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 

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

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 

I totally empathise how you felt about delaying reconstruction due to calcifications.  That's very surprising to read about the reaction from your consultant.

I felt exactly the same.  My gut reaction was, how can they be sure they've got all these tiny microcalcifications out?  They're not like a solid lump or tumour and can be quite random.  This is the reason I opted for a full mastectomy.  In my mind it was the only way to ensure it had all gone.

When grade 1 IDC was found after my first biopsy the consultant told me a tiny 1mm area was within the calcifications and that she was full of praise for the pathologist who had picked it up.  She also told me that they all felt there was a good chance that the biopsy process had got it out anyway.  Well, move forward 8 weeks after my mastectomy and it turns out it's not 1mm but 100mm and was still very much there!  Thankfully pathology showed good margins.  They also told me it was still very small and couldn't really understand how anxious I was!

Additionally, after the first biopsy, my planned lumpectomy was cancelled because all of a sudden they had found more calcifications, unseen before.  More biopsies which showed DCIS. After this I was determined to have a mastectomy.

I haven't had any reconstruction at all.  I want to wait.  My gut instinct was to let things settle and see how things go.  I share your concerns about spreading these tiny calcifications.

Mary x

Hi Mary

I did all the research I could and made the decision I was comfortable with, that's all that can be asked of us given the limited data available to us pre-op. The limitations of breast technology doesn't help to provide the full extent of BC, luckily the pathway allows some flexibility for further surgery./treatment. 

I guess my insurance policy was radiotherapy to mop up any stray cells and anastrozole to starve any cancer cells that may be lurking around.

Will you still have yearly follow-ups?

Hi Magpiemaggie,

Yes, yearly follow ups and mammograms.  An annual MRI would be good but that's not going to happen for sure!

Radiotherapy would have been reassuring but it's not given after mastectomy, although I was due to have it after my initial lumpectomy which was cancelled.

I'm left having to trust the surgeon that it's all gone, although reading in my histology report that the pathologist couldn't find the second biopsy site doesn't reassure me!  
 
All the best 

Mary x

Hi Mary

I don't think they will offer an MRI but there is no harm in asking. Who prescribed Tamoxifen to you if you haven't seen an oncologist? 

A mastectomy will have got rid of everything so I personally wouldn't get hung up on biopsy sites.etc

Hi,

I never saw an oncologist which I thought was strange.  My husband had early prostate cancer four years ago and we saw the surgeon and an oncologist at his post surgery appointment.  No further treatment was needed for him either thankfully but it was reassuring to hear it direct from the oncologist.

I've only ever seen my surgeon and nurse.  They told me that post mastectomy I'd have Tamoxifen for 2 years then will switch to Letrozole for a further 3.

I'm currently getting copy reports together (which has been a bit of a battle frankly from my hospital) and am paying for a private referral.  They will review everything.  I feel it's the only way I will get full peace of mind.