I would just like some help and opinions girls. I was diagnosed with invasive lobular BC in Nov 2011, I initially had a WLE, but later had to have MTX as margins not clear. I have since had x6 FEC-T.
I know that invasive lobular is more likely to return as another primary BC in other boob, or as a met. I have been told about a 17% chance in next 10yrs, anyone else told similar?
However I saw plastic surgeon this week and he asked me if I would like the other breast removed prophylactically and reconstructed. Until now all the docs I have met were against this. Because I am down to weight if I have just a reconstruction on the side that had BC, he could just do it ( small one!) with a large DIEP flap, but if he does a LD flap or both boobs I will need to have bilateral implants as well as flaps.
What have other peeps done- I am so confused - help please
I am struggling to reply to this… I can only get into the text box by clicking B (bold)!?! Decisions like this can only be made by you. Sometimes other people’s opinions just serve to muddy the waters. Somewhere inside you know what you want to do. Do that. Good luck. xx
Sorry about the uncertaintiy you have - it’s hard when you think you know the way forward then they give you more options. I can’t advise what to do but in my case due to genetics I had the second masectomy which was due to happen at same time as double diep. Have you spoken to BCN, I find that the surgeons give you the basics and the options but the nurses can take you through it in a bit mroe detail and discuss pros and cons, I also found it helpful to meet someone who had the options I was interested in done to get their view.Good Luck with your decision.
Lisa x
Hi Ruth,
I have actually just posted about my experiences - in the ‘surgery,’ section I think. Although having just logged on, I have found it hard to find with the new forum layout - AND I NEW IT WAS THERE! Lol.
I can only say what was right for me. I opted for a risk reducing mx at the same time as my LD delayed recon. I felt that my ‘good’ side was a bit of a ‘time bomb.’ But in addition to that, with the type of recon I chose, involving an implant, I felt that would get a better cosmetic result having both done. I had visions of, especially as time went on, having one very pert, firm breast, and one looking like a spaniels ear!
I am very pleased with the results, but it is not the right thing for everyone. You will face a longer procedure and greater recovery time, and also perhaps mourn the loss of your ‘good’ breast as much as your did with your original surgery. You may also lose the other nipple, or lose sensation in it - and this is another considerstion. I don’t know - only you can decide. My advice would be to ask as many questions as possible, and look at photos of the results you can expect from both ops.
Good luck with whatever you decide xx
TSR- did you have a diep or were both sides done with a LD flap?
Fi x
Hi,
Ruth´s post has worried me a bit as I understood ILC was less likely to spread elsewhere, although more likely to appear in the other breast…does anyone have any info or links please?
Sascha- ILC is slow to spread to other areas of the body, but it can do and vascular spread more common
Hi Ruth,
Thanks for reply - my path report said no evidence of lympho or vascular involvement - only the lymph nodes, so presumably I really need to worry about my other breast and ovaries?
I have seen 17% and 25% mentioned in various places for occurrence in other breast…HAving said that when they talk about percentages once you get over 50 they say you have a 1 in 5 chance of getting BC so the chance of a spread to remaining breast is not really different to normal women never diagnosed with it, or am I being overly optimistic?
Once you have a BC diagnosis, your risk of having a new primary is higher than the age adjusted population cohort. With a lobular history the risk increases, I have seen studies citing as much as 26%, as with regards to metastatic spread that very much depends on your personal pathology, just before Xmas Ann, who was diagnosed stage 1 grade 1 ILC in 2009 (no lymph nodes affected) was dx with bone mets, and recently with liver spread. The more you can do to reduce your risk the better really.
http://breast-cancer-research.com/content/pdf/bcr767.pdf
Any invasive BC dx has the possibility to spread to distant organs, ILC has has a slightly different preference for distant sites like ovary and gastrointestinal&peritoneum, the process why some do spread and some don’t is not as yet fully understood but my onc said the treatment between ILC or IDC is not the deciding factor but the pathological results count.
Thanks Tina,
I was Grade 2 Stage 2, but surgeon phoned me last week, as I wrote to him, and advised me against prophylactic MTx. Putting it bluntly he said my onc and he thought my chances of getting metastatic disease was higher than getting BC in other breast and prophylactic MTX would not improve my life expectancy, so going for just reconstruction I think!!
This is all too depressing, have to say I do wonder whether having lymph nodes involved really is a bad thing as it could mean just that they are working well and doing their job…
I am Stage 3A but grade 1, and have decided I want to insist on having my ovaries removed (already had a hysterectomy) as it is so difficult to detect ovarian cancer and keeping them must surely increase the risk of spread to peritoneum…has anyone else done this?
A very interesting article Tina, thank you, makes me even more determined to fight to have my ovaries removed…
Ruth- I had LD, but, on the ‘good’ side, they just put in the same size implant, using my chest wall muscle and the extra skin (I was a DD, now a C). Don’t know if that is relevant now!
I have had my ovaries removed on the advise of my Onc. My decision to have the risk-reducing mx was mine. I was very clear when I raised the idea with the surgeon, that I knew in terms of my ‘mortality’ it was whether I go on to develop secondries. But I still felt that it was a bit of a time bomb strapped to my chest, and as I said, cosmetically I felt it would give a better matched result as well, with the recon I had chosen.
I think the important thing is, that we are all allowed to be involved in the choices that are right for us in terms of our treatment, rather than just being ‘told’ what is going to happen. It is impossible to ‘move on’ otherwise.
Hi ‘Ruth’ Whilst I don’t have ILC, mine is IDC, I have chosen to have a prophylactic mx on my health breast. I am not in a high risk group for reoccurance, apart from being female, 54, and having bc. My reasons for this are two fold.
Firstly, I want to reduce the risk, as much as possible, of having another primary bc. And secondly, I want to have a well matched pair of boobs to live happily with for the rest of my life. I discussed this at length with my Psycologist saying it sounded vain and shallow, but he argued that it was natural to want a strong and positive body image.
I don’t just want to look good in a bra - I want to look good naked.
There are no easy answers, listen to your head, but also listen to your heart and your fears. Which decision would help you sleep best at night?
We will talk more about this, it’s such a huge decision.