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Anyone from Australia? #197746
01-03-2019 01:44 AM
01-03-2019 01:44 AM
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Mumto4 Offline OP
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Hi there, I was wondering if there’s anyone on here from Australia? If so, I have a few specific questions about the diagnostic process that you went through if that’s ok. I would also appreciate any other feedback/information from anyone willing to comment too. smile I do not have cancer at this stage, but have been referred for testing.

My doctor has referred me to a private ENT as she said the waiting list to go through the public system will take too long. She seems to think an opinion from a private ENT about the need for a scope etc will mean I will then be able to be referred through the public quicker. While I can find the money to cover the cost of an initial consultation, I’m concerned I will end up having to pay for the biopsy and scope etc privately too and I can’t afford that. I assumed a potential cancer referral would be pushed through quicker but she seems to think it could still take months. I do find this odd as I had more faith in our public health system here.

I’ve had a chronically sore and red throat with weird skin tag/polyps for 3-4 months and the lymph nodes on one side are all swollen, plus I have had a hard, pea sized lump that has come up under my jaw on that side. I initially tried antihistamines and elimination diets thinking it was an allergy thing, that hasn’t helped and the lymph nodes and lump have come up since then.

I also had part of my cervix removed when I was 21 due to precancerous changes caused by HPV. I don’t know which strain it was but I remember being told it was one of the more aggressive ones and the progression from CIN1 to CIN111 to precancerous (but becoming cancerous) happened in a matter of weeks so I do have concerns about leaving my throat for longer than absolutely necessary but I also have 4 kids to care for and feed and a mortgage to pay.

I know you guys can’t give medical advice but in your opinions, is it worth me trying to find the money to get the scope etc done privately rather than waiting a few months? At this stage, I’m trying not to be too concerned or worried (easier said than done though!) so I don’t want to just go throwing money away in a panic if there’s no reason to.

Thanks for listening everyone. Even just writing it out has helped me feel better smile

Re: Anyone from Australia? [Re: Mumto4] #197747
01-03-2019 10:24 AM
01-03-2019 10:24 AM
Joined: Jun 2013
Posts: 312
alabama
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KristenS Offline
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Is it worth getting the scope done sooner rather than later? Probably. Only an actual biopsy of the tissue can tell you whether that tissue is cancerous, but a proper look by a trained ENT can certainly speed up that referral (my ENT is the one who did my biopsy, actually, but I'm in America, so not sure if it works the same for you. We didn't do a scope at that point because mine was on my tongue.) You need to know what's going on, because cancer or no, that can't possibly be good and a Mum needs to be feeling top-notch, right? I know that's easier said that done, as I'm sitting over here telling you what to do with your money, when we're all in struggles these days ... but YOU are worth investing in, and your kids will thank you for taking care of yourself. (Well, when it's all over, anyway, of course.) Mine ended up being good supports once they got used to what all was going on.

And remember ... it's not cancer till the biopsy says it's cancer. Whatever you have, I hope it can be fixed soon, or at least you get an answer soon. Many many hugs to you. I've got family in Australia, so my Aussie roots will be rooting for you!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Anyone from Australia? [Re: KristenS] #197749
01-03-2019 01:35 PM
01-03-2019 01:35 PM
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Mumto4 Offline OP
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Thanks Kristen. I appreciate the time you took to answer me. After thinking about it, I will book in with the private ENT for the initial appointment and just go from there. No point in worrying about all the “what if’s” at this stage!

Thank you again smile

Re: Anyone from Australia? [Re: Mumto4] #197756
01-06-2019 04:23 PM
01-06-2019 04:23 PM
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Mumto4 Offline OP
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10 week wait to see the private ENT she referred me to. It’s going to be a long few months.....

Re: Anyone from Australia? [Re: Mumto4] #197758
01-06-2019 05:25 PM
01-06-2019 05:25 PM
Joined: Jun 2013
Posts: 312
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 312
alabama
Oh, goodness! Can you ask to be put on a cancellation list? Some doctors have a waitlist of folks who have far away appointments that they will call sooner if other patients cancel ... that might help save some time, if you can change plans in a hurry when an opening comes up. (They can do it here ... I sure hope for your sake they can do it where you are.)

I had to see one specialist once that took ages (this was before my cancer, and for a separate issue), and once I finally got to see him, we scheduled a test in hospital ... in February. Afterwards he told me he'd follow up with the results ... in July. I didn't even bother going to that appointment. I figured, whatever results he'd found weren't likely to kill me, and I was too mad to be nice. (In retrospect, that may sound very stupid, and it probably was, but in the interim another doctor figured out what my issue was, so it turned out okay at the time. But it was still a ridiculous wait time just to find out that his answer was 'We didn't see any issue'.)

Call and check! Can't hurt to ask.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Anyone from Australia? [Re: KristenS] #197759
01-06-2019 06:25 PM
01-06-2019 06:25 PM
Joined: Jan 2019
Posts: 8
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Mumto4 Offline OP
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Mumto4  Offline OP
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Joined: Jan 2019
Posts: 8
Thanks Kristen. I did ask to be put on the cancellation list and also rang and left a message for my GP to let her know about the wait time. I’m hoping she will be able to ring them and get my appointment pushed forward.

I don’t want to be a drama queen but I’m also concerned about waiting that long just in case it is something nasty....

Feb to July is a ridiculous wait time to get results! I’m assuming they would have contacted you in the meantime if it was something alarming in the results!

Last edited by Mumto4; 01-06-2019 06:28 PM.
Re: Anyone from Australia? [Re: Mumto4] #197776
01-10-2019 02:11 PM
01-10-2019 02:11 PM
Joined: Mar 2008
Posts: 404
Melbourne, Australia
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Karen Rose Offline
"OCF Down Under"
Karen Rose  Offline
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Posts: 404
Melbourne, Australia

What state are you in? Any GP should refer you to an ENT at the cancer centre. They will see you immediately and organise tests through the public system.
Waiting 6 weeks is just ridiculous. I live in Melbourne. Melbourne has Peter MacCallum Cancer Centre in Parkville, Royal Melbourne Hospital, Olivia Newton John Cancer Centre @ Austin Hospital and many other cancer centres. Sydney has several cancer centres and so does every other states. Please let me know if you need assistance.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Re: Anyone from Australia? [Re: Karen Rose] #197783
01-11-2019 04:39 PM
01-11-2019 04:39 PM
Joined: Jan 2019
Posts: 8
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Mumto4 Offline OP
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Thanks Karen. I’m in Qld. I’m actually in hospital with one my kids this week as he’s just had a major operation. I rang my GP’s office twice (from hospital) to see if she could ring the private ENT and get me in quicker but despite the promises to get back to me, I haven’t heard a thing. I’m a bit annoyed but also aware that being in hospital makes me grumpy lol

I’ve tried diet changes which didn’t help and this week I’ve been completely away from all my allergens (grasses, cats and dogs etc) and it hasn’t made a difference so I don’t think it’s allergy related (which I think is what the GP thinks)

I’m considering seeing a different GP next week for a second opinion.....

Re: Anyone from Australia? [Re: Mumto4] #197788
01-12-2019 09:27 PM
01-12-2019 09:27 PM
Joined: Jun 2013
Posts: 312
alabama
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KristenS Offline
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KristenS  Offline
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Joined: Jun 2013
Posts: 312
alabama
Oh, good heavens, you do have a full load! Hope your kid is doing okay?

Maybe you could arrange to 'slip' and fall and be hurt and have them run some tests on YOU while you're there?

You never know about the allergies, though I'd think it more a symptom at this point than an answer. After my treatment (treatment, mind, not the cancer), my immune system basically thumbed its nose at me and gave up on everything ... and I developed the oddest allergies to add to the list I already had. It took a couple years for things to settle down and get a grip after that. Still have the allergies, but at least I can tell what they are now, instead of just reacting to everything. Sigh. Life is weird.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Anyone from Australia? [Re: KristenS] #197819
01-22-2019 04:43 PM
01-22-2019 04:43 PM
Joined: Jan 2019
Posts: 8
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Mumto4 Offline OP
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My boy’s surgery went well and we made it home last week - yay!

I went and saw another GP for a second opinion and she agreed that waiting another two months when it has been going on for so long is not a good idea. Unfortunately she is now on leave for a week so unable to ring the ENT I was referred to but she faxed through a second opinion referral asking that I get seen sooner. However, she also wrote on there that I am “very anxious” which I’m now concerned will make it look like I’m just a hypochondriac and not get me seen any quicker. 🙄 She also said there was no point in referring me through the public system as that would take much longer, despite saying I should be seen as a matter of urgency now given the time I have already been waiting.

My mum wants me to see her GP, who has no availability until late next week and is an hour away. I’m not sure now though if I am just over-reacting - I didn’t think I was particularly anxious, but maybe I am and it’s actually not that big a deal. I don’t want to make a fuss over nothing but I also don’t want to ignore it in case it is something that requires treatment (and having a sore throat for so long isn’t exactly fun anyway!).

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