Hi, I'm only newly diagnosed and not sure which way to go. I have a second meeting with my breast surgeon today and I'll see the oncologist for the first time tomorrow. I have a 6cm Invasive Lobular Carcinoma, whatever that means. Since finding out basically all I've had is more tests to see if things have spread anywhere and I'll get some of those results this afternoon. Because of the size I was thinking I might try to shrink it first but maybe I should just get everything removed. I'm fairly small in that region so losing this much will mean I lose it all. I've read so many stories and everyone seems so brave about having the whole lot removed but I just feel like I'll be missing a piece of me. Hopefully I can make some decisions soon.I also have a family cruise planned in 2 weeks that I do not want to miss. I have 7 year old twins that have been looking forward to it for too long so I don't want to do anything until after the holiday. I hope that isn't too silly. It took them months to find the problem, surely another 10 days is ok. I also don't know what to do about reconstruction or any of that at this stage. I know I would prefer to wait and do something later and get the best of the best to do it. Any recommendations there would be great. I'm based in Sydney.Thanks in advance for any advice on anything.

Hi TKS, You probably have some more information by now but your doctors should be able to answer your questions about delays, treatment and reconstruction. I can only give you my experience. I was diagnosed with ILC on 5 December after a routine screening mammogram. According to my surgeon, it was amazing that it was picked up. I had CT scans to determine whether there was anything elsewhere and the tests say not. My tumour was assumed to be approx. 2.5cm with no node involvement and the biopsy showed that it was not particularly aggressive (Ki67 <10%). I told the surgeon that I had some events at the end of the school year that I really wanted to go to and he was okay with that so I was scheduled in for a partial and sentinel node biopsy on 21 December to get in before Christmas. Unfortunately, the path report from that came back with a tumour size of 4.5cm, no clear margins and 3 nodes involved. I had a full mastectomy (I'm not that well-endowed, either) and axillary dissection on 8 January. I always knew that radiation would be on the cards but the size and node involvement meant that I would need chemo. I have had 4 AC treatments and this morning I had No 7 of 12 Paclitaxol. Rads will be next and then hormone therapy. My surgeon (who is quite well-known and respected for his work) said that he would not consider reconstruction for at least 12 months. Whether I go down that path, I don't know as yet.ILC is a nasty beast as it hides so well. My guess is that unless your cancer is aggressive, you will probably get the okay to delay a couple of weeks but that is only a guess as it will depend on your individual diagnosis. In the end, your twins will want you around more than they want a cruise. I should mention that a relative was diagnosed with ILC a couple of weeks after me. Due to Christmas and the public system, she didn't have her first surgery until April, so as you can see, everyone can be different.Good luck with your appointments and decision making and let us know how you're going. We all remember how overwhelming the first few weeks are.

Hi @TKSSorry you have found yourself in this situation, no one really wants to be here.I've also had invasive lobular carcinoma, first diagnosed when I was 43 in 2006 and most recently a recurrence in 2016. Treatment plans vary according to your individual circumstances, so it's impossible to predict what will be recommended for you. You will have to listen to your medical team, but I would be surprised if you can't go on your holiday since you are not going to be away for very long. Lobular carcinoma can be very difficult to detect, which is why many of us have quite large tumours by the time anyone figures out exactly what is going on. In my case it took months so I can understand you feeling that a few more days are not going to matter. Still, it does depend on many things, particularly the results of the next round of tests, but you should discuss that option first with your surgeon and then with your oncologist if you have the chance. They will give you the best advice they can, but your situation is not that unusual--there is never a good time to be diagnosed and many of us had plans we didn't want to delay, which requires a bit of juggling and negotiation.In my case, because I opted for a double mastectomy and immediate reconstruction, I was advised to have chemo first after I'd had the lump removed. That is quite common. Choosing what to do regarding reconstruction is complicated. I preferred to do the whole lot at once and, as I opted for a 'simpler' expander/implant procedure, it was reasonable easy to organise. I just wanted everything out of the way as soon as possible. I also had limited options due to my circumstances at the time (sole parent living in the country) and felt that more complicated procedures would involve too much time off and far too much toing and froing to Melbourne. If you live in Sydney, you will have wider choices.One of the other ladies will, no doubt, pop up some links to resources that may help you decide what to do (I'm hopeless at doing anything like that on my tablet)Anyway, good luck, Ask as many questions as you like. we know what it is like. Marg xx

@Eastmum Thanks again, that is great advice. I've been told that radiation is very likely as well. I'm actually feeling a lot better after seeing my surgeon again today and after getting such great information from here. It is so lovely to have a support place like this.

So good to hear you're feeling a bit better now. Info and a plan of attack always helps. We pretty much all struggle with a lack of control when going through BC. Understanding what, how and when is much better that the gaping unknown. K xox

@TKS Oh dear, I didn't realise you had a cruise coming up in 2 weeks. You must remember that biopsies paint only part of the picture. Until you are cut open sizing and staging are estimations only. I'm wondering what scans you have had.Mine was 10cms spread across 2 tumours in my right breast (AA cup) but unlike yours which is invasive lobular, mine was invasive ductal, locally advanced. Have you had an MRI, PET scan or CT scan?When I heard the word 'invasive' I was in a big dam hurry to get things started.That's the thing about breast cancer. It happens when you least expect it.I'm so sorry that it happened to you and I know that others will pipe in with much better advice than me.Good luck to you. xo

No Idea what to do | BCNA Online Network

Zoffiel
Member
7 years ago
Hi @TKS
Sorry you have found yourself in this situation, no one really wants to be here.
I've also had invasive lobular carcinoma, first diagnosed when I was 43 in 2006 and most recently a recurrence in 2016.
Treatment plans vary according to your individual circumstances, so it's impossible to predict what will be recommended for you.
You will have to listen to your medical team, but I would be surprised if you can't go on your holiday since you are not going to be away for very long. Lobular carcinoma can be very difficult to detect, which is why many of us have quite large tumours by the time anyone figures out exactly what is going on. In my case it took months so I can understand you feeling that a few more days are not going to matter. Still, it does depend on many things, particularly the results of the next round of tests, but you should discuss that option first with your surgeon and then with your oncologist if you have the chance. They will give you the best advice they can, but your situation is not that unusual--there is never a good time to be diagnosed and many of us had plans we didn't want to delay, which requires a bit of juggling and negotiation.
In my case, because I opted for a double mastectomy and immediate reconstruction, I was advised to have chemo first after I'd had the lump removed. That is quite common.
Choosing what to do regarding reconstruction is complicated. I preferred to do the whole lot at once and, as I opted for a 'simpler' expander/implant procedure, it was reasonable easy to organise. I just wanted everything out of the way as soon as possible. I also had limited options due to my circumstances at the time (sole parent living in the country) and felt that more complicated procedures would involve too much time off and far too much toing and froing to Melbourne. If you live in Sydney, you will have wider choices.
One of the other ladies will, no doubt, pop up some links to resources that may help you decide what to do (I'm hopeless at doing anything like that on my tablet)
Anyway, good luck, Ask as many questions as you like. we know what it is like. Marg xx

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