Sorry for venting here but need some advice.

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pseudo
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Sorry for venting here but need some advice.

Post by pseudo » Fri May 20, 2016 8:44 pm

Sorry for venting here.

I just wanted to say something for people to hear because I find that I need to be holding strong for those around me, aside from my sister who is strongest of all so I can't seem to vent to anyone right now. My sister first went to the doctor about her breast pain back in January. She had her biopsy two weeks before Easter but because she's in the public system it has taken so bloody long to get anything done. She was diagnosed with breast cancer on the 19th of April. That is 1 whole month ago and they still don't know what they are going to do.

I hate cancer so much. She found out today that her breast cancer has spread to her lymph nodes. The thing is that they still can't figure out what type of breast cancer she has. Apparently there can be a lobular type and a ductal type and the pathology is inconclusive. Two pathologists have looked at it and can't figure it out. She went to her appointment today to find out about her lymph nodes and treatment plan and they had to tell her that yes it's gone to her lymph nodes but they don't know how to treat her best because they can't agree on what type it is. So she got told that she needs to go back to the clinic NEXT FRIDAY, YES NEXT FRIDAY, so they can tell her what they will do because they ran out of time today to discuss it. Everything is taking sooooo long. Meanwhile breast cancer doubles every 3 months so during all this time her cancer has doubled.

The advice I need is this. I came to a decision today and I rang mum about it and she told me I'm over reacting. On Monday I saw a breast oncologist on the advice of my sister's surgeon. We do have private health insurance but that only covers in hospital stuff and it didn't cost that much out of pocket to see him. This guy is one of the best breast oncologists in the country. His area of expertise is also hormonal cancers and hereditary breast cancer which is where my sister fits. I walked into his office and within 10 minutes he had walked me down to have a digital 3D mammogram plus another type of test that measures breast density. Within 10 minutes of the xray I was back in his office getting my results (that stage alone took 4 weeks for my sister in the public system). Thankfully I was ok but if I needed a biopsy, I would have had it done within the hour and got the results by the end of the day (that took another 2 weeks for sister). So a process that took months for my sister would have taken less than 24 hours for me and if it turned out that I did have breast cancer I would have been in surgery within the next 2 days (months for my sister, meanwhile her cancer has doubled).

So I want to bring my sister to Adelaide and get this guy to figure out what is best for her. DP and I don't have a whole lot of money but we are happy to pay. Am I over reacting? I can't stand this waiting that is totally unnecessary. Her cancer has already doubled because this public system takes so long to get anything done. She's only 37 so we need to get onto this asap. If DP and I are happy to pay do you think I should approach my sister about getting a second opinion here in Adelaide?
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Mummy woo!
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Re: Sorry for venting here but need some advice.

Post by Mummy woo! » Fri May 20, 2016 10:01 pm

Oh pseudo that all sounds really frustrating for you and your family. And you are so far away from her so hearing all this second hand too.

What does your sister think about the delays - is she as frustrated as you? Can you let that guide you in deciding what to do?

I know one of the things that is really annoying when you have a serious illness is that there are lots of suggestions from everyone about what to do. They usually don't make as much sense as 'get a second opinion' and are more likely to be 'eat nothing but lemons' or 'coffee enemas'! But your very sensible suggestion might not be the first 'idea' your sister has heard and she might be a bit sick of it.

I'd like to think that if your sister's treating doctors were very worried that they would be rushing a bit more - can you take it as a positive sign that they are not rushing, and that they are taking the time to plan her treatment? Did your mum say why she thinks you are overreacting? Is your mum less worried than you are?
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pseudo
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Re: Sorry for venting here but need some advice.

Post by pseudo » Sat May 21, 2016 1:17 pm

Thanks Mummywoo.

Yes my sister has had some crazy ideas sent to her just like the ones you posted about, including lemon juice!

My sister is a very selfless person so hasn't complained at all. While she is concerned about the delays she isn't complaining about it and is very calm about her whole diagnosis actually. She's incredibly brave, especially given that prior to being told she had breast cancer she also had health anxiety like me. She actually told me yesterday that she enjoys talking to me because (outwardly) I'm very calm and logical whereas she is finding that she needs to worry about everyone else's feelings because they are getting so upset when they speak to her. My cousin called her the other night and was crying uncontrollably on the phone so my sister feels she needs to be brave for everyone else.

Mum thinks I'm overeacting because she doesn't think a second opinion is necessary. I think in this situation is might be quite important for a couple of reasons: firstly, there is confusion as to what type of breast cancer my sister has. This is an unusual finding as pathology is normally quite straight forward. The importance of a correct diagnosis is vital for treatment. Two pathologists in Geelong have looked at it and can't figure it out but it is not going to be sent to anyone else to look at it as the team are just going to sit down and decide which way to go with treatment. I don't like the idea of guessing and would like the pathology to come to the centre I went to on Monday here in Adelaide.

The second reason I think a second opinion might be important is because from what the breast surgeon oncologist who I saw on Monday told me, it's very important that all young women who receive a breast cancer diagnosis that has gone to the lymph nodes (and possible even if not) receive both chemotherapy and radiation. He said it wouldn't necessarily be the case in older women but because the younger women have much longer to live, they need to reduce the risk as much as they can for recurrances and this treatment reduces the risk by more than 30%. However my sister was told yesterday by the registrar that they will decide if she needs chemotherapy or not next Friday once they figure out what type of cancer she has. My sister only gets to speak to a registrar at the hospital. Apparently all the specialists meet together on a Friday morning to discuss the cases but the only contact my sister has with a doctor is a registrar, not a consultant. I would like to pay for her to see the specialist breast oncologist that I saw on Monday as he is considered to be one of the best in the country. He is also an academic and up to date with all the latest research and best practice.

We're not going to get any second chances with this. If treatment is not successful, the cancer will recur and or spread to stage 4. I want to make sure she gets the best treatment plan possible and I don't feel confident in what she is getting already. There are too many unkowns. When my sister went to her appointment with the registrar yesterday, he hadn't even looked at her results. He turned his computer on, opened the report and read it to her from the screen. It was his first time seeing them. I don't think that's good enough. This is my baby sister. She so young and has 2 young children. I need to know she's getting the best care.

Sorry this is so disjointed mummywoo!
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Andypandy
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Re: Sorry for venting here but need some advice.

Post by Andypandy » Sat May 21, 2016 1:32 pm

If your sister is happy to go to Adelaide for a second opinion then do it.

http://articles.latimes.com/2013/apr/07 ... y-20130407 give this article to anyone who is in contact with your sister.
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pseudo
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Re: Sorry for venting here but need some advice.

Post by pseudo » Sat May 21, 2016 1:43 pm

Andy I've never seen that before. It's brilliant. I will definitely be passing this on and filing it away for future use. Thank you so much.

People can be so unbelievable as you know from the things people have said to you. The day after my sister was diagnosed she had a school mum turn up to visit and she spent the whole time whining about her husband and how annoyed she was that they had to cancel their Gold Coast holiday! Pisses me off.

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Re: Sorry for venting here but need some advice.

Post by Mummy woo! » Sat May 21, 2016 8:51 pm

Good call Andy - I love the kvetching ring.

It sounds as though your sister sees you as someone she can talk to about all of this and she trusts your judgement. I'd broach a second opinion and see what she says.

That said, my Nana has recently had a small tumour removed from her mouth, and all the treatment decisions are made by a committee without her (or my Dad as her medical decision person) being there - a registrar tells my Dad and Nana about the conference at the next appointment. Maybe that is just the way they do it in teaching hospitals?
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pseudo
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Re: Sorry for venting here but need some advice.

Post by pseudo » Sat May 21, 2016 9:18 pm

Thanks ladies. I'm mindful not to overwhelm my sister so I talked about it with mum tonight and this time she was receptive to the idea. We agreed that we will wait until my sister meets with her doctor next Friday and then I'll offer her my idea about coming to Adelaide to see the doctor. My boys and I are supposed to go over to Geelong in the next couple of weeks to support her through the early days of treatment and help with the kids/house. When I rang my specialist's office yesterday the receptionist told me that she could get my sister an appointment within 72 hours so it might work out well that we can all drive back to Geelong together, if she decides she does want a second opinion.

I really appreciate your input xx.
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Little Tiggermum
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Re: Sorry for venting here but need some advice.

Post by Little Tiggermum » Sat May 21, 2016 10:30 pm

Your suggestion doesn't really sound like a second opinion, but more a LETS GET THIS SORTED NOW!!! opinion...
I think when it comes to Cancer its a brilliant idea. We're always getting told speed is of the essence.

Hugs to you and her... you're a great person.
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Re: Sorry for venting here but need some advice.

Post by fellare » Sun May 22, 2016 12:09 pm

Haven't read the other replies but yes. I would do that for my sister and I don't even talk to her. Far out, it's het life were gambling with!
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freerange
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Re: Sorry for venting here but need some advice.

Post by freerange » Sun May 22, 2016 6:52 pm

I think it's a good idea too, but maybe a quicker version would be to send a copy of your sisters records to your specialist for review. That way no one needs to travel...

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Re: Sorry for venting here but need some advice.

Post by Baby Blue Eyes » Sun May 22, 2016 10:01 pm

I think you are a wonderful and loving sister to offer this to her and I like your game plan of seeing what happens on Friday and if you get no where I certainly would look to the option of your doctor. I know when I had a lump it was so painful to wait a week to find out let alone to wait for this length of time. I do know from my mum's experience with cervical cancer through public it was a little slow to get going but once the wheels got moving everything happened very quickly.

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Re: Sorry for venting here but need some advice.

Post by mummymanda » Mon May 23, 2016 8:41 am

Little Tiggermum wrote:Your suggestion doesn't really sound like a second opinion, but more a LETS GET THIS SORTED NOW!!! opinion...
I think when it comes to Cancer its a brilliant idea. We're always getting told speed is of the essence.

Hugs to you and her... you're a great person.
This!!!

Have dealt with similar this week although not as serious but its been a bit of everyone has a different opinion of what the line in the sand is.

DD1 has had some 'episodes" that resemble absent seizures. Go to GP 36 hrs after the fact due to liking that gp and she had no other time. She basically shamed me saying I should have presented at ED immediately whats wrong with me! I ask if we can bypass ED and get a Neuro appointment she said no as she cant refer that one DD needs urgent EEG to get into any neuro. Told must see neuro at ED by 5pm its already 2:45 and I tell GP she is crazy. Anyway immediately go to ED wait 3 hrs, get told wait time is well over 4-6 hrs. Go to reception tell my story Dr in charge looks at my like I am a pedantic mother tells me DD has to basically live with these episodes until they get much worse which will probably be never but if I have to I can be referred to the first seizure clinic by my GP who is useless in his eyes. Anyway she had more of these episodes the next day and we took her to the ED again and we got referred to first seizures after a very quick exam just to clear the 6 hr wait!

I have since found out the GPs second choice of hospital where she works too has the same GP referred clinic but is much quicker. She should know this as she works in this hospitals ED.

Navigating the health system is difficult at the best of time and I think you are doing the right thing. Another option is treat it like shopping for a bargain. Ring a few other specialist in Geelong and say this is what I can get going private this is what my sister is getting now what can you do and what do you think. Say also you are flexible to appointments and can take a cancellation if need be. Search engines are also your friend to sus out what other clinics offer and even where private Drs work the public system. Ie after doing a quick search I have found several neuros work one day at one hospital one at another and 3 days in their own practice.

Can the specialist you saw recommend someone in melbourne/geelong?

I think you are absolutely doing the right thing. Good luck
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Re: Sorry for venting here but need some advice.

Post by Nedsmum » Tue May 24, 2016 3:17 am

I wrote a long reply but accidentally deleted it. Basically, similar experience to mummymanda, it is (unfortunately) possible to pay for specialists faster than you can get them in the public system, for the same doctor. I've done this as well.

When we get sick, very often we expect a doctor to somehow take charge and tell us every step that we need to do, but it doesn't quite work like that. We need to advocate for our own health needs (or that of our children). I would definitely ask around who is the best doctor for the specific condition or situation, and see how to get to see that doctor. It's also very reasonable to ask for a second opinion. I have unfortunately quite a negative perception of doctors, having witnessed several mistakes. And I guess after all, they are only human, but no one wants to feel like they are going to miss out or be poorly treated because of a doctor's mistake...

My son had an accident with his finger and needed surgery, but it wasn't 'urgent'. The emergency hospital we went to did not have a kids ward. They referred us to the two big kids hospitals in Sydney. They asked us which hospital we preferred.... Duh.... 'the one with the fastest surgery time'.... driving to one vs. the other was nothing, compared to a 2 day wait for surgery at one hospital, or a 4 day wait 'how long is a piece of string' time at the other hospital'.
As it was, we spent nearly 11 hours in the triage of the admissions area before even getting a bed, the extra half an hour drive to the further away hospital made no difference in comparison!
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Re: Sorry for venting here but need some advice.

Post by mummymanda » Tue May 24, 2016 4:54 pm

Bit off topic but went to follow up GP appointment to basically give her an ear bashing for sending us to grime filled ED full of sick people for nothing when if she did her job properly we did not need to be there. Her answer was the ED is the fast track to specialist clinics her referral would pass through several departments before getting on a wait list for many months. OK that's fair enough and completely understandable SO WHY NOT TELL ME THIS! Would have made the wait worth it instead of having me sit there cursing you the whole 8hrs. Seems that if doctors actually took the one minute to fully explain why they are doing something it would make for clearer understanding all round.

Another thing I thought of is I often utilize student clinics for treatments. I wonder if in some way this could be an option to accompany any treatments your sister is getting. I had a MCHN appointment for DD4 today and I actually informed her of a few services run by local unis she did not know about. One is for $5 psychology sessions. (Yes I am about to access this myself lol)
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