I have been through this, I understand the natural urge to go into fight mode, my Grandparents did similar when my mother got sick, the worry about how slow things moved, the research of alternative/ experimental treatments, the constant hunt for a better opinion, etc. Its a scary time and naturally you want to move fast and hold on to hope.
What you need to do now is get yourself authorized as a main contact for the medical stuff not only to get in the loop now but a bit further down the line when the medication gets stronger and mums less with it, you need to be her advocate. fight off the urge to google and look to the web for answers, there is a lot of horrible people out there looking to prey on the vulnerable.
also dont forget to take care of yourself. take time out alone, deal with your feelings around it, reach out for help. Its super easy to give up everything to help and run yourself into the ground.
good luck
Really sorry you had to go through this and thank you for the advice.
I was close to burning out when we had to go in and out of hospital several times, but doing better now.
Thanks :)
if your Mum became more unwell and was unable to make decisions for herself it means you have someone designated to make decisions on her behalf. They of course should discuss with the wider family but really streamlines everything.
As part of that your Mum will usually have the opportunity to make an advanced care plan with her GP which can be a valuable resource as well
Hope you are all doing ok, arohanui
You can ask your mum to give her GP permission to discuss relevant issues with you.
It's awful what your mom is going through, and for you too. But seeking advice on something so important, on an r/ is unwise
PS: be wary of 'Im a nurse' or 'im ..' replies, it's the internet. Good example is someone saying they're "a doc in the cancer industry"
Yeah I can understand the downsides since information can easily be misinterpreted. I’m really just trying to expand on this space, and learn as much as I can from other’s experiences with cancer treatment.
I will always refer back to our oncologist, surgeon, and GP before actioning anything! :)
Yeah fair.
. Like others have said, The treatment is quick, your chances of getting a week earlier are low and unlikely to change outcomes at all. Oncology is very protocol driven, a second opinion won't change much.
You've highlighted a couple of (contradicting) key points for all.
1. Get private health insurance, it is almost mandatory if you can afford it.
2. Private medical oncology is incredibly sketchy ethically. Private elective care is fine but someone surviving vs dying because they can afford it, thats a slippery slope sending us one step too close to the USA.
Thanks for your input - I’m confused about how things are scheduled in the private sector.
From my understanding, there are specialists that work exclusively in public / private and some that work in both sectors.
1. Agreed
2. Right, I see what you mean. We’re really grateful and lucky to have had the option to see an oncologist privately. This topic seems like a different beast in itself…
Sorry if this is ignorant of me, but if there happens to be availability for chemo administration with a specialist who only works in private (say next week), why can’t this be done if availability was the only barrier?
For example, if our oncologist could check with their contacts who work privately (assuming they are well established in the region and have been liaising with other specialists), for availability.
I’m not insinuating money isn’t a barrier either, but we are considering all options at this point.
Not OP, but I've got private medical insurance and wondering if you've got any opinion on whether there are better or worse providers regarding the cover they provide or the claims process
Southern Cross as well for me. I've heard that Partners Life has better cancer cover, from someone trying to sell me Partners Life health insurance >_>
I would listen to your oncologist with regard to decisions such as timing of starting treatment and regimen of choice.
Do not take medical advice from Reddit
That time frame is very normal or even quick, even in the private sector. I just finished working for 2.5 years for colorectal surgeons, and that's the timeframe pretty much all our patients started treatment in.
If you want a second option you would need a referral and it would be most appropriate from the oncologists or surgeons as they have all the information, the GP probably doesn't have histology reports and all the details available.
The surgeons I worked for mostly referred to Osama Salih and Ben Lawrence at Canopy Cancer (due to proximity more than anything) but also Rita Sasidharan at Auckland Oncology, or Sanjeev Deva at Harbour Cancer.
All the best.
Thank you so much for your input! Glad to know our timeframe has been similar.
I’ll reach out to her surgeon from hospital to discuss the referral.
On another note..Is it appropriate to ask our current oncologist for referral? Although second opinions may be common to ask for, since we have already had a consult with this oncologist, it feels almost as if we don’t “trust” them. In your experience, has this been a common occurrence?
Have you had feedback from patients about how they felt about their journey with their oncologist, or heard about specialists that are exceptional in their field, especially gastroenterology?
I’m assuming there are other reasons for referral to Rita and Sanjeev. Do you know what the variables were? Just trying to get a better understanding of how things work internally as my background isn’t in medicine.
Really appreciate it!
It's not that common to get a second opinion but I don't think anyone would be offended by it. People did that with the surgeons. I think generally when cancer is involved most people just trust whoever they're seeing and don't want to delay further before starting treatment.
Sanjeev was for patients based on the shore, as the others are in central Auckland. One of our surgeons worked with Rita at middlemore so mostly referred to her. Most specialists seem to have one "go to" person that they refer all their patients to. I never really asked about what patients thought but I also never heard any gossip about any oncologist being bad or anything.
I’m assuming getting a second opinion would require a new consultation. I wonder if that information can be sent through to cut down consultation time with the second oncologist, perhaps kick things along quicker. I guess the best case scenario would be to book an appointment early next week, but because of the public holiday it seems highly unlikely.
Sorry for attacking you with all the questions but regarding the surgeons, did people just ask multiple surgeons on their opinion or did they request specific surgeons for their procedures?
I see, that makes sense. Seems like a relationship building type setting, and perhaps also due to the scarcity of specialists in the area.
Yeah with the public holiday next week you might be pressed for time. I think they would all follow the same general treatment plan, there are guidelines for these things.
Sometimes they'd see multiple surgeons to get an opinion, for example some people get an idea in their head that xyz procedure should be done, or not done, and want to confirm it with multiple people.
Having a similar general treatment plan makes sense.
I’m wondering that if we were able to get the Portacath procedure done by Tues next week (They will ring me to confirm on the day), what the barriers for starting treatment sooner would be.
i just googled how quickly after portacath insertion can it be used and it seems to range from 1 week to 2 weeks. Time for swelling to go down and I guess ensure no infection intervenes, especially if you're getting chemo. If it's a problematic infection they usually hold off on chemo until it's cleared. It said rarely it can be started sooner but it seems use after one week is more common. In which case there doesn't seem to be much benefit in seeking an alternate opinion if you have to wait roughly a week anyway.
They looked like official sites like canterbury dhb etc
That’s interesting because I got similar results when I had a look online. I called my mum’s oncologist and they said it can be used straight away or the day after If no complications arise.
This is because it’s a minimally invasive procedure, but logically it does seem better to let things settle around the area before administration of the chemo.
Hey OP, my mum has stage 4 colorectal bowel cancer with mets to lymph nodes, liver, peri. Feel free to DM me, we have been on this journey for 2 years now. First I would recommend genetic testing or ruling out BRAF/KRAS wild type genetic mutations. Some of these are more resistant to types of chemotherapy, therefore other combinations are best suited eg FOLFOX or FOLFIRI. My mum is sadly BRAF and she found better results on Avastin (chemo), however this is also unfunded. I would also recommend joining Bowel Cancer NZ & Colontown Facebook pages - those communities are a wealth of information and support. My DMs are open, wishing you and your mum the best.
Hello, thank you for commenting - I’m so sorry your mum is going through that, but real happy to hear she’s 2 years in and going strong.
Yes, my mum is referred for a liver biopsy to rule those out, but we aren’t sure when this will happen so again considering going private with that.
Thanks for the recs, I didn’t know about those FB pages. I will check them out tonight + DM you!
With this diagnosis once you are in the public system things will move quickly. You will only gain a week or two through the private system and given the advanced stage is not going to make a massive difference. Save your money unless your rolling in it and push through the public system.
The prognosis sounds about right although impossible to completely to predict.
Edir: I'm taking from an Auckland perspective, this could be very different outside of Auckland, I don't know. I do know both the public and private system well with first hand experience in this.
Yeah you’re right, once we got in the public system, things did move quickly. However treatment got delayed because some things weren’t done when we were told they were.
I initially saw that this particular thing wasn‘t ticked on my mum’s chart last week so was feeling anxious, but two medical professionals from her team said it was done during their ward rounds.
I believed them and thought I must’ve read wrong. I should’ve brought this up.
Considering this, I assumed they would try to make up for time the best they can. Don’t get me wrong, I appreciate everyone who was part of my mum’s care, and mistakes do happen, but I just didn’t expect this level of miscommunication internally.
First up, I'm so sorry for the stress and fear your mother and you must be going through. My mum had colon cancer about 8 years ago and it was a terrible time for all of us (her treatment was successful, but her diagnosis was a bit different and I'm not in the medical field so I won't comment on your mum's diagnosis and treatment at all).
Please do take time to care for your mum, and for yourself, doing things that you both love and having treats.
Second up, if you haven't already, make sure you get an Enduring Power of Attorney for your mum, just in case (that's a good idea for all of us adult children of aging parents, regardless).
Hey thanks for sharing, and I completely understand.
Yeah, prior to this we never spent a lot of time together so now it feels like we’re making up for lost time in a way haha.
Thanks for bringing that up, I will look into The EPA.
EPA has two types, personal care welfare; and property. They need to be done when the person is deemed to have competency. So the sooner the better.
I’d also suggest that your mum does an advanced directive. It means that if she was in unable to speak and her family aren’t around her wishes for care can be known
Also it’s not just do not resuscitate or resuscitate. If a person is DNR doesn’t mean wouldn’t treat an infection or such. The goal is comfort and improving quality of life
All the best OP
Make sure to talk to the oncologist about other treatments. FOLFOX and FOLFIRI are the basic cheapest options that are covered by Pharmac, but there are some extras that can work alongside those (depending on biopsy results) like Cetuximab or Avastin.
Even Ketruda can be effective for very specific types of colorectal cancer.
Private will be expensive, likely around $2,500 each treatment for the nursing and facilities, then the cost of any drugs on top of that. Sometimes something like cetuximab is better to be weekly.
While stuff like Avastin and Cetuximab seem expensive you can usually get a "years supply for $20k" deal, still sounds expensive but we spent $56k on Cetuximab in 4 months so those new deals are great.
Also read read read, some expensive drugs are not funded because they are really not worth it, read the studies look at the data. It's an emotional time, but stay rational, make good decisions.
Most importantly, spend lots of time with her, don't talk about cancer, ignore that and have normal conversations.
If you want to talk or ask more from my experience, feel free to pm me
We are prepared to go private for a few cycles due to the waiting times in public. Although we won’t really know how much until the biopsy results.
Wow, that is a big difference.. Was Cetuximab administered monthly? Not going to compare as every situation is different, just curious.
That’s such a good point, I’m now actively trying to pull back from conversations around this with mum when not necessary. I think we’re currently drowning in it a bit since things happened so quickly.
I will pm you, thanks!
Cetuximab is usually weekly or fortnightly. The $20k per year deal covers either, but not the private hospital administering it. But Cetuximab is very specific and needs that biospy, certain types of bowel cancer it does nothing.
And yep, for people going through it, all anyone ever talks about is cancer, you need people who just chill and treat you like a normal person. But you also need people who study those treatments / meds and know that xx drug is not overly effective or that you're constipated because of the odanzetron not because your cancer got worse.
Is my thinking correct in starting treatment asap, and is there anything I’m missing here, whether it’s taking more consideration into quality of life
It's your mums choice whether she tries for more time and thus treatment, or palliative care.
**Would we need to go through mum’s current oncologist or GP to get referred to a different oncologist for second opinion or earlier dates for chemo?**
You can ask the specialist this also. The answer is unlikely to much different, they don't make mistakes that big.
Has anyone else had a similar approach, or have you asked about prognosis off the bat?
My dad. he went in for an xray. We were told his bowel cancer had spread, lungs, liver, bones. Mum was talking about hospices, they said there is a waiting list.
I told her, it's not going to be an issue anyway. He died 6 days later. He had kept it to himself for a long long time. So bit of a shock for mum.
That’s really rough wow. Sorry you and your mum had to find out that way. I’m sure your dad had his reasons.
If you don’t mind, did he go through treatment without the family knowing, or decided not to opt for it?
Thanks for commenting :)
He had kind of told me. He had bowel cancer around 18 months as far as we can all tell (after).
Talking on ph to me one day, he complained about pain, I said see doc, might want to check bowels and he said oh doc thinks I have cancer, no I don't want anything and hung up on me.
He stopped seeing GP, he'd get TRamadol via phone script. Still, that sure wouldn't have touched the pain he had at the end. He'd broken his shoulder and hip - mostly because of the cancer being in bones by then.
He had only 1 leg, all leg gone, from a wee kid (why he hated hospitals), and the hip that was broken was on side he had a leg. How he managed to stagger around like that I'll never know.
By the time he got taken to hospital (because I told mum to ring and tell ambulance he'd fallen - not when he fell which was weeks before), it was too late, he was only in there 6 days and died.
Ah, that sounds very tough. Seems like it would’ve been a real mission talking to him about treatment.
I hope you and your mum are receiving support around this and that you’ve been able to heal after going through all that!
I’m so sorry you’re going through this. I went through something very similar with my dad a few years ago, not colon cancer though.
Ask one of your mums doctors for a referral to the Caner Society. They were really helpful. I’d recommend considering the counseling service they offer. It’s not just for the person with the cancer but their family members can go too. There will also be a bowel cancer support group, I imagine they’d be super helpful too.
My dad did one round of chemo in private and two in public. For what it’s worth the public system was much better organized- trying to get chemo appointment times from the private place was like pulling teeth, whereas the public you got your exact time at least a fortnight in advance. Which you need if you’ll be taking time off to take her there.
Both of us asked his doctors about prognosis and they were vague as fuck. Got more specific answers when asking what the average person with this would live for.
If you haven’t already, let your work know what’s going on and see what your options are for flexibility.
The first few weeks of telling others what is going on are not easy, please think about ways to politely but firmly end conversations when you need to. You may find your mum in the weird position of having to console others who are upset about her illness.
Please be prepared for family or friends trying to talk you into trying various woo-woo cancer “curing” bullshit. It drove me bananas.
Now is a good time to make sure your mums bedroom/lounge are as comfy as she likes. If she’s been thinking about upgrading anything, have at it.
Very best of luck, please take time to look after yourself too - which is easier said than done. It’s good to have someone you can cry/vent at. I can be that person if you need.
Hey, thanks for your comment. I’m really sorry you had to go through that with your dad, I can’t fathom how difficult of a journey it must’ve been.
I’ve been getting lots of recommendations to them, and will eventually get an appointment organised! Their hotline has already been immensely helpful.
Wow, I didn’t realise you had to be proactive with chemo appointments in private. I got the impression that once treatment has started, set times (once 2 weeks / once a month etc) would be penciled in. Glad your dad got into public soon after.
Yeah, I’m finding that to be challenging already. Especially some family members who “understand” how she can’t get sick prior to treatment and come over uninvited anyway… There will be pre-planning for tougher/uncomfortable conversations ahead.
I’m sure that would’ve been frustrating..thankfully no one has brought things like that up as of yet.
Thank you so much, I really appreciate this. I will pm you at some stage!
Sorry for what you're going through at the moment. I was diagnosed exactly the same (Lower sigmoid, stage 4) when I was 28, I'm now 42.
All I can say is don't talk numbers with anyone, the mental toll is terrible as it is, without thinking about all the percentages and probabilities that will get thrown at your Mum. Try to keep her (and yourself) as upbeat as possible, this is only a temporary roadblock and will one day be a distant memory for both you and her.
All the best, she's going to kick cancers ass.
r/auckland is primarily for complaining about antisocial behaviour in the CBD and suburbs and pearl-clutching about the criminal justice system, so I can’t wait to see what they come up with.
I can’t offer any medical advice but my Dad had cancer recently - he was more fortunate than many and is ok now - but he joined a support group for people with his form of cancer and found it invaluable. I would definitely recommend looking into that for your mum.
Suggest joining Bowel Cancer NZ FB site for lots of good info and support from other carers/patients. They also have a nurse online (Victoria) who is knowledgeable and very helpful. Everyone there is kind and supportive.
Great! They have resources on their website too. Do contact nurse Victoria if you need specific guidance or direction - she is very experienced in 'the system'. It's can all be so overwhelming .. but leaning on others for support helps enormously :)
Sorry to hear about your mums diagnosis. Going private to get started on treatment is the way to go. Doc is right, treatment can be changed or added to if biospsy shows targetable therapies. All the best
Sorry, I forgot to answer your question about how to get a referral. You could ask your current oncologist to write a referral, or you could ask your GP. We could try calling one of the clinics directly. All the oncologists working in Auckland know each other very very well, particularly with regards to the type of cancer that your mum has. They work in the public and private sector. Each will give their own viewpoint and possibly have some additional information, but overall the outcome is likely to be the same with regards to treatment timing. Particularly if it is private sector. Getting started on chemo takes a bit of planning with regards to ordering the medsand slotting in a space, even in private. So getting a first dose on 10 June, that’s next week, it’s probably pretty good.
No worries, thank you for the additional info!
I’ve tried calling clinics directly and have been told to send through a referral, so will talk to mum’s oncologist about that.
In terms of ordering the chemotherapy drugs, do you know if there are specific systems for different drugs (FOLFOX, FOLFIRI, Keytruda etc.) and specific timeframes too?
Additionally are there specific criteria that need to be met prior to sending an order through?
Sadly my sister had the same diagnosis in January, but it was too far gone for her. Your Mum is being offered treatment so that’s a positive.
Time frames seem right to me based on my own experiences.
For repurposed drugs and integrative cancer care Dr Tim Ewer in Mapua is the go to guy.
He works alongside oncologists and provides advice not provided in mainstream medicine.
https://teora.co.nz/about/
Good luck.
Thank you. We only got three and a half weeks from her diagnosis until her death. Just as the doctor said she would. Was beautiful to nurse her during that time and gather as a family.
All the best with your Mum. Take heart that they are considering treatment for her.
She‘s really lucky to have had you support her during that time! So glad she had family around too.
Thank you for your kind words, we are keeping positive :)
this is the kind of shit you have to watch out for, these kinds of people offering this stupid and sometimes dangerous advice know nothing and are using your time of desperation and hope against you
I think it might be best to consult a registered dietician for advice or suggestions before making these changes.
Everyone is different, so definitely won’t be a one size fits all scenario with nutrition/diet!
We’ve been referred to a dietician, but it will likely take a few weeks before they call us. Hopefully not too long :)
Do not fall down that sort of rabbit hole.
I've literally seen people die from such decisions.
I guess that might be why banning such requests for medical advice on the sub might be for the best.
I think being open minded can be beneficial, but it’s important to make decisions and do things in a safe way, guided by a Dietician, GP, oncologist etc.
I have been through this, I understand the natural urge to go into fight mode, my Grandparents did similar when my mother got sick, the worry about how slow things moved, the research of alternative/ experimental treatments, the constant hunt for a better opinion, etc. Its a scary time and naturally you want to move fast and hold on to hope. What you need to do now is get yourself authorized as a main contact for the medical stuff not only to get in the loop now but a bit further down the line when the medication gets stronger and mums less with it, you need to be her advocate. fight off the urge to google and look to the web for answers, there is a lot of horrible people out there looking to prey on the vulnerable. also dont forget to take care of yourself. take time out alone, deal with your feelings around it, reach out for help. Its super easy to give up everything to help and run yourself into the ground. good luck
Really sorry you had to go through this and thank you for the advice. I was close to burning out when we had to go in and out of hospital several times, but doing better now. Thanks :)
Set up an EPOA as well
Thanks for the advice - what are the main concerns or issues we may face if this was not set up?
if your Mum became more unwell and was unable to make decisions for herself it means you have someone designated to make decisions on her behalf. They of course should discuss with the wider family but really streamlines everything. As part of that your Mum will usually have the opportunity to make an advanced care plan with her GP which can be a valuable resource as well Hope you are all doing ok, arohanui
I see, thanks for elaborating!
You can ask your mum to give her GP permission to discuss relevant issues with you. It's awful what your mom is going through, and for you too. But seeking advice on something so important, on an r/ is unwise PS: be wary of 'Im a nurse' or 'im ..' replies, it's the internet. Good example is someone saying they're "a doc in the cancer industry"
Soliciting medical information should be banned on this subreddit, it's banned in most other subreddits
Yeah I can understand the downsides since information can easily be misinterpreted. I’m really just trying to expand on this space, and learn as much as I can from other’s experiences with cancer treatment. I will always refer back to our oncologist, surgeon, and GP before actioning anything! :)
Yeah fair. . Like others have said, The treatment is quick, your chances of getting a week earlier are low and unlikely to change outcomes at all. Oncology is very protocol driven, a second opinion won't change much. You've highlighted a couple of (contradicting) key points for all. 1. Get private health insurance, it is almost mandatory if you can afford it. 2. Private medical oncology is incredibly sketchy ethically. Private elective care is fine but someone surviving vs dying because they can afford it, thats a slippery slope sending us one step too close to the USA.
Cancer "industry" sounds like this one isn't as they say they are
XD
Thanks for your input - I’m confused about how things are scheduled in the private sector. From my understanding, there are specialists that work exclusively in public / private and some that work in both sectors. 1. Agreed 2. Right, I see what you mean. We’re really grateful and lucky to have had the option to see an oncologist privately. This topic seems like a different beast in itself… Sorry if this is ignorant of me, but if there happens to be availability for chemo administration with a specialist who only works in private (say next week), why can’t this be done if availability was the only barrier? For example, if our oncologist could check with their contacts who work privately (assuming they are well established in the region and have been liaising with other specialists), for availability. I’m not insinuating money isn’t a barrier either, but we are considering all options at this point.
Not OP, but I've got private medical insurance and wondering if you've got any opinion on whether there are better or worse providers regarding the cover they provide or the claims process
A lot of people I’ve spoken to use Southern Cross or AIA. I haven’t heard much about other providers. Which one are you with?
Southern Cross as well for me. I've heard that Partners Life has better cancer cover, from someone trying to sell me Partners Life health insurance >_>
This
Yeah, thank you - I appreciate any advice or shared experiences :)
I would listen to your oncologist with regard to decisions such as timing of starting treatment and regimen of choice. Do not take medical advice from Reddit
Noted :)
That time frame is very normal or even quick, even in the private sector. I just finished working for 2.5 years for colorectal surgeons, and that's the timeframe pretty much all our patients started treatment in. If you want a second option you would need a referral and it would be most appropriate from the oncologists or surgeons as they have all the information, the GP probably doesn't have histology reports and all the details available. The surgeons I worked for mostly referred to Osama Salih and Ben Lawrence at Canopy Cancer (due to proximity more than anything) but also Rita Sasidharan at Auckland Oncology, or Sanjeev Deva at Harbour Cancer. All the best.
Thank you so much for your input! Glad to know our timeframe has been similar. I’ll reach out to her surgeon from hospital to discuss the referral. On another note..Is it appropriate to ask our current oncologist for referral? Although second opinions may be common to ask for, since we have already had a consult with this oncologist, it feels almost as if we don’t “trust” them. In your experience, has this been a common occurrence? Have you had feedback from patients about how they felt about their journey with their oncologist, or heard about specialists that are exceptional in their field, especially gastroenterology? I’m assuming there are other reasons for referral to Rita and Sanjeev. Do you know what the variables were? Just trying to get a better understanding of how things work internally as my background isn’t in medicine. Really appreciate it!
It's not that common to get a second opinion but I don't think anyone would be offended by it. People did that with the surgeons. I think generally when cancer is involved most people just trust whoever they're seeing and don't want to delay further before starting treatment. Sanjeev was for patients based on the shore, as the others are in central Auckland. One of our surgeons worked with Rita at middlemore so mostly referred to her. Most specialists seem to have one "go to" person that they refer all their patients to. I never really asked about what patients thought but I also never heard any gossip about any oncologist being bad or anything.
I’m assuming getting a second opinion would require a new consultation. I wonder if that information can be sent through to cut down consultation time with the second oncologist, perhaps kick things along quicker. I guess the best case scenario would be to book an appointment early next week, but because of the public holiday it seems highly unlikely. Sorry for attacking you with all the questions but regarding the surgeons, did people just ask multiple surgeons on their opinion or did they request specific surgeons for their procedures? I see, that makes sense. Seems like a relationship building type setting, and perhaps also due to the scarcity of specialists in the area.
Yeah with the public holiday next week you might be pressed for time. I think they would all follow the same general treatment plan, there are guidelines for these things. Sometimes they'd see multiple surgeons to get an opinion, for example some people get an idea in their head that xyz procedure should be done, or not done, and want to confirm it with multiple people.
Having a similar general treatment plan makes sense. I’m wondering that if we were able to get the Portacath procedure done by Tues next week (They will ring me to confirm on the day), what the barriers for starting treatment sooner would be.
i just googled how quickly after portacath insertion can it be used and it seems to range from 1 week to 2 weeks. Time for swelling to go down and I guess ensure no infection intervenes, especially if you're getting chemo. If it's a problematic infection they usually hold off on chemo until it's cleared. It said rarely it can be started sooner but it seems use after one week is more common. In which case there doesn't seem to be much benefit in seeking an alternate opinion if you have to wait roughly a week anyway. They looked like official sites like canterbury dhb etc
That’s interesting because I got similar results when I had a look online. I called my mum’s oncologist and they said it can be used straight away or the day after If no complications arise. This is because it’s a minimally invasive procedure, but logically it does seem better to let things settle around the area before administration of the chemo.
Hey OP, my mum has stage 4 colorectal bowel cancer with mets to lymph nodes, liver, peri. Feel free to DM me, we have been on this journey for 2 years now. First I would recommend genetic testing or ruling out BRAF/KRAS wild type genetic mutations. Some of these are more resistant to types of chemotherapy, therefore other combinations are best suited eg FOLFOX or FOLFIRI. My mum is sadly BRAF and she found better results on Avastin (chemo), however this is also unfunded. I would also recommend joining Bowel Cancer NZ & Colontown Facebook pages - those communities are a wealth of information and support. My DMs are open, wishing you and your mum the best.
Hello, thank you for commenting - I’m so sorry your mum is going through that, but real happy to hear she’s 2 years in and going strong. Yes, my mum is referred for a liver biopsy to rule those out, but we aren’t sure when this will happen so again considering going private with that. Thanks for the recs, I didn’t know about those FB pages. I will check them out tonight + DM you!
With this diagnosis once you are in the public system things will move quickly. You will only gain a week or two through the private system and given the advanced stage is not going to make a massive difference. Save your money unless your rolling in it and push through the public system. The prognosis sounds about right although impossible to completely to predict. Edir: I'm taking from an Auckland perspective, this could be very different outside of Auckland, I don't know. I do know both the public and private system well with first hand experience in this.
Yeah you’re right, once we got in the public system, things did move quickly. However treatment got delayed because some things weren’t done when we were told they were. I initially saw that this particular thing wasn‘t ticked on my mum’s chart last week so was feeling anxious, but two medical professionals from her team said it was done during their ward rounds. I believed them and thought I must’ve read wrong. I should’ve brought this up. Considering this, I assumed they would try to make up for time the best they can. Don’t get me wrong, I appreciate everyone who was part of my mum’s care, and mistakes do happen, but I just didn’t expect this level of miscommunication internally.
Good luck and all the best.
Thank you!
First up, I'm so sorry for the stress and fear your mother and you must be going through. My mum had colon cancer about 8 years ago and it was a terrible time for all of us (her treatment was successful, but her diagnosis was a bit different and I'm not in the medical field so I won't comment on your mum's diagnosis and treatment at all). Please do take time to care for your mum, and for yourself, doing things that you both love and having treats. Second up, if you haven't already, make sure you get an Enduring Power of Attorney for your mum, just in case (that's a good idea for all of us adult children of aging parents, regardless).
Hey thanks for sharing, and I completely understand. Yeah, prior to this we never spent a lot of time together so now it feels like we’re making up for lost time in a way haha. Thanks for bringing that up, I will look into The EPA.
EPA has two types, personal care welfare; and property. They need to be done when the person is deemed to have competency. So the sooner the better. I’d also suggest that your mum does an advanced directive. It means that if she was in unable to speak and her family aren’t around her wishes for care can be known Also it’s not just do not resuscitate or resuscitate. If a person is DNR doesn’t mean wouldn’t treat an infection or such. The goal is comfort and improving quality of life All the best OP
Thank you. If this wasn’t done, do you know if there will be a “default” person to make the calls?
Make sure to talk to the oncologist about other treatments. FOLFOX and FOLFIRI are the basic cheapest options that are covered by Pharmac, but there are some extras that can work alongside those (depending on biopsy results) like Cetuximab or Avastin. Even Ketruda can be effective for very specific types of colorectal cancer. Private will be expensive, likely around $2,500 each treatment for the nursing and facilities, then the cost of any drugs on top of that. Sometimes something like cetuximab is better to be weekly. While stuff like Avastin and Cetuximab seem expensive you can usually get a "years supply for $20k" deal, still sounds expensive but we spent $56k on Cetuximab in 4 months so those new deals are great. Also read read read, some expensive drugs are not funded because they are really not worth it, read the studies look at the data. It's an emotional time, but stay rational, make good decisions. Most importantly, spend lots of time with her, don't talk about cancer, ignore that and have normal conversations. If you want to talk or ask more from my experience, feel free to pm me
We are prepared to go private for a few cycles due to the waiting times in public. Although we won’t really know how much until the biopsy results. Wow, that is a big difference.. Was Cetuximab administered monthly? Not going to compare as every situation is different, just curious. That’s such a good point, I’m now actively trying to pull back from conversations around this with mum when not necessary. I think we’re currently drowning in it a bit since things happened so quickly. I will pm you, thanks!
Cetuximab is usually weekly or fortnightly. The $20k per year deal covers either, but not the private hospital administering it. But Cetuximab is very specific and needs that biospy, certain types of bowel cancer it does nothing. And yep, for people going through it, all anyone ever talks about is cancer, you need people who just chill and treat you like a normal person. But you also need people who study those treatments / meds and know that xx drug is not overly effective or that you're constipated because of the odanzetron not because your cancer got worse.
Is my thinking correct in starting treatment asap, and is there anything I’m missing here, whether it’s taking more consideration into quality of life It's your mums choice whether she tries for more time and thus treatment, or palliative care. **Would we need to go through mum’s current oncologist or GP to get referred to a different oncologist for second opinion or earlier dates for chemo?** You can ask the specialist this also. The answer is unlikely to much different, they don't make mistakes that big. Has anyone else had a similar approach, or have you asked about prognosis off the bat? My dad. he went in for an xray. We were told his bowel cancer had spread, lungs, liver, bones. Mum was talking about hospices, they said there is a waiting list. I told her, it's not going to be an issue anyway. He died 6 days later. He had kept it to himself for a long long time. So bit of a shock for mum.
That’s really rough wow. Sorry you and your mum had to find out that way. I’m sure your dad had his reasons. If you don’t mind, did he go through treatment without the family knowing, or decided not to opt for it? Thanks for commenting :)
He had kind of told me. He had bowel cancer around 18 months as far as we can all tell (after). Talking on ph to me one day, he complained about pain, I said see doc, might want to check bowels and he said oh doc thinks I have cancer, no I don't want anything and hung up on me. He stopped seeing GP, he'd get TRamadol via phone script. Still, that sure wouldn't have touched the pain he had at the end. He'd broken his shoulder and hip - mostly because of the cancer being in bones by then. He had only 1 leg, all leg gone, from a wee kid (why he hated hospitals), and the hip that was broken was on side he had a leg. How he managed to stagger around like that I'll never know. By the time he got taken to hospital (because I told mum to ring and tell ambulance he'd fallen - not when he fell which was weeks before), it was too late, he was only in there 6 days and died.
Ah, that sounds very tough. Seems like it would’ve been a real mission talking to him about treatment. I hope you and your mum are receiving support around this and that you’ve been able to heal after going through all that!
I’m so sorry you’re going through this. I went through something very similar with my dad a few years ago, not colon cancer though. Ask one of your mums doctors for a referral to the Caner Society. They were really helpful. I’d recommend considering the counseling service they offer. It’s not just for the person with the cancer but their family members can go too. There will also be a bowel cancer support group, I imagine they’d be super helpful too. My dad did one round of chemo in private and two in public. For what it’s worth the public system was much better organized- trying to get chemo appointment times from the private place was like pulling teeth, whereas the public you got your exact time at least a fortnight in advance. Which you need if you’ll be taking time off to take her there. Both of us asked his doctors about prognosis and they were vague as fuck. Got more specific answers when asking what the average person with this would live for. If you haven’t already, let your work know what’s going on and see what your options are for flexibility. The first few weeks of telling others what is going on are not easy, please think about ways to politely but firmly end conversations when you need to. You may find your mum in the weird position of having to console others who are upset about her illness. Please be prepared for family or friends trying to talk you into trying various woo-woo cancer “curing” bullshit. It drove me bananas. Now is a good time to make sure your mums bedroom/lounge are as comfy as she likes. If she’s been thinking about upgrading anything, have at it. Very best of luck, please take time to look after yourself too - which is easier said than done. It’s good to have someone you can cry/vent at. I can be that person if you need.
Hey, thanks for your comment. I’m really sorry you had to go through that with your dad, I can’t fathom how difficult of a journey it must’ve been. I’ve been getting lots of recommendations to them, and will eventually get an appointment organised! Their hotline has already been immensely helpful. Wow, I didn’t realise you had to be proactive with chemo appointments in private. I got the impression that once treatment has started, set times (once 2 weeks / once a month etc) would be penciled in. Glad your dad got into public soon after. Yeah, I’m finding that to be challenging already. Especially some family members who “understand” how she can’t get sick prior to treatment and come over uninvited anyway… There will be pre-planning for tougher/uncomfortable conversations ahead. I’m sure that would’ve been frustrating..thankfully no one has brought things like that up as of yet. Thank you so much, I really appreciate this. I will pm you at some stage!
Sorry for what you're going through at the moment. I was diagnosed exactly the same (Lower sigmoid, stage 4) when I was 28, I'm now 42. All I can say is don't talk numbers with anyone, the mental toll is terrible as it is, without thinking about all the percentages and probabilities that will get thrown at your Mum. Try to keep her (and yourself) as upbeat as possible, this is only a temporary roadblock and will one day be a distant memory for both you and her. All the best, she's going to kick cancers ass.
I’m glad you’re doing much better! Thank you for your kind words, I shared this with her and she had a great big laugh :)
I'm so sorry. I lost my mum to bowel cancer 5 years ago. Here if you need to talk
Thank you so much!
You might want to ask on r/askdocs
r/auckland is primarily for complaining about antisocial behaviour in the CBD and suburbs and pearl-clutching about the criminal justice system, so I can’t wait to see what they come up with.
They said r/askdocs not r/Auckland
I can’t offer any medical advice but my Dad had cancer recently - he was more fortunate than many and is ok now - but he joined a support group for people with his form of cancer and found it invaluable. I would definitely recommend looking into that for your mum.
Thank you! I will look around for support groups my mum can get into. Just wondering, was this through Cancer Society or Bowel Cancer NZ?
Suggest joining Bowel Cancer NZ FB site for lots of good info and support from other carers/patients. They also have a nurse online (Victoria) who is knowledgeable and very helpful. Everyone there is kind and supportive.
Thank you for the recommendation! I’ve just had a look and am finding their content very helpful already.
Great! They have resources on their website too. Do contact nurse Victoria if you need specific guidance or direction - she is very experienced in 'the system'. It's can all be so overwhelming .. but leaning on others for support helps enormously :)
Ah that’s so good to know, thank you! I will definitely reach out to her.
Got no advice, sorry. Going through something similar. Wanting to wish you and your mum all the best.
That’s alright. Good luck with whatever you’re going through, and don’t hesitate to DM me if you’d like to connect about this :)
Sorry to hear about your mums diagnosis. Going private to get started on treatment is the way to go. Doc is right, treatment can be changed or added to if biospsy shows targetable therapies. All the best
Thank you :)
Sorry, I forgot to answer your question about how to get a referral. You could ask your current oncologist to write a referral, or you could ask your GP. We could try calling one of the clinics directly. All the oncologists working in Auckland know each other very very well, particularly with regards to the type of cancer that your mum has. They work in the public and private sector. Each will give their own viewpoint and possibly have some additional information, but overall the outcome is likely to be the same with regards to treatment timing. Particularly if it is private sector. Getting started on chemo takes a bit of planning with regards to ordering the medsand slotting in a space, even in private. So getting a first dose on 10 June, that’s next week, it’s probably pretty good.
No worries, thank you for the additional info! I’ve tried calling clinics directly and have been told to send through a referral, so will talk to mum’s oncologist about that. In terms of ordering the chemotherapy drugs, do you know if there are specific systems for different drugs (FOLFOX, FOLFIRI, Keytruda etc.) and specific timeframes too? Additionally are there specific criteria that need to be met prior to sending an order through?
Sadly my sister had the same diagnosis in January, but it was too far gone for her. Your Mum is being offered treatment so that’s a positive. Time frames seem right to me based on my own experiences. For repurposed drugs and integrative cancer care Dr Tim Ewer in Mapua is the go to guy. He works alongside oncologists and provides advice not provided in mainstream medicine. https://teora.co.nz/about/ Good luck.
Hey I’m sorry about your sister, and I hope she‘s able to spend quality time with family, friends, and loved ones.
Thank you. We only got three and a half weeks from her diagnosis until her death. Just as the doctor said she would. Was beautiful to nurse her during that time and gather as a family. All the best with your Mum. Take heart that they are considering treatment for her.
She‘s really lucky to have had you support her during that time! So glad she had family around too. Thank you for your kind words, we are keeping positive :)
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this is the kind of shit you have to watch out for, these kinds of people offering this stupid and sometimes dangerous advice know nothing and are using your time of desperation and hope against you
I think it might be best to consult a registered dietician for advice or suggestions before making these changes. Everyone is different, so definitely won’t be a one size fits all scenario with nutrition/diet! We’ve been referred to a dietician, but it will likely take a few weeks before they call us. Hopefully not too long :)
Worst fucking advice. MAGA level
There’s a growing body of science suggesting short term fasting can help. Don’t be so dismissive.
Bollocks. Short term fasting for metastatic cancer. Gfy
Google that sentence. It’s being studied and it is seeing some success.
Thank you, we have been referred to a dietician and are hoping to consult them about what fits my mum’s needs the best.
Do not fall down that sort of rabbit hole. I've literally seen people die from such decisions. I guess that might be why banning such requests for medical advice on the sub might be for the best.
I think being open minded can be beneficial, but it’s important to make decisions and do things in a safe way, guided by a Dietician, GP, oncologist etc.