Is there a 'waiting on results' section? If not, this is re 'calcifications' on mammo high risk.

WA2018

Hi everyone,

I feel like I'm 'jumping the gun' here in 'newly diagnosed'. Could have sworn I saw a 'waiting on results' area but maybe I'm confusing my searches.

I am considered high-risk and have been attending the highrisk clinic for approx. 15 years. 

This year, they called me back into the mammo room and asked to take more pictures and the technician showed me the calcifications they were concerned about. Approx 5 very small but bright spots fairly close together.

It was last Friday so I was told they would send the pics on to 2 specialists and I would get a call if anything further is needed. I feel positive that - suspicious or not - I'll be called back due to my high risk. I can't even sneeze without getting referred to someone so I don't think they'll feel confident saying 'wait and see' with me.

So, of course now and I am googling DCIS and similar.

There are a few 'prongs' to this question so not sure where the post fits.

I am a candidate for prophylactic surgery. I always had this theory that I would continue high-surveillance, and not entertain the thought of surgery unless 'something came up'. And then, strangely enough, about 6 months ago I decided to make the appointments purely to be properly informed about surgery - I was so sick of urban myth and staff-room conversations where people with no idea think they can make stupid ill-informed comments. Anyway, I had the appointments and decided not to go any further with queries.

Hmm, so here we are. Way too early I know but I am wondering about how much gets excised for removing DCIS, lumpectomies, etc. Too vague / too big a question. Maybe I'm looking for ppl who've had prophylactic surgery without ever being diagnosed - anyone 'fit-that-bill' here? 

Gosh, not sure what I'm asking but this is where I'm at. Hopefully tomorrow (Monday) I'll get a call either way.

thanks.

Sister

@onemargie re: proph surgery? @kmakm?

I'm still at the start of things @WA2018 You haven't said whether you have treatment in the past so I'm not sure if you're talking about the other breast or this is the initial result from screening.  I had surgery for right side in December which quickly turned from a wide excision to a mastectomy with axillary dissection.  I never had a symptom - at least that I was aware of.  A's I come up to my first 12 month check, I'm anxious about what will be found and I'm thinking about the possibility of prophylactic removal of the left breast - hell, at this stage reconstruction is an unkown for me!

Good luck with your results and come back with any questions.

WA2018

Sister said:

@onemargie re: proph surgery? @kmakm?

I'm still at the start of things @WA2018 You haven't said whether you have treatment in the past so I'm not sure if you're talking about the other breast or this is the initial result from screening.  I had surgery for right side in December which quickly turned from a wide excision to a mastectomy with axillary dissection.  I never had a symptom - at least that I was aware of.  A's I come up to my first 12 month check, I'm anxious about what will be found and I'm thinking about the possibility of prophylactic removal of the left breast - hell, at this stage reconstruction is an unkown for me!

Good luck with your results and come back with any questions.

Thanks so much for your reply. I've had no bc , just surveillance every year.  So I am starting to think about options but really am doing that panic mode thing where you don't really know what the facts are & decide to stress out anyway. Hopefully they'll ring today and I'll have a factual understanding of what's happening. 

Thanks for reaching out.

kmakm

Waiting for test results are the absolute pits. You really have to try to stay in the moment as best you can and not cross any bridges until you come to them.

How much tissue is removed very much depends on the size of your DCIS/tumour. Women with small breasts sometimes go straight to mastectomy as a lumpectomy is too disfiguring.

I had a wide local excision, a re-excision for margins, and after chemo, a double mastectomy and reconstruction. Click on my name to read my bio for details. Strictly speaking the removal of my left breast was prophlactic. But as my risk of another breast cancer was 26% - 44% I don't regard it as anything other than necessary.

You need to be really clear in your head about the decision, on your emotions, the psychological impact and the medical statistics. Talk to your breast surgeon, counsellors, yourself, your partner, friends etc. Really stress test the decision.

Let us know how you get on.

lrb_03

Hi and welcome @WA2018. It's the place none of us wants to find ourselves, but you will find lots of support here. You are in the right place to ask questions, though of course it won't be medica advice that yu'll get.
Another website that may be helpful to you is an Australian site set up by a young woman after she went through having to make a similar decision , also very high risk & struggled to find Australian information/ suppory. It's  https://pinkhope.org.au 
I'm not high risk, so won't comment on the information there, except to say she has had support from medical professionals who do know.
Hope it all turns out ok, but stay in touch

WA2018

Thanks. Out of interest, how long would people wait b4 banging down the drs door?  I left the public hospital by noon last friday & didn't see a Dr at all. I was told my mammogram s we're being shown to specialists and someone would call me ''either way'. 

iserbrown

Sorry to hear that however the protocol of how long is variable.
With your referral did you go through a GP?  Maybe an appointment with the GP will help with results. 
Hopefully you're in the category of no news is good news however if it was me I'd be following up with a phone call just to ask when you may know the results or go to your GP to find out

Take care 

WA2018

iserbrown said:

Sorry to hear that however the protocol of how long is variable.
With your referral did you go through a GP?  Maybe an appointment with the GP will help with results. 
Hopefully you're in the category of no news is good news however if it was me I'd be following up with a phone call just to ask when you may know the results or go to your GP to find out

Take care 

not via gp. i go directly to he high risk clinic - letters come directly from them.

wren71

Waiting is the absolute worst. If you want to call then, do. What’s the worst that can happen, they say they need another day or two? 
I waited until 4pm to call my surgeon on the day he said he’d call, left a message with his secretary and he called back. Said he hadn’t forgotten me but wasn’t upset at all that I’d jumped the gun and called first. 

WA2018

Hmm. It didn't go so well. First mistake was I asked for bc nurse & they said oh results aren't out thing u have to go back to receptione. Then admin1 said oh lll put u thru to the lady next to me she's better with the high risk clinic stuff. Then was on hold forever. Then I think I got admin1 back (I think)  sorry for wait did I take your name?  Another wait. Sorry for wait were really busy hrre. Another wait. Sorry for wait shess (admin2 I think) made an appointment for you on December 15. Me- so my extra pics of calcifications ladt friday were fine and you are giving me a '''normal" appt time - is that what you are saying? Oh you had extra pics?  Anyway I could feel my anxiety was rising so it wasn't worth continuing. They said wait a week but I feel like they were just trying to get me off the phone. 
I'll wait a week I think and see what happens. I must admit that every other year the specialist has rung me to say everything is fine but I cant recalle how long that takes and in the past I haven't felt nervous because it has become so routine.
I'm accustomed to them shopping me in and shipping me out - I've been lucky enough not to have call-back s to date.

Sister

It doesn't help much for what you are going through and you may not feel up to it but that sort of rubbish needs to be reported with some "constructive feedback".

I wouldn't have thought that the time frame was an unreasonable one.  What sort of relationship do you have with your GP?  Is he/she someone that you could ring and ask for assistance in finding out what is going on?

WA2018

Not really, I rarely go to the dr. Although I'm sure if I asked they would follow through. Just seems silly to pay so much (they don't bulk bill) for someone to ring the same place I do and ask for action. I guess I could do that. When I'm anxious the 'other' me comes out and I don't really ask for action 'properly' (i.e. in a way that actually gets any action!)

Sister

I know the feeling well - and anxiety seems to come to the fore easily these days.

WA2018

My theory is mine developed (although I'd say I was quite prone to it) as a coping strategy. It's easier to worry/get anxious about many simple little things all day every day instead of worrying about bigger things like everyone older than me in my family having had some form of cancer (4 ppl) inc 2 sisters with bc. I just got a handle on that and was fairly 'even' and calm and now this. grrrrr.