Hi everyone, I too am newly diagnosed

@Finch See above  :*

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. 

Navigating the online community formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

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. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

 

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

Thank you Sister, arpie and kmakm for your suggestions. I have no idea why the oncologist didnt respond to me. I phoned the surgeon's breast care nurse today before I left for my radiation planning appointment and she said she was seeing her tomorrow at a meeting and would ask - the oncologist mentioned Tamoxifen, nothing else was suggested, so I was intrigued when I read the posts here about AI's - I have to write all those names down. I will call the BCNA helpline and get some advice also. 

arpie Im now located in Pakenham, Victoria, in the south-east, a long way from anything familiar - I can go for radiation treatment to Berwick. I went there today and they did the planning stuff, tattoos etc, breath holding, ct scan, it all took a while but they were very good. I was shown around as well, as I was feeling claustrophobic just thinking about it. The lodge idea sounds amazing, if I didnt have my dog and cat, I would follow something up, but wouldnt know where to start. Port Macquarie would be lovely, I have been there, beautiful spot. My daughter is taken up with getting her house ready to sell, so I dont like to bother her, she has a six year old as well. I do have another daughter in Ocean Grove - thinking of moving there - she has been supportive, taking time off to come and stay with me and take me to the surgery etc.

Thank you all so much for your support and suggestions, I cant tell you how much I appreciate it. xxxx

@Bettyboo I would be asking my oncologist why Tamoxifen and not an AI. And yes, the oncologist should be writing you your prescription. If you aren't happy with the care you receive from your onc, go back to your breast surgeon or GP and ask for a referral to a new one.

You don't have to be alone in this. One thing about BC is that this year it will be the most commonly diagnosed cancer in Australia. There are a LOT of services out there for us. Check out the Look Good Feel Better workshops, the Otis Foundation, the Encore programme. Contact your local Cancer Council to see what they've got available in your area.

Have you given the BCNA helpline a call? I truly think that's a good place for you to start. Hang in there, K xox

Hi @Bettyboo  - I am 65 and 10 years past menopause, 55 when it finally stopped! (it took 10 years to 'work thru'.)

I was originally told I'd be on Tamoxifen by my surgeon back in Jan (as it was the only one I'd really heard of at that time!) So was surprised when my first visit to the Oncologist in June & it was changed to Letrozole!  But I did have worse aches & pains than I'd hoped for with the Letrozole, hence the change to Exemestane.

I only went on my tablets some weeks after finishing radiation (I was lucky & didn't have chemo.)

Where abouts are you living?  Is there a major hospital/Cancer Clinic nearby?  I was lucky & was able to stay at Port Macquarie hospital for my entire radiation period (4 weeks) in a wonderful 'Rotary Lodge' at VERY reasonable cost ..... hopefully you'll have access to something similar - otherwise it'll be a daily trip in & out, Mon-Fri.  

Your oncologist should be giving you the script for hormone therapy @Bettyboo If you don't have an appointment, ring up and ask about it.

Thank you Kiwi Angel, Annski and kmakm - the information is all very useful - you are right, my mental state is not great right now, and I do feel alone, well I am alone. It could be my fault for not reaching out, and trying to manage it on my own. To be  honest, I dont even know what support looks like, I think it is expected that I will just cope, and I will, I guess.

Thank you for the explanation for AI. I am definitely not pre-menopausal but Ive been told I will be on tamoxifen, I dont have a script for it as yet, so Im not sure who to ask for that, the first oncologist said I could get the script from the radiation oncologist, but none of that happened. Should i be asking about the ones you mention kmakm?

Thank you Annski for offering help via a personal message, I do appreciate it. I will take on board the counsellor part. I did find one when I moved here but the plan ran out, perhaps Ill try to find him again.

kmakm, Im finding my way around in the mud, slowly, and Im glad I had the courage to post here, you are all amazing. Thank you again and again! xxxxx

Good morning @Bettyboo. I hope today goes well for you. @Annski wrote beautifully and perfectly, and I would endorse her suggestion to look after your mental health. Perhaps a chat or two with a counsellor would be helpful.

AI stands for aromatase inhibitor. It's a broad term for the hormone therapy post-menopausal women are prescribed if their tumours are found to oestrogen positive. Which means their cancers feed on oestrogen to grow. An AI stops the production of oestrogen in your body. The individual ones you'll read here are Letrozole, Femara, Anastrozole, Aromasin and Exemestane. Sometimes it's just easier to type AI! If you're pre-menopausal it's more usual to take Tamoxifen. That allows your body to still produce oestrogen but blocks its uptake by your cancer.

Clear as mud?! K xox

@Bettyboo, I feel for you but have confidence in your treatment and in yourself. I was diagnosed November 2017 with very large adjoined tumours invasive ductal (not lobular) with spread to nodes, 100% oestrogen positive. I am 73. Had single mastectomy, 20 nodes removed, half affected. Then 25 lots of radiation, now on Femara ( the non-generic Letrozole) and I am doing fine. There are lots of hiccups on the way but the hardest is your own mental state. You should have lots of loving support but it sounds like you are quite isolated and feeling scare and anxious. Yes, that's what feels worst of all but after my surgery and radiation was finished I went to a wonderful counsellor. Someone on this forum will always be able to reach out to you. I think older women have somewhat different issues than younger ones. Anyway be in touch anytime or send me a personal message. Your prognosis seems very good and there's every reason to confident that  your treatment will be fine.

@Bettyboo u r not being too harsh at all!  U are in a scary and vulnerable place and we count of people like our oncologists to help us navigate all the medical options. Big hugs to u xoxoxo