Hi Marywj

I had LCIS,high grade DCIS, and ILC in one breast, and high grade DCIS and IBC in another. I opted for wide area incisions as there is little between this and mastectomy in terms of recurrence/survival. The only thing that was picked up on mammogram and ultrasound was the DCIS but told this was due to the limits of technology. I did ask and got a MRI just to ensure there was nothing else lurking there and would have liked an annual MRI but unfortunately NICE forbids this.

LCIS is not considered cancer but there is a small risk that cancer can develop in the other breast. However, research shows taking hormone therapy anastrozole (post-menopause) does reduce that risk.

You will be closely monitored over the next 5 years and any changes will be picked up.

I'm not worried about the increased chance of recurrence and my tumors were grade 2. I'm just getting on with my life.

Hope this helps x

Hi Magpiemaggie,

Thanks for replying.  I'm sorry you have been through it as well, but it's great to read that you are so positive and doing well.

I feel the same about wanting the MRI.  Lobular doesn't show up in usual screenings I've learned and I'm worried I've got it in the other breast.  I know I'll be closely monitored now with yearly mammograms but that won't pick it up.  I'm going to try to press for an MRI and see what they say.  I feel quite let down that I wasn't told about this actually and only found out from getting my histology report.  
Wishing you all the best.

Mary x

Hi Mary

If it's any consolation, I only found out the full extent of my BC 3 years after treatment. I put that down to a socially inept surgeon and an incompetent breast nurse, and an oncologist who is run off their feet, At the end of the day, it changes nothing.

In my opinion, the fact NICE won't action MRIs for lobular screening comes down to cost, I guess we just have to accept locular will only be caught early as an 'incidental find'. Seems at odds with NHS guidance that tells us finding cancer early is key to survival. 

It would take Cancer Research UK and/or Breast Cancer Now to lobby for change.

take care x

Hi Magpiemaggie,

Gosh that's really surprising that you only found out 3 years later!  I agree with you, these surgeons don't like 'chatting' or in my opinion being questioned.  
I always felt I wanted to be an advocate for my own health and I had lots of questions!  Most of the time I got an upward eye roll from my nurse when I asked things.  All she would say to me was "you're getting gold standard treatment here" and "you're in good hands".  I'm not saying I wasn't but their lack of explanation fuelled doubts and a lack of trust for me which didn't help me as I was really struggling with it all at the time.

I have never seen an oncologist, was told I wasn't eligible for oncotype or any other such testing, no MRI scans, just sent on my merry way after a mastectomy with Tamoxifen.  I'm 55 and haven't had a period in 11 months and can't help feeling I should have anastrozole instead... another question!
I really had to press for a copy of my post op histology report and it took a while to appear!  It certainly made interesting reading, especially as it says the pathologist couldn't find my second biopsy site!!  My mind went into overdrive then, had the surgeon got all my DCIS out and why couldn't they find the marker?!

After emailing my nurse with a ruck of questions she emailed me back saying my surgeon was going to write to me to "help me move on".  I get the distinct impression they think I'm neurotic, lol, I don't think I am, it's my body and I feel I have a right to information, that's just me!

I'm seriously thinking now about obtaining all my scans and reports and sending them to a private oncologist.  I just feel it's a great pity that I feel the need to.

Nice to hear from you anyway.  Sorry for the moan!  All the best going forward.

Mary x

Hi Mary 

My initial impression when I first met my BC team is that the focus was on the type of surgery rather than the cancer itself. I was expected to decide on what type of surgery I wanted without the knowledge required to make an informed choice. I would have felt better with the process if I had seen an oncologist first to gauge the severity of the disease before meeting the surgeon. A cancer process that has surgeon first and oncologist last seems back to front to me. 

I fully support your desire for transparency, and agree it is necessary to gain trust but many don't feel the same. In my experience about 99% did not want to know anything about their cancer so I found I was seen as an oddity by some and refreshing by others - mainly the oncologist who, in my opinion, are more social and welcome being challenged. 

I think your questions are valid and hope your surgeon can answer all your questions. 

Please et me know how you get on x

Hi Mary 

My initial impression when I first met my BC team is that the focus was on the type of surgery rather than the cancer itself. I was expected to decide on what type of surgery I wanted without the knowledge required to make an informed choice. I would have felt better with the process if I had seen an oncologist first to gauge the severity of the disease before meeting the surgeon. A cancer process that has surgeon first and oncologist last seems back to front to me. 

I fully support your desire for transparency, and agree it is necessary to gain trust but many don't feel the same. In my experience about 99% did not want to know anything about their cancer so I found I was seen as an oddity by some and refreshing by others - mainly the oncologist who, in my opinion, are more social and welcome being challenged. 

I think your questions are valid and hope your surgeon can answer all your questions. 

Please et me know how you get on x

I will, thanks Magpiemaggie.  I really appreciate your response, it's helped a lot.

M x