Anyway, I posted about ALDN or not. I did it and 7 of 36 nodes positive. Honestly I thought that was fine and I would move on without chemo. Today I was told regardless of decent ratio of negative to positive nodes, chemo necessar, that it’s considered stage 3.
What I don’t understand is that all of the research I have read says chemo less or not effective against lobular cancer. I’ve seen others on here with lobular also getting chemo and I questioned it in my mind. But now I’m told I should do that too difference of 20% risk. I want some evidence of that.
I don’t have any evidence, but I am just finishing chemo. My lobular was quite aggressive and questioned lobular and chemo, but I was told the benefit was to reduce the recurrence by 25% to 40%. I guess only time will tell, but the treatment itself has been do-able so far. I am then onto radiotherapy, hormone blockers and CDK inhibitors. All of these, together with surgery (which I’ve had) reduce my risk by up to 75%.
I’ve had pathology results recently too and was told there was no activity in any of the 4 lymph nodes removed. Despite this and mastectomy they are still wanting to discuss chemotherapy with me at my next appointment. I was really surprised as like you, I was prepared for radiotherapy and hormone suppressant but didn’t think chemo would be needed. I’m interested to hear what the consultant is going to say but also very interested in the experience of others too. Although I’m learning very quickly that no one’s story is exactly the same. I wish you well with the next steps of your journey xx
Thanks flojo. It’s great you are finishing that part anyway. I was similarly told approx 20% risk reduction from 50 to 30. We’re so lucky :(.
Do you know what you were given? Im being recommended Docetaxel and Cyclophosphamide.
The thing that’s weird is the online stuff about it being different for lobular. I guess if it’s advanced, like lymph nodes or whatever they think the chemo is effective
No onco type score yet. I just know there were two tumours and multiple satellites. Grade 2. But no lymph nodes. They note just said chemotherapy “to be discussed”.
Yes. I had three EC and have just finished three Docetaxel today. Everyone is different, but the EC was do-able - felt wrecked tired after the first one, but the next two were ok and didn’t feel sick at all. The first Docetaxel gave me terrible bone pain so they reduced the dose. When I questioned it with the surgeon and the oncologist, they told me it was still effective and one of the main treatments even though it was lobular. It’s tricky but I didn’t want to be in a position where I didn’t do it and regretted it later. Mine turned out to be a mix of Grade 2 and 3 and it was the 3 that swung it, along with the size of the tumour - good old lobular…not…Good luck with whatever you decide. x
Hi kaq, I was diagnosed wuth ILC in 2021 had a lumpectomy and sentinal lymph nodes removed. They found 5/6 were cancerous so advised full lymph node clearance and chemotherapy. Due to xmas surgery lists I did chemotherapy first, 4 rounds of EC and 4 paclitaxel. I also had bone pain with paclitaxel so they reduced the dise dose by 20%. I then had a full lymph node clearance.my biopsy results showed 25/26 nodes positive and still active meaning the chemo hadnt worked! Afterwards I found out that chemo doesnt always work for ILC however I still would have gone ahead with it, as it does work for some women. And my oncologist said that even though there was actice cancer in the nodes it could have worked on individual rogue cancer cells that may have been floating around my body. Its a very difficult decision trying to decide on treatments as statistics are based on averages of thousands of women and not on the individual. I coped ok with chemo side effects but I know it can be awful for others. I have also had radiotherapy and 2 years of Abemaciclib. Now on Exemestane for another 7 years. From reading hundreds of stories on various websites and forums it sometimes seems so random who gets BC, what grade, if and when it comes back. Its an individual decision on what treatments to go ehead with, as long as you feel you all the information you need go with what feels right for you. My very best wishes going forward.
I have Lobular invasive snd it was cleared with surgery but due to lymph involvement I am taking Chemo as a curative measure to mop up any , precancerous cells or DCIS which may mutate. It’s risk management and I’d like to think I’ve cleared out as much of the nasty stuff as possible to give myself a fighting chance of non-recurrence.
As my oncologist said, in my case it is entirely possible that I have no invasive cancer in my body following successful surgery and Chemo is overkill. It’s only day two. I am feeling well. The anti-sickness drugs they have given me are working and I have no ill effects. But I was warned I may feel tired Days 3 and 4 and over time as it accumulates.
Thanks. It does help. I think that is my exact situation. Everything taken out but chemo is recommended to clear out any floating cells out there. I’m leaning toward but still doing my homework and trying also to get a second opinion. It’s a bummer there is no measurable way to evaluate.
I’m glad you’re feeling well. I’d be getting docetaxel and cyclophosphamide for 4 rounds.
Thanks Galaq.
Very interesting that chemo didn’t help your lymph nodes. Part of what I’m struggling with.
I will also have radiation but not sure I’m going to take the pills beyond hormone suppessors but they they are recommended for me as well. How did you tolerate abemaciclib? I’m crossing one bridge at a time but thinking ahead all the same. Thanks much for sharing your details. It’s very helpful for me.
Thanks - very similar circumstance. And just don’t know.
I’ll let you know if I learn anything in this process. Maybe leaning toward 4 dose chemo for now (TC), I guess; just learning the chemicals
As I understand it, stage 3 is any more than 2 lymph nodes involved. Ratio doesnt come into it as different people have different amounts of lymph nodes involved. Tbf, most people who have any lymph nodes involved have chemo, so its optimistic to hope to get away with it, but I can understand why anyone would want to avoid it. Having said that I expected chemo but wasn’t offered it, so exceptions to the rule do happen. ( though mine was her 2, er+, not lobular).
Same protocol as me but I’m taking the sister paclitaxal… probably spelt it wrong which (I hear) is generally tolerated better.
If you do choose it a good piece of advice that I have been given by several parties is tell the nurses and doctors if something does not work and they will make adjustments. Do not suffer in silence. Not even low level nausea.
Try to walk every day 2 lots of 10 mins if you can, it will help with sleep and you will need that as the steroids they give you will keep you wide awake… I am aiming for 30 mins slow walking total. And best advice… drink loads… water if it doesn’t taste bad (adding squash may help) to flush the drugs out. You will know as Epirubicin turns your wee red … drink enough and the colour fades (TMI )
I’m not medical so they could have tailored D for your needs but no harm in asking. I am older than you so that may have be a consideration. Macmillan and BCN publish in depth info on websites.
I’ve heard Macmillan have a service where they can help you compose your questions.
Hope you get the peace of mind you need. You will get through it.
Hi - was diagnosed with large grade2 invasive lobular cancer, HER2+, ER+ with 2 nodes impacted (Jan ‘23). Treatment was neo-adjuvant chemo 6 cycles (docetaxel + carboplatin), plus phesgo injections. With hindsight in my case “brutal” but extremely effective. 80% of breast tissue cancerous (yep - radiology/pathology report) with 2 nodes. By surgery, 10 micro cancer spread over the 12cm plane + 2 nodes with micro. Left breast mastectomy & 19 nodes removed. Only 2 nodes proved impacted.
I had 15 cycles of radiotherapy & in total 12 phesgo jabs. Post radio, I switched to daily letrozole (7yrs) & 12 cycles of kadcyla.
At annual mammo & exam I’m cancer free & in full remission. On Predict my survival is 87% for 5yrs & 85% for 10yrs. Recurrence in lobular is lower than ductal . At age 71 I’m expecting to develop dementia before a cancer recurrence . Axx
Thanks for replying with these details. I’m glad you are cancer free.
I was a little confused about effectiveness of Neo-adjuvant chemo; it sounds like it spread more before your surgery?
But then the surgery, radiation and shots were effective?
I guess Phesgo is for her2+; I googled the drugs.
Hi kaq, I was initially devastated to hear that the chemo hadnt worked but as my Oncologist pointed out, they had been removed and the lymph nodes had done their jobs by containing the cancer cells. I then had radiotherapy to the breast area and collar bone area.
At that point I was happy to take anything they offered andso agreed to try Abemaciclib for 2 years. I started onbthe highest dose, 150mg. It caused diahorrea and my white cells dropped so I had to take a break for 2 weeks. After 3 or 4 months it was reduced to 100mg which was manageable for the remainder of my time on it. I usually had a couple of bouts of diahorrea most weeks which immodium sorted quickly. I was definitely fatigued and sometimes had to pace myself.
Its so hard to decide what treatment to take or not. I am happy with my decisions so far although sticking with aromatase inhibitors for another 7 years will be my biggest challenge. I would stop them tomorrow but my fear of recurrence overides it, at the moment!! Take care
)
. Axx