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

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 😟

Hullo @Daisyday, I'm glad to hear that the decision has been made and that you will have a management plan which takes into account all your issues. I had several reasons for not wanting chemo when I was diagnosed in November 2017, I was 72, I have recurrent long QT syndrome ( a heart arrhythmia) and had had three unrelated surgeries in the previous few years. All the same, my tumour-load was large and I had 9/20 affected lymph nodes, two of them with extrusion (i.e. the cancer cells had already extended out from the nodes). On the other hand I was HR and PR positive, HER -ve and my Pi67 was only 16. So it was a bit of a tough call. I had mastectomy then surgeon and two oncologists said I should have AC+T, but a radiation oncologist (a top specialist) disagreed and said chemo didn't work so well on older women and radiation and Femara (Letrozole - an AI) would probably be preferable given the other co-morbidities. So I said no to chemo and have never regretted it. The surgery was fine, I've managed the lymph issues fine (with the help of a great oncology masseuse), the radiation was a bit of a struggle but manageable and I have only minor problems with the Femara. I'm two years on and doing very well apart from some emotional stuff which the cancer has brought to the fore. I may have lost 3-5% statistical life expectancy but the quality of life at my age feels so much more important. And I am sure you will do well too. Yes, it's still a hard road but you will get through it. Side effects may be very few and the overall management of your whole body/health/spirit is the thing to focus on. However you do need to follow up and advocate for yourself - the new cancer centre sounds good but they will only contact you if your oncologist/surgeon has arranged it. So don't be shy about asking what is going on. These first weeks are the most traumatic. Also don't forget that you can have public treatment for your radiation which is exactly the same as private treatment and free, so don't sign up for that with a private provider. Thinking of you and hoping all goes fine with this next bit, Annski.

@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

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

Great news...I’ve avoided chemo! The oncologist has recommended radiation followed by Arimidex as believes this will be as effective as chemo and won’t be as bad for my heart.I’m so pleased and know there’s still a difficult journey ahead but thank you all again for your support over my very anxious weekend.xxx

Another new member... | BCNA Online Network

Giovanna_BCNA
Member
6 years ago
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
Daisyday
Member
6 years ago
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 🤞
arpie
Member
6 years ago
@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?
strongtogether
Member
6 years ago
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.
Daisyday
Member
6 years ago
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 😟

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