It’s new so I’m new

FreckledGalaxy

Hi everyone,
I’ve been diagnosed with DCIS on October 3rd. Left side.
By my next appointment on the 22nd I’m supposed to decide on whether to have a lumpectomy or mastectomy. 
And then surgery is meant to happen on the 31st.
Was anyone else’s doctor this quick in action? 
I feel like it’s such a short amount of time to try to learn as much as possible to make an informed decision.
He also said that I could get an implant, but that’s a whole other thing to think about too. 
Is a silicone implant covered by Medicare?
If I wanted to have a double mastectomy by my own choice, would Medicare cover that as well? (And an implant on that second breast too)
I’ve got about a thousand questions running through my head at any time.
Thanks for reading.

iserbrown

@FreckledGalaxy

Welcome to the forum!  By the sound of your post you are in a world of who the, what the!  One of our ladies on here @soldiercrab has put together this information:

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information
or support please call 1800 500 258.  The Helpline is open Monday,
Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
till 9 pm EST.

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

 Also, 

https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

and consider joining one of the groups for further information

https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

There's a bit to absorb but once you have your My Journey Kit and taken a few deep breaths you will be able to better understand and others will come on here and help you through

Take care

kezmusc

Hi @FreckledGalaxy,

Welcome to the forum.  You will find a wealth of knowledge and warmth on here.  If you're lucky things move quick.  Less time to worry yourself into a tizz.
I had my surgery pretty much a month from diagnosis.  I could have had it within the week but I wanted a lumpectomy so we had to chase around and find the primary tumour as it was being a pain in the butt to locate.

It's a hard choice to make for some.  Mine was dead easy, I just wanted to avoid a mastectomy if at all possible, no questions, no doubts.
 Some people choose the other, some choose to remove both and reconstruct or not.  It just depends on how you feel about it. 

Keep asking questions.  There will always be someone on here that has been down the same or similar path to give you some insight.

xoxoxo

Afraser

Hi@FreckledGalaxy

It can all be very fast - i saw my GP about a slightly sore breast on Wednesday, surgeon on Friday, diagnosis confirmed the following Tuesday and surgery the following Friday - 10 days in all.

I only had a choice between a partial mastectomy and a full mastectomy, so I found it relatively easy to go for the full mastectomy. You need information from your surgeon about type of cancer, etc to help your decision. As you are no doubt finding, there is a lot of variation in cancer type, treatment and options, so what someone else has had or done doesn't always help. A lot of the information provided already will assist you, but you may need to put together a list of critical questions for your surgeon which will help you decide. Having your say about your body is important, but right at the beginning nearly everyone feels completely overwhelmed, and lacking in information. That's why a list - and another pair of ears to accompany you for your next appointment - is really helpful.

If you decide on a mastectomy you may be able to choose between immediate or deferred reconstruction. You don't need to have reconstruction straight away (or at all), which will give you more time to think about options.

If you are contemplating a  double mastectomy, the important thing is to get as much information as possible as to what your risks are of cancer in the other breast. This too is very variable. In my own case, I decided not to remove the other breast, as I have no family history of cancer, no worrisome gene (at least not one that's been identified  yet!) and my oncologist thinks that a recurrence or 2nd cancer is more likely (if at all, it may never happen) elsewhere in my body rather than my remaining breast.  I just had my 6 year test, all clear, so feeling pretty good about his advice so far! Again, you may consider a second mastectomy at a later date - in the first few weeks, you are scarcely in a position  to know how you will feel about losing one let alone two breasts. Information you receive may result in you feeling confident that treating one breast is sufficient.  But if, as some people have experienced, you suffer anxiety over a period of time, you need to take that into consideration too. 

It's very hard but if you can, try dealing with one thing at a time. That way you can concentrate better on the decision in hand. If you don't have to make a decision yet, there often is no problem about waiting until you can give that problem the attention it needs. Keep asking questions till you get clear answers - there are no silly questions in this game. Deep breaths,  you can do this. Best wishes.

Vangirl

Hi @FreckledGalaxy Just wanted to mention that unless you have an immediate reconstruction, you may find yourself on a lengthy waiting list, either with no boob or with just an expander in, unless you can afford to go private. Something to consider. 

Sister

Hi @FreckledGalaxy and welcome. I had my diagnosis from Breastscreen on 5/12, my appointment with the surgeon on 6/12, then various scans and tests.  Partial on 21/12 unfortunately followed by a mastectomy on 8/1.  It all happened very quickly which was fine by me.  I was always going to have to have radiation - not sure if that's the reason for not being offered any reconstruction option at the time.  Surgeon told me it would not be considered for at least 12 months.

kmakm

Diagnosed Monday. Lumpectomy Tuesday. Very happy with that.

Trussy

Hi @FreckledGalaxy, my diagnosis to surgery was 9days.
I felt overwhelmed by the quickness of it all but was pleased to get on with things, there are so many decisions to make initially its normal to feel anxious. I'm now 5weeks post op after double mastectomy (by choice). It was always a no brainer for me that i would have a double and i don't regret it. I had expander implants at the same time, and once I've finished my chemo they'll be swapped to nice soft ones. I feel good when i go out with the reconstruction been done. 
My surgeon told me that medicare covers both breast removal, he worked in both systems. 
Take care 

arpie

Hi @FreckledGalaxy  - My lumps were found last Nov, followed by U/S and Mammogram in early Dec, biopsy Dec 27th & diagnosis confirmation Jan 5th.  Most specialists were on hols til Jan 15th - so I saw my BS in Sydney on Jan 15th, had Sentinel Node test Jan 16th and surgery Jan 17th for breast conserving surgery.

I was pleased it all happened quickly once seeing the surgeon - being rural, the original tests took longer to get done tho.

Ask the surgeon about his fees ..... not all are covered by medicare or private Health Funds (even if top tier!)

All the best with your decision making - do you have any friends/relatives who have had BC?  Have you been allocated a Breast Care Nurse yet?  

Or just whack up as many questions here as you like - and you will get informed replies xxx  

Maybe Send a message to @Giovanna_BCNA & ask to become a member of the Breast Reconstruction Group:

https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

Kiwi Angel

The whole process was incredibly quick for me - I had 3 surgeries and had started chemo within 2 months. 

Vallerina

Hi @FreckledGalaxy
My dcis was found after calcifications were seen on my mammogram in November 2016.  I was called back in December  2016 and diagnosed with dcis in January 2017. I was originally  booked  for lumpectomy in February?  then  an mri the day before I was meant to have the surgery showed that lumpectomy was not possible due to the size of the dcis.
 They didnt do recon in our regional hospital so I had to start again at the bottom of a waiting list at a different hospital in Brisbane . I didnt have my mastectomy till halfway through March so sounds like I had the longest wait of 3 months. But the wait gave me time to fully understand as much as possible what was going on. I still felt that there were very few answers till the pathology came through after the mastectomy.
I desperately wanted immediate recon.
 I found out  as Vangirl said, if  you want recon (not everyone does) if you are offered immediate recon but decide to wait  the waiting list can be 2 years or more as you are no longer a category 1 patient once the cancer is out , so you go to the back of the queue. Immediate recon has helped me move on very quickly as I had pure DCIS which meant no radiation, chemo or other therapies so within a fairly short period I was all fixed, reconstructed and healed, ready to get on with my life.
Yes the silicone implant is covered by medicare.
I am a public patient in Qld. Double mastectomy was never offered. BRAC testing was never offered since it was "only" DCIS and no family history etc.  Your circumstance may be different. I have talked on here to other ladies treated at the same hospital as me that have had totally different experiences. You can see my single side implant pictures and story  in the photo stories in the choosing breast reconstruction group. 
Good luck

Chris

I was only 6 days from path results at GP till surgery. My GP had already made me an appointment with a breast surgeon the following day, before she had even told me the results. That was a for a Thursday, and I had my first surgery the following Monday.

Stork

Hi I was told at Breast Screen on a Wednesday it was B/C on the following Friday I saw my GP the next day Saturday I saw the Surgeon and was operated as a private patient on the following Friday at the time I was told there was 6 week wait to be treated as a public patient, by that stage I was freaking out and wanted the cancer out ASAP It was the right decision for me but I had major out of pockets expenses

kezmusc

It's a shame you had a shitty time @Joannie but not all public patients have to put up with that.  Yes, the reconstruction waiting list is very long I agree and really needs to be addressed.  If you feel you are not getting the best treatment all you need to do is speak up. Nobody has to put up with it. There are processes, nurse unit managers, nurse navigators,  liason officers that will get it sorted. 

 To lump the whole public system and all hospitals into the same category is not appropriate, especially for people to read who have no other option than to go public. We are incredibly lucky in Australia to have the public system that we do and the breast cancer treatment train is a very well oiled machine here.  

I have heard some shitty stories from the private sector as well, it depends who's running the show I guess, like everything.

I am not sure which hospital you went to (which sounds like it needs an overhaul) but Cat 1 where I am goes on the urgency of the referral not after the planning. If you have cancer you are cat 1 from day 1. It may take a few weeks to get any extra scans, tests etc sorted out but as soon as you are ready you are in. Theatre lists are shuffled and rearranged to make room for urgent cases.

No, it's not the Hilton but all our ladies and gentlemen with breast or prostate cancer will be give a private room (we have 17) unless there was not another single bed available in the whole hospital . In wich case the bed manager, NUM's of the surgical wards, breast care nurses and theatre booking department would all work together to fix the problem.  Never would a female be put into a shared male room for something like that or vice versa.  Everything is planned the afternoon before for the next day as to what patients are having theatre and where they need to be on the ward in relation to the surgery they are having and any other existing health problems they may have.

There are many  surgeons who work both public and private as do some  nurses.  I am sure they don't go to work saying "I don't care about these patients because they are public patients but tomorrow I am working private so I'll care about them" . 
The vast majority of nurses (sure there's a grumpy one here and there) I have worked with or been treated by in any hospital are good, hardworking, caring people who really don't get paid enough for the job they do and some of the asshole patients they have to deal with.  

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Blossom1961

I have gone public and I cannot praise the system here enough. BUT, it does depend on the individual hospital/state/etc. I am in Geelong. I had appointments/tests 9 days out of ten straight after I was diagnosed and then straight into chemo. Public patients here have the option of having their chemo at Epworth Private at no charge. I am so happy with the public clinic I stayed rather than move on to Epworth even though it is the same distance from home. My Public provided Oncologist jumps in to fight for me even when I don't need it. The main problems I have encountered came from the private breast clinic where I paid to have my initial testing.