Another newbie here - going through the process! and travel plans??

It feels so good to have a forum where you can share experiences with others going through the same process.thank you all for sharing. I had never heard of lobular cancer and always thought cancer was nice rounded tumours. You learn a lot very quickly. Wishing you all well. 
 I’ve had my second operation, still bruised &battered and looking OK. Feeling fortunate live in Sydney and between 2 major hospitals in western Sydney. Looks like I will be at Liverpool as Surgeon has relationships there. 

Hi there @Traynota sounds like you've alredy had a heap of great advice from the gang on here. remember to be kind to yourself its ok to be selfish at the moment. just remember to put yourself first and listen to your body.. keep us posted how you go. big hug Margie. x

Hi @Traynota I was diagnosed with invasive lobular in both breasts - extensive on left, minimal on right - in January but was allowed to wait until these school holidays to have surgery. It’s a really difficult carcinoma to detect and turns out I may have even had it for more than a year! I had a double mastectomy into air expanders on Saturday. One sentinel node was positive on the left side so I had a full axilla clearance on the left. No nodes on the right. 
Still waiting on pathology and will more than likely need chemo and radio but will take each step one at a time. Truthfully the absolute worst part was waiting for the staging scan results. Whatever the outcome, knowing is so much better than not knowing. 
This forum has been incredible for information and support! All the best with everything. 

Well done, @Traynota

Take it easy from now til you travel .... take the pain killers as needed .... 

Enjoy NZ

Where do you live?  Are you in one of our major cities, or will you need to travel for your radiation treatment?  It is Mon-Fri for at least 4 weeks - so it helps to be close to the centre .... !

Well done @Traynota. Glad NZ is still happening. Good on you! K xox

Thanks everyone. I’ve never written on a forum before - usually an active “reader”. I had the follow up surgery on Friday. While waiting to go in couldn’t believe 4 weeks prior hadn’t had the mammogram or ultrasound as yet. Would come later in the day and wham - a massive roller coaster. 

A bit more painful, bruised and battered this time around. Not missing lymph node pain but just been resting last 2 days as nights are shocking. At least it’s out now and another follow up this week. 

Feeling more confident about NZ - looking forward to the break. 

Really apprecite responses xx

@Traynota  - Welcome to the Club (sort of!!)

We've all been thru the mind boggling journey that BC is - and many of us are still only part way thru it ..... it sounds like you are coping pretty well so far. xx  It really is an emotional roller coaster - it is FINE to be weepy, angry, upset .....  all sorts of emotions will 'take over' at any point in time.  This is TOTALLY NORMAL.

You've had your follow up surgery now - so I hope you are recovering well, not in pain & that the margins are clear. 

I am 64 & was diagnosed with invasive lobular BC in early Jan & had my surgery in mid Jan as a Private Patient in Sydney.  

I've just finished my 4 weeks of radiation last Wed.  The Radiation clinic at Port Macquarie was terrific - the nurses and staff were just fantastic.  I did the radiation as a public patient for no cost.

I stayed at the Rotary Lodge there for the radiation treatment & just walked to the clinic every day, 200m away, coming home at weekends (over 100k away.)  It was brilliant.  IPTASS covers petrol expenses & most of the accomodation cost for out of towners.

Try & keep yourself 'busy & active' with your 'usual pursuits' between now & the start of your radiation (and afterwards!) Your new wound will need to heal before that can start - it may be 2-3 months.  I found that continuing with my hobbies at every opportunity helped keep my mind off things (I run a ukulele group & go kayak fishing a lot) and also kept me sane, which is good!   

Some of your family & friends may be confused because you don't necessarily 'look or even feel ill' once the surgery pain has passed!!   I think they thought I'd be bedridden!!   They'll get used to it.

Lean on your family & friends & don't feel that you have to tell EVERYBODY about it, if you don't want to.  If friends want to cook you some meals - LET THEM!  One of my uke buddies did that for me, each weekend we were home during rads - and it was just wonderful not having to go out & buy stuff to make for dinner!

I used a few different creams during Rads, 3 times a day - Epaderm, Renu28 (a lovely gel by ASEA) and Aloe Vera Gel - then Calendula cream & after Rads finished, I peeled a bit - so now using BOZ Ointment.

Sleep can be very hit & miss during this journey .... there is a thread here on it with some good info on trying to 'beat it'!   Usually, keeping active will work the best!  Just make yourself tired!

I'll be seeing an Onc Dr in coming weeks about ongoing hormone treatment - I had a shocking time going thru menopause 20 years ago - so not looking forward to the tablets bringing those symptoms back!  :(  

In the mean time - I am going to Norfolk Island next weekend for 10 days with some ukulele friends (planned late last year) - so I hope you enjoy your trip to NZ!!  (I lived in Auckland for 15 years - and it holds a special place in my heart.)

You'll make a bunch of 'new friends' here on the forum - ask away ANY question - and it will be answered by those who have gone thru it!  

One step at a time - onwards & upwards - all the best xxxx

PS I went to Cairns for a month 4 weeks after radiotherapy and one week after 8 dental implants. It was fine and great to get away from the cold -only issue I had was the need to be careful about UV .

Hi @Traynota I was diagnosed with lobular cancer 20/2/17 .I had a lumpectomy and sentinel biopsy March 2017.The lumpectomy did not have clear margins so back for a re excision 10 days later when clear margins determined.The sentinel node biopsy removed 2 nodes one of which had microstasis.I then had radiotherapy 16 rounds to mop up random and have been on hormone therapy Letrozole 8 months which is going ok.The lumpectomy/ sentinel node biopsy basically enables detailed pathology of your cancer .

In the initial stages my strongest advice is to take someone with you for medical appointments to provide a second pair of ears as your listening may be clouded for a bit with shock.I’d also highly recommend keeping a diary of treatment details - the BCNA My Journey Kit includes one which is quite useful. I also found the BCNA kit suggested questions I might ask medical staff as I tended to be a bit numb for a while and things can also be quite pacy.

I found medical staff and even non medical staff very caring and supportive during treatment so felt somewhat cocooned from fear once the ball started rolling.The hardest part for me was when when active treatment ended after radiotherapy when I felt alone and lost as I was expected to return to my former life when I was no longer my former self. That’s when this blog and local support groups became invaluable as I could share and learn from others and most importantly I learnt life does go on.

Small tip I did not know - you can blend treatment between the public and private systems which is especially relevant for radiotherapy which can have costly excess in the private system -mine was $2000 not covered by health insurance.

Radiotherapy is intense as you have daily zaps with just weekends off so can be tiring. The actual treatment is quite quick though just a lot of travelling back and forward.Creaming carefully during radiotherapy is critical - many here used Moo Goo with great success. I used Calendula cream ( which I liked )at my centre and Dermaveen at home.I am a very fair red head and my skin came thru fine but there are side effects that can linger months after radiotherapy ends.I do not recommend Sorbolene I found it a poor emollient.

Hormone Therapy so far has been ok but imo it is critical to stay active. I walk daily for an hour and do a gentle stretch and balance class twice weekly.It is not always easy to do so but find I can move thru joint pain and really feel it if I don’t.

I am happy to answer any questions if I can and talk more about what I written above.

Just remember you are not alone and there are many who have gotten thru this.Stay communicating on the blog and we will all help you thru this. XO

I was diagnosed 6 years ago with ilc and here l am.lots of ups and downs good days bad days better days but lm glad l went through it.l met amazing women here and run a support group for ladies, some come and go but some have become my best friends.lve been to bcna conferences lunches, spoke to groups of women and l found a new me.l hope that your trip in this crazy disease is kind.regards adean