ILC Breast Cancer

I don't sorry but you'll get help here they're great

Hi Anriocht - firstly very sorry to hear that you have had to join us here but we are a nice bunch of people.

I too have what you have invasive lobular however more or less the same as yourself only starting out.

I am sure there will be many people on here that will be able to help.

Dee

Hi Guys

I am so sorry that you are both only starting out on the path to being cancer free, and believe me you will get through it. I have just completed my treatment for IDC which had spread to my lymph nodes. I had two tumours, one 5cm and one 1 cm. I had 6 rounds of chemo followed by a mastectomy and immediate reconstruction and then 32 rads and one year on Herceptin. I just finished the Herceptin. It is so much to take in so my advice is to just break it down into little parts and use them as goals to reach. This is what I did and I found that the time passed quickly. It is not easy but the support you get from family,friends, hospital staff and other patients really motivates you to get through it. Chemo is doable, just make sure you follow all the advice you are given by the nurses and take all the medication they offer you. If you are at all feeling unwell, contact the hospital and they will try to wave their magic wand to make it go away. I dont know where you are located but I found that attending a support group was the best thing ever as it is only people who are going through the same process that can truly understand. I attend the Gary Kelly Cancer Support Centre in Drogheda , but I know there are many support groups throughout the country. The ICS have a nurse that you can call if you ever feel uneasy about anything. I am now back on my feet, shopping for clothes and watching my hair grow long again. I go to the gym and walk every day. I am probably fitter now than I was before Breast Cancer. I hope this gives you some peace of mind and if you want to chat more I am here.
Sending you love and light

Sinéad

Oh shinners that posting was a joy to read and I can envisage myself next year shopping, washing my hair again, going on holidays ooooh I can't wait.

Mary

Anriocht
Sorry you've joined the club but hang on in there, you'll get through it. I was diagnosed with lobular breast cancer in Jan2011, tumour was about 8cm. Don't get too hung up on the size of it, lobular ones tend to be larger. They put me on tamoxifen for 3 months with a bid to shrink it, and it did (by a bit). Then I had eight rounds of chemo (which shrunk it further) followed by two lumpectomies and eventual masctectomy (Jan 2012, didn't get clear margins and to be honest I think mastectomy was always going to be on the cards), and finally radiotherapy, which ended in March. It's been a long road but you get through it with the help of family, friends and websites like this (and of course the medical geniuses!) Am back on taxmoxifen now and awaiting date for reconstruction. I'm back at work, hair has grown back, I'm swimming, minding my kids, getting on with it all. Still have bad days but then everyone does. Anything you need to know, just send a message. It can be hard to talk to people on the 'outside', I still find that I find loads of answers on sites like these. Take care of yourself. X

HI Kazoo - thanks for that post and thanks for saying about not getting hung up on sizes for lobular cancer - as I was thinking mine was a whopper at 7cm - wow you had a long way didnt you. Seem to be quite similar to me without the Tamofixen I am doing chemo first to try and shrink it then the op defo mascetomy.

On the reconstruction how does one go about it, do they recommend a plastic surgeon, do you do your own homework about it - it seems to be one area I dont seem to have a clue about. Also I presume all this is covered under the public system.

I am sure I should know this clear margins - is this after they do the lumpectomy and they found there was still cancer there? Seems to be so much I still dont know.

THanks again

Anriocht, sorry you had to join us here but it's a great support. I too was diagnosed with lobular cancer, my tumour was 2.5cm. I had a lumpectomy and a sentinal node biopsey, thats where they dye the lymph nodes and take out the first few to check them. Thankfully mine were clear. I had the Oncotype DX test done on the tumour and that showed a low score - 11, because of that I didn't need to have chemo. I had 25 rounds of radiotherapy, and will be on tamoxifen for the next 5 years. All going okay so far with that. I finished the radiotherapy 6 weeks ago but am still getting fatigued from it and still have a sore boob and underarm, I was told that that can take months to heal. Please God, all will go well with you.

Pardon me what is lobular mean? Last post from fighter made me think it was different thought you had a mastectomy with it.

http://www.breastcancer.org/symptoms/types/ilc. This explains lobular breast cancer.

Dee

Ask your Breast Care team to talk to plastics before surgery in that way they see you before the "change" occurs and you are on their radar. I attended a talk by the plastics at St Vincents on reconstruction earlier this year where they discussed the options available. It is done in the private and public hospital. I will be in the public system - Colin Morrison. Will email you the presentation notes on reconstruction they sent out for you to check it out

D

Dee, the margins were checked after my first lumpectomy and were not clear - ie cancer still there - then again after the second lumpectomy and the same result. They also check again for margins after the masctectomy to check it's all gone.
Re the reconstruction, yes it's public but you have to wait like everything else in this country . I'm sure it varies county to county as well, I'm in Cork. I've been on the waiting list since last April, when I finished my radiotherapy and found out today - big drum roll - that I will be getting my new boob in January, all going well. Am so unbelievably happy.. . The breast cancer nurses should put you in touch with the plastic surgeon and then they take it from there. Best of luck.

Hi Dee,

Earlier you asked about "clear margins".

After surgery, the breast tissue removed is tested. One of the things they look at is the location of any tumours and cancer cells found with respect to the outside surface of the sample. If the outside 10 mm of the sample is clear they are generally happy that enough tissue was removed and that no further surgery is needed. This is what they mean by a clear margin. In other words a clear margin means that no cancer was found close to the surface of the sample.

All the best

Kath

Thank you ALL so much for your wonderful supporting posts.

It seems there won't be any efforts made to shrink my tumour, it is straight in for mastectomy. Had sentinel node biopsy earlier today, sent home and must have been drugged to the hilt, as I can't sleep now it seems to be all wearing off, hence the crazy time for posting. Not too uncomfortable though, which is great.

I know I shouldn't get hung up on size, but it's hard not to, kind of annoyed with myself as well, how did I not notice that size of tumour growing in my breast. (I have big ones, so I suppose that didn't help).

I must admit that I am finding the information I am getting is somewhat vague, I will certainly be asking to see an image of my MRI so that I can visualise tumour and also hope to make sense of why a mastectomy is necessary.

Finding it difficult to keep my imagination in tow as well, it is getting wild sometimes and I am imagining all sorts. I hope once an action plan is in place and I see light at the end of the tunnel, that I will get on that road to recovery with all guns blazing!

Again, thank you all so much for your responses, it is such a huge help to get all your experiences and advices.

No doubt we will have many more chats yet to come.

Thanks again,
Myra.