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one year later and it starts all over again

one year later and it starts all over again

Posted by Cindorella on Mar 15, 2019 1:10 pm

Hi Everyone.  I'm new to this site and this is my first post but I really need some help, advice and positive thoughts.

In October 2017 I went for my first mammogram ever at the age of 48.  The results were inconclusive especially since they had no previous images to compare to.  So I went for a second mammogram at the IWK in Halifax, NS.  It came back abnormal.  Next step - core biopsy.  Results - microcalcifications but still classed as abnormal overall.  Next step - excisional biopsy which was performed and a slice of breast tissue about the size of a slice of bread was removed from near my chest wall on my left breast.  Results - I was upgraded to DCIS.  Luckily the excisional biopsy took out all the DCIS with a clear margin of 6mm all around it.  The oncologist would have liked 10mm all around the DCIS but he said to leave well enough alone.  So I had no radiation treatment.

Now it is a year later and I had my mammogram on 6 March (first one since the surgery & diagnosis a year ago).  I received a letter in the mail today stating “following the abnormal diagnostic of a breast screening exam” you are scheduled to have a core biopsy on 26 March.

Of course being down this road a year ago and knowing how it turned out, I am freaking out a little bit.  Has anyone gone through this before – I mean – the exact way my appointments have?  A year later having to have yet another core biopsy.  I know that there are those of you out there that have had aggressive breast cancer come back but DCIS is not considered aggressive.  So can it come back a year later? 

I am adopted and I know on my maternal side there is no breast cancer but I am not sure about my paternal side.   I remember asking the breast surgeon last year that if the DCIS came back what would she recommend doing and she said one of the options might be a mastectomy.  It is not that I want to think the worst, but I also don't want to keep my head in the clouds.

Any help, personal experience or advice would help.
 

Re: one year later and it starts all over again

Posted by ashcon on Mar 15, 2019 2:58 pm

Hi Cindorella‍ 

Welcome to this site and thank you for sharing the story of how you got here with such eloquence and details!  Your journey is a little out of the ordinary, in that you were not given any other treatment after the biopsy got rid of the tumour with clear margins, but we all have different stories and experiences!

I'm sorry that you are back here, but your questions and situation are good ones.  "Abnormal diagnostic of a breast screening exam" does not 100% mean cancer yet.
And DCIS just tells us where the tumour was found (in the ducts vs lobules) and not its aggressiveness.  And "IS" or "in situ" means it hasn't pervaded or travelled to other tissue - it has 'stayed put' in the duct.  This is good news.
The aggressiveness of the tumour is more related to it's histology.
(I had both invasive and in-situ ductal carcinoma tumours, but it was 'triple negative' which is what made it an aggressive type of breast cancer)

Do you have a copy of the pathology report from that first biopsy? It should tell you the histology.  For example, if your tumour was hormone-receptor positive (estrogen or progesterone, or both), or if the tumour over-expressed the HER2 protein, making it HER2 positive.  HER2+ tumours also tend to be aggressive in nature.
With this information, you would know if you should have, or should now be put on, medication to help prevent a recurrence.

As for the upcoming biopsy appt....I would request (nay, demand) that they do another mammogram - preferably 3D mammogram -  AND ultrasound before they do another biopsy.  I am not a doctor, but I'm wondering if they are seeing scar tissue from that first biopsy and thinking it's cancer again. But it may not be, and more imaging may rule out the need for another biopsy.

Here is a link to some great information about breast cancer.
What is Breast Cancer?  Check out the links on the left that cover everything from screening to statistics.

I firmly believe that if you have an understanding of the disease, combined with a knowledge of your own body (that only you can have) then you are in the best position to ask the right questions, and get the best possible treatment for yourself.

Take a deep breath. 

Re: one year later and it starts all over again

Posted by Cindorella on Mar 18, 2019 1:12 pm

Hi.  Thanks for the reply.

To answer your question - No - I was not given any details about the pathology report(s) except that I had microcalcifications that were upgraded to DCIS.  The DCIS itself was only 4mm and was completely removed with the excisional biopsy and as I stated with a clear margin of 6mm all around it.

Since I read your reply, I have emailed the Patient Coordinator with the Breast Screening Clinic to ask the following:
  • Is it the left breast again or the right one this time.
  • Did the pathologist take into consideration any surgery scars (I am sure he did as they placed a wire on the outer scar before taking the mammogram).
  • Has my breast surgeon seen the results since she is the one that ordered the follow up mammogram and does she concur with needing a core biopsy.
I am still waiting to hear back from the Patient Coordinator.  Hopefully I will hear something in the next day or two.

Re: one year later and it starts all over again

Posted by ashcon on Mar 18, 2019 3:01 pm

Hi Cindorella‍ 

Waiting for next steps is the worst, but you have posed good questions to the Patient Coordinator. I hope you hear back soon.
Please keep us posted, if and when you are willing to share any updates. 
Meanwhile, thoughts and strength to you. 

UPDATE: one year later and it starts all over again

Posted by Cindorella on Mar 19, 2019 9:43 am

Well I heard back from the Patient Coordinator and from the Breast Health clinic nurse in the last two days.  Both have confirmed it is the left breast again.  The area in question is 45mm in size and the nurse, reading the radiologist's report, said it was "regional and intermediate" - I'm not quite sure what that means.  Could someone possibly explain what that could mean?

In the last year since my diagnosis of ADH over to DCIS, I was able to get a referral for weight loss surgery.  I had that in Sept 2018 and since May 2018 last year, I've lost 125 lbs.  With all that weight loss, of course my body has changed.  I've had a twinges in my left breast in the last month or two.  I associated it with the previous surgery and the weight loss.  It was even something I had brought to my family doctors attention recently.  Since I had already had the mammogram scheduled when I met with family doc, she said I should wait a little longer and talk to my breast surgeon about the twinges (when I met with her to go over the mammogram results).

Now with everything that has happened in the last few weeks, I can't help but wonder if those twinges might be something else.  I know everyone is going to say - don't worry about it until you have something to worry about.  But that is much easier said than done.

With all that said, I am definitely going for the core biopsy which is scheduled for next Tuesday.

So I'll ask again - has anyone been in this situation before?
Attached files

Re: one year later and it starts all over again

Posted by Hollykins on Mar 19, 2019 10:36 am

Hi Cindorella‍  I am so sorry to hear of your news .Alas. i don't what the terms Regional & Intermediate refer to in this case .They get top marks for keeping it as vague as possible. Smart idea to email & not leave a phone msg .I am going to get my nurse's email at my next appt/call. 

I must congratulate you on your awesome wt loss. Brava! My mom was always overweight & had bariatric surgery back in '83. Unfortunately she didn't lose much but I tried to reassure her that at least it might have stopped her from gaining more wt. 

I feel that whatever your results are that it will be something that can be dealt with successfuly .I would think your most excellent wt loss will certainly help w your treatment .I look forward to hearing how things turn out next week .

I tend to be a worrier. It helps me to try to think positively of things I have managed to deal with in the past .Also, I do a little mind game of "How could this be worse." Lately I came up with..."It would be worse if I was a low income single mom of 4 little kids w 5 dead-beat baby daddies" The kid/daddy ratio is intentional . Organizing things in my house helps take my mind off things. Since you are Cinderolla maybe you could organize your shoes .Don't be surprised if a pair is missing! 

 

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