Hi I have been scanning the forum for several weeks now. I have Lobular as well and have found it difficult to find any info on. So these threads have been great. I go for a mastectomy on 25th March. I am finding the waiting really hard! I had my milk ducts removed in January and the biopsy came back with Lobular grade1 it was a complete shock as previous mammograms and blood taken from nipple were all ok. I was sent for MRI scan which showed something on other side but a later ultra sound did’nt. I have been told they will do another MRI in 4 months to keep an eye on it. I know BC is very personal but everyone seems to get different answers and treatment. I havent been told yet of exact treatment afterwards as I assume results from op will determine this.(I am I right in thinking this)
Hi Tedoris,
Sorry you have had to hear the bad news :(. I wish you all the best for your surgery on the 25th - I can understand why you are finding the waiting hard - once we know it has to be done we just want to get on with it asap. You are right in thiking the results from the op will determine your treatment. It will ascertain whether it is hormone negative or positive usually expressed as ER+/- (eostrogen)and PR +/- (progesterone), and they will also check to see if it is HER2. These will determine what drugs you will need. Usually tamoxifen for ER/PR+ and herceptin for HER2. You may need chemo as well but this seems to be such an individual thing. It is good that they are going to check the other breast again in 4 mths 'cos lobular often occurs in the other breast as well. Good luck.
Dawn
xx
Another lobular here. DX last July. Neo adjuvant chemo (FEC + Taxol) then mx and ax clearance Feb. Got a shock when I heard 16 nodes were affected (though not all “badly”, some had “slight evidence” of involvement). Hmm, still a nasty surprise, as surgeon had reckoned only 2-3 would be involved.
Anyway, I have now completed 3 weeks rads, have started Tamoxifen and I feel very well, apart from the flushes ! Have started taking sage capsules but let’s wait to see how those work.
I’m sorry you’re facing a mx but really for many of us, getting through chemo is the bigger ordeal.
Joined the lobular club 3feb this year, had mx and flap recon on the 15thfeb, two rumours,4 and 3cm and spread into ducts, too. Waiting for chemotherapy app now. Mine was detected by ultrasound, was told treatment still with chemotherapy and tamoxifen even though no spread to lymph nodes. Still struggling with it all really! Mine felt like hard tissue the other one I didn’t know until after the ultrasound.
Hello Tina 45,
Sorry you have to go through chemo, it’s not nice, but does it’s job, I think it’s the hardest part of all the treatments,but doable, it was my worst nightmare when they advised me to have it, but I managed it and you will to. just look after yourself, eat well, drink lot’s of water and get plenty of rest,
Initially my right breast reduced in size their was no visible or feel able lump, that’s when I took myself to the doc’s. I had 2cm spread tumour. and one lymph node out of six infected.
I am now nearly three weeks post chemo and will also start tamoxifen 24th March, with 4 wks radiotherapy
The chemo regime will hopefully fly by for you.
wishing you all the best with your treatment
Ann x
katinthemiddle - I was diagnosed with invasive lobular bc last August. Mine was Stage 1, Grade 2, ER/PR+. They said I also had a very small amount of ductal as well. I found a lump myself and feel I was lucky to do so, as I understand it is difficult to pick up from a mammogram. Like others, this bothers me as far as the future goes.
I had a core biopsy first and then they gave me an MRI scan, after which I had another biopsy, as they though they had found a second lump. Fortunately, that one was clear.
I had a WLE/SNB in September and radiotherapy in December/January. I am on Letrozole. I alternate between seeing the oncologist and surgeon every 4 months for the first year - after that, I don’t know.
Ann x
I am always surprised how different the approach is for everyone. I have not been advised what happens after all the treatment has finished. All that has been said is “we will keep a close eye on you”.
Suppose one step at the time and chemo next.
Thank you Ann for your encouragement. I am always amazed by everyone capacity to support others despite their own struggle! Much appreciated. Tinaxxxx
Hi Ann
Thanks for your info. I have since been told that they won’t do any scans (unless there are problems). I’m guessing that I’ll be having to keep an eye on myself, although I’m hoping that I’ll be alternating between onc and surgeon like I did first time round.
Take care everyone
Love Krissy x
I have been diagnosed 4 weeks ago with a 6 cm tumour Invasive Lobular Cancer. Aspiration biopsy in one lymph node was negative, but that may or may not be too indicative. Due to the size of the tumour I will most likely need radiation therapy as well as chemo and hormonal therapy.
I saw the surgeon yesterday and she suggested a unilateral mastectomy. I opted for a bilateral mastectomy. I just could not cope with having one breast!!! I find it easier to have none.
We also talked about reconstruction and she was fairly negative about it. She advised that the chances of success are not that high because of the radiation therapy which may be detrimental to the reconstruction. Also surgery may have to be delayed because plastic surgeons are very busy. Potential complications may also delay chemotherapy. But she said that it is my decision and that it does not matter much if the procedures are delayed by several weeks. I find this hard to believe…
I just don’t know what to do. Have you had this dilemma? Have you had reconstruction followed by radiation? Or delayed reconstruction or none at all?
Also I am ER+ and PR+ and I will definitely need hormonal therapy. That really scares me as I heard that there are difficult adverse effects. Have you had ny experience, good or bad, with Tamoxifen or Aromatase Inhibitors?
It is still unclear to me after having read a lot on the internet what the benefits of these hormonal drugs are after double mastectomy. Do you know?
I would be grateful for any advice/experience, positive or negative.
Hi Imul
I was diagnosed with Lobular ( ER and PR positive) in Oct last year, my sentinal node biopsy showed my nodes to be clear. My MRI showed my tumour to be about 6.5cms but when it was removed it was actually ‘only’ 4.9cms. My breast surgeon did kind of give me a choice re WLI or mastectomy but since my boobs are/were not very big it did sound as though I would be pretty mutilated so I opted for mastectomy with immediate reconstruction. I was told that if I needed radiotherapy it could damage the recon but he still thought it was worth doing… as it turned out my oncologist did not recommend radiotherapy. I had a further test that looked at the my chance of recurrence as my surgeon felt that this was low and the results of that were good …so no chemotherapy.
So basically I had a mastectomy with immediate reconstruction in Nov, I had a breast reduction/lift to my healthy breast in April and am now pretty balanced!
I am also on Tamoxifen which I have to say i have had no problems with but I think I’m lucky in that respect.
PLEASE do not rush into having a bilateral mastectomy. PLEASE speak to your breast care nurse about your options or call the Breast cancer care helpline
Hope I haven’t confused you
I know it is so scary but you will get through this x
Hi Imul
Seems strange posting on this thread as I posted on it just before my op last year. I had a 8cm lobular and opted for a mastectomy with immediate recon. I had chemo and radio. All I would say is that my recon has shrunk due to radio and I feel I was’nt warned enough about this before. I don’t like what I have at the moment but hopefully some more surgery will improve it. It’s very hard to make the decisions and no one ever knows which is the right one. Just do what you feel is right for you.
Thinking of you x
Hi, difficult decisions to make! I had the immediate LD flap, too and really at the time did realise what a commitment reconstruction would turn out to be for me. I am now having my second lipofill after nipple recon & two sessions of tattooing and a planned reduction and uplift on the other side. I have similar feelings to tedoris really. I wasn’t offered a bilateral mx and had a MRI and mammogram for my first annual check up. Maybe a call to the helpline could help. Good luck! X
queen of retail therapy - You say “I had a further test that looked at the my chance of recurrence as my surgeon felt that this was low”. What test was this? Do you mean they tested your sentinel lymph node?
Ann x
Hi Ann,
I think the test being referred to is Adjuvant online which basically takes in all factors, age, weight, type & size of cancer, location, grade etc & then forcasts 10yrs with or without different types of treatment, so for example as i am Er & Pr +, grade 3 invasive ductal, no lymph node involvement or vascular invasion, 9 mm tumour, surgery with just tamoxifen was 84% if they added rads 89% & if chemo added it took it to 94%, most Oncs will ask you if you want to know this info before giving you the printout.
Sarah.xx
P.s should add i took printout home as had to decide if i went for chemo as Onc said he didnt feel it was necessary but i did go for chemo in the end as thought the extra 5 % was worth it (for me)
Hi Ann
I did have a sentinel node biopsy but the further (private) test I spoke of was OncoDX which is a test that is done on samples from the tumour. It has to be sent to the States and is a series of over 20 genetic tests that can predict the chances of recurrence… mine was low.
BUT this test is not for everyone… my surgeon and oncologist both felt that my chances of recurrence were low and this test confirmed their opinions. It is really only for borderline cases and it helped me make up my mind re chemo. It is obviously not a guarantee
X
i was diognosed with lobular left breast in 2006,ive had chemo first to try shrink the tumour and then mastectomy followed by further chemo to mop up any stray cells as had 16 lymph nodes removed 12 of which were infected .i had radiation too and have been on aromatose inhibitors since with alendronic acid to help my bones as i have developed osteoporosis since treatment .i was not offered full mastectomy for both breasts as surgeon didnt want to remove (healthy )! breast!i have regular checkups every 6 mnths now and recently after a scare had ultrasound on an armpit lump which turned out to be lymphodemia fliud something else i developed after surgery .
yes i have painful joints as im now on femara,and the hot sweats but im still here 5 yrs later and try to enjoy every day .
please discuss all levels of treatment with your surgeon .everyone is differant and reacts differantly to treatments given ,but im living proof that treatments work ! .
HI again
I totally agree with Aroma… everyone is different and everyone’s cancer has to be treated individually. You have to be well informed and be guided by those that know best. I am confident that the decisions I made with the help of my surgeon and oncologist were the right ones for me.
Does it mean I have no fears for the future, of course not! But there are no guarantees with anything so fingers and toes crossed
QRT x
really glad I went on to this thread, found out a lot. I had mastectomy with immediate reconstruction on 21 June. I hadnt really looked at site until last Friday when I got my results. My cancer was lobular, 17mm in size and they found a minute amount in one of the 2 lodes they removed, so I haved to have chemo followed by radiotherapy or further surgery for the nodes. At my consulation with my surgeon I did ask about damahe to the implant if I had radiotherapy because I’d read that it could. She said not in all cases, she’d got lots of ladies who’d had radiotherapy without damaging the implant. At the moment I;'m veerinbg towards radiotherapy as think more surgery in my armpit will restrict my arm movement but don’t have to decide that yet as chemo first - waiting to see oncologist. Think this is going to be the most difficult part.
They have told me that when treatment finished I will have mammograms every 18months but I’m going to ask about u/s as well. MRI scan has never been mentioned. But I do have every confidence in my surgeon and all BCC staff - they are amazing. I’ve gone on a bit - sorry
Best wishes to all
Katieb
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