I haven’t logged on to the website for a long time, as I’m now over 4 years since my last treatment, and now know so much more about lobular than I did when I was first diagnosed in 2008. In fact I didn’t even know I’d had lobular then until I had a recurrence in 2019, when I also had ductal in the other breast. The lobular was never picked up on my original mammograms, that’s the nature of the beast. I’m hoping things have changed somewhat, as you have said, lobular seems to be treated the same as ductal. I could go on an on….but I won’t, other than to say I’ve NEVER been offered an MRI, I only achieved a ‘one off’ on my remaining breast after making a nuisance of myself. I really just want everyone who is on Facebook to be aware that there are groups on there giving loads of information. In particular ‘Linking lobular ladies’, where those of us who have been diagnosed with lbc can share experiences and encourage each other etc. I’ve learnt loads from that. Also just to say that it’s now nearly 16 years since my original diagnosis, and I’m still here, and feeling fit and healthy at 70! I should be on letrozole, but couldn’t stand the side effects (mostly joint pain) so opted to stop it and enjoy life again. My choice, not trying to influence anyone.
Hi SueLSE
What a relief to read of someone who had ILC and opted out of hormone therapy. I was beginning to think I was the only mad one on the planet who ever said ‘No’.
I’ve just dropped Anastrozole after only 10 months because I wasn’t me any more, simply reduced to a decrepit, knackered, grumpy 90-year-old (I’m only 63 in human years). I have also been turned down twice for an MRI to check bones and tissues around tumour site / ex- left boob which only STARTED to feel tender 1-year post surgery. (It has faded away again after a further 6 months.)
I had ILC in the left, missed on all annual mammos and ultrasounds (11mm, 1 node involved with extracapsular spread; axillary clearance, delayed radiotherapy due to backlog, delayed start on Anastrozole due to my terror of certain rare but devastating side effects). I also had invasive mucinous in the right: self-referred lump which began the whole ‘journey’ (cringe). Double mastectomy - staying flat. Both cancers ER8+ PR8+ Her2- Oncotype DX low scores - no chemo benefit. Could I ask how your details compared to mine, how long you stuck with Letrozole and did you try/consider a different AI or Tamoxifen?
So I am strongly oestrogen receptor expressive, cancer cells could have travelled beyond local area due to that one node’s advanced condition, and the delay in both adjuvant therapies could have missed the bolting horses. The ideal candidate for hormone therapy. But what is a miserable existence on meds worth? I might not even get a recurrence or mets.
I would love to hear from anyone else who has taken this leap of faith. It’s been pretty relentless ‘pro-drugs’ one-way traffic up until now.
And as you say, SueLSE, it is a tough choice, but a choice nevertheless.
(www.lobularmoonshot.org for one woman’s in-depth, insightful, enlightening, personal experience, doctors’ and scientist’s input, info and her crusade for lobular research funding. They’re also on Facebook, I believe.)
Had an MRI in June to investigate suspected kdney stones. No stones, but blood spots on my liver and a shadow in my left breast into left armpit. Referral to BC clinic and mammogram and ultrasound were both clear but breast surgeon was concetned enough to do a biopsy which confirmed lobular bc. Mastectomy in August to remove 52mm tumour. Surgeon also removed 36 nodes, 27 of which were cancerous. Ine node couldn’t be reached because of proximity to blood vessels. Ive been having chemo since September, due to have my last round next week. Then meeting with onco to discuss radiotherapy. I have lymphoedema in my chest wall and around reconstructed breast which is very uncomfortable. Had 4 rounds of EC followed by 4 of Paclitaxel but onco reduced dosage of pacli due to neuropathy.
When I tell people that lobular doesn’t show up on mammograms, they are shocked. I tell them its still important to have mammograms but also important to self check.
The past 3 months of chemo, ive felt as though ive been existing rather than living. I’m looking forward to chemo ending but worried about the long term effect of neuropathy, not sure how to manage lymphoedema (but I’ve got a referral to a clinic so fingers crossed with that), but also worried about the effect of radiotherapy and SEs of AIs that I understand I’ll be prescibed for 10 years.
Currently 60 years old. I havent worked since August because chemo has been so tough. GP signed me off work until end of March 2024.
I have been diagnosed with ILC in right breast. 2 tumours @ 20mm and 1.9mm. Just got the news on 19th December. Waiting on surgery date to be confirmed for mastectomy. I have not been given an MRI. The consultant said no need for MRI as it would only be required if there had been a chance of doing a lumpectomy, which she has ruled out based on the mammogram alone. However, learning that ILC doesn’t show up clearly on mammograms now has me really concerned that there could be other tumours in the left breast. Should I push for the MRI?
Dear NGT
So sorry to read your post, if you would feel more content by having an MRI scan. I would push for this to put your mind at rest, however, if your consultant feels that you don’t need this, you can always asked for a second opinion.
Maybe, call your breast cancer nurse, have a chat letting her know how you’re feeling, I’m sure she’ll advise you, and point you in the right direction.
Wishing you well going forward lots of health and happiness for 2024
Hugs Tili 
Thank you Tili, I will speak to my nurse asap in the New Year. All the best for 2024.
@ngt I would say do whatever it takes to put your mind at ease. I have personal experience in following that path during diagnosis.
I know I wasn’t in the same position as you, but I made a case for an MRI due to density of breast tissue during my diagnosis late last year. This was taken back to MDT and agreed to, which ultimately changed my surgery from lumpectomy to mastectomy. An indirect side benefit of that was that both breasts were checked. My diagnosis was incidental with a tumour detected in the non-symptomatic breast.
I also went for a second opinion to get the confidence I needed that everything that needed to be considered was prior to surgery, because there were moments in time where I felt I was driving some of the diagnostic tests for treatment planning, rather than the team treating me.
Hope all goes well for you. xx
@TDG Thanks for your reply. So when you pushed for the MRI, it revealed a tumour that hadn’t previously been identified?
I am also worried about the waiting time for an MRI now. I think it is currently at 3-4 weeks and I had really hoped to have had my surgery by that point. If I push for one now it may delay the surgery.
@ngt Yes, the MRI did highlight another 2mm area of concern, which then had to be investigated via a US guided biopsy (as it wasn’t very large or clearly visible on the US it wasn’t as straight-forward to do) and there was a further wait for pathology.
The MRI at the time for me was raised as urgent so appointment came through in about 2 weeks from when I had the original pathology result and discussion with the surgeon. But it did delay surgery for me as well; I think that is one point that you probably need to weigh when making the decision on whether to request it, ultimately a very personal choice.
When my MRI was requested the surgeon did tell me it can open up a can of worms with MRI’s highlighting false positives that would then need to be investigated before surgery, but in my case that didn’t really happen as the only area it highlighted turned out to be a tumour.
When I was making my decision I put weight on the fact I’d rather have a single surgery, rather than multiple in the event they didn’t get clear margins because of other undetected areas due to breast density. But in hindsight I do recognise that this isn’t the only way to weigh things, and I ended up having a second surgery due to the SLNB, returning 1 out of 4 positive. So there are no guarantees whichever choice/path you take. I’m still content with the choice I made as it gave me peace of mind and confidence in my treatment plan.
@TDG Thanks for that info. I will speak to my nurse and weigh up the options. I am finding it really difficult to make decisions. I am also trying to decide whether to have diep immediate reconstruction or not. The diep would involve an mri to locate blood vessels in my stomach but I am swaying towards no reconstruction. It is just so much to take in.
@ngt I can truly appreciate how difficult it is to make these decisions, as I felt the same when going through the process myself. Similar to you I too had to make a decision on reconstruction after the second pathology result came back & found it extremely difficult with a whirlwind of emotions (swaying this way & that way). I went for a private second opinion at that point in order to enable me to speak to a plastic surgeon to get all the information I needed as I was told this would take 6 weeks in the NHS trust I was being treated under at the time. Given I was slim with limited tummy fat both surgeons I saw said the possibility of a DIEP would be borderline & require plastics to examine me. The meeting with the plastics consultant is what gave me the clarity I needed to make my decision, after hearing what was said about what it would entail and asking a lot of questions I had in my mind. I went with no reconstruction (option of delayed in the future) in the end after creating a pro’s & con’s list for both. The reason I did all that fact finding & soul searching was to try and avoid regret after the fact, and 10 months on from surgery I am still content with that choice.
Its not just the decisions but also all the other things that go on in your mind about cancer growth when there are waits for test pathology results and follow-on appointments, scheduling surgery that I found very stressful.
Once I had made up my mind, I felt that a huge weight had been lifted. Looking back at my treatment journey I would say that was the first most difficult decision point. Regarding the scan to locate & map blood vessels for DIEP reconstruction that is different & completely independent from the Breast MRI (as I recall it I think it’s a CT scan that I was told would be used for mapping blood vessels).
I hope you find this information somewhat helpful. Do take the time you need to speak & get the information you need from whoever you need to help make the decision that is right for you.
Sending you love & hugs xx
Hello ngt
I didn’t realise before my encounter with cancer that nowadays a patient is given SO much choice and so many decisions to make about priorities and treatments. It’s good in a way, but so, so very difficult.
Concerning reconstruction, it depends on several things:
If you are having a single mastectomy, will the reconstruction match the remaining breast well enough or would a prosthetic be an easier option?
Are you the type of person who sets great store by their physical appearance?
Do you want to disturb other healthy parts of your body (all surgery carries some degree of risk and will leave its mark) in order to facilitate reconstruction?
I opted for double mastectomy, even though my two different types of tumour (one in each breast, ILC and invasive mucinous cancer) were small, 11 mm and 21 mm. I had strong family history (not BRCA gene mutations) and had seen my sister have single DIEP reconstruction which looked pretty good. However, I wanted all - possibly troublesome in the future - breast tissue removed. (I had considered elective, preventative double m. years ago but didn’t go ahead, to my eternal regret now, of course.) So future reconstruction not really an option without skin-saving surgery.
Having made this huge first decision for radical surgery, I didn’t want to mutilate my body any further than necessary.
Having been small busted right up until the middle-aged spread, my identity and confidence had never revolved around my breasts/figure.
I’ve always preferred not being the same as everyone else, so going completely flat did not faze me (after discussion with my partner to make sure that would not impact on him too much).
Surgery was straight forward, successful, with a neat, if dramatic, scar (one continue loop from armpit to armpit after having ‘dog ears’ tidied up during my second operation to remove all lymph nodes on left side after one was found to be involved). It’s slightly disconcerting that I have no cushioning for my sternum and ribs. I occasionally wear my falsies to fill out a dress for any glamorous occasion (few and far between!).
In my case, I found it FAR more difficult making decisions about adjuvant treatment because of all the risks they carry themselves. The more I read, the more dread I felt.
I did go ahead with radiotherapy eventually. The treatment itself was, for me, a breeze. But I will always be waiting for the late effects to develop.
I spent even more months agonizing over hormone therapies, knowing this delay itself was not ideal. It was not the obvious immediate effects like fatigue, hot flushes, disturbed sleep and bone/joint pain that troubled me the most, but rather the possible life-changing /fatal consequences. I tried Anastrozole for 10 months, by which time the common side effects had increased to such a degree it was severely impacting my daily life. 9 more years of this?
I had a couple of bisphosphonate infusions, looked into them further then thought better of that.
I have stopped all treatment now. With strong oestrogen receptor expression in both tumours, that might seem rash, when there are cancer risk-reducing measures out there. But getting a recurrence or metastasis is just the one risk.
Do I worry I’ve made the wrong decision (again)? Yes, every night. I might even change my mind again. I just don’t know.
Probably not very helpful to you, but comforting perhaps that other people go through hell trying to take these impossible gambles.
Good luck with making the first tough decision.
@TDG I am experiencing exactly the same emotions and indecision, flip flopping between reconstruction or remaining flat. I have already seen the plastic surgeon who has said the diep will be possible, albeit the tummy scar would be high. If I had a crystal ball and knew the pathology results, it would be so much easier to make the decision. I may or may not need chemo, depends on final size of tumours (or whether it is one big tumour) and whether there is any lymph node involvement. Radiotherapy is also not definite. I don’t want the reconstruction to delay chemo at all if I do need it The plastic surgeon said they do everything possible to ensure patients are recovered in time for chemo but the prospect of any delay is terrifying.
@MistyK Hi Misty. Thanks for responding. To start with I didn’t think I would be bothered going flat however, I am now concerned that this really obvious reminder each day is going to be too triggering. I think I could deal with it better if I was having both sides done. I asked if a double mastectomy would be possible but my consultant said she would not recommend this as there is no sign of tumours in the left breast. As a result, she would need to refer me to a psychologist to discuss it, which would delay treatment. I don’t know, maybe this could be done later if I push for it, if I feel really uncomfortable being lopsided. The diep sounds pretty invasive itself though and I worry about still feeling a bit tender and not fully recovered before (potentially) starting chemo while not being at my best physically.
You seem to have thoroughly researched your options and have come to the best decision for you❤
Thanks for replying ngt.
I wish you all the very best with keeping as many options open while you have longer to let your thoughts settle out. Best of luck for the road ahead 
@ngt Everything you’ve mentioned personally resonates with me, even though my cancer profile was different; all-be-it plastic surgery would have been far more invasive for me with thigh & tummy scars & subsequent fat grafting surgery - where it would be a process not a one-off surgery. I too was told that they would do everything possible for me to recover in time for next treatment steps, but knew no one has a crystal ball.
Even though my treatment plan (based on pre-staged pathology) wasn’t expected to be very involved (early stage primary), I knew nothing was guaranteed, and asked the what-if questions to establish how a potential delay in recovery from plastic surgery would make my subsequent treatment journey (chemo/rads etc…) more difficult.
Reading Misty’s post & your reply, I think it never really occurred to me to ask the double mx question at the outset. The thoughts that did go through my mind were, if I had a recurrence later, I would have the option of that path (flat) without going through an invasive reconstruction process on a single side immediately. I also knew that a reconstructed breast would not feel like a natural breast as it would be numb so I considered what it was that I would miss with no reconstruction (i.e. was it just the aesthetic appearance, or was it more the way it felt and made me feel).
One thing I do realise after the fact, now having a single side flat is that wearing a prosthetic is important for back posture. It wasn’t apparent to me initially but I realise some of the back pain/discomfort I was feeling while just wearing the softie I was given has reduced after recently being fitted for a prosthetic. This wasn’t something I gave a lot of priority to during my recovery journey, but glad I did get to it last month. So there is the symmetry element to consider, which I did think about earlier but not in terms of posture, it was more about how clothes would fit me/changing my entire wardrobe etc…
In the end I think I did what I had to, to give me the peace-of-mind and some form of structure (perhaps control) to make subsequent decisions. Being analytically minded it was the correct method for me; the cancer profile picture did effectively change for me with the post-surgery pathology, even though it didn’t necessary change my immediate treatment plan, it came very close to doing that with multi-focal, other pathological factors & 1 node positive.
The decision making journey continues to this date, but looking back I think the first decision point was certainly the biggest one from a mindset adjustment perspective.
Wishing you well for your treatment journey. xx
@TDG Thanks again for replying. It seems you have taken a really pragmatic approach. The pros and cons are leading me towards no reconstruction but my emotions are pulling me in the opposite direction. I have a couple of weeks to decide and will probably sway each way numerous times. I really appreciate your (and Misty’s) input. X
Hi, I’ve today been diagnosed with ILC, 15mm tumour, ER+ looks like not spread to lymphs but I have an appointment next week with an MRI planned.
I had a lump that isn’t BC but my GP found a further lump and referred me.
I had mammo, inconclusive and lucily they picked it up on the ultrasound.
Had a biopsy.
Subject to MRI results, planned treatment is lumpectomy and radiotherapy.
I’m almost 56 and post meno, I’ve been told will be on inhibitors.
Is there anything else that I need to ask at my next appointment ?
I’ve been reading back on here and scared myself to death TBH, even though they say they found it early…
Hi all
I’m 52 on Sunday mother’s day 
I’ve had a rollercoaster of a ride since August with my bc
I had lobular in the left and ductal in the right opted for a double masectomy with immediate reconstruction on the 20 th December 23 was healing and recovering well but I am now on antibiotics for a infection which I’m petrified it will fail I go back next week in the hope it has gone thankyou for the input on lobular I will check them out 
Hi sammie, thanks for your reply. I’ll be 56 on 26th this month, probably roudn the time I have my operation. I so much hope that the antibiotics do their thing x