New to this and a bit lost

kato79

Hello, I am a 44 year old woman, wife & mum who was told last night over a phone call that I have a grade 2 ductal cancer that is Estrogen sensitive. I need to make an appointment for either this week or next to discuss my options. I can opt for a lumpectomy and radiation or due to strong family history a double mastectomy with a reconstruction. I would like to get other peoples experiences or thoughts on this. I will be getting gene testing as well but know my sister tested new to the two she was tested for over 10 years ago
Im scared and a bit lost at the moment. I don't know how to tell my children (they are 24,19& 16) or others really. Im not sure where to start.........

PrisMay1

so sorry to hear you’ve joined our club!! My advice would be to not get too far ahead of yourself. See what your surgeon suggests as a way forward. Mine first suggested a mastectomy but I didn’t want so we went with a lumpectomy. 6 months later and armed with more information I’m considering a double mastectomy and reconstruction. There is time to make a decision. There will most likely be other treatment you will need to have. 

There’s lots of info here and I have found it extremely helpful. 

June1952

Hi @kato79 - just sit back and take a breath.  One day at a time.  It might be a good idea to wait until you have some more info so you can tell your family at the same time that there is a plan.  It is an awful time of the year to get that news and you don't want to stress them or yourself too much.  Due to the festive season many specialists do take time off so you may not get treatment too quickly so try to relax until you have more information.
Do join the Reconstruction group, a private group on here, as there is a heap of info there as well as stories and photos.  Your options for reconstruction will depend on different factors so read up and have questions ready for your medical team.
This is the link to the group so apply to join:
https://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
You are stronger than you think and will get through this - come on here with questions and to get support or just to vent.
Thinking of you 💖💖

cranky_granny

@kato79 like June said don’t get too far ahead of yourself. One day at a time. One step at a time.
the process does take time. When you get all the ducks in a row and your team is put together seeing that this whole process is now very individualised unlike years ago one size doesn’t fit all. 

The team of specialists will usually have a meeting to look at your individual results. You haven’t said what tests you’ve already had. 

With mine 7 years ago now. Once i had the initial biopsy i was referred straight to my local cancer clinic. I don’t have private health cover. I had further tests done eg bloods and more scans I saw the oncologist first then the breast surgeon then their meeting happened then the plan outline and options was put to me. I was pretty clueless where medical terms were concerned. And a lot of stuff just buzzed around my head. i took my children with me to my first couple of appointments mostly because they had lost their father to cancer just 15 months before, and then at least one came to the rest of my  appointments, that way they could take notes and ask the questions. Some say record the appointments on your phone. You legally have to get permission to do that. My oncologist was very good at writing everything down for me in plain english. If you don’t understand get them to explain. I was also appointed a nurse who i could phone/ leave message or email if something came up between appointments. 

Whatever you do. DO NOT dr google. It often leads you down a rabbit hole  it can give you out dated information and the very worst case scenario
Nothing is too weird to ask on here and there is no judgement there great podcasts available on the My Journey its also a great app BCNA have developed. 
I think thats enough for now. Im sure one of the other members will put up the links to the various links and sections to have a look at. 

Take care and keep us posted 

iserbrown

@kato79

Easier said than done, but please take a deep breath!  This is a so and so however, you are on the road to finding out how to handle all of this medically and you have found the BCNA website!  
We are here to help you through and allow you to rant as much as needed - we've all experienced the need for ranting at some stage of our experience.

Here's a link from the BCNA website, a wealth of information, that you may find beneficial when it's time to speak with your Children.

Telling your children you have breast cancer (bcna.org.au)

And other links

Breast cancer in the family (bcna.org.au)

Reclaim Your Curves - Welcome
Also has information sheet on What to Pack for Hospital and this website is beneficial if you do go down the path of Mastectomy and some form of reconstruction.

Best wishes and no decision are right or wrong - it is what is best for you!

Take Care

Tani12

Hi, I am also 44 yr old wife & mum, diagnosed on Oct 31st. My cancer is a little different to yours but one thing that was an absolute game changer for me in the early days was my GP calling the McGrath Foundation and organising a local Breastcare nurse for me. I highly recommend looking to see if you have access to one of these amazing nurses xx

Mareealso

Can someone shed a light? Have had a mastectomy (double), been told I am estrogen receptive and will be receiving endocrine therapy (expected) and have just been told I might also have Adjuvant Chemotherapy..Why? Doesn't the endocrine treatment work like chemo on the whole body?

Blossom1961

Endocrine treatment keeps it at bay. Chemo kills it or renders it inactive. Hope that helps.

brightspace

Hi Marreealso
Perhaps make an appointment to Contact breast care nurse for more information ...a must  to explain the biopsy result
If diagnosed as DCIS Hormone positive and  your cancer biopsy result was a low grade usual therapy is for hormone estrogen  blockers  to prevent estrogen from driving new growth of cancer after surgery 
Higher grades do reguire radiation and or chemo option for invasive dcis diagnosis or margins were not clear

If you are hormone positive and HER2 positive Chemo is the standard treatment  
Other stage cancers can have radiation and or chemo to mop up and prevent growth of new cancers after surgery as well as hormone blockers.
cancers reproduce at  faster rate Stage 2  3 and stage 4 can require  greater use of chemo 

Mareealso

Thanks for your info..it has added to my knowledge! I had 2 tumours in the same breast but had clear margin and clear lymph nodes.  Estrogen positive for both....I think my kicker is that I'm BRCA 2 ... I have been told definite Aromatase therapy and chemotherapy is now on the cards because of that. I was classified as a stage 2 growth rate (Not slow but not fast either). I will be getting details this week. Radiotherapy was not a treatment suggested for me. 

Abbydog

Dear Tani12,
I have never seen a McGrath Breast Care nurse. I live in Adelaide SA.
They are so praised in the media, but I think you have to be very lucky to have access to one.

Afraser

I was treated a decade ago and I am sure things have changed but a McGrath Nurse was never mentioned. To be fair, I never felt the need of one - my surgeon’s nurse and my oncology nurses were all excellent, gave me good advice on anything I asked.