God that’s awful about health boards in Scotland. Which is yours?
Mine was a lump seen on the mammogram that I went to the symptomatic breast clinic with. This is one of the reasons I was told I wouldn’t have an MRI annually as the lump did show up on the mammogram! But on my discussions with my oncologist and my research I have found that pleomorphic lobular can form a lump when it’s invasive and the cells look like grade 3 ductal. This is why I was misdiagnosed as grade 3 invasive ductal at biopsy. Then changed after mastectomy.
So like you I am going to have to pay for MRI. Unless my oncologist will back me up as she has been very helpful with all my questions that’s how I got to the reason my diagnosis was incorrect after biopsy.
I’ve been told only mammograms in the future, despite the fact that they were inaccurate this time. I asked for an MRI scan, but was refused, so we are going to have to fund that ourselves too, just for peace of mind. Whatever happened to ‘prevention is better than cure’? X
Hi @valeriear yep I know - it makes you wonder. I think my surgeon was putting the nhs point forward that they couldn’t afford to send all lobular cancer patients for expensive MRI’s. But imagine if it was her in our position?!
On the point of oncotype dx testing I asked if that was done for me - I’m 54 with 2 lymph nodes and grade 2 pleomorphic - my surgeon said no as lymph nodes were involved? So now I’m worried I’m going through this dense dose chemo every 2 weeks for 8 cycles when my score may have showed I didn’t not need it?
What should I do now ask my oncologist? As I’ve had 2 chemos now?
And yet mine was cross that every lobular patient automatically was sent for an MRI. It would be nice if they could all agree on the best practice for patients and then stick with that .
Sorry @valeriear for so many questions but what grade was your final diagnosis and was your tumour all pleomorphic as mine was a mix of pleomorphic invasive and pleomorphic in situ.
Mines a mix of PLCIS and ILC also. 5cm but I no longer know the percentage of each. Originally it was nearly all in situ and small invasive but my post surgery pathology seems to have blurred it all together. Am so confused. Going to request my latest path notes and compare them to my first ones
I think I started this thread so thought I should answer at least regarding my own experience. My lobular moved from stage 2 to stage 3 due to lymph nodes involved; original size was 2.5 cm plus a sattelite smaller close by thing. I had exposure in all three of the sentinal nodes, then 7 out of 36 after having a follow on lymph node surgery to decide whether or not to do chemo. I might not have done it without the 7 additional lymph nodes. I had an onco score of 16 which is low-ish intermediate risk. I was told the lymph node involvement overrides the onco score. I got a second opinion; both oncologists wanted me to do more aggressive chemo, a/ct or ac/t or something (8 rounds every 2 weeks). I was told the reason people believe it doesn’t work as well with lobular is that lobular slower growing and chemo works on fast dividing cells. I was told the lobular cells are still faster dividing than normal and so they thought it would help. I declined the ac/t protocol and did the TC chemo every 3 weeks for 4 rounds. I think the dose dense probably has a better shot of working but I don’t know. I was fearful of it. Also mine not pleomorphic which seems a little different so maybe chemo works better on that. You’ll possibly get better outcome with your protocol; I don’t know if it’s same as the other one I was offered.
Note: I’m in US with a cancer specific hospital, I get mammo ever 6 mos, then MRI after year and so on so one or the other every 6 mos. Now on anastrazole and Abemacciclib (Verzenio) 100mg. I seem to choose lesser aggressive doses of everything but who knows if it will come back to bite me.
Good luck; hope that helps you maybe ask your onco more questions.
Thank you for very much for replying - has helped me a lot. I’m on the dose dense regime 4x EC every 2 weeks followed by 4x Paclitaxol every 2 weeks. My oncologist said this dense dose regime was more effective for grade 3 tumours and aggressive cancer which mine is. It is different to classic lobular as it divides and grows much faster. So I am not going to push it with my oncologist. I believe they are doing all they can for my aggressive type. The tumour itself told them I didn’t need an oncotype dx test. I will then have radiotherapy and bone infusions and hormone plus targeted therapy in a hope that my outcome is ok - I too am fearful of this aggressive treatment but feel this will give me the best hope of no reoccurrence.
As you know we have the NHS here so all free but I think I’ll need to pay for extra MRI’s for peace of mind.
I did my research then said throw the kitchen sink at it…same regime as you. I want to avoid recurrence and metastasis…I guess it is an aggressive regime but I don’t know any better. All was and is manageable for me but I know we are all different….I had faith that “they” would downgrade doses and change drugs if my body was not coping. Understandably in our situation we expect the worst so I took a look at the description of the side effects on this site, where 10% experience a symptom I gambled that I may be in the 90% that did not.
Our survival rates are so much better than at the turn of the century.
I had my meeting today with surgeon so he got clear margins after the re-excision. He didn’t haven’t my onco score result in front of him but thinks it was mentioned as 17%. Next step is to meet oncologist regarding chemotherapy & tablet for 5-10 years. He couldn’t say if it will definitely be ruled out because I am premenopausal, has anyone had chemotherapy with this score?? I will then have to meet another oncologist regarding radiotherapy which is a definite plan of treatment but not sure how many, can be anything between 5-15 sessions. It seems like a long road to get to hear so glad we are at the treatment plan stage
Hi @sharync, just read your post and was interested you said your tumour itself didn’t get s chemo needing score. So was it just your pleomorphic LCIS that got a high chemo score? I have that mix also. Also wondered what your ER, PR & HER2s are?
I’m confused as read that only the Invasive part of the cancer is tested for Onco Test as the In Situ has no blood supply so Chemo can’t benefit it. But maybe I’m misinformed? Anyway hope it’s all going well for you xx
Hi @anxiouslyawaiting my tumour was Pleomorphic invasive lobular 37mm. The pleomorphic Lobular cancer in situ was around or close to the tumour. So it was the pleomorphic invasive lobular that triggered the chemo. My tumour wasn’t tested as the pleomorphic invasive is aggressive therefore prompted chemo. It was highly (8) ER and PR (8) ams HER2 negative. I had a mastectomy. I’m ok - got to get a head CT now. Hope you’re doing ok? Still waiting for the results? Sx
Hi @sharync, I hope all goes well with your CT scan & you are not waiting long for results. My surgeon requested the onco test because he found pleomorphic LCIS they just measured 2mm x 3, my largest tumour was 37mm & was ILC. He advised oncologist would discuss chemotherapy with me it’s up to her to make the decision going on my onco score. He didn’t have the report so I didn’t get to see what it states, I’m presuming oncologist will shed more light n result.
Thank you so much for explaining all that @sharync . It all makes sense now. My specimen has now been sent off for the Onco Test. The In Situ lobular was pleomorphic so I hope that’s not sent! The Invasive lobular was not pleomorphic. . A lot Big than thought though at 5cm (MRI had it at 1cm, lobular is so strandy)
So 3 margins were unclear after lumpectomy at Xmas, so mastectomy next Thrs. Seeing my lovely surgeon tomorrow (the one a bit too hot for the job tbh!) to finalise what I want reconstruction wise.Find it all a bit overwhelming so think I will go flat for now I then have an option for delayed cosmeticy stuff later if I can face it. Need to just see how I feel with prosthesis. Any feedback on any kind on any of is this welcome ladies.i would actually just like a reduction on the remaining breast to make a closer symmetry to the flat one.
My CT scan results arrived today by letter. They are clear as are my lymph nodes. So am much less anxious about tomorrow’s appointment now. Just the small matter of losing a breast next Thrs to get my head round now. This time nxt wk I won’t have it all feels a bit surreal x x
@nancy7 how frustrating for you him not having your score but good that it’s back. Do you know roughly how long it took Your tumour is quite like mine ILC and PLCIS. Mine is a bit bigger but am post menopausal so who knows how it will pan out. Lots of posts on here have said Lobular doesn’t respond well to Chemo. It’s all really confusing. Let us know how you get on Nancy. Good luck xx
Like music to my ears, clear CT scan, and clear nodes What a relief for you. Try to bask in that for a little while. Your boob did a wonderful job for you containing everything
as are my lymph nodes. So am much less anxious about tomorrow’s appointment now. Just the small matter of losing a breast next Thrs to get my head round now. This time nxt wk I won’t have it 
all feels a bit surreal x x
Your tumour is quite like mine ILC and PLCIS. Mine is a bit bigger but am post menopausal so who knows how it will pan out. Lots of posts on here have said Lobular doesn’t respond well to Chemo. It’s all really confusing. Let us know how you get on Nancy. Good luck xx
What a relief for you. Try to bask in that for a little while. Your boob did a wonderful job for you containing everything