I have been diagnosed with breast cancer last Monday. I suspect that I m in Stage 4 as my specialist thinks the lumps have been 12-18 mths. I know my body is feeling pretty bad n getting nerve pain n isomia and yet I m still waiting for lymph nodes biopsy n PET scan to be done. Then another week of delay that I can see my breast specialist for treatment plan or surgery. I m afraid my body cannot wait any longer. Is there a way to get treatment immediately? Is this a norm to wait about 2-3 weeks to get treatment plan?

@Siewli don't over think things at this stage. I know, you are reading this thinking 'Oh, thanks for that helpful hint' You won't know your staging until you have all your tests. Even then, unless you are metastatic, staging is not a particularly helpful tool. Whatever is going on has been brewing for a while. A couple of more weeks can feel like an eternity once you know something is wrong, but testing and screening takes time--regardless of who does it. Two or three week to get a reasonable idea of your diagnosis is quite speedy. Getting a treatment plan can take considerably longer.The main thing is to get into the system. Don't be distracted by timelines for other people's disease; what happened to someone else's wife/sister/friend/hubby is irrelevant. Your particular version of this shitty disease needs to be fully understood before your team can figure out the best way forward for you. It takes time.Mxx

@Siewli Don’t blame yourself! Whatever we did or didn’t do, the challenge is to deal with what is now. Think of all the things we can’t check!! It’s exhausting to maintain a constant check on every part of our bodies that might suddenly malfunction. Keep your energy for the next steps. As everyone says, you’ll find it a bit easier with more knowledge and a plan. Best wishes.

@Siewli PET scans can be a bit daunting--such mixed emotions where you hope the news will be good, but are terrified it will be bad.I don't know what info about the test you have been given, but one of the most important things is to be relaxed.. which is something you have to fake on the odd occasion.You will need to be really still for about an hour. Try to concentrate on that, rather than what the results might be. The people doing the tests are absolute pros who will not give you the slightest clue about what they think. So don't look for any of that. Breathe slowly--I use a counting game where I start counting backward from 27 to 0. Then 26 - 0. Etc until 1-0. One long inhale and exhale per number. If I slow right down, that program can take me over an hour. It's surprisingly relaxing and distracting. But the, I'm a massive nerd. Why 27? If you finish the count, do the maths. :)

@Siewli good luck with your PET scan. Yes, whenever we can do something, we’d feel better. It’s like at least we can take back some control. We never want to be in this fight, but since we are here, let’s put up a good fight! xxx Sending positive thoughts your way❤️

That's great that the wait has been reduced @Siewli .... Check out what to take to hospital (specially the charging cords for you phone/ipad etc!) in the post mentioned above ..... front opening PJs and maybe even a lightweight cardigan for the cooler evenings now .... Just before my own surgery, my brother asked if I was taking 'before pics' ... and I'd never even thought of it .... so I did!! (Not that I've gone back & looked for them .....) but ... just a thought! xxYou'll be amazed at how much better you'll be feeling afterwards knowing it is 'gone'! xx Take care & all the best xx

Waiting game | BCNA Online Network

36 Replies

Cath62
Member
4 years ago
Best wishes @Siewli. Speedy recovery from surgery. 💐
iserbrown
Member
4 years ago
https://www.reclaimyourcurves.org.au/information-sheets.html
arpie
Member
4 years ago
That's great that the wait has been reduced @Siewli .... Check out what to take to hospital (specially the charging cords for you phone/ipad etc!) in the post mentioned above ..... front opening PJs and maybe even a lightweight cardigan for the cooler evenings now .... Just before my own surgery, my brother asked if I was taking 'before pics' ... and I'd never even thought of it .... so I did!! (Not that I've gone back & looked for them .....) but ... just a thought! xx

You'll be amazed at how much better you'll be feeling afterwards knowing it is 'gone'! xx

Take care & all the best xx
Siewli
Member
4 years ago
My surgery (remove right breast and right arm lymph nodes) is being push forward to this Thurs 19 May! A bit worry and nervous about the op. Hopefully I will recover fast.
Siewli
Member
4 years ago
I am having my surgery n treatment in Wollongong hospital. In Wollongong hospital, there's a Cancer Care Clinic.
arpie
Member
4 years ago
Good on you for contacting McGrath, @Siewli! I hope you can hook up with her soon.

There isn't a dedicated Stage 3 Group at this stage that I am aware of ..... but if you add 'Stage 3' to the topic - I am sure that those who are Stage 3 will respond .... You can also ring the Helpline & have a chat (not on weekends tho, sorry) ... the number is on the blue banner at the top of the page. xx. Or on the 'discussions page', you can also put Stage 3 into the 'search' area to see topics about Stage 3.

Out of interest - do you attend your Medical appointments in & around Wollongong or do you have to travel to a bigger town for your appointments & surgery? I am rural & had my radiation at Port Macquarie & stayed at the Rotary Lodge there at a very reasonable cost - and could still claim on the balance too. In NSW we have a compensation scheme for rural travellers re medical costs, called IPTAAS (Isolated patients travel and accommodation scheme) ... click here to register: https://iptaas.enable.health.nsw.gov.au/
.... So basically ..... if you have to travel a total of 200km or more within a week to numerous appts - you can claim for petrol reimbursement and a portion of accommodation as well, if required.
If a single trip is further than 100k each way, you can put as many claims, as they individually occur. There are a few forms to fill in tho .... and also Can Assist (https://canassist.org.au/) can also help rural folk with expenses - eg fuel and food vouchers ..... I think the closest branch to you is either Shoalhaven or the Southern Highlands ..... but you can chat with them on Facebook to see if there are any closer branches - they are fairly prompt at replying, even on weekends! Rural Offices:
https://canassist.org.au/about-us/local-branches/

Take care & all the best. xx
Siewli
Member
4 years ago
@arpie Thanks for the info. I haven't got a breast care nurse assign to me yet. But I did look up Mcgrath foundation for a breast care nurse in my area, and ring her up. She will ring me up this Monday n touch base with me. I just wondering is there a Stage 3 discussion group that I can join in BCNA?
arpie
Member
4 years ago
Hi @Siewli - great that you are feeling OK again - this disease is a real roller coaster (particularly in the early days xx) particularly with the emotions. Whack up any questions here & we'll do our best to support you xx

Having a treatment plan will help settle you. .... was there any word on the Breast Care Nurse yet? I hope you get linked up with one soon.

In the mean time, maybe check out this post - it has a lot of info on 'other things' we get up to on the forum - your garden, art & crafts, pets - even some funny bits, for a real giggle. There are links to what to take to hospital with you, as well as 'tick sheets' re questions to ask your team & monitor how you are going xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care and all the best xx
Cath62
Member
4 years ago
Hi @Siewli, glad your ok and also that you have your Treatment plan. Now that you have a plan it will feel better. You have a path to follow and it's going to be fine. You will feel a bit more control back. Please take one day at a time and one treatment at a time. Prepare for each treatment and work with your medical team to get through it all. Best wishes
Siewli
Member
4 years ago
@VSP n @arpie Thanks for all the response. I got my PET result n lymph node result, so I'm in Stage 3. 😔PET scan shows only right lymph nodes n right breast have cancer cell..other part of the body is cleared. I m kinda at ease that my treatment plan is out now. Remove right breast n right arm lymph nodes, then follow by chemo n radiotherapy.