Newly diagnosed. Am I being mucked around by the hospital?

Nattyv63

Hi I was diagnosed 4 weeks ago haven't had my biopsy yet...that's next Thursday 16/12. Listening to the Podcast is stressing me out because Charlotte was diagnosed and had surgery within 2 weeks whereas I haven't even had my cancer categorised in 4 weeks. Is this normal? Should I stick with the Alfred Hospital or go to Peter Mac? Everyone around me is saying things like "gee they're taking their time," or "it should be faster than that" but should it be? Is the time lag pretty standard? Their stress is stressing ME out lol I don't have private insurance so going the public route. Glad I found this community. Any advice appreciated.

wendy55

Hi @Nattyv63,
So sorry to hear that you have had to join our club,I fully understand how you are feeling,but please take a big breath,
these things unfortunately take time and of course this is the worst possible time of the year,I went public, but that is here in South Australia, so I have no understanding of the situation or the hospitals in Victoria, there will be other ladies who will respond who will have a better idea, I must admit that 4 weeks between diagnosis and biopsy is a little longer than usual, again, I can only imagine the covid situation is causing the delay, however if you are getting stressed, can you call or go and see your gp asap,and explain the time frame,you dont mention what type of cancer,do you have any information at all as to what is happening,knowledge is power,is Peter Mac private or public, I have heard so many good reports of Peter Mac, if it is public, certainly worth considering,do you have a oncologist yet? so many questions and not many answers at this stage,do you have a McGrath Nurse yet,please look up their website and put in your area and see what pops up or you could just ring the 1800 number there is a McGrath nurse on the telephone support 5 days a week.
I know that you will get many responses from other women who will be able to support and encourage you, Sunday is usually a quiet day on the forum,but as soon as I saw your post I thought I would respond and let you know that someone is thinking of you.I do hope that you have a good family support system,bcna has many resources and the other ladies will put these out for you, my cancer is er+ and the information I have may be slightly out of date as its been a few years since diagnosis and everything that follows, please take care and look after yourself, try and fill your time in between now and the 16th,once you have your biopsy everything will then start to follow, but if you are unsure of the hospital as in RPA versus Peter Mac, keep asking questions and then you might have a clearer picture,
big hug to you,
wendy55 

Nattyv63

Hi Wendy!
Thanks for responding. I'm 58, single, don't have many friends, and my family live over an hour away. I've always been independent so having to reach out for help is very much outside of my comfort zone. Everyone has their horror stories about various hospitals but the Alfred Hospital is 10 minutes down the road which is handy being alone as I can get there and back quickly in an Uber/taxi. I have been given a Breast Care Nurse at the Alfred who has been quite responsive. Although she did say that she wasn't happy with the wait for my core biopsy but there wasn't anything she could do about it. My surgeon was lovely. 

arpie

So sorry to see you here, @Nattyv63 - but @wendy55 has pretty well covered it ..... the wait for biopsy/surgery can be anything from 2-6 weeks ..... my lump was found in Nov, I didn't have the biopsy til after Xmas, (so a 6-7 week 'long wait' ...) I got my result in early Jan, but was then lucky to then have my surgery 2 weeks later (as a private patient - probably a longer wait if I'd gone public) - as many surgeons have at least a 2-3 week 'break' over Xmas/New Year & start operating again in Mid Jan.   

Not being from Vic, both hospitals appear to have good reputations .... it is more where your surgeon is, I think ... 

Great that you have a lovely surgeon & a responsive Breast Care Nurse .... if you have any questions, you can also ring our HelpLine Mon-Fri  (the number is in the blue band at the top of the page) - or just whack up questions here ...... and we'll do our best to help you.

if you get stressed or  overly sad tho - ask your GP to refer you to a counsellor - to help with coping techniques .... 

take care & all the best with your ongoing treatment xx

Nattyv63

Thanks Arpie, that's good to hear. I'm kind of "well it's the way it is," but it's people around me who are stressing more and then causing my anxiety to go up because of their expectations. lol Will do! Thank you x

FLClover

Hi @Nattyv63 🙂. 

From one extremely independent woman to another, the first piece of advice I’m going to give you is: start getting used to ASKING FOR HELP!!! Life is ying and yan. There’s no balance if you never get help, only give it. It causes illness. Believe me, it took me about 30 years to start asking for help, and I’m 41. I learnt the hard way, but life is hard and asking for help should be the norm. It doesn’t make us weak at all, it makes us human. You’ve taken the first step, so good on you 👏🏻😊. 

Second, don’t let others stress you out, because they don’t know what this process involves. People tend to stress by nature, but it’s not helping anyone. Things don’t move as fast as everyone thinks they do, and waiting is normal. 

Having said that, it is a bit of a wait for the biopsy. I think public hospitals do tend to make you wait ages, but that doesn’t mean it’s always ok. Don’t stress please, but do get on their backs about speeding things up. Covid is making everything slow down unfortunately, but you shouldn’t have to pay for that with a poorer outcome due to delayed surgery etc. So keep calling or emailing them, hassle them, do what you need to, and try to get an earlier appointment. 

Good luck ♥️

Keeping_positive1

Sorry you are experiencing a wait in the public hospital system, it was the same for me.  However rest assured you will get good treatment at the hospitals in Melbourne, although the wait can be rather daunting.  I looked at your profile and I was diagnosed the actually same day (23 November), but my diagnosis was in 2016.  Unfortunately being close to Christmas and holiday season it can be a little bit extra time to wait, and my surgery was on 24 January, so was 2 months later.  I am also in Melbourne and went to the Austin, which is an EXTREMELY busy hospital.  I later changed to the Northern Hospital, as it is closer to home and I continued on with my chemo, and the staff there do not appear stressed.  I hated all the noise at the Austin, and we were given a buzzer and called by buzzer when our turn came.  Buzzers, going off left right and centre!  

Try not to stress, because I know that the Alfred and Peter Mac also have really good oncology departments, but you may have to wait longer as you are finding out, but it would also be the same with the Austin, as was the case for me.  I not sure about Royal Melbourne, but my guess is perhaps just as busy as all the inner Melbourne public hospitals.  That said though, they do have all the facilities, not like the outer Melbourne public hospitals, example the Northern do not have all the ancillary rooms/services  but they send their patients to the private ones in the area, and is bulk billed, and I ended up being sent to a private local radiation clinic as a public patient.   You will get the treatment you need but do keep in touch with them to make sure they are lining up the appointments for you. I have known public patients who have chosen the Alfred over some other public hospitals for some surgeries they need.  I really hope things progress for you quickly after your biopsy has taken place.  Take care and I wish you all the best. xx

Keeping_positive1

I have heard the podcast where Charlotte says she had surgery in 2 weeks.  However I can tell you I do not know anyone who has gone through the public system to have their breast surgery within 2 weeks of diagnosis.  The public system uses a MDT (multi disciplinary team), which meets and discusses test results, and this in itself can be a process, they don't act singularly!  I get quite annoyed because most of the podcasts will indicate we will have surgery rather quickly. 

Julez1958

Hi there
the waiting is the absolute worst part , I felt like my cancer was like a piece of radioactive waste inside me and I wanted it out ASAP!
Mine was 5.5cm ( the biopsy said 4.5 but the MRI said 5.5) which is a large tumour any day of the week.
My breast cancer surgeon told me that it was very slow growing and had been there for a while and a few extra weeks getting the appropriate staging tests done and waiting for surgery would not make any difference to my outcome.
But I still felt it ticking away inside me!
I had a mastectomy and the sentinel lymph node was clear ( whew!) so I didn’t have to have chemo although I did have radiotherapy due to the size of my tumour.I am also now on hormone therapy.
I agree with the others you need to advocate for  yourself if you feel you are being mucked around - your breast care nurse and GP would be the first port of call.

Zoffiel

Yeah @Nattyv63 I'm in favour of making a fuss. But I'm like that.
Mind you, if you ever have the option of when to be diagnosed, FFS don't choose the bloody 'festive season.' Most of the people with seven acronyms after their name piss off and leave a bevy of teenagers in-charge. It's a very difficult time to get anything done.
The couple of weeks delay is not likely to be critical from a physical perspective, but it can certainly do your head in.
Doesn't mean you shouldn't do everything you can to be head of the queue when the machine finally grinds back into motion. Good luck. Mxx

Cath62

Hi @Nattyv63,

Just wanted to say hi and send a virtual hug. The other ladies have all given good advice to you. One day at a time with all this but I agree with others about putting a bit of pressure on to speed things up on that biopsy. 

Also the podcast. I am a year post my active treatment (surgery, chemo and radium) I listened to the podcast recently. It is probably too early for the podcast for you. Maybe in a few months it might be better. 

Agree with @FLClover about asking for help. It is no time for being superwoman now. I am super independent but I did accept help because I had to focus on treatment and depending on what you have it all can take months. It can be exhausting physically, emotionally etc so help is needed. 

I am 59 and I don't work now and I didn't work through treatment either which was good for me. Some people work and are ok but it all depends on how you go and the thing is no 2 breast cancers are the same. All our treatments are tailored just for the individual.

I would recommend having someone with you for appointments as there is an overwhelming amount of information to process. Having a support person with you is good in so many ways. It is good to write questions down too so you get answers to what you want to know.

People don't mean to stress you out and you wouldn't believe the things people can say during this. Some people or friends are great but others may not be so great during all this. You certainly find out who are real friends and you will not want everyone on this journey with you. 

Speak up and let people know if something they say is upsetting you and if some people keep upsetting you then consider if youneed that contact at this time. This is definitely a time for boundaries. You must put yourself first. Also speak up to the medical team too. This is your show and you need to be the project manager of your own health. 

Be kind to yourself. Keep engaging with the breast care nurse and seek counselling if you need it because there is alot to process with this. 

Best wishes 💐

Nattyv63

Thank you everyone for your wise words and advice! I feels nice to have you all “out there!”

Nattyv63

I’m a teacher working full time but am thankfully on holidays as of last Friday! I just hope I can get started on my treatment - whatever that will be - in the next few weeks. Thanks again for your help.

Locksley

Just wanted to say hello.  Everyone has given you great advice.   Be kind to yourself.

Nattyv63

Thank you and hi yourself! 😀

AllyJay

Hi there @Nattyv63. As has already been said, the grindstone that is public medicine can sometimes be a bit ponderous. One's natural instinct is to get rid of the cancer now...preferably yesterday...or last week, but behind the scenes the wheels are turning. Having said that, I've been known in the past, when getting the general run around waiting to see someone other than a minion still using their training wheels, to dig in my heels. On this occasion I was getting the old "Dr So and So is busy with his clinic right now, but give me your name and number, and his clerk will give you a ring to set up an appointment". This was the third time around with this not-so-merry-go round. I said, "Not to worry, I've bought a packet of sandwiches, a banana and a bottle of water from home, and I also have my knitting and kindle...I'll be happy to wait". After about an hour of watching me munching and yarn flicking...lo and behold...I was called in to see The Great Man himself. The squeaky wheel gets the oil.