Waiting to set up surgery feels worse than purgatory

mericelle

Hi all. My mum was diagnosed with breast cancer last week. Stage 1, grade 1, 8mm lump, oestrogen and progesterone positive, HER2-equivalent. The clinic told us to wait while they organise for a consultation with a surgical team. They haven’t given us a straight answer on how long this will take.
It’s so painful. Every single day I think about how there’s a cancer inside my mum and it could be getting worse at any second. Not only do we have to wait indefinitely for a consultation, but who knows how long before we can even book in a surgery? I can’t take this wait anymore. I just want the thing out of her NOW. It’s only been a few days but I’m losing sleep, can barely function, and all I think about every waking second of the day is the cancer possibly growing and spreading to her lymph nodes.
In your experience, how long is the wait to surgery and how long is too long before we should look to booking with another surgeon/hospital that can take us sooner? And how can I cope with this torturous wait without losing my mind? I feel like I’ve already lost about half of it. Please, I need some reassurance to get me through each day. Thank you.

Afraser

Hi @mericelle

I know the waiting is hard, possibly harder than if you are the one with cancer, but no one is going to endanger anyone by making sure that they have consulted and taken everything necessary into consideration. A wait at this stage is not unusual. Before you knew the diagnosis, you weren’t concerned even though, unknown to you, the cancer was there. So breathe deeply and be as supportive as you can. It’s reasonable to follow up and ask again for a date. There will be lots more to take in and think about as treatment is confirmed, but the problem won’t progress that fast and your medical team will be looking to ensure that their proposed treatment is effective and appropriate. Looking after yourself is important do you can best support your mother. Best wishes. 

mericelle

Afraser said:

Hi @mericelle

I know the waiting is hard, possibly harder than if you are the one with cancer, but no one is going to endanger anyone by making sure that they have consulted and taken everything necessary into consideration. A wait at this stage is not unusual. Before you knew the diagnosis, you weren’t concerned even though, unknown to you, the cancer was there. So breathe deeply and be as supportive as you can. It’s reasonable to follow up and ask again for a date. There will be lots more to take in and think about as treatment is confirmed, but the problem won’t progress that fast and your medical team will be looking to ensure that their proposed treatment is effective and appropriate. Looking after yourself is important do you can best support your mother. Best wishes. 

Thank you @Afraser. I really appreciate your comforting words. I guess it’s hard to cope knowing that my mum is walking around with cancer inside her and nobody is doing anything about it for the foreseeable future. I’ll try to refrain from pestering the hospital every morning like I’ve been doing since the diagnosis.

Afraser

Hey, the hospital knows how it feels! Main thing is to understand if they can’t tell you yet, it will all happen in time and then you’ll probably all be rushed off your feet. Keep your thoughts on the positives - it’s stage 1 (good) and it’s diagnosed (doesn’t feel good but truly it is). Treatment will focus on what you all want - getting rid of the cancer and stopping it coming back. One thing for sure, you will be amazed at what you really can cope with. Take care. 

mericelle

Afraser said:

Hey, the hospital knows how it feels! Main thing is to understand if they can’t tell you yet, it will all happen in time and then you’ll probably all be rushed off your feet. Keep your thoughts on the positives - it’s stage 1 (good) and it’s diagnosed (doesn’t feel good but truly it is). Treatment will focus on what you all want - getting rid of the cancer and stopping it coming back. One thing for sure, you will be amazed at what you really can cope with. Take care. 

Thank you very much. I appreciate your advice, @Afraser

strongtogether

I really feel for you, and know how hard the waiting can be.
" I guess it’s hard to cope knowing that my mum is walking around with cancer inside her and nobody is doing anything about it for the foreseeable future. "
Keep in mind that they are doing something about it now - which is planning the best way forward for her.
 As @Afraser said this is not going to impact her condition. They know a lot more about the cancer than we do, it is their job after all!
 Try to relax and help your loved one through this by being there, helping her practically and emotionally if possible. It's only a question of days before her treatment begins.

arpie

So Sorry to hear of your Mum's diagnosis @mericelle     - it is good that you are going to be good support for her!  It is good that it is early stages & fairly small .... those things are in her favour. 

The 'wait time' varies on so many different things - are you rural?  That alone can impact things (maybe if you pop your Mum's city/town name in your profile, local members may be able to point you to specific agencies that may help her further down the track?)

I am rural & my lump was found in early Nov 2 years ago. By the time I had the extra mammogram & ultrasound (the mammogram 4 months earlier didn't 'find' the lump!) and then the Biopsy - it was after Xmas.  Then the wait for the results for the Biopsy - it was Jan 5 before it came back positive - and of course all the surgeons were still on their Xmas break!  So I finally saw a surgeon in Sydney in mid Jan & had the surgery (lumpectomy) 2 days later, and only in overnight.  Mine was maybe a tad bigger than your Mum's - and I was AMAZED at how 'good' I felt after the surgery!  The pain or discomfort wasn't 'massive' - just make sure she takes the painkillers as advised .... there is no point being 'stoic', when in pain!

The waiting really mucks with your brain more than anything else - I suggest that you both keep REALLY BUSY doing what you love doing (I just went fishing every day!  LOL)  

All the best - I hope you get a 'surgery game plan' soon - then it all depends on the pathology after the surgery as to what the next steps are.

take care xxx

mericelle

arpie said:

So Sorry to hear of your Mum's diagnosis @mericelle     - it is good that you are going to be good support for her!  It is good that it is early stages & fairly small .... those things are in her favour. 

The 'wait time' varies on so many different things - are you rural?  That alone can impact things (maybe if you pop your Mum's city/town name in your profile, local members may be able to point you to specific agencies that may help her further down the track?)

I am rural & my lump was found in early Nov 2 years ago. By the time I had the extra mammogram & ultrasound (the mammogram 4 months earlier didn't 'find' the lump!) and then the Biopsy - it was after Xmas.  Then the wait for the results for the Biopsy - it was Jan 5 before it came back positive - and of course all the surgeons were still on their Xmas break!  So I finally saw a surgeon in Sydney in mid Jan & had the surgery (lumpectomy) 2 days later, and only in overnight.  Mine was maybe a tad bigger than your Mum's - and I was AMAZED at how 'good' I felt after the surgery!  The pain or discomfort wasn't 'massive' - just make sure she takes the painkillers as advised .... there is no point being 'stoic', when in pain!

The waiting really mucks with your brain more than anything else - I suggest that you both keep REALLY BUSY doing what you love doing (I just went fishing every day!  LOL)  

All the best - I hope you get a 'surgery game plan' soon - then it all depends on the pathology after the surgery as to what the next steps are.

take care xxx

Thank you for sharing your experience @arpie. Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that my mum’s cancer could be worsening and spreading over such a long period of time would kill me.

mericelle

strongtogether said:

I really feel for you, and know how hard the waiting can be.
" I guess it’s hard to cope knowing that my mum is walking around with cancer inside her and nobody is doing anything about it for the foreseeable future. "
Keep in mind that they are doing something about it now - which is planning the best way forward for her.
 As @Afraser said this is not going to impact her condition. They know a lot more about the cancer than we do, it is their job after all!
 Try to relax and help your loved one through this by being there, helping her practically and emotionally if possible. It's only a question of days before her treatment begins.

Thank you for your kind words of encouragement, @strongtogether

Keeping_positive1

I had a two month wait, but it didn't kill me.  But if it had advanced and gone further than already being in my lymph nodes, I would have sued, for sure.  Public system does really need a shake up at times, and more funding.


Keep at them, don't be as patient as I was.  I am sure your Mum is in good hands, with you following up for her she will be fine, what a lovely daughter you are.

mericelle

Keeping_positive1 said:

I had a two month wait, but it didn't kill me.  But if it had advanced and gone further than already being in my lymph nodes, I would have sued, for sure.  Public system does really need a shake up at times, and more funding.


Keep at them, don't be as patient as I was.  I am sure your Mum is in good hands, with you following up for her she will be fine, what a lovely daughter you are.

Thank you. I’ll keep following up for her no matter how annoyed they get at me.

arpie

.....Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that my mum’s cancer could be worsening and spreading over such a long period of time would kill me....

No .... I don’t think there was any advance in my cancer at all.  It is just the ‘process’!!   Just so YOU know, yourself, having dense breast tissue is what makes it difficult to identify some cancers .. just make sure you ask what type of breast density you have when you get checked next.  Have an ultrasound if they say ‘dense breast tissue’!

Record all of her appts with her on your phone so you can go over it again later on, in private!

all the best xx

Keeping_positive1

I don't think it advanced mine either as I didn't have to go back for further surgery,
All the best. 

mericelle

arpie said:

.....Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that my mum’s cancer could be worsening and spreading over such a long period of time would kill me....

No .... I don’t think there was any advance in my cancer at all.  It is just the ‘process’!!   Just so YOU know, yourself, having dense breast tissue is what makes it difficult to identify some cancers .. just make sure you ask what type of breast density you have when you get checked next.  Have an ultrasound if they say ‘dense breast tissue’!

Record all of her appts with her on your phone so you can go over it again later on, in private!

all the best xx

Thank you for the advice, @arpie.

Annie C

@mericelle
I had a wait of 6 weeks from diagnosis to surgery. I am very remote. My treatment centre is 2,300kms from where I live. I needed to organise suitable accommodation close to the hospital. 

The wait had no negative effect on my cancer. Like keeping_positive, I did not need to go back for further surgery even though my tumour was a grade 3 (aggressive). 

It was hard, as like lots of women, I wanted this out of my breast fast.  And like a lot of women, by surgery time, I was writing funeral hymns and ordering the flowers that I wanted. 

However all went well.

Warmest of Kimberley wishes to you and your mother for a good outcome in treatment. Your mother is a very lucky woman to have a fine caring daughter.

Annie

mericelle

Wow! That must have been very stressful for you, @Annie C . Congratulations on making it through despite the less than ideal circumstances. And thank you for your kind words. I will try to alleviate my concerns, but it’s hard not knowing when this nightmare will be over. This forum and the lovely people on it like you will help get me through the wait.