Trying to make sense of it all.....

With radiotherapy I can't comment on time frames. 
I just know zi was told 6 weeks...but this can often be delsyed with women if ibfection etc.
So call radiology rooms referred to and tell them time frames since surery and ask when you will get an appointment and keep ringing them everyday until you do.

@primek.    The tag above didn’t work and I am not sure how to edit it. - Janine. 

Kath, @primekYou said the crucial time was 6 weeks. Can you explain that a bit more? Just nudging 6 weeks now. The referral has gone in for radiology but once again, I haven’t heard from them. 

Hi Janine60

I too dx with stage 1/grade 1 (10mm IDC), 21st Dec, 17 had surgery Jan 10th received results yesterday 22nd Jan revealing I need a re-excision...(DCIS_unclear margins) booked in for tomorrow 24th Jan, 18.  My daughter had stage 3 @ 27 years old 2010 so I have seen the sorry side of a more aggressive dx  she is very well now thank goodness but went through awful time.  I have thought I should be grateful not whinging either yet Cancer is a slippery sucker who likes to deceive us and that's what scares me.

Truth of the matter is I notice that dx is one thing and then pathology seems to reveal a bit more so one can never assume all will be well yet the doctors seem sure of their plan (for me).  My concern is am I going ahead with this too quickly without thinking it through?  I have read in some forums that people consider the Mx instead of the re-excision and on-going MMGs on more regular basis forever.

As the genetic aspect is not clear for us as a family (my 2nd daughter 32 yrs old to date cancer free).  My First  daughter (now 35 yrs old who had stage 3) due to genetic testing done which was inconclusive then will have her case re-opened up again as it was over 7 years ago now to see if she had the full gamut of testing done due to our Jewish ancestry (high risk of BC) also.
  
My two daughters and I are also Type 1 Diabetics which is not a great combination due to high risk of infections etc. etc. First daughter had bi-lateral MX, Chemo, RT, and Herceptin.  Reconstruction was interrupted with emergency surgery for infections on all/most wounds, tissue expanders removed and waited 6 mths for full recovery to re-start whole process again.  Now completed and going well.

Obviously we need to clarify all of this and check for other daughter's possible risks.  I hope this makes sense of why I'm anxious atm.  My partner (bless him), although largely supportive isn't happy to discuss as I think it's too confronting for him, he gets annoyed at me for not accepting what the doctor has prescribed for me.

Am I being ridiculous?  I guess depending what the outcome of pathology is from tomorrow's surgery - perhaps then I should consider next steps.  Radiology is also being done in one month's time plus hormone tabs. I am 61 yrs old.

Any feedback anyone?

Janine60 said:

What I am feeling like at the moment, as I wait is that sometimes I feel like - I am not wording this so well, sometimes I feel like a bit of a fraud - being Grade1 and probably Stage 1 as well - maybe stage 2 but only on the cusp of it.I feel that with treatment things will be ok. I will breeze through it and that it will be like any other condition that I might be diagnosed with. Conversely, I have a bit of a wobbly day and think, no, breast cancer is a serious thing and I need to be mindful that life will change as I know it. I swing between both ideas and struggle with getting a real sense of how it will affect my life and that of my family's. With other people who have a similar diagnosis, have you felt similar??

I think half of the issue is that I have initiated all resourses myself  - ordering the breast care kit, getting in contact with the breast care nurses. I knew I would need support so mobilised that myself. Even though I had a lumpectomy just prior to Christmas, I have had not had any contact with any professionals who can tell me what is going to happen.  I have really no one to talk to. My mum passed away from breast cancer nearly four years ago. She had Grade 3, stage 4 that had already metastised to the liver on her diagnosis. She got 15 months. The breast care nurses have been lukewarm. They have given some information but not everything that I need.

What I am really looking for is some validation around what I am feeling and how other people managed it in the early days. Given my episode of breast cancer is only Grade 1, how much impact did the diagnosis and treatment have on peoples lives?

Sorry for the whinge - I really don't know how to feel.

Thanks. Janine.

Hi Janine. Glad you got the appointment. My results weren't back when I saw the Doctor and had to go back a week later, but glad the results were all clear. The waiting is hard, but get to know your Surgeon as I have seen mine 4 times since 5th December, so lucky I have her as she cares how I am feeling s well as being a Surgeon, which makes a big difference in my Journey. It gives you a lot of confidence with a good Surgeon. I am up to Rockhampton today for my Radium Planning so hopefully all wounds have healed up so I can start soon. Some of  the Ladies on this site have hard times to get through, but whatever type or stage your Cancer is, it is frightening words to hear YOU HAVE CANCER. I will be with you on this journey that we both are taking. x

So glad you have the appointment. Having a plan really helps. Chemo or radio should start within 6 weeks. They missed my referral and just squeezed me in the time frame. I saw the oncologist 10 days after surgery in Adelaide. But a different oncologist (same team) would do it in Broken Hill. If I hadn't rung I would have missed the crucial time period...and mine was a grade 3 Es+ Her2+. 

However...don't feel a fraud. Breast cancer is different fir everyone  and you know as we all do that women die having slow growing bc too. Your personal experience of losing your Mum only heightens this awareness. It's not a cold. It's a genuine life threatening change in your cells.

My husband did the whole ostrich thing. Men like to pretend its just a little blip. They don't get the fear that goes with it (unless if course they've experienced something similar ) My husband really didn't believe it was bc until pathology laid out. (He quietly researched my pathology and quietly freaked out). However I could never discuss my real fear of dying and leaving them with anyone except other bc sisters. (My sister died of bc and 3 Aunts died of ovarian/breast cancer) Always the brave face at home. That's us.

This site is a great place to just blog about that. Saying...I'm scared, I'm terrified, I don't sleep. ..it's all okay.  Because we get it. Whether it's a near miss, stage 0 or metastatic. ..the emotions wash over us all. 

Keep ringing up to ensure you aren't missed. It's your health / your life. Kath x

Hi @Janine60
I too am/was grade 1 stage 1 - my only difference from you was that I had synchronous bilateral tumours (one on each side). I totally get how you feel as we are so very lucky to have been detected early and less aggressive pathology. But the waiting game is awful for everyone and it certainly brought me undone at times. Irrespective of your pathology there is still the shock of diagnosis, the pain of surgery, waiting to see if nodes and margins are clear post surgery, if drugs will/won’t work, if chemo is needed, radiation burns and fatigue, tamoxifen ... etc. The reality is bc is shit at best - even when the pathology is relatively good. Totally understandable you will have wabbles.
I’m glad you now have a follow up appointment- that was a long wait. I saw my surgeon a week after both my surgeries. Best of luck for confirmation of a positive outcome for you! xx

I too had a lumpectomy in mid Nov followed by a re-excision in early December. I too had a stage 1 grade 1/2 cancer. In both cases my post -op appointment with the surgeon to discuss results was made prior to surgery and happened 4-5 days after surgery. I met my oncologist between surgeries and had my radio oncologists appointment made prior to the second surgery for the first week of Jan. I had my planning CT scan last week and start radiotherapy tomorrow. Fingers crossed all goes to plan.

I guess I am lucky that the ‘sausage machine’ of the system seemed to grind smoothly for me.
I too feel slightly fraudulent, although am also swinging from the emotional highs of “leave me alone, I’m fine”  to the low s off “don’t you know i have a life threatening illness?” - funny old roller coaster!

Good on you for phoning and being assertive- it really shouldn’t take 4 weeks to get the results fro:surgery.

I agree with @kezmusc - we find it is soooooo hard to get past medical receptionists at times - and that is not only in relation to BC.  My husband and I call them ''the little gestapos".  Trying to get an appointment - what the ???  As one unobtainable doctor was on emergency duty the day we had an emergency we got to see him - and my husband was quick enough to ask if he would be our doctor.  He was a bit stunned that we could not get an appointment with him !  Soooo, we have a new doctor !!!!  Since then we have phoned and got an appointment that day or the next - saves waiting six weeks, eh ?