Another Newbie with some questions

arnlybub

Hi there, I was diagnosed a month ago with Invasive Ductal Carcinoma in my right breast following my first Breast Screen appointment.  My lump is Grade 2, 19mm and positioned at 10 o'clock and 5cm from the nipple and I'm OR+, PR+ and HER2-.  I'm booked in for a wide local incision next month followed by chemo (possibly) and radiation. I've spent the past month researching and have read all of this website and most of the forum posts (I've stayed away from Dr Google and stuck with reputable websites).  I also have the My Journey kit.

I have a few questions if anyone can me help out:

1. My path report states that I have 'normal appearing IN's in axilla' - what does that mean?

2. I did ask my surgeon if I could have the whole breast off, but he said a lumpectomy was enough to start with and if needed they would go back and take some more if they didn't get clear margins.  Is it normal to be refused a partial masectomy?  I really would prefer to have only one surgery and have the whole thing off and be done with it.

3. My surgeon told me that I would probably have to have chemo, but a friend of a friend is just ahead of me on this trip with the same diagnosis and she doesn't have to have chemo .... why would it not be suggested for her?   To be honest I'm more frightened of chemo then the cancer or surgery and would really rather not have it for a number of reasons including time off work.

4. When do the Breast Care Nurses come into the picture?  I left a message for one on the day of my diagnosis and haven't heard back and emailed the other one 2 weeks ago and haven't had a response from her either.  Am I jumping the gun and the don't make contact until surgery??

Thanks so much for any advice you can give me.

iserbrown

Hi!  Welcome and you are right Dr Google at this early stage in particular will only do your head in, so smart to keep away.  Here's a link from the BCNA website to help you understand the type of breast cancer you have been diagnosed with

https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/

As to comparing yourself with your friend - we all have the diagnosis of Breast Cancer but from thereon it is very individual and it will depend on pathology reports, mainly after surgery as to the next course of treatment.

As to Breast care nurse, a lot depends on where you are located, if they are attached to the Hospital and or surgeon 

Hope that helps

Sister

Breast care nurses seem to be a bit of a hit or miss affair - there was a discussion about this recently - you should be able to do a search on it. 
As @iserbrown said - treatment will be recommended according to your individual diagnosis. If chemo is recommended then talk to your once about why.  It's not fun but it is doable.
BTW Welcome!

kmakm

Welcome @arnlybub. Sorry that you're here but I hope you'll find it as helpful as I have.

As I understand it, a tumour up to 2cm is considered 'small' (mine was 16mm) and this can dictate your possible courses of treatment. A lumpectomy/wide local incision is considered more appropriate in this case. My understanding is that surgeons will only perfom surgeries they deem suitable. First do no harm! A good surgeon is mindful that early in diagnosis their patients are often in shock and very, very scared.

I don't know what the IN acronym is; perhaps ask your GP or surgeon? Is it hand written? If so it might be a poorly written L and be referring to lymph nodes.

Diagnoses and then courses of treatment often change once the tumour is removed and the pathology is done. Mine was bigger and less aggressive than was shown in the mammograms, ultrasounds and biopsy. Ask your surgeon why they think you should have chemo? Do you know what your ki67 number is? If it's over 20 that might be why chemo has been mentioned.

Breastcare nurses, access and frequency of contact, seem to be pot luck. Keep persisting with trying to make contact. You might like to call the BCNA helpline on 1800 500 258. The ladies there are very experienced and helpful. I believe some of them are nurses.

Try not to cross the bridges until you come to them... easy to say but harder to do I know! Hang in there. K xox

tigerbeth

@arnlybub What @kmakm said !! Sorry you find yourself here ,having said that the info, courage & kindness you find here is amazing ! 
My story is much the same as yours & after the op things become much clearer as to the next phase of treatment .
Your individual risk factors contribute to the eventual decision of chemo I believe .
Best of luck , you can do this xxx

Riki_BCNA

arnlybub sending you a private message

Sister

Re: chemo @arnlybub Your oncologist will be able to give you the stats and also outline the chemo regime he/she is suggesting.  Ask whatever questions you need to but don't be frightened of it if it's going to save your life.

Kiwi Angel

@arnlybub. I am currently going through 4 rounds of TC chemo with 1 more to go. I won’t say it’s fun but is not as bad as I expected and I have managed to work quite well through it with really 3 or 4 days off work round each cycle. I also had a lumpectomy, partial mastectomy and then fill mastectomy as apparently they like to preserve breast tissue now. If I had been able to get away with a lumpectomy I would of been so happy. I agree with @kmakm and think that IN is most likely LN and talking about your lymph nodes. 

All this can be so scary and overwhelming but we are all here for u xoxo

kezmusc

Hi @arnlybub,

Welcome to the forum.  Everyone here is awesome.

 I too had 19mm breast tumour .  Stage two grade two.  It was quite deep and a pain in the butt to find.  I had chosen the lumpectomy if possible so we chased it for a while as you couldn't feel it.  Unfortunately I also had a 25mm one in my L/node as well.  
So I had the lumpectomy and re excision the next week for clearer margins.  The re excision is really no big deal.  I was in at 8am and home by 2pm.  

Surgeons are not keen these days on doing mastectomies if they can avoid it.  "Over treatment"  is the buzz word.  If you've got big enough boobs versus the size of the tumour they will recommend that you do the lumpectomy. 

So I had 14d versus 19mm tumour and it looks pretty ok if I do say so myself.

As there ended up being 5 nodes involved, chemo was a must do.  I think chemo is the one word that scares the heck out of everyone at the start.   Some of us get through it without too many issues though.  
You won't know till after the surgery and the final pathology.

As far as the breast care nurse goes. She should make contact before your pre admission apt and be there for that.  But as we've been recently discussing it does seem to depend on the hospital and the nurse.  Just keep leaving messages if you need to talk to her sooner.

Try not to stress over things that mightn't happen.  Just focus on the next step.  It's a hazy fog at the start.

There's so much support here,  keep talking, keep asking questions.

arnlybub

Thanks so much everyone for the warm welcome and your supportive responses.  @kmakm and @Kiwi Angel what I thought was IN's was hand written and on closer inspection it appears to be LN's - thanks, you made me look again!

I forgot to mention that I called the BCNA helpline and spoke with a nurse on the day I was diagnosed and she was very helpful and was able to answer all my questions at that time.  To be honest, I've had most of my questions answered by lurking on this forum since diagnosis, so I haven't anything too pressing to ask - I was just curious as when they came into the picture.  I'm in regional NSW and there are 2 Breast Care nurses attached to the public hospital, my pre admission appointment is next week so I will hope to see someone then.   

@kezmusc I'm a 16DD so there's plenty of space for a 'divot' in it    I'm thinking that as I'm 50 that may be why the surgeon is talking chemo for me, whereas the friend of a friend is in her 70's.  Also my Ki67 is 50-60% so that's probably a predictor too.

I'm hoping to get through this thing with as much strength and humor as possible, Although I'm single and without children, I have great support from my siblings and extended family and most of them are following my lead and treating this whole episode with as much irreverence and laughter as possible and I've found that has helped us all with the initial shock.

Thanks again everyone for your comments xo

Sister

Both of those things - Ki67 and age - are likely to influence the recommendation for chemo @arnlybub. 

The diagnosis is such a shock, isn't it.  You'll find lots of support and definitely some laughter as well, here.  Glad to hear that you've got a great network, too.

SoldierCrab

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

The what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further information
or support please call 1800 500 258.  The Helpline is open Monday,
Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
till 9 pm EST.

 

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

kezmusc

What is a Ki67?  No one ever mentioned that or I have forgotten. Which could be quite possibel.  I'll go look at the path again.

Sister

It's indicator of aggressiveness of the tumour - the lower the number, the less aggressive.

Kiwi Angel

@kezmusc I think they think below 10 is considered low and mine was about 13 or 15 so I was in that grey area. 

kmakm

@kezmusc Below ten is low, 10 - 20 is moderate, above 20 is high. My breast care surgeon said it could be described as a poor man's oncotype test. Useful if you're in a grey area when it comes to doing chemo or not. Mine was 18 which my surgeon said put me in a grey area.