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

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

M x

I totally agree with you , change needs to be lobbied for by CRUK re: :MRIs.  . I have this mix of pathology DCIS, LCIS and ILC ( as incidental finding).  LCIS not initially disclosed and then dismissed by surgeon.  Worry how much ILC is out there undiscovered because MRIs have not been done and pts falsely reasurred that all is ok on mammo and to come back 3 years later. But then of course that is unlikely to be early disease. The screening system policy is geared toward the most common type DCIS, because lobular is much rarer they are not adequately screening for this and only treating when it appears as a coincidental finding so is very hit and miss. LCIS needs also to be managed much better. I think units are also fixed on the standard rules of what they can do, they don't seem to look at the individual pt in front of them and decide what is best as an investigational tool or preventative treatment. Thanks for raising this. 

Hi Mary

I read your post with interest and I'm so sorry you haven't been given all the info you should had nor had the discussions you want. You are absolutely right, this is happening to us and we should have the opportunity to ask what and how much we need to.

I did have a private consultation as, although I was happy with my treatment, ( WLE for 8mm IDC and 5 sessions of RT then 5 years of Anatrazole- 6 months in now!) my treatment was so quick I didn't have the chance to check my understanding of what the diagnosis of BC meant for me

It cost £160 but for me was worth every penny. I got copies of key reports / MDT notes plus clinic letters and sent them through with my questions. The consultation was an hour and allowed me to go through the level of detail ( a lot!!) I wanted. It was easy to arrange but a bit of a wait as the consultant oncologist I chose was busy. I chose him as he is actively involved to BC research as well as practising in both the NHS and private practice so was happy to wait

I thought it helpful to share and hope you get the answers you need xx

Hi Dorestgirl,

Thank you so much.  I think you may have suggested this to me before, and on your suggestion I am in the process of getting all my reports together, so thankyou.  It's taken a while if I'm honest and I've really had to push for them.  
 

I decided to contact the M*****n (I don't think your allowed to name hospitals on here).  They do private consultations and I'm told it can be between £250-500 depending on what they need to do.  It's not cheap but for my peace of mind I'm happy to do that.

I've heard from my nurse and she very sweetly apologised if I was made to feel that my queries were unwelcome.  I don't think I'm the norm for them!!  Apparently my consultant is writing to me addressing all my concerns but I haven't heard yet.

They are all only doing their job I'm sure and probably don't have the time to sit and answer endless questions.   I will only be able to move on if I get answers though, that's just me.  If I'm honest I'm more annoyed with the consultant.  She barely mentioned the post op histology report at the appointment after surgery and just quickly gave my Staging.  For some reason she didn't feel the need to tell me that the pathologist had also found LCIS which I find astonishing. I have a relative who was diagnosed with lobular cancer this year and it doesn't show up on mammograms, only MRI's.  LCIS isn't invasive but I may now be more at risk from developing lobular cancer in my other breast so she should have told me I would have thought!

I'm going back to the clinic next Tuesday for my prosthesis fitting (finally), so I think they're going to have a chat with me then, I hope so anyway, although apparently my consultant isn't available.   
 

I hope you are doing well.  Thanks again for the advice about the second opinion, it really helped.

Best wishes,

Mary x

Hi Flossyn,

That's very interesting to read about your experience.  My consultant hasn't disclosed that my post mastectomy pathology found LCIS.  This worried me as I have a relative who has recently been diagnosed with ILC and I was aware it doesn't show up on mammograms.

I'm pressing them for more information about managing my risk of lobular cancer going forward and I've asked for an MRI.  Whether I'll get one remains to be seen.

I'd say to anyone now going through this frightening journey not to hesitate to delve deeper and ask questions.  Trust in your team is very important but you can only make decisions for yourself and understand your treatment plan and risk if you have all the information.  Lack of information for me has increased my anxiety tenfold and it could have been avoided if they had spent more time being thorough, I feel anyway.

I share both your concerns about lack of screening for lobular cancer.  Something must be done to address this.

Wishing you all the best.

Mary x