Help please..misunderstood my diagnosis for the past 3 years.

Betty14

Help please..misunderstood my diagnosis for the past 3 years.

Betty14

Hey everyone here at "IDC" section..

                                                            My story may sound very strange but I'm going to tell it anyway in the hope that it may help someone else that may be in a similar situation. ....I also need to vent. I was diagnosed in Nov 2011 and as you all know I was in shock...now I'm realising the extent of that shock because I actually misunderstood my diagnosis. I've been frequenting the DCIS section of BCO and have become very educated on the subject. Beesie's posts have been an awesome help to me....so much so that I was able to realise that that was a misconception on my part with my diagnosis.

  I suffer from severe anxiety so much so that I am on disability because I cannot travel very far. My anxiety has made it very difficult to attend meetings. My first and only meeting with my ONCO was via speaker phone at my dr.s office because I couldn't travel to see my onco in person. My panic attacks are so severe that no one wants to be in a car with me for any length of time. I have been in treatment for my condition for many years but there is no cure atm. I needed to tell you this so you realise why I haven't had much contact or discussions with my onco.

  So I was told I had got my bc very early ..my lump was 8mm...it was grade 1..very low grade meaning it was very very slow growing as my onco explained over the speaker phone....my hubby was also present. Now where the confusion started was that they told me that I was 99 % cured because I had clear margins and nil lymph node involvement. I told my onco I didn't want to do Tamoxifen and she thought about it and then agreed that I could get away with it. I was under the impression the I had DCIS at that point...mainly because my BS has explained to me that my bc was in situ. Back then in 2011...I had my mx on 30/11/2011...I thought I had the 'garden variety type bc'. How anyone can make such a huge mistake is beyond me now...all I can think of is that now I'm more educated about DCIS and I now know that DCIS is stage 0 bc and my notes from my BS say mine is stage 1....I had read and re-read Beesie's notes on DCIS and true to form she knows her stuff so I compared notes and realised that I could not have DCIS.

  Today I contacted my dr etc and it was confirmed that I had " invasive apocrine cancer'

and it was not just er positive but also pr positive

now I know how I misunderstood all this....my BS handwriting is not all that clear and I don't have my pathology report. I have asked for a copy of my pathology report so I shall have that soon.

  I have been crying all day and this is the place that I could come to ..so I am here ...I'm feeling so stupid about this mix up .

My Dr assured me that I have no reason to worry but it's just the shock going  DCIS stage 0 to IDC stage 1 in a day . I know it's not a new diagnosis but it feels like it almost.

Thanks for any advice or support you may be able to offer me.

 

 my bc is AIC.....invasive  apocrine breast carcinoma. Some Dr.s think it should be classed as a "sub type" breast cancer but that has not been confirmed yet. In my BCO dx that shows up when I post I didn't have the choice to put in AIC so it comes up as IDC.....and rightly so as it is a type of invasive ductal carcinoma. The average age for this type of bc is 65 but younger women are now being dxd with IAC so it's not unusual that I have it.

Jeanne55

I am sorry that you are going through this.  Since your bs told you that it was in situ, it is easy to see why you thought it was DC IS.  (I wonder why she said it was "in situ"?) This shouldn't have happened.  I am glad you are getting a copy of your pathology report.  

RebzAmy

I saw your post about suffering from anxiety and I completely understand you as I'm the same.  I can completely understand your worries and upset over what's happened.  Although I haven't been through this, there are lots of things to do with my treatment that go round and round in my head (not necessarily because anything was done incorrectly) but just because that's the way my brain works!  Do you think making an appointment to see your consultant about your treatment is in order?

BrooksideVT

Just keep in mind that your docs are treating your actual diagnosis.  They know you have IDC and have agreed that tamoxofen is not necessary. Now that you have moer correct information, you could talk with your onc about maybe starting the pill, if that will make you feel better.  We all go through variious layers of understanding of our diagnosis, and all panic from time to time at our own levels.

Sunshineinky

Hello! Just wanted to say I have the exact same travel anxieties as you!! I'm blindfolded each time I'm in the car for a long trip (anything over an hr). My onco and bs are over an hour away so I do understand how this happens! I'm 5 months out from having to be re-examine and since it'll be winter by then I find myself already stressing! 

You should ask you onc. but it's probably not to late to use tamoxifen. That is if you've changed your mind now that you know more about your diagnosis.  

The first month, I had to take notes.  The stress was so overwhelming that I couldn't remember crap! 

Good luck to you! 

Betty14

Hey Jeanne 55,

                        the reason my BS said my bc was in situ was because it remained in it's original location. My bc was tiny and still in the duct..it had not spread out of the duct due to its size ....this is why it was so confusing because invasive bc is known to break through the duct but I was told I was so extremely lucky mine hadn't broken through even though all the properties or features whatever you call them of lump were invasive . My doc tried to explain this to me over the phone yesterday and I will hopefully be getting a typed report very soon.

thank you so much for replying to my post...I'm a lot calmer today now that I'm accepting my true diagnosis.

Betty14

Dear BrooksideVT,

                                 I totally agree with you ...thank you for your reply

Betty14

Dear  sunshineink,

                             thank you for your support...I am very sorry you also have anxiety and at the same time I am also grateful that you shared that with me as I don't feel so alone. Again, I wish you didn't have the anxiety though. You are very brave in travelling for an hour...I understand about the blindfold as I have had similar thoughts about what aid might help me . I found on e of my biggest triggers was looking out the window in the car and feeling that we were going to hit the car in front of us..I get vertigo at times and I am wondering if my eyes/ears have something to do with my panic. At this point it's a mystery.

 

 

Morwenna

Sorry you have this new shock, but you have to hang onto the fact that you had apparently a very small, early stage cancer of a relatively non-aggressive type (ie grade 1), which had not infiltrated the lymphovascular system, and which was completely removed at the time of surgery, with good clear margins. 

The doctors have told you there is a very low risk of recurrence or metastasis, so much that they were not strongly advising you to undertake further treatment of any kind. It might take a while to get your head around your new understanding, but I think you can safely assume you are going to be fine. 

It is easier said than done, I know, but try to focus on the positives. xxx

Betty14

Morwenna,

                    thanks for your reply..it helped to put things into a more manageable perspective. Now that the shock is wearing off I am starting to come out the other end. I know I will adjust again. The reality is I have bc and until they find a cure there will always be uncertainty ...for all of us.

Now I am working towards acceptance of this new reality......it may take a little time but that's ok.....I'm already in a better place than I was a few days ago.

 

Betty14

RebzAmy,

                    I just re-read your post and realised that I hadn't replied to you. Thanks so much for your support. I have spoken to my Dr and she's explained a couple of things but I'm thinking of asking her to arrange another meeting with the onco in her office . My husband would also attend this meeting.....he's a huge support for me and has a great memory....unlike myself ...I'm a bit of a Dory lol