Newly diagnosed invasive lobular breast cancer

Ok thanks for explains all that, it was a bit confusing but I’ll take note and try and link into some of these resources over the next couple of weeks. You have been so helpful and kind taking time to post all this. Very much appreciated. X

So sorry to hear you are also going through this horrible journey but very impressed at how quickly things are going for you treatment wise. I also got diagnosed in November but only had my MMR last night and was told it could be 2 weeks at least till the result goes back. I really hope all goes well with your surgery in January. xx

Thanks Orangeangel for your reply. I’ve just replied to another lady who is at the same stage and diagnosis as us and yet you too have seemed to have got many of your scans done already and a date for surgery confirmed. I think I’m living in the wrong part of the country! Anyway I’m beginning to feel ominous about what may happen and have even convinced myself that I might have to end up possibly having a mastectomy and don’t care anymore. Anything to get peace of mind if we ever can again. I really wish you all the best with your surgery and hope you have the best outcome. Take care xx

Hi Missyk, thanks for your reply. It’s so lovely to hear from so many people on here but such a shame it’s for the reasons we are here. It’s quite scary how difficult this type of cancer is to spot on a mammogram and even when it is spotted it probably is only the tip of the iceberg. I also wonder why so many more ladies are being diagnosed with this type. It just shows how ignorant I was before being diagnosed as I thought there was only one type of breast cancer. Mine was 9mm but was told the mri would definitely show it to be bigger. I think I was initially quite terrified and shocked at getting another chancer while still having treatment for an existing one but again that’s been so naive of me. Sometimes ignorance is bliss but I think since joining this site and hearing from so many lovely people, I don’t feel so alone now and I have gained so much information which definitely helps me process what I’m about to face and I actually feel that I can do this now. The worst part is lack of knowledge and also waiting for test results but I’m going to put it all out my mind now until after Christmas. Thanks for sharing your story and I wish you well in your recovery. Fingers crossed you get the node clearance you obviously hope for. Xx

I had most of scans in Nov, so Dec has been longest month just waiting. I had my pre op today and asked about chemo but have to wait until pathology comes back and there is another MDT meeting before a decision made. I had a good chat with my specialist cancer nurse today and if you've not already spoken to them I would recommend it, they have more time than the consultants to chat through your worries and irrational thoughts we all have. Take care xx

So sorry you’re having such a long wait, it really is the worst! The only positive I can suggest is that at least you are in the system now and will get your appointments in due course. I’m sure Covid and Christmas are what is slowing things down at the moment but will hopefully pick up again in January. The waiting seems to take forever but it’s important to get the result and decision from the MDT meeting to plan your surgery and they won’t be able to decide if you need chemo until after pathology results so while we probably all worry about every possible eventuality and it’s only natural as I’ve done the same, it’s just a waiting game and for now just one day at a time. I will also have to wait for mri results then MDT meeting results then will need pre op assessment and also meeting with surgeon and a metal clip has to go in. I dread to think how long all that is going to take but it’s out of my control so I think we just need to focus on today and tomorrow. I really hope you get things out in place for you soon. I will give my  feast specialist nurse a call soon once I’ve compiled my list of questions. Thanks again, take care xx

Hi Leanne4. Like you I was diagnosed with invasive lobular cancer following routine mammogram. I was recalled because of a 4mm area of microcalifications and had biopsies taken. A week later on 12.10.21 I was given the diagnosis of ILC. I had an MRI on both breasts which showed an area of about 51mm on the right. I saw my surgeon who talked through the two options (mastectomy and WLE). My situation was made more complex because I have severe asthma and the surgeon said he only wanted to operate once (so reconstruction if I had a mastectomy was t an option).  When I asked his opinion he said to have a mastectomy because ILC is harder to detect and it can be more difficult to get clear margins. I felt I had no option but to opt for a mastectomy. My operation to remove the right breast was on 7.12.21. I had a sentinel node biopsy and the surgeon took 3 other nodes for sampling. I stayed overnight and came home the following day.  I felt very unwell for the first 7-10 days but am now feeling better physically but am finding the emotional side of things difficult. I got my results on Christmas Eve which showed no cancer in the sentinel or lymph nodes. My surgeon asked me how I felt about chemo and I said about taking a belt and braces approach but he then said there would be little benefit in having chemotherapy. I think he used the Predict tool to look at the possible benefits of chemotherapy and I did the same. Ideally I would like to talk over chemo with an oncologist rather than the surgeon but that didn’t seem to be an option. The waiting between appointments, tests, scans, procedures, operation and more results is so difficult, but you will be OK . Do contact me if I can be of any further help. I haven’t gone into all the details as the post would be so long. Take care. X

Did your surgeon offer you Oncotype DC testing. Mine did and it came back as low risk of spread or reoccurrence. My oncologist said it would be unethical to put me through Chemo with the results I had and it was potentially more harmful than beneficial. 
Surgically I had a WLE that had clear margins, cavity shave and 3 lymph nodes removed 2 were positive).

Hi Angua1. He didn’t offer the Oncotype test because he said there was no point if chemotherapy wasn’t being considered.   I think he used the Predict tool and the benefit of chemotherapy was 2.7%. He said that if the result was anything under 5% then chemotherapy wasn’t worth considering. He also said that because of the impact on my immune system and because of my severe asthma and Covid he didn’t think chemotherapy was advisable.  I did the Predict tool and interestingly if 3rd generation chemotherapy is used then the benefit is just over 5%. I’m not really sure what to think. 

Hi Rosebee, thanks for sharing your story and replying to mine. First of all I am so sorry to read about what you’ve been through recently but I was also shocked to see that you went from 4mm on ultrasound to 51mm after MRI. ThTs really worrying me now as I am now waiting for MRI result and it’s almost 2 months since I was told my ultrasound showed an area of 9mm. What I can’t understand is why I got told I would be having a WLE and radiotherapy before even seeing the MRI results first. I’m now glad I’ve been given a better heads up by people on here than thinking I’ve just got a small tumour that only needs lumpectomy and radiotherapy?

Im also not sure what this predict tool is?  If I have to have a mastectomy I’m now wondering what that will mean for my ability to drive to other appointments or even doing simple tasks like styling my hair, cleaning my teeth, dressing etc etc when I’m right handed and it’s my right side that’s affected ( at the moment!). Even showering and going to the toilet might be difficult. I think I’m looking too far ahead now, but my husband still works full time and for some reason has shown next to no interest in what I’m going through or may have to go through. My mum who is in her 80s has breast cancer for the second time but this time it’s incurable and I worry about her too as she lives on her own and struggles a lot of the time. Oh the joys!

as you say it’s the waiting for results and appointments that’s the worst and feeling you just can’t plan anything and feeling once again that my life is in the hands of the NHS only this time with a pandemic to add to the mix. Thanks again for your advice and I sincerely hope you recover well and return to full good health in time. And well done getting clear nodes just in time for Christmas! Xx