Newly diagnosed and waiting for appt. breast becoming more tender as I wait :-(

Hi Carolyn, I know exactly what you’re going through, and we are all on this journey with you. Let yourself deal with the shock and  cry or swear when you need to! I find it helpful to let it out, and often feel a bit better emotionally afterwards. Reach out on here, phone the number, reach out to McGrath Foundation website, where you can find a phone number for your local breast care nurse, reach out to any other numbers or resources you have been given, trusted friends/family. All of these angels were extremely helpful for me. Rest assured you are in good hands, and try to distract yourself other times while you wait. Also, I now know any niggles and perceived pain are most likely from biopsy inflammation and/or the brain’s imaginings. Lastly, I am now a few days post- lump removal and lymph biopsy. There is some soreness and stiffness at times, to be expected, but only need Panadol now. Gently does it.

Be kind to yourself and we are all in this together *big hugs*

HiCarolyn12​ I am so sorry to read about your recent diagnosis: not the New Year news you would have expected.  I am sending big virtual hugs.

Some excellent suggestions for you fromlfillmore​ (and it’s also good to hear your surgery and recovery has gone well so far lfillmore​ it’s a milestone on the treatment plan worth celebrating). 

Carolyn12​ there are many variables in how our breast cancer is treated but in my case I also had radiation therapy and - after completing some more chemotherapy I was started on hormone blockers (about 2 years ago). The 15 doses of radiation was manageable, in my experience the build up effect on my breast by the last dose was no more painful than sunburn with some itchiness. There are side effects with any treatment (and many people experience these differently), having said that the nursing care and oncology support checked for any side effects and tried different things to minimise them, sometimes adjusting treatment, to make it manageable. 

I decided I would take the recommended treatments, and even now I don’t love being on hormone blockers ( !) but I really want to give myself, and my lovely family, the best chance of not having to go through a bc recurrence. 

I feel for you finding it surreal. I had a feeling of being fully let down by the body I had tried hard to look after and with no family history I was surprised. In the weeks before my treatment began (I had to have chemotherapy before surgery) I was very frustrated because I had to start suspending plans and explain to people that I simply didn’t yet know when I could resume. But in amongst it I feel I was lucky to have been able to do a few “holiday” type things (being January), like going to the tennis (the Australian Open), some exhibitions and a concert.

I felt more purposeful when my surgeon had the pathology information and explained what my course of treatment would be. That’s just my experience and what is so good about this forum is there are many versions and experiences and there’s no judgement. Occasionally you’ll read someone’s post and think “wow they nailed it, that’s just how I experienced it/or am feeling”

Will be thinking of you andlfillmore​ as you approach your similar courses of treatment and sending positive vibes your way :-) 

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. 

https://www.breastcancertrials.org.au/breast-cancer-resources/neoadjuvant-patient-decision-aid/?srsltid=AfmBOop-At08xMVuBWf-8e3e4pMFKgTLdizAFQKpYtWO8SjhJJ6ANKMt

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