New diagnosis and Mastectomy

Hi Suzi and welcome.  I was diagnosed with lobular in December 2017 and was initially told that it would be a lumpectomy and radiation.  However, the path report after surgery came back with a tumour twice the expected size with no clear margins and 3 nodes involved (not unusual with lobular, I now realise), so it was back in after Christmas for a mastectomy and axillary dissection.  It also changed the treatment as I had to also have chemo.  I started AC-T in February and finished in July, then had 3 weeks of radiation in August.  I'm also now on Letrozole as the tumour was OR/ER positive.  That will be for at least 5 years and probably 7 or 10, depending on what the studies suggest then. 

I won't lie - chemo is not pleasant.  How you will react is an individual thing.  Some women sail through it with no real issues and can keep working for most of the time, others struggle with it.  I think most of us fall somewhere in between.  I could not have worked for most of it so haven't.  I learnt quickly how to "manage" the chemo cycles with medication and rest - you soon get a good idea of when and how you're going to react.  The biggest thing is not to expect too much of yourself and pare down your activities to what is manageable.  And ask for and accept support from those around you.

Do you work?  If you do and you haven't already done so, check out your Super to see if you are covered for income protection or trauma.  There are usually conditions around it involving periods before it kicks in so important to know what they are (and you will need to get some of it signed off by the onc).

My other advice is to try to take someone you trust to the appointment with you - it's always good to have another pair of ears as you will be amazed at what you don't hear.

As @kmakm has said, the whirl does settle down once you know what your plan is going to be.  This forum has been a lifesaver for me as the women here do get it.

Hi Suzi, welcome to the forum. Sorry you find yourself here, but I hope you find it as warm and supportive as I have. It's good for a vent, a rage, a sob, a multitude of questions and even a laugh.

I didn't have lobular but there are lots of folk here who have and I'm sure they'll be along soon to advise. @Sister and @Eastmum might be able to help.

One thing I know you will be told is that we all react very differently to the same treatments. There are some broadbrush similarities, but after that, it can be remarkable how diverse the reactions can be. Some people are able to work through chemo while others are not. One of the best things you can do is to not cross bridges until you come to them. Hard I know!

If you're comfortable, maybe tell us a little more about yourself. Whereabouts are you? Do you have a good support system around you?

I hope you're doing OK. It's tough at the beginning, but it gets better once your treatment plan is set and you get underway. Hang in there, K xox