No Idea what to do
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.
Comments
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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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@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. xo0 -
hi @TKS sorry you have need to join us...
Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet.It can be a a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time.The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other
resources.https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information
or support please call 1800 500 258. The Helpline is open Monday,
Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
till 9 pm EST.0 -
this link is for the reconstruction group http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
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Hi @TKS
I was diagnosed with bilateral invasive lobular carcinoma in January this year - by the time it was discovered, I had probably had it for at least 12 months but more likely even longer. Generally, lobular is incredibly hard to detect and can be slow growing - please don't take my word for the non-aggressiveness however, that was my situation but it may not be yours - you'll get that info from your Breast Surgeon and Oncologist.
I told my breast surgeon that if it was a matter of life or death I would jump up on the operating table immediately however, I was fortunate to get the OK to delay my surgery until the end of Term 1 school holidays, which meant that I had no surgery or treatment until April 2018 and at that time, I had a double mastectomy - sentinal node clearance on both sides and a full axillary clearance in the left side. He said that in my case, it would make no difference to wait.
My post surgery pathology showed 16.5 cms of tumour in my right breast - with NO node involvement whatsoever, and 10.5 cm of tumour in my left breast with 2/4 sentinal nodes and 2/5 axillary nodes involved. Everyone agreed that there was absolutely no way that these carcinomas would have grown so big in 3 months - they had steadily been growing for well over a year and therefore I was lucky to have the time to delay my treatment to give me chance to really prepare for it, and research everything. And also during that time I did a weekend cruise
I'm also based in Sydney - happy to chat to you in private message if you're wanting advice on a particular hospital system.
Your Breast Surgeon and medical Oncologist will work together to sort out a plan for you and they'll let you know whether you are likely to be recommended to have chemo or radiation and also what type of surgery. Not everyone with lobular has a mastectomy - some have lumpectomy - your doctors will give you their recommendation. I was really happy with my medical team and was happy to take their advice.
I had all the staging scans and was very fortunate that there was no metastasis found, but I am going through Chemo treatment now to mop up anything that may have escaped detection and to give me insurance due to the node involvement and size of the cancer. After that, I'll have radiation on both sides and then hormone treatment because my tumours were both 100% receptive to ER and PR.
If you go down the mastectomy path, your reconstruction options will be largely determined by whether or not you have radiation, and your body type etc. That will be in the hands of a plastic surgeon - and if you do go down that path it would be a good idea to chat to a plastic surgeon before you have any breast surgery, so that you know what your options are likely to be.
Most major hospitals work with a multidisciplinary team that will usually involve your Breast Surgeon, your Oncologist, your Plastic Surgeon and often a Radiation Oncologist - often there will be more than one of each doctor there as well, to all give their opinions to ensure that you get the best treatment for your individual scenario.
Please ask any questions - these days before you have a concrete plan in your vision are so difficult! Once you really know what's happening, you'll feel much more in control and that makes a huge difference.
Good luck with your scan results for this afternoon - and definitely go on your family cruise!
xxxxxx
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Hi TKS. Excellent & comprehensive advice from the womyn above! I'd just like to add to @Eastmum's advice to talk to everyone before you make your decisions. If you are interested in breast reconstruction I was told the best outcomes are achieved when you reconstruct at the same time as you have your mastectomy. Of course this isn't always possible due to the kind of treatments required, but do gather as much info as you can.
Some people are OK to be flat (and fabulous!) but I was like you and could not bear the thought of having nothing in the chesticle region. It's made a big difference to me to have an immediate reconstruction. It's not always easy, heck none of this BC business is, but being comfortable with your decisions helps a great deal. We are always the best advocates for ourselves K xox 1 -
Thanks so much for all of your advice so far, I really appreciate it. My other scans so far are ok. I still have to have a CT scan tomorrow and an ultrasound next week to clip the tumour and look at the nodes and possibly clip them too. It feels a bit never ending. I'll find out more tomorrow from the oncologist. At this stage the plan is going to be to try and shrink it but that could change after other results and the onco visit.
Your reassurance and experience is great and @Eastmum I would like to take you up on private message and more info on hospitals, etc. My team work out of Concord and I'm hoping they're ok. If I end up going on the hormone therapy reduction plan and it is working then it could be 6 months before I need to decide on where to do the surgery so that could help with some planning.
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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.4 -
I really wanted to have an immediate recon at the same time as my double mastectomy but the plastic surgeon that I chose - and that I love - told me that he would not do it, if there was a strong indication that I would need radiation. His words "I'm going to do an amazing job and give you great boobs but if you have radiation on the new boobs I give you, it could compromise the result and then neither you nor I will be happy" - he was probably the most honest of all the doctors I've had.
So before I made any decisions, I went to have a consultation with the radiation oncologist - she was amazing. She looked at all my pre-op pathology and explained to me why, even before I had the post-surgery pathology, there was a very strong likelihood that I would be recommended to have radiation - even if I didn't have to have chemo (which I ultimately did because I had nodes involved but we didn't know that at the time).
After that, I accepted why I would have to wait for a recon and went for air expanders in the interim. At least that means I'm not feeling totally flat. I've pumped them up to what I'm happy with and to be honest, I'm enjoying seeing my ribcage for the first time in many years!
My plastic surgeon says that he's prepared to do a DIEP flap around 6 months after radiation finishes, or if I choose a transfer to implants, he'll do that 12 months after radiation finishes.4 -
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 xox1
