Another new member...

System

This discussion was created from comments split from: The journey begins....

Daisyday

Another new member - Having been diagnosed by default only a few weeks ago, I had surgery last week and am waiting for my first appointment with a medical oncologist on Monday. I’m dreading the conversation but glad to be keeping the process moving although, I do feel like I’m on an huge roller coaster....as I’m sure everyone does at this point.

I was wondering if anyone knew of a support group on the Sunshine Coast as I’ve only recently moved up north, leaving all my friends in Canberra. Although I have a supportive partner, it’s hard not being able to sit down with anyone who understands what it’s like to deal with it all.

Very anxious 😟 

strongtogether

Hi Ginamae,

Hi Daisyday,

Welcome to the club that no one wants to join, but glad you found it. I have found it very helpful over the last few months.

Daisyday - we are not quite on the Sunshine Coast but we live on the northside of Brisbane. Hit us up if you want to say hello or laugh about the state of Origin.

 

arpie

@Daisyday - here is a link to another post where some Sunshine ladies could be contacible .....  https://onlinenetwork.bcna.org.au/search?search=Sunshine+coast&adv=1&discussionid=18804#search-results

@Giovanna_BCNA - maybe a separate thread for @Daisyday?

Daisyday

Thanks so much for your quick responses Arpie and Ginamae, I’m not sure how to navigate this site yet but will be sure to chase up both suggestions.

I’m trying to read as much as possible and be best placed for my appointment on Monday as am really hoping to avoid chemo despite being Grade 3 - my lymph nodes were clear so fingers crossed, it will just be radiation and hormone treatment 🤞

Giovanna_BCNA

Hello @Daisyday as the others have said, welcome to the online community.  I have split your conversation and commenced a new discussion as other members will be able to respond to your comment directly.  All the best for your oncology appointment Monday.  Kind regards

kmakm

@DaisyDay We all want to avoid chemo but I can assure you that it's not like it was in the old days. There's no non-stop vomiting to start with! It's grotty but doable. Some people work all the way through it. Take it all one day at a time. We've got you. K xox

Daisyday

I appreciate your kind response and encouraging comments about chemo. It’s just difficult as I also have a heart issue which I was finally getting on top of and better managing my health...and now this additional challenge.

The chemo and hormonal treatment list side effects which include  my current symptoms, so I’m very nervous it will set me back even further.

I’m trying to stay positive and realise it could be much worse but it’s hard coming to terms with another round of medical problems just when I thought I was reaching the top of the hill.

And who’d have thought radiation could ever be such an appealing option.....😊

arpie

And I know there is a 'pamper group' available up the Gold Coast area - to give you a treat after your active treatment (or during it.)  It may be available to 'out of towners'?

Sister

Welcome @Daisyday.  I understand your concern about chemo but it really isn't like they show in the movies.  However, you should be very upfront about your heart health with your onc and make sure your cardiac specialist knows what's going on.  If you go ahead, you should be sent for heart scans before, during and after chemo to monitor how it is affecting your heart.  You should also probably be exercising under expert supervision during chemo as this also protects the heart.

Daisyday

Thanks for your sound advice, I’m certainly preparing a list of questions for my appointment on Monday. I know chemo comes in different forms and it’s not as drastic according to the information I’ve read. But, I really hate the thought of having it (yes, who does), I just recall meeting people in the past whose bodies have been ravaged by it!

And, I still don’t understand why it’s come into the equation just because of the Grade 3 biopsy result if my margins and lymph nodes are clear?

kmakm

@Daisyday I'm not medical, but my understanding is that Grade 3 means the cancer cells are multiplying very quickly. Which means an increased likelihood that they could get very busy setting up house somewhere else in your body.

Unfortunately we are still in the one size fits all flamethrower era of treatment. Individualised treatment is edging closer (it's currently Love Your Sister's focus) but it's not yet here. If you can afford it, you can enquire about an oncotype test. There are a number in in $3000 - $5000 range. They look at the specifics of your tumour and analyse whether chemo would be of benefit. I had a tumour just under 2cm, Grade 2 - 3. In my case chemo wasn't automatic, but the stakes were high (click on my @name for the story) and my parents gave me the money to take the test. It came back as a clear yes to chemo so I did it. I have a friend who did the same test and got a no, so she avoided chemo. Ask your oncologist.

You could also ask your onc about your ki67.

It's a horrible place to be in where you are now, but it will get better. Hang in there. K xox

Daisyday

I’ve just gone through my results post surgery and can’t find any reference to ki67 or protein so am not sure if that’s an additional test required.

I’ll ask the oncologist about the tests and what is viable but the costs are prohibitive. This is where it gets so expensive - I didn’t fully appreciate how much out of pocket expenses there are when you’re diagnosed with cancer - it just never stops.

kezmusc

Welcome @Daisyday,

Sux to be here for sure but we all understand where you're at.  I never had the ki67 listed either.  It doesn't seem to be a standard thing.  Same places tell you , some don't.  Mine was stage 2 grade 2.  There was debate over the stage as it was in more than 4 nodes which would normally make it a stage 3 grade 2, but as the breast lesion was under the 25mm they kept it a 2. Confusing as to how it's all worked out considering how individual each person is.

The thought of chemo scares the beejezus out of everyone. It's another one of the things that is so variable and unfortunately you never know how it's going to go until you start. Nobody ever told me about oncotype tests, but probably didn't need to, given the positive nodes I guess it was a no brainer.   I did pretty well chemo all things considered. I manged to work through most of it, kept my hair with the cold cap and did the majority of normal daily things.  There was a few rough days here and there but nowhere near what my brain had conjured up at the beginning.
Good luck with your roller coaster lovely.  

xoxoxox

Sister

Unfortunately, as @kmakm says, it's a one size fits all type of scenario.  The fact is, they're only just starting to find out a lot of things about cancer.  Mine was grade 2 and really low Ki67 but pleomorphic (which indicated that it was growing pretty quickly) so it was chemo for me.

primek

@Daisyday ki67 is sometimes listed as MK167 in Australia on pathology results.