Advice on making treatment decisions

Megs04

Hi all. I thought this would all be cut and dry. Im still waiting after x3 appointments with surgeons for a recommended  treatment plan.
They were waitng to MRI results as iver xmas the radioligist went on holidays so last weeks appointment i was told i coukd probably choose masectomy or lumpectomy but lets see. So i leave thinking about that. 
This week they found another lump. So booked for another biopsy. Will go again but surgeon suggested chemo to shrink then possible lumpectomy depending on results and uf i choose chemo First. What if i dont want chemo first. Even masectomy hes saying chemo after anyway.
Si many decisions and inconsistencies which continually change. They are scaring and confusing me. Do i have to decide at next appt? Registrar said yes to that at last appt.Does anyone have any advice on who to speak to or how to decide or where to find information please?. Its a bit overwhelming.

primek

I guess what they are saying now is because of 2 lumps the only way to preserve the breast is if chemo prior shrinks the tumor enough to do lumpectomy. If it doesn't then it will need to be a mastectomy anyway.
Only you can decide if you want to try and save part of your breast...no guarantees,  or just go for mastectomy then standard treatment.  They need the decision so they can book your surgery or book an oncologist. It's tough but you will feel better once you've decided.

Zoffiel

Hi @ megs04
I have learned to be very wary of advice given by residents, registrar's, students or random passers by. You will need to talk to your surgeon , again, and get them to explain more clearly what you options are. They can be hopeless at that stuff, but persist until you understand what is happening and why. It sounds like they want you to have chemo either way, which sucks but it's done for a reason and it's quite common to have that before surgery, particularly if you are considering any reconstruction. That is another conversation you need to have.
If they think you should have a mastectomy first, they will tell you. M

Megs04

Thanks ive only seen the surgeon when she diagnosed me. Each apt is some registrar.a surgeon came in to check the MRI and quckly yold me sll this. I hsdnt thought about reconstruction. As i am public patient and dont have money if it is at a cost. I read somrwhere i coukd ask aboit it. Maybe at my next apt.?

iserbrown

I hear your frustration however thoroughness in testing sets the best treatment path possible.  
Take care 

Blossom1961

I am a public patient and I was offered recon at no cost. I didn’t want it but it was offered. The only out of pocket cost I had after my initial diagnosis was for the clips to be inserted and prescription medications for home use. Oh, and parking.

kezmusc

HI @Megs04,

Even at a public hospital it is unusual for you not to see the consultant for all appointments prior to surgery.  Unless said surgeon was on christmas break which is highly likely at this time of year.

Do you have a breast care nurse?  If so she should be your advocate here. Call her and voice your concerns.  If you don't, request one. If your hospital does not have any you can get their numbers off the Mcgrath breast care nurse website.

If that doesn't work out you are going to have to demand to see the surgeon at the next appointment. End of story.  The public system is pretty good but it's busy and sometimes you just have to jump up and down a bit.  Don't be afraid to speak up.  This is your show and you need clear advice to make informed decisions.

 if you get nowhere ask to see the hospitals patient liason officer and make a complaint.  They will get their shit together as soon as you mention that...guaranteed. 

All the best.
xoxoxo

AllyJay

Hi there @Megs04, I am also a public patient and I agree with @kezmusc about the Patient Representative Officer or Liason Officer (same person, different titles used). When people try to brush me off regarding my request, whatever it is, by saying that the person I want to speak to is busy at the moment, or it will take time to find somebody to do whatever (typically find a nurse who is qualified to access my port) or somesuch crap, my usual comeback it," Oh never mind, I don't mind waiting...I've brought some sandwiches, iced tea and my knitting. I'll wait." I then unpack my knitting, grub and tea. That usually puts some energy into their efforts. After about half an hour, I then drop the Patient Rep bomb, and that is 100% guaranteed to get them moving.

kmakm

When asked what advice I'd give newly diagnosed BC patients, one of the things I say is you have to be your own advocate. Even with the best will in the world, to the doctors and nurses you are one of many. You are the expert on what you want and need and need to speak up when you feel you're not getting what you require. If you find this difficult, perhaps you can take someone with you who finds it easier, a friend or family member.

Writing down your questions as they occur to you between appointments is a good idea too; the doctors are used to patients working from a list. It's a very steep learning curve this breast cancer business.

Don't worry about slowing things down a bit. If you need an extra couple of weeks to think/enquire/talk over/get counselling, it should be perfectly all right. The doctors will tell you if it's not.

There are different waiting times in different states for reconstruction if it's not done immediately, so that can be worth checking.

Hang in there Meg, it'll get better. K xox

Megs04

Thanks everyone. @kezmusc. When you say consultant do you mean. The surgeon.
One of the issues has been xmas new years. So many on leave. The breast care nurse comes back monday as does original diagnosing surgeon. I think the last 2 apts shoukd not have happened as registras and not all results were in. Im having to take 4-5 hours off work each time too.
Thanks for info about liaison. Im trying to be the expert but thats not easy. Especially when there isnt a lot of time tomwork things out. Trying to understand hoew its all going to pan out time/ life wise

arpie

I am SO sorry you are going thru all these delays re your treatment plan & surgery dates ..... it only exacerbates your own anxiety levels & I know how that feels after the balls up with my biopsy in Dec!     And finding another lump would be most concerning too      Chemo/surgery/chemo is a well recognised treatment for some cancers .... it could well result in less invasive surgery.  You can only go with your Surgeon's suggestions - whilst 'listening' to what the others are saying as well.

Yep, write down ALL your questions & thoughts so have your own 'plan' for the appointments - and even record them, to go over what is said afterwards, if needed.  Do you have a good friend to go with you as backup and support?  They might be able to contact the Patient Rep/Advocate on your behalf .... cos I know I would just be too upset to make any sense!    

Many health professionals only return to work in Mid January (as with my surgeon last year - so I had to wait for his 1st appointment on Jan 15th ... and then had sentinel node test the next day & surgery the day after, Jan 17th.) 

Hoping you see your surgeon soon & get the plan going ..... take care, big hugs coming your way xxx

kitkatb

Hi @Megs04 ; I hear your frustration and the good ladies as always have given you great suggestions.  The only thing I would like to say is that I found my breast care nurse was my go too in all matters as she had a phenomenal amount  of experience in all matters of the BC journey. She was in all of my meetings with surgeon, registrars etc and never failed to put things in good old basic English so I would understand each step and process for my addled and overloaded brain to cope with. ( I had 3 surgeries and chemo ) I wish you all the best and hope you get to see your surgeon and BC nurse ASAP to put your mind at ease.  Big hugs to you. xox

kezmusc

@Megs04.  Yes I do mean the surgeon.  Hopefully it all straightens out now that everyone should be back on deck after xmas.

xoxo