Just need to talk to someone

CrazyDogLady67​ 

Hi Susan

It certainly is a crazy ride hearing the words 'breast cancer'. I had a double mastectomy in November 2024 with immediate implant recon.  From my understanding, the decision for a lumpectomy -v- mastectomy is in the size of the tumour.  

When you have your follow-up appointment for the MRI results, you will most likely be given a lot of info then. If possible, take someone with you to the appointment because there is usually so much info to try to remember.  

I'm happy to answer any questions you have!

All the best for your journey

SO sorry to see you joining us here CrazyDogLady67​    A BC diagnosis really mucks with your brain as much as your body - and the stress of all the early appointments and discussions on surgery & treatment is mind boggling xx

You could Consider joining the Flat Chat (remaining flat following surgery) or Choosing Breast Reconstruction groups - they are private & you can ask specific questions of the group & even see before & after photos ...... 
Groups | BCNA Online Network

You can give our Helpline a ring if you'd like a confidential 'one on one' chat to 'help talk you thru' any issues you may encounter during your treatment  .... 1800 500 258

Also Feel free to jump onto this thread for a heap of info about the forum & some tips on what to take to hospital with you - and some 'tick sheets' on your mental and physical assessments between checkups:
A big welcome to all New Online Network Members ..... | BCNA Online Network

Take care & all the best xx

I guess that on an intellectual level I understand that there is a reason to cut out a cancer but emotionally the conversation “hello, you’ve got cancer and I’m going to chop off your breast…”. It feels like the dark ages of medicine when the only option is to reach for a knife and hack away 😳 we are being forced to mutilate our bodies and I don’t know how to come to terms with that 😢

I really hope that a day comes in the future when women can be told they have cancer and there are choices other than mastectomy. 

i know it has to be done and i will get brave like so many others before me but for me it is a struggle right now

Hi Susan

I found this part of the process the most stressful and it was at times overwhelming. 

I was given details of the the McGrath Nurses in my area when I received my initial diagnosis from Breast Screen NT and I contacted them myself. However, one of the nurses also attended my first meeting with my oncologist, so they would have contacted me regardless. They seem to be firmly embedded in the system in Darwin.

The McGrath Nurses have been wonderful, and I would try and get in contact with them as soon as you can. Your GP should be able to give you their details. They answered all my questions, helped organise appointments and continue to be involved 2 years down the track. 

Once I got my full diagnosis and treatment plan I felt a lot better and more in control.

All the best, Katie 

CrazyDogLady67​ we sound like around the same palce Im 49 and was dianosised on the 11th Feb ER/PR + and  HER2 1+ grade 2 ILC over 8cm so also waiting on Masectomy. I also wont know whats next untill after surgery and just left guessing what might be until pathology is back. I like to research so spend the long waiting days with learning as much as I can and preparing best I can.

Hello Susan, I hope you're feeling ok! I was very lost when I first got the information. Definitely information overload for me but trust that you're in good care and if you're ever lost just ask.

I've just done a double masectomy and your daughter is very funny with that tee! Haha. But if you're getting it in that print I would suggest a button down version. You will have one or two drain bags after surgery, I found it helpful to have pockets. Either in the shirt or pants with huge pockets. The breast care nurse will take care of you too, I don't think you have to reach out, they will be at the hospital. 

All the best for your treatment! 

Hi Mez, thank you for responding. I appreciate you hearing me. 

About the breast care nurse, I have not been referred yet, I wasn’t sure if you just take a stab in the dark and pick one from the list?  Am I supposed to contact one directly?  

Also after mastectomy, there seems to be a lot of stuff to get in terms of underwear and easy to put on clothes?  How do you know what bits you need to get?

I apologise for the random questions but I’m wanting to be prepared…. 

my daughter says just get a tshirt 

But I’m not sure if that is helpful though it made me laugh 

Your feelings of confusion and panic (and fear) are entirely normal. Unfortunately, they make it even more difficult to get your head around what is happening and what options you have. Do you have a sensible partner, good friend or relative to accompany you on consultations? It's often easier for a calm and good companion to understand what is being discussed and to discuss this with you, probably more than once, afterwards because they are in a much calmer state to comprehend what is being discussed and to ask relevant questions for you. The more you get to know what is happening, the more you can feel a bit in control and not entirely lost. As Mez says, a breast care nurse may be a huge help at this time, ask your GP or surgeon. 

It will take you some time to feel this, but a diagnosis means the start of doing something about it. Without it, the cancer just grows. So you are starting on a recovery. A mastectomy is daunting for anyone, but usually surprisingly pain free, particularly if there are no lymph nodes involved. You may be recommended to have herceptin after your surgery - either an infusion or tablets. Painfree either way. Your treatment will be focussed on reducing, as far as possible, the chance of any recurrence. You will want to think about reconstruction - some do, some don't, it's an entirely personal choice but to help you make it, your surgeon needs to advise on options, when each option is best done and of course costs and, in some states, how long you may have to wait for such surgery. 

If you are working, you will need some leave for surgery (it can vary a lot, I only took a week off, I'm a quick healer) but you may want more time. It's entirely up to you who you tell - some want to keep the matter confidential (so maybe only your HR people) others are happy to let colleagues know what is happening. The same with family really - most of all, you don't want upset and anxious people fussing about you and making demands at this time.  The ones who are calm and supportive are the ones you can best rely on.

There will be a time when all of this will be a faded recollection. Hard to imagine now, but many have been through this, just as confused and unsure as you, and not only survived but lived well. Keep looking forward. Best wishes. 

Thankyou for posting your discussion CrazyDogLady67​  – while we wait for other people to share their experience and offer their insights. We wanted to assure you that it makes a lot of sense that you’re feeling confused, panicked, and overwhelmed right now.

Many people tell us that in the early days after a breast cancer diagnosis it can feel like everything is happening at once, with too much information and not enough time to take it in. There is nothing “slow” about you, this is a very normal response to a life‑changing situation and it’s okay that things don’t feel clear yet.

You’re not expected to understand everything all at once. For most people, clarity comes gradually and plans start to form. If you’ve been assigned a breast care nurse at the hospital, they can be a really important person to talk things through with helping explain what’s happening, answering questions, and being a steady point of support. If you haven’t yet been linked in with a breast care nurse, you may find the Find a McGrath Cancer Care Nurse Near You helpful in locating a nurse near you who can provide free, ongoing support.

We (BCNA) also has resources designed to support people who are newly diagnosed. Many people find it reassuring to work through information at their own pace:

• My Journey – a trusted, step‑by‑step resource that provides clear information tailored to where you’re at, from diagnosis onwards
  • Getting through the first few weeks  (article)
  • You may like to watch BCNA’s Webcast: Just diagnosed - what’s next?
• BCNA's Helpline (1800 500 258) – to talk things through with someone who understands, when things feel like too much and can offer further resources to support you

Support is available and know that you are not alone.