Hello ladies, I hope someone is out there and can respond with their experience. I was diagnosed with lobular invasive in January. The ultrasound showed approx. 20mm size. The following MRI showed it to be 30mm with nodes and other breast clear. So all seemed very manegable. So there was great and justfied hope to purely work with Letrazole. Surgery with immediate reconstruction was 24th March and I have just been today to get my final results. They are still provisional, as the print outs had not come through. However, I have now been told (provisionally) that the cancer was 11cm in size. I cannot understand how the MRI did not show this up as it is nearly 4 x the size the scan showed. Nodes ( provisionally) clear, which according to my nurse is a small miracle. So treatment will become more challenging. I have read that sometimes the MRI struggles with dense breast tissue and my breasts are quite petite. But considering the apparent true size of the cancer - has anyone of you had a similar experience??? It would be really helpful if you could share it, as I am now not sure whether I can trust that the other breast is clear.
Hi Sue H-S,
Can’t really help much but didn’t want to read and run so hopefully someone more knowledgeable will be along soon. My clinical results and ultrasound results didn’t match (clinical was 2-3 cms, ultrasound was 1cm) so they did an MRI which agreed with the ultrasound version but as I was coming round from the surgery I was told that it had turned out to be more complex than they had thought so they had taken more tissue than expected, i.e. more than ultrasound and MRI had shown, so I guess the clinical results (surgeon with good hands!) was right all along
xx
Sharon
Sorry to hear your news Sue. My ultrasound had lump measuring 36mm I had 60mm removed via lumpectomy and didn’t get clear margins so had mastectomy with implant reconstruction 23rd March and get my pathology results tomorrow. Often it isn’t till the surgery that they get the full picture. Good news if no node involvement. I am worried about my results x
Thanks Sue. Yes I went from surgeon saying lumpectomy then radiotherapy to skin saving mastectomy with chemo and radiotherapy to follow. All still feels unreal and as if I am in a parallel universe. Just hope I get good results tomorrow then move on re treatment . Xx
Hi Sue, I have had a similar experience and am a little further down the line than you are at present. I was diagnosed last February with lobular cancer, I didn’t take in too much of the details of MRI results at the time and have not been able to bring myself to read pathology report/ consultant letters etc. I was initially treated with Letrozole and clinically and on repeat MRI the tumour had shrunk. I had a mastectomy in September with node clearance and was shocked that pathology report showed a larger area of tumour - 13cm - than MRI had found, also 11 out of 18 nodes affected. It was explained to me at the time that lobular cancer spreads in the breast tissue like a spiders web, so although 13cm it was not solid but a measure of area of affected cells. I don’t think I have explained that very well - I have just fully put my trust in medical team to give me the most appropriate treatment and they seem optimistic that this is treatable. I have had 2 clear CT scans and just completed chemotherapy, radiotherapy due to start in next couple of weeks.
We all deal with things in our own way, for me too much information would not be helpful, I am comfortable going with treatment plan recommended and not questioning things like risk of recurrence etc, I will deal with things as they happen.
Good luck with your treatment.
Hi Sue, as I haven’t even started chemo yet (hopefully end of next week) & mastectomy will be at the end of that I can’t really help but just wanted to try & offer some words of support like you have done for me! And yes I also feel like I’m living in a different world to everybody else around me and so desperately want to crawl back into theirs! Lots of love xxxxxxx
Sue, it seems despite all the high tech equipment that you really just don’t know for certain until the surgeon gets in there. I had a some microcalcifications on mammogram that only showed dcis and a small foci of idc on the fourth biopsy, whole area was thought to be 15mm on ultrasound (lump not palpable) and clear axilla. If turned out to be 30mm of idc with 4 mm of dcis and with sentinal node metastasis, no down the chemo route, big shock.
On the subject of eyebrows I had semi permanent eyebrow tattoo done and am delighted with the result, well recommend it x
Hi Sue, of course you can add me as a friend. Not sure how that works but let me know! I was told the MRI measured my tumours as 28mm, 9mm & 5mm along with a few nodules which is why they are doing the mastectomy but I won’t be able to have reconstruction till a while after radiotherapy. To me the lump I can feel, feels at least 4cm but apparently the actual tumour can be smaller & the rest can be inflammation but i won’t hold my breath until results of surgery after hearing your story! Glad to be having all the treatment though as think it’s good to get as much as you can! Had the results of my CT scan which said they couldn’t see any obvious spread of cancer but I did have low grade sclerosis on my back but this wasn’t necessarily related to the cancer. My lymph node was still enlarge so they are treating this as suspicious hence the chemo. I saw those stick on eyebrows, they look really good. I’m lucky that I can work from home so may just go for a long fringed wig but I am going to try the cold capping.
Helly, my friend had her eyebrows tattooed on just because hers were a bit thin and they looked amazing but she said it was really painful. How was it for you?? xxx
Hi Sue, I can’t seem to find the bit to add you as a friend, I think this might be because I’m using my phone and not via any app (although not sure there is one & if there is, I wouldn’t have enough storage to add it to my crappy iPhone anyway!). Can you add me instead please?! I had a rethink on the cold cap last night, not sure I want to spend any longer than necessary in hospital having my treatment & also not sure I can bear the clumps of it still coming out, as I believe it still does even if it’s only patches. Think I will do what you’re planning & have it cut short all over but not brave enough to clipper it! Just trying to decide when would be the best to do this. It seems that your hair will starting coming out usually between days 10-15 after treatment. Don’t know whether to have it cut before first treatment or wait & have it done around day 7 although not sure I’ll feel like a hair cut at this point (I’m lucky though as my sister is a hairdresser!) and also when she goes to cut it, will it starting coming out in her hands which will freak her out! Also I’m aware you scalp starts to get a bit sore before it starts to fall out. Am tempted about the semi perm eyebrows but still worried about the pain! Like you said Sue, i know they’ll probably be worse pain to come throughout the process but it’s the self inflicted bit that I’m concerned about! xxxx
Hello ladies,
hope you don’t mind me butting in. I was diagnosed back in November 2013 with invasive lobular cancer. I was told that my lump was 15mm on MRI, but when it was removed, it turned out to be 37mm. It really freaked me out for a start, so I researched it. Found that it’s normal for lobular to be much larger than scans show due to the fact that single cell chains form from the visible lump, rather like a spiders web. MRI is unable to pick these single cells up, so surgeons normally take quite a large margin when lobular cancer is diagnosed. I had originally been told that I would only require rads, but oncology insisted that they saw me to recommend chemo. I did go down the chemo route (which I found totally manageable) and this was followed by 15 rounds of rads along with 3 boosters tagged on at the end. Finished active treatment back in September 2014, and have been well since, so there is light at the end of that long dark tunnel ? So stay strong ladies and I hope you all have minimal side effects, if any at all. Take care Ann x x
Hi Sue,
Yip, my nodes were clear, BUT they did find a couple of individual rogue cancer cells in one of the two sentinel nodes removed. This is still reported as node clear and had no bearing on my treatment plan.
The day I was diagnosed, I met a lovely lady called Angie who had three nodes affected. We are both doing absolutely fine and meet up regularly for coffee and a chat. You will make good friends along the way, and of course this site is invaluable. Sharing your experiences, hopes and fears is so helpful as you go through treatment and I thoroughly recommend you stay on this web site. Perhaps you can find someone in your area to meet up with? I was “lucky” in that I met Angie the day we were both diagnosed, and also had a work colleague (who is now a trusted friend) diagnosed three weeks after me. Between the three of us, we kept each other sane and used each other as a sounding board.
Hope this was of some use.
Ann x x
One last thing Sue. I see that you’re hoping to work through your chemo. I only work part time, but did manage to work all the way through (bar 2 days) chemo by juggling days round. But I must stress that I was given FEC chemo only. My two friends who were on FEC-T didn’t manage to work, but I do think that everyone is different as I’ve read posts from people on this site who worked through it. If you can work from home, that would be ideal. All the best Ann x x
Sue sorry to hear about your shock, but you sound like me … Get all the info, decide what you want & try & make the most of what you can do to help yourself. I found changing my diet & meditating calmed me down & gave me some control back after submitting to the system for surgery, chemotherapy & rads. Part of mine was occult on mammo & u/s, so ended up having to have a second op to get the 2nd bit out. It could not be seen with the naked eye either & only showed up in pathology. There was another lady on Sept chemo who was the same. Physically you could probably work ok on FEC, assuming no complications, but I would have needed days 1-4 off. Mentally you may not be able to cope as well as usual either. Steroid/chemo brain can be quite noticeable for a few days & you might not be quite as competent if you have a high powered job. I couldn’t even add up & my concentration & memory were quite poor for example. You should ask for weekly Paclitaxel, if you have to have FEC-T (seems quite common). I think you could work through that, but a lot of people seem to be laid up with 3 weekly T days 4-10. Can you work from home or vary your hours to avoid peak rush hour? There is also the issue of the low immunity period on FEC, which is the 2nd week, I have a feeling it’s straight after on T. I did the weeklies & the dip in immunity is much less. Mind you if you do have to have chemo, it should be over the summer, so not the worst for bugs. Don’t panic, but just saying keep in mind you might need to work flexibly for the first week. I was fine weeks 2 & 3. All the best with it all. xx