Chemo deferred due to Neuropathy, mixed emotions

@Nefertari I strongly believe you are the expert in your own diagnosis. As well intentioned as most medicos are, we are just one of many patients. It's so important to advicate first and foremost for yourself. Well done! I don't know you but I'm proud of you! None of this comes close to easy and you've had a really rough trot. I hope things go smoothly from now on. K xox

Thanks everyone,  I am feeling calmer and hoping that the Pre admission Clinic and the consultation with a real 'Surgeon" on Monday will clear up any questions that I have.  I didn't feel like I was being unreasonable, I just needed to know what to expect regarding the surgery and the plan going forward.

Beryl, I think my GP meant the passive comment as a compliment, english is his second language.  He clarified it with being too accepting / trusting of them and he was adamant that I have rights and should not be made to feel powerless.

I think he is a very unique person as he has many breast cancer patients ( male and female) that he treats.  I believe he truly understands the impact that this sucky disease has on people's bodies and souls, he did say that he has heard many tales similar to mine :(

I will let you all know what happens Monday, bitch face may just have a glass of wine tonight haha

I cannot thank everyone enough for mulling this over with me and giving me ideas.  I do hope that not many other women have to go through this bs on top of BC.  I have learnt a valuable lesson, don't just accept everything because they are the professionals, ask questions.

You must be feeling so relieved @Nefertari .  And, yes, give yourself a huge pat on the back for having the resilience and determination to follow through and get an answer.  I can easily imagine how overwhelmed you must have been feeling and to have got it sorted shows how strong you are.  (And a gold star to your GP, as well!)

Nefertari - whew! This has been some ordeal for you and although you say your GP is wonderful (as is mine) I do believe that their understanding of the mental and emotional shock that comes with diagnosis is limited. Suggest you just ignore 'passive'. The labyrinth of appointments let alone confusions and delays is sufficiently stressful to induce a range of emotional and physical responses/reactions. I hope that you'll soon be able to look back on these experiences as a time in your life when you 'went in to bat for yourself' and surprised yourself with your courage and resolve! Here's to 'bitch face', maybe she'd enjoy a glass of red or white!

Update:

I have my surgery date 24th May and I have an appointment with the Pre Admissions Clinic on Monday at 9.30am.  After that a consultation with the Breast Surgeon.  Obviously pays to complain?

Thanks again for your support everyone.

This is the latest and I do feel a lot calmer today and more informed thanks to my wonderful GP and the nurse I see in Oncology.

Yesterday I went to the GP to have my flu and pneumonia shots and explained everything that had happened so far and all that I had been told in the surgical consult.  He was quite concerned as some of it was conflicting (his words).  He wrote an email to the Head of Breast Surgery and sent it while I was in his office, followed up with a call .  He also gave me a big hug when I was leaving, bless him I needed that. :)

When I came home I got a call back from the nurse and we went over everything, she was able to tell me that I am having a wide local excision not a masectomy (at this stage) and will have the sentinal node biopsy done the day before surgery. 
An ultrasound will be done before the surgery not on the day as the trainee said.

I am triple negative, so no I won't be having hormone treatment as he told me.  The Surgeon will call me next week to outline my plan and answer any questions that I may still have and arrange a consultation with him if needed, and yes he is doing the surgery so pheww :)


Thankyou, thankyou, thankyou  to all you lovely ladies for the support, 

@Nefertari, I too had chemo first, then surgery. I did have a mammogram and ultrasound about 2 weeks after my last chemo, and surgery 10 days after that. Whilst I didn't have a sentinal node biopsy (I knew I was node positive so went straight to axillary clearance), I did have a radioactive tracer injected in to the tumour site the day before surgery, under ultrasound guidance, as well.

You've certainly had a rough time. As @Sister has said, all hospitals will have a process by which to moke complaints, compliments and comments. I would suggest you just jot down the events of the recent past, and how it has made you feel, use what you've written here as a basis. You don't have to do anything with it now, but down the track, when you're ready emotionally you can put it all in writing and send it to the hospital.

I have one other major concern. In amongst the paperwork that was completed the other day, from what you've said, I sispect was your consent for surgery. Also, from what you've said, I  don't beleive the consent is valid. In all honesty, can you say what procedure/s you're having on the day, because if not, I wouldn't be letting them touch you, until you know and have a reasonable understanding of what surgery they're recommending and why

Re your scan Q - I had surgery, chemo then rads and then they wanted to send me on my Merry way with no scans. I had a bit of a disagreement with my oncologist about this and am now having bone and ct scan next week, though she’s not happy about it.

My understanding in WA is that you no longer get scans after treatment finishes, just a yearly mammogram or on scans if you feel symptoms or a lump.  Given I had no symptoms and didn’t feel a lump in the first place that wasn’t much comfort for me. I insisted on the scans since I haven’t had any since before surgery, and I want some reassurance that the surgery/chemo/rads all worked!

Thanks everyone your support, it has got me through the last few difficult ;) days when I felt I was heading for a complete meltdown.

@ Beryl, unfortunately I have no one that can come as an advocate for me, that is why I have faced every appointment alone.  I picked a bad time to get BC ;) as there are four other family members facing their own battles and being cared for, two in a much worse situation than mine, I cannot burden them or their carers. 
Others are working full time including hubby and since I am not working we cannot afford for him to have time off during the week.  Also he is very forgetful haha I wouldn't be able to rely on him to remember things, Bless him , he has other good qualities.

@ Tee Pee, I did ring my GP yesterday (very caring and attentive) I discussed it with him and he is writing a letter on my behalf, which he will email to them and follow up with a phone call to the Oncology and Surgical units, he will emphasise the uncertaintity  I have regarding the surgery and who is doing it.  Also I am puzzled why they dont do a scan now to see what affect the chemo has had on the tumour?


@ Sister, I definitely did not take you reply as Bossy :) , you always give good advice. 

As far as a breast care nurse I do not know as I was introduced to the Breast Care Co ordinator early after diagnosis and she gave me her card.  I called not long into treatment and was told she was on leave for three weeks and no one else was offered as an alternative. 
 
When all this surgery, neuropathy, cancelled chemo came up I called her again last week and it was a recorded message say she is not available till after June some time.  I listened to the whole message and there was no "replacement person" just if an emergency go directly to hospital etc

I have also rang the nurse I have seen most often at the hospital (instead of the Oncologist)  she is great and she is going to speak to them also and call me back, today.

I don't think it is intentional, my GP says seems to think it's because I'm too passive and not complaining like others do, he may be right, I do not know.

In any case I feel calmer and will see what come of this.

MY BIG QUESTION is to anyone that has finished chemo and heading into surgery :

Do you think it's appropriate to wait until surgery day to check what effect the chemo has had or should a scan be done earlier??....three to four weeks waiting for that just seem like torture to me.

@Nefertari I sent the earlier reply off and then it came back to haunt me.  Of course, in an ideal world, what I have suggested is valid but I need to say that I'm giving advice from the perspective of a person who struggles these days to pick up the phone to negotiate a dental appointment.  So my apologies if my response seemed bossy or overwhelming.  I hope you have an advocate who is happy to go into bat for you and give you some physical support.