Im really struggling with the waiting - I had a lump I discovered last year and had a upcoming mammogram booked that come back no evidence of cancer just before christmas. So by the time I went to the GP it was Mid Jan- had Ultrasound on 29th - no doctor there that day to do biopsy so had to get new referral and come back another 10 wait. Diagnosised ILC T3 ER+ PR + HER2 Low +1 grade 2 possible 8.3cm ( all information I have had to gather myself) on 11th Feb. Still waiting for a specialist appointment so its been going on for about 5mths. Only help information I have so far is what I have got from my GP and from private PET scan the waiting feels like forever. I got an appointment date today for another 12 days away. I really just need to know what treatment will look like. I like to plan.
HiMillymonster I am sorry to hear about your diagnosis and the recurring hurdles you have encountered to arrive at a diagnosis. This is a tough phase and I’m sending you big virtual hugs as you try to find out what this might mean for you.
It sounds like you’re triple positive and ILC which is the same type I had. My tumour was 3.8 cm in the left breast situated near the nipple.
So much about breast cancer, including triple positive, is variable including treatment as it takes account of a whole range of things, some relate to family history - so what I experienced may not be what is recommended for you. However in case it helps to give an idea my treatment was broken up into 5 phases:
Phase 1: Neo -adjuvant (pre-surgery) chemotherapy /immunotherapy, comprising 6 doses of 4 drugs (“TCHP”). I had a port surgically inserted under the skin in my right arm as these drugs are given intravenously over approximately 4 hours. I would have 3 weeks off between doses.
Phase 2: Surgery: my breast surgeon recommended a lumpectomy and it took place about a month after the 6th dose of TCHP.
Phase 3: Radiotherapy. This started 6 weeks after surgery. I had 15 of radiotherapy doses - every business day for 3 weeks. Phase 4: Phase 4: Immunotherapy and Chemotherapy: 11 doses of a combination called Kadcyla. This extra bit of chemo was needed because the pathology in my lumpectomy showed I still had a few little pieces of the tumour and cancer cells. It was about 14 months from the first dose of chemo to the last (March 2023-May 2024).
Phase 5: hormone therapy (in reality hormone suppression therapy aka endocrine therapy). This commenced during my phase 4 and has continued- I take an Aromatase Inhibitor tablet called Letrozole every day. It is aimed at preventing recurrence of the breast cancer associated with my oestrogen and progesterone positive attributes.
Millymonster I hope you can find some calm during this uncertain time. The not knowing and challenges in waiting took a lot for me to get used to, mainly because I had a role where I wanted to let people know what they might have to change in their expectations of me.
There is a Triple Positive private group which you can ask to join also several good recordings and podcasts about what to expect.
I found this resource useful too, it’s a treatment and decision making guide put out by Breast Cancer Trials in collaboration with BCNA and others.
Wishing you lots of positive energy and do ask questions of your GP or treating oncologist or surgeon.
This network also has so many wise people on it too, so you’ve come to the right place.
Golly Gosh, Millymonster I am so sorry that your diagnosis has stalled so much ... I would have expected you to have been diagnosed & had a date for surgery/treatment by now, so I fully understand you struggling with how things have gone so far. 😪 xx.
Do you have a Breast Care Nurse assigned to you who can go in to bat for you re appointments etc? They can often get the ball rolling faster!
Out of interest - are you in a city, or are you rural/regional/remote? Those of us living away from major cities often have greater 'waits' then our city cousins ... and it just adds to the stress & pressures that we are already under - and financially as well xx
Please ring BCNA Helpline on 1800 500 258 for a confidential chat - they may be able to give you some strategy tips xx
Take care - I hope you get all the info you need asap, to be able to move forward and start healing xx
Check out this link - it shows the 'optimal care' plan for women diagnosed with breast Cancer .... compare it to what you've experienced so far xx. Always have a family member (or a trusted friend) with you at your appointments, who may be able to support you & speak up loudly about your concerns with the delay in your treatment even starting! xx. An extra set of ears can be a real bonus.
https://www.cancer.org.au/cancercareguides/breast-cancer#initial
thanks for the information--regional location - havent been given any information except for appointment date from hospital as yet.
Sometimes, being Regional can be part of the reason but that shouldn't be an excuse at this time of year. You can join the Regional/rural/remote private group, if you'd like? We pass on tips/assistance to each other.
Group: Connecting rural, regional & remote areas | BCNA Online Network
Do you have a 'Biggish' hospital fairly handy (say within a 3hr drive?) One that would have a specialist Breast Cancer Surgeon? Many regional hospitals only have 'general surgeons' and personally, I am not a fan of them (tho I am SURE many of them would do excellent surgeries.)
My own diagnosis (invasive ILC) took from Oct to mid Jan before my first surgeon appt - but having Xmas/New Year in the middle didn't help. But once I saw the surgeon, he did the surgery 2 days later, after having a Sentinel Node check the day before. (The Sentinel Node check indicates which nodes your breast are reliant on - so they only remove them, not all of them.)
If you haven't been assigned a Breast Care Nurse yet, you should be able to find the 'closest one' on the map & give them a call yourself.
https://www.mcgrathfoundation.com.au/
They are available in all states - You can click on the ''face'' closest to you - and it gives the Nurse's name, photo, address & phone number .....
Sometimes we have to be quite proactive (read that as 'aggressive') to get things moving!
Take care & good luck
