and suggestions above - the thread is a really good idea. I was born at RNSH - I’m really lucky that for treatment, I live within 10-15 mins of both hospitals. Yes - I have a good group of friends as well as my sister in law. I took a friend to get results from Breastscreen and will take another friend to my surgeon on Monday for more results and treatment planning. I’ve been taking notes each time but a voice memo recording is such a good idea - as I definitely miss things. Thank you for your suggestions rE the other groups, resources and activities - I’m going to check them out over the weekend. I’ll update here on Monday night.thanks again for everyone’s support, ideas, experience and kindness. It’s making me feel like my feelings are normal in such a turbulent time.Nicky xps had to withdraw from uni today (studying masters of adolescent health and wellbeing part time). Just couldn’t manage full time (new) job and all of this! #superwomannot It did make me a bit sad though - but ultimately sensible and very necessary. I had to get a medical certificate and it’s still very confronting using the words ‘breast cancer.’

All the tests to update new diagnosis

Afraser
Member
2 years ago
One thing at a time is a very practical and sensible approach. Remember that hormone blockers are recommended but not forced on you, if the side effects are too difficult you can stop. There is insufficient research on whether shorter periods of hormone blocker medication has some benefit- even after five years I could not find any research that said seven years (for example) was better than five if not as good as ten years. Side effects vary immensely - joint pain and aches are quite common and I had none at all. Other side effects may vary with age or your own health levels. One of the better side effects of bc is trying things you never thought you would - same applies to hormone blockers. Good luck and best wishes.
Nicky123
Member
2 years ago
@Afraser thank you for your encouragement. I must admit, the hormone blockers (tamoxifen in my case) are really worrying me.

I have a few months before I have to go there and I know I’ve managed everything so far - but these seem to be causing me such concern.

Of course - not everyone has side effects. One thing at a time. I’ll recovery from Friday’s surgery, get through the radiotherapy and then next steps.

Oh - and have my mirena removed 🤦🏻‍♀️

Thank you for sharing.
Nicky 🌸
Afraser
Member
2 years ago
Early advice and checking is important for lymphoedema - sometimes it’s short term if addressed quickly. I’ve done the full ten years on hormone blockers, glad to have stopped but glad I did it too. Take heart, this is all
doable.
Nicky123
Member
2 years ago
@arpie thank you so much for your encouragement and advice - so gratefully received.

I’ve booked an appointment with the onc Physio at the hospital, she’s going to look at my mobility (I had a baseline and post first surgery Sozo test) and also give me some massage tips.

Thanks again -

Nicky 🌸
arpie
Member
2 years ago
Great to hear the margins are clear @Nicky123 and all the best for your appt with your surgeon, he will then refer you on to the Rad Onc, as well as the Medical Onc re the ongoing treatment, and possibly a lymphodema specialist too, so you are aware of the exercises to do to hopefully prevent lymphodema

take care & all the best - let us know how you go .... make haste slowly - but get back (as you are able) to doing things that you love doing, to keep yourself active & engaged, both mentally & physically xx
Nicky123
Member
2 years ago
An update today - after not getting clear margins on one side (30/3), I had some genetic testing (negative) to decide mastectomy or re-excision.
I had the second surgery last Friday and found out today - margins clear.
13/7 meeting with my surgeon to discuss next steps - radiotherapy and removal of mirena. I know hormone blockers are pending and can’t wrap my head around that yet.
One thing at a time.

My surgeon has been great - including this last time, rather than have me wait for 2 weeks for my pathology appointment - she messaged me on holidays with the good news.

Learning so much here, from the breast care nurse and the focus is recovering from surgery this week then onto next.

Thank you all.
Nicky 🌸
Nicky123
Member
2 years ago
Thank you for sharing more of your experiences @FLClover - it’s really helpful. X 🌸
FLClover
Member
2 years ago
@Nicky123 it is, thank you 🐣☺️🥰. I did the same genetic testing and it came back negative, which was a relief, but I’d already had the double mastectomy. And then radiation on top of that as well 😄. But mine were different circumstances, so you shouldn’t need all that. Either way, you will know the right thing to do if you are calm and confident. Enjoy the rest of your weekend ♥️.
Nicky123
Member
2 years ago
Thank you @FLClover - I’ve had some lovely downtime and also some some research on here to consider next steps. Over the initial shock of last Thursday and have some questions - but will wait for the results of the genetic testing and then go from there.
I really appreciate your message and hope your long weekend is also going well?
take care,
Nicky 🌸
FLClover
Member
2 years ago
Those are good results @Nicky123, considering. You do have decisions to make, but for the time being focus on enjoying the Easter holiday as you said, and resting from the surgery. The right answer will come to you at the right time ♥️.