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 

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

Hi Mary 

I am doing well thank you and back to my (new) normal life. Having a fair bit of joint pain on the Anastrozole but managing so far and hoping it will settle as I'm approaching the 6 month mark now.

It was the same for me. I needed that detailed discussion to move on and I was fortunate in that I had no surprises throughout my treatment...it was what it initially thought to be but even then I needed that review and reflection opportunity. Coming as it did 2 months after I had finished RT and "active" treatment also worked well as it gave some distance and perspective to have a full review of events. I am thinking i may go back towards the end of the 5 yr period of anastrozole for a further private consult with the same guy to update on the then current thinking and research for my type of breast cancer

 I'm on patient led follow up no so no more booked appointments apart from my yearly mammogram and I don't believe that includes any review unless I ask for one for a specific reason

I am sure it will help you

Very best wishes to you 

And to you too Dorestgirl.  It's important to be an advocate for our own health.  
 

M x

Hi flossyn

I agree with all you've said, I would have thought given the issues treating someone with lobular cancer i.e. Not responsive to chemo., one would think that focus would be on finding this at an early stage, also don't understand why are mastectomy. radiotherapy is not a given. 

When I was diagnosed with DCIS, I did not want reconstruction as I was scared doing so would scatter the calcifications. My surgeon reassured me that this won't happen but I went with my gut instinct. A month before surgery a research paper was published that showed recurrence was higher in dcis patients that had reconstruction opposed to those with invasive cancer. My surgeon thought that my find wasn't worth worrying about, if it wasn't worth worrying about why did he carry out the research and publish the paper - he nearly fell off his chair!

The point I'm making is clinicians take offence if questioned, the breast cancer pathway has become a production line and not equipped to handle anything or anyone outside the norm. The change must come via NICE so us patients can argue our case more effectively. 

Hi there

Agree with your points.  The screening process is a big beast of a process IMO.  There are some great technical aspects to it - the ability to perform guided biopsies, magseed etc. The radiology side is good from what I can see but it is too rigid in terms of types scans allowed and there seems little ability to do something different for patients whom dont fit into the norm or the biggest percentage (i.e. the ductals).  I have read that there is the be a shake up of cancer screening in general in the Uk where there will perhaps be a more targetted approach. at the moment i think of 200 screened for BC i patient is saved - that is great but i do wonder if resources could be used different to pull out those at greater risk and have a more targetted screening approach.  When LCIS is found this should be disclosed to the patient and an MRI of both breast performed.  this is the only way i think that an ealry diagnosis of ILC is possible (other than by chance on surgery) and discovering cancer early is surely what the aim is.

It is very hard, I find, to get the balance of asking questions of surgeons and not coming over as too challenging or critical or also of being knowledgable and therefore giving the impression that one doesnt need their help.  When I have asked questions my husband said i come over as being very organised and knowlegable discussing things at their level but inside i feel so very vulnerable and worried. When I ask things now I am trying to make  sure i always say - ' this is not because I dont trust you or think you are not looking to give me the best care possible, i really want your advice and help' .  I think it still does not sit well with some of them to question but is i feel  important for a person whom has any cancer diagnosis to keep asking questions. I do strongly believe that the surgeons and oncologists are in their professions in the greater part because they want to help people and care for them  and do the right thing.

Tthe professional bodies includign NICE  and charities need to address the challenges of Breast screenign and adopt a much less 'one size fits all approach'.  it could save them money and resource if they did that and more importantly save lives. 

xxx

Hi there

Agree with your points.  The screening process is a big beast of a process IMO.  There are some great technical aspects to it - the ability to perform guided biopsies, magseed etc. The radiology side is good from what I can see but it is too rigid in terms of types scans allowed and there seems little ability to do something different for patients whom dont fit into the norm or the biggest percentage (i.e. the ductals).  I have read that there is the be a shake up of cancer screening in general in the Uk where there will perhaps be a more targetted approach. at the moment i think of 200 screened for BC i patient is saved - that is great but i do wonder if resources could be used different to pull out those at greater risk and have a more targetted screening approach.  When LCIS is found this should be disclosed to the patient and an MRI of both breast performed.  this is the only way i think that an ealry diagnosis of ILC is possible (other than by chance on surgery) and discovering cancer early is surely what the aim is.

It is very hard, I find, to get the balance of asking questions of surgeons and not coming over as too challenging or critical or also of being knowledgable and therefore giving the impression that one doesnt need their help.  When I have asked questions my husband said i come over as being very organised and knowlegable discussing things at their level but inside i feel so very vulnerable and worried. When I ask things now I am trying to make  sure i always say - ' this is not because I dont trust you or think you are not looking to give me the best care possible, i really want your advice and help' .  I think it still does not sit well with some of them to question but is i feel  important for a person whom has any cancer diagnosis to keep asking questions. I do strongly believe that the surgeons and oncologists are in their professions in the greater part because they want to help people and care for them  and do the right thing.

Tthe professional bodies includign NICE  and charities need to address the challenges of Breast screenign and adopt a much less 'one size fits all approach'.  it could save them money and resource if they did that and more importantly save lives. 

xxx

I agree with all you have said there.  Evidently I'm not on my own then in that LCIS was found during a biopsy and I wasn't told about it.  This erodes trust and it's because of this that my anxiety has increased tenfold again when I had worked so hard to get through my BC experience and keep a lid on it.  I found it all exceptionally hard and it's taken months to get my head around it all and settle into 'normal life' again after getting to the other side of treatment.  I almost feel back at square 1 in that I have no idea now how I'm going to manage my risk for lobular cancer going forward.  I feel so disillusioned, how dare they not tell me.  What else haven't they told me frankly!

I'm not holding back anymore.  Now I and they know it's there I'm straight in demanding an MRI.  How can they refuse frankly!

M