oestrogen and DCIS

Della

Hi All,

I am new and has been detected with DCIS and oestrogen 3+ and other specification that I dont remember, anyone has the same issue. I am still waiting for the surgery to remove the cancer and still dont know when since it is public hospital, so depressing.
Actually how long is the waiting time for the surgery normally ? is private faster than public. I am new with this ...

Afraser

Hi @Della and welcome.

Take a deep breath, it’s all new and you’re dealing with umpteen things and feelings at once. Surgery will depend on what needs to be done, and assessed urgency. Many people want their cancer removed immediately, that’s understandable but  not all cancers develop quickly. So not all surgery happens immediately. Make a list of all your questions and if you are able to take someone with you to your next consultation, it can be really useful. That person is probably better at recording what”s said, in time you’ll become pretty expert too! It’s a shock but Australia’s medical system is very good, and developments in breast cancer treatment are almost constant.  Public or private. Best wishes. 

Julez1958

Hi I was in the Private system and had my surgery within 4 weeks of the diagnosis.
it’s all a whirlwind at the beginning.
Our medical system is world class and whether you have your surgery / treatment in the public or private system you will have a great experience.
there is lots of info on this site and no question is too silly.
welcome 🌺

iserbrown

@Della

Here's a link or two to the BCNA website to help you and maybe formulate questions 

"Types of breast cancer" https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

"Surgery | Breast Cancer Network Australia" https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/

arpie

SO Sorry to see you here, @Della - but welcome to the club that no one wants to join!   I'm glad you've found us - as we've been thru it too, so we can all relate to your feelings.  

I went private for surgery (but it can leave you with quite a bit out of pocket expenses), then public for radiation, which was free ....   You can ask your surgeon if they work in the private system as well as public - just make sure you ask what the fees are for private - or it can be a bit of a shock!   Everyone wants it done as soon as possible .... Do you have a surgery date yet?  I was lucky & had my surgery 2 weeks after my diagnosis, but some have longer waits ... .

Definitely have someone with you for your appointments and even consider recording the meetings on your phone, to refer to later, as it is very difficult to remember everything that is said xx

When you have a few minutes, check out these links for a bit more info on the forum .... yes, we even have a giggle too.

Make sure you avoid Dr Google as every BC case is different & a lot of info there is irrelevant to your condition.  Also, try & keep your sense of humour 'up there' as it will help you get through any tough days - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner' 
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
 and if into your garden, a Gardening post as well!! 
https://onlinenetwork.bcna.org.au/discussion/comment/186078
And we now have a Fishing post, as that is one of my passions!
https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics

If you have 'fur kids' - put their pic here & describe their funny antics ...   https://onlinenetwork.bcna.org.au/discussion/comment/92526

We even have a funny Xmas page .... feel free to add any that you’ve seen - it is not that far til Xmas!!!
https://onlinenetwork.bcna.org.au/discussion/20086/christmas-funnies-put-them-up-here-for-a-laugh#latest

When you have some time ... check out the blog by a female British Breast Surgeon who went on to develop Breast Cancer, with recurrence.  She was amazed at just how much it changed her life, both mentally and physically ... and validates all our own ‘aches and pains’ ... if your Onc doesn’t believe you when you discuss side effects - get THEM to read this too!  

http://liz.oriordan.co.uk/

As you haven't had your surgery yet, we have some posts here on what you may like to take with you to hospital, to make it 'easier' on you - I definitely recommend ear plugs & eye masks, as hospitals are lit up 24/7 and are noisy places!  
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

And for your post op check up & annual checkups, here are some ‘tick sheets’ to help you put your questions together for your medical team.  (Make sure you click on the documents at the BOTTOM of the post, as the others are only sample pages.)
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1

Take care, and all the best for your upcoming appointments re surgery! xx

Keeping_positive1

Hi Della, I am sure you will be OK.  But do expect a longer wait in the public system.  I waited 8 weeks before surgery and had two types of breast cancer, one was DCIS, estrogen receptive positive, and the other was HER2 positive Stage 3.  At breastscreen recall I was diagnosed with it already in the lymph nodes.  I was terrified, but despite the 2 month wait until surgery I am still here.

The public system unfortunately has a long wait, and in that regard we do not have the best timely treatment, but I am sure you will be OK.  We need to have patience when dealing with our public system, and cancer is no exception.  

My GP warned me of the longer wait and I am grateful she did as then I didn't have unrealistic expectations, but you will get great treatment when your turn comes.  All the best with your upcoming surgery.  Best wishes with your treatment.

4Coco

Hi everyone - I'm a week into receiving my diagnoses and have an appointment next week with Surgeon to discuss my options.   I've found that questions raised by others are helping me gain a better understanding of what lies ahead.  I'm Oestrogen Receptor positive and unsure if I decided on a double mastectomy would I still need hormone therapy?

arpie

Hi @4Coco - Welcome to the forum - sadly, that one club you never thought you'd have to join!  But we are here to help smooth out some of the bumps - and answer any questions that you may have along the way (if we can.) xx

It's all a bit of a shock for you at this point in time ..... as I said in my post above (please check it out for info on the blog & even questions to ask) make sure you don't use Dr Google ... it may only confuse you.   Rely on your Medical Team for accurate information.  Your surgeon should have a Breast Care Nurse (if you aren't introduced to one on your first appt, ask about it, as they are often the 'go between' with your ongoing care.)

Feel Free to jump onto the 'Newly Diagnosed' section yourself - so that any info that is put up relates to you and your specific condition .....  it will be easier to follow as you go ahead .... you can update after your appt with the surgeon & surgery as well. 

We can also get the mods @Mez_BCNA to move it across, so that you have your own thread!

In the mean time ... that's an interesting question!  I am not sure I've heard that one asked before - a good one to ask your surgeon & Onc for a definite answer!  If you still have your ovaries & haven't gone thru menopause yet .... they should still be producing oestrogen .... so it could be a yes - but you definitely need to raise that one next week.

Write down ANY question you have - I even printed my questions off & gave it to my surgeon to go thru with me (I had a copy too) as I knew I'd be too emotional to read them out myself! But I am a real sook! LOL .... 
Tick them off as you go - that way, you know they've all be answered too.  It is easy to forget some, even if you've got them in front of you, if you get side tracked to another issue! 

Try & keep busy in the lead up to your surgeon's appt next week - as a busy body keeps the mind busy too.  Otherwise, the brain can go into overdrive.  This disease mucks with the brain as much as it does with the body.    

Take care & all the best for next week xx

4Coco

Hi arpie   Many thanks for your suggestions regarding the questions I will want to raise at my appt.  Do I follow the link to ask the mods to move my question over as you suggest?

Mez_BCNA

Hi @4Coco I have created your own thread for you, just click on the following:

  https://onlinenetwork.bcna.org.au/discussion/23878/oestrogen-receptor-positive-treatment-question/p1?new=1

If you need any support please feel free to call our Member Support Team 1800 500 258.

arpie

Terrific, @4Coco.  @Mez_BCNA has received a 'prompt' and will most likely move your question across, hopefully today.  That way this thread can be Della's thread & you'll have your own as well. xx

If there is anything I can help you with .... feel free to shoot me a PM (personal message) by clicking on my name - and then the 'envelope' to the right .....  you can also read my 'story' there, if you like!   

 

Della

Thank you Afraser,Julez1958,iserbrown ,arpie ,Keeping_positive1 .
thank you for your advises, these advises cooling me down and I hope don't over thinking the bad things that would happened while waiting the surgery.  @Keeping_positive1, I have DCIS, estrogen receptive positive and the MRI said the cancer has not gone in to lymph node but still I worry because it still in my breast and has not been removed yet. I worry this cancer reach the lymph node while I am waiting for the surgery schedule. 

I have my USG and mammogram on 13 Sep, Biopsy 16 Sep, saw the doctor on 17 Sep and she requested MRI
MRI is scheduled on 27 Sep and saw the doctor again on 29 Sep and she will organise the surgery for another 2 or 3 weeks depending on the queue since it is public hospital. 
I feel this is very long waiting or usually like this for public hospital ?

Keeping_positive1

@Della I can understand you are worried about the DCIS, estrogen receptive positive tumor could reach your lymph nodes by the time you have surgery.  I can tell you that the breast I had the DCIS, ER + tumor at diagnosis was not in my lymph nodes and did not reach my lymph nodes in the 2 months I waited for surgery.  It was the HER2+ tumor on the other breast that had already reached my lymph nodes at diagnosis.  In my case it took just over 4 weeks for the clinical staging, then I was placed on the Category 1 list, which meant the public system then have to do the breast surgery within 4 weeks.  Please push for a date for surgery, because perhaps slightly longer now due to COVID.  

It is often the clinical staging that can take 4 weeks in the public system before we get placed on the Category 1 list.  As you have seen it is the drawn out line up of the tests and appointments that make its usual for the longer wait in the public hospital system.  I am still on a waiting list for knee surgery and it has been 2 years already. Which State are you in?
Best wishes.

arpie

@Della - from detection to surgery, my wait was just under 3 months .... the tumour is unlikely to grow much bigger in that time - or they would have organised surgery asap .... 

You've had quite a bit done in the last month since detection & all going well, you'll hear from your surgeon soon with your surgery date.  If you don't hear by early next week, maybe give their office a call & just 'check up' on it's status? 

Have you been given access to a Breast Cancer Nurse yet?  Often you are introduced to them at your Surgeon's office at your first meeting?  You could give them a call, as they would probably be able to access your file too.

Just try & keep busy & yep, try not to 'overthink it' (difficult tho it is!)   Take care xx

Carissa_BCNA

Hi @Della

I've included a link to another online network discussion about the Optimal Care Pathway for breast cancer. This document includes expected timelines from diagnosis to treatment. https://onlinenetwork.bcna.org.au/discussion/23851/optimal-care-pathway-for-people-with-breast-cancer#latest

Hope this may help. Best wishes for your surgery.

Della

Thank you Afraser,Julez1958,iserbrown ,arpie ,Keeping_positive1 .
thank you for your advises, these advises cooling me down and I hope don't over thinking the bad things that would happened while waiting the surgery.  @Keeping_positive1, I have DCIS, estrogen receptive positive and the MRI said the cancer has not gone in to lymph node but still I worry because it still in my breast and has not been removed yet. I worry this cancer reach the lymph node while I am waiting for the surgery schedule. 

I have my USG and mammogram on 13 Sep, Biopsy 16 Sep, saw the doctor on 17 Sep and she requested MRI
MRI is scheduled on 27 Sep and saw the doctor again on 29 Sep and she will organise the surgery for another 2 or 3 weeks depending on the queue since it is public hospital. 
I feel this is very long waiting