New to the group

roby24

i live in a country town where they have no groups for Metastatic breast cancer it is more first women that have been early diagnosed. So when i was told that group was on line i was really pleased reading so many out there are the same and  your not alone. Was diagnosed in 2009 with stage 3 and 19 lymph nodes taken out that  were cancerous . Went on Tamxophine got blood clots so then went on Admara and Femara for a short while after . Then on May the 1st 2017 went for blood clots new they were there to find out have bone mets and liver mets.The bloods clots were telling me it was back as in August the 2016 i had ct scans done mri and whole bone scan and  everything was clear.So i am happy the blood clots yelled out would of not known.I did 8 months of chemo and now on femera and Kisqali . Have a few scan done in the last 12 weeks as ca counts went up but scans show lung mets and bone mets stable and blood test good.Mri good. Get anxious when time to go and find out blood test restults as i am going next Tuesday.Does any one feel the same dont understand ca counts would rather do scans as they tell the picture.

Brenda5

I think none of it is an exact science. My white cells were up in a blood test when I had tachycardia but I know why as I had just had an abscessed tooth out and was on antibiotics. Try not to panic if tests are variable. Doctors don't know every thing. My dad is still perfectly mobile himself at 77 and he has had bone mets for years. What does get him down is when doctors think they are doing him a favour saying he hasnt got long left. This gets him very depressed. Hope is life.  

Romla

Hi @roby24 just letting you know there is also a special group on here called “Living with metastatic cancer “that may be  good to join as well.Groups are on the lower RHS of this page.

wendy55

Hi @roby24,please go over to living with metastatic cancer group and join,we are a nice bunch and will help you as much as we can,I was diagnosed nearly 5 years ago with liver and bone mets, so am a little bit further on than you, your oncologist has you on a treatment plan, now you have to try and adjust your day to day life around this, I too live in the country and there is no metastatic support group for myself and the other 2 women who are metastatic, I still go along to the early support group as the women are amazing and the focus of our afternoon is not all about breast cancer, initially I felt the odd one out and at one point stopped going as I felt that I reminded the women of what could happen, however they told me off and now I go when I can, as a country girl you will be able to access a McGrath Breast Care nurse, go to the McGrath site and put in your area and hopefully something will come up, please ring and get you hope and hurdles kit sent out to you, the 1800 is on the homepage, there are a lot of resources available so please just ask away,as far as the CA count is concerned, that is just a tool that the oncologist uses, and yes you are right the scans tell the true picture, its tough waiting for scans then its even tougher waiting for the results, we call it scananxiety, on the homepage there is is special area dedicated to metastatic breast cancer and I am sure that this may be able to answers some of your questions,if you have any concerns on anything please dont hesitate to ring the bcna helpline they have dedicated cancer nurses to talk you through everything,  
wendy55

roby24

Hi wendy i went over to living with meastatic cancer group but there is no join next to it so i dont know how to get into it.

Romla

Hi @roby24 I think you need the @ symbol to ensure @wendy55 is advised you have written to her.PS note no gap between @ and name.

iserbrown

http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

Try this link on my phone to the join button is on the right hand side 

roby24

Thankyou iserbrown or your help did that before it asked me a question why i wanted to join i said why but not reply will ring bcna on Monday and see what they say

lrb_03

I think one  of the admin for the group have to accept you, and then you will be notified. That's generally the process with closed groups. 
Take care @roby24

wendy55

Hi @roby24, sorry should have explained myself better, yes. a good idea ring bcna tomorrow,and they can do it for you, Im not very computer savvy myself, but there is always someone on line to answer any questions,
wendy55

SoldierCrab

Roby24 it possibly means no facilitator for the group is online right now .... We suggest waiting 24hrs to get a reply .... 

roby24

Thankyou to everyone for their help will wait until tom.

Giovanna_BCNA

Hello @roby24
Thank you for your post, I have just responded to your request so you will be able to access the living with metastatic breast cancer group.

PatsyN

@Giovanna_BCNA - you girls work all hours. I have so much admiration for this site and the moderators. xo

Romla

I’ll second that @PatsyN !

Giovanna_BCNA

Hello @PatsyN and @Romla
Thank you!  Im one of the moderators on the weekends and like to check in a couple of times during the day!