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Lobular cancer invasive

Moulton_Lady
Member

Re: Lobular cancer invasive

Hello Ladies,
I was diagnosed with ILC in November 2012 and underwent mastectomy and axillary node clearance - 23 of the 24 nodes were positive. I had quite a problem with a seroma that needed regular draining but that is now much better but still causing a bit of a problem. I am receiving FEC-Taxotere chemo and had my second dose on Tuesday. So far it is going very well and side efffects are minimal. I have a PICC line in my arm, so no more needles! It was quite a problem to have the line inserted (it took four attempts) but despite the soreness and bruising that took almost three weeks to clear, I am really pleased that I have it. Chemo will be followed by radiotherapy to the chest wall and gland drainage areas because my cancer is high risk because of the extent of the lymph node involvement.
Like everyone else I have experienced all the awful emotions that this can chuck at us. At 63, it was not the loss of my breast, but just the fact that I had cancer, and because it was lobular, harder to detect so my tumor was 46mm. I kept telling people that I was going to be really positive, but inwardly didn't really feel it - now I do. I am pleased that there is now an ILC thread, and going forward can share in similar, if not the same, issues. I would also be happy to answer any questions if I can help.
Kind regards, Christine
janemod
Member

Re: Lobular cancer invasive

Dear Deb, What is your story? X
janemod
Member

Re: Lobular cancer invasive

Morning Deb, It is a scary time, boobs are sensitive, but I have to say that the surgery on my boob was not too bad in that department, I was more uncomfortable with the surgery for the lymph nodes under the arm. My friends who have been through this have said surgery is the easy part. I do have blue dye near my nipple, which will fade in time, I just tell my husband, he has his own little blue tit, you have to laugh at some of this 😉 When I go on Friday, they will tell me if I have clear margins round the cancer and if any lymph nodes are involved, if I am clear, its radiation for me, if not, I am still on this roller coaster.
Debcully
Member

Re: Lobular cancer invasive

Feel sick just thinking about the surgery. jane do you have to have chemo or don't you know yet? and did your boob look ok? X
janemod
Member

Re: Lobular cancer invasive

Hi Deb, glad you've read my message, it was meant for you. I feel humbled as my lump was only 6mm in size and towards the back of my left breast, the plan was to go in, under my nipple to remove it, and take the lymph nodes out at the side under my arm. I was very worried about my nipple, but when I woke up, change of plan and every thing had gone out from under my arm, probably why I am so sore, personal hygiene has been a real problem, espeically as I have had to come off HRT, hot flushes are awful. When my daughter helps me change the dressing, she has mention the word spicey, not funny ha ha, little minx. As to your question about photos, diagrams are bad enough to look at, let alone photos. Thank you for your good wishes for Friday, probably the most important day of my life to date.
:-) Jane xx
Debcully
Member

Re: Lobular cancer invasive

Hi once again thanks for your comments. Well it's becoming blatantly obvious that no two people are the same. Has anybody had a wle with removal of the nipple and areola? And still nobody is raving about their 'new boobs'.
I have replied to a few people on here via personal message but don't think they have received them cos I'm sure would have had at least one message back.
Janemod pls can you tell me where was ur lump (ie did u have nipple off?) did u see any photos of how it would look beforehand and was it a shock when u saw yourself after surgery? that's a few people who have said they are really sore..ouch you poor things.
hope Friday goes well for you. Let me know won't you?
im due for my MRI on Monday.......still seems like I'm talking about somebody else tho :(((((((x
janemod
Member

Re: Lobular cancer invasive

Dear Debcully,
I received a letter after having a routine mammogram, inviting me back for a second one. I thought I probably would be in the majority and scoot off free, why wouldn't I. I don't smoke and barely drink, I cook all what I call proper meals, played netball all my life, go spinning once a week, go jogging with friends, breast fed both my children till they nearly walked (early walkers) what a shock. I had that day. So several mammograms, a couple of ultra sounds, and a biopsy later, they asked me to return the following week for the results, to be told the devastating news, that I have invasive lubular cancer. What a shock! Just before christmas I had a MRI. I have to say, that I have had nothing but the best care possible by the breast care team at the hospital I attend, not one thing was to much trouble, and they would reassure me the whole time, what would happen, what I needed to do. Also my lovely husband has been fantastic, supporting me, specially at night when I can get a bit wobbly. I have recently have had a lumpectomy and lymph nodes removed. I am very sore, but it is to be expected, must try and rest more to help the healing process.. I go friday for the results of the surgery, so fingers crossed, what they have found or not found. I hope yours will be straight forward Deb. Take care from Janemod xx
smc78
Member

Re: Lobular cancer invasive

Hi there I was diagnosed with Invasive Lobular Breast Cancer in june 2012. I had chemo 1st (3xFec and 3xT) due to having 2 tumours one of which was over 5 and half cm. I was told from the start i would probably need a mx and that i wouldnt be allowed immediate reconstruction due to needing radiotherapy afterwards. Chemo shrank my tumours really well but when i had surgery in December they said there were still cancer cells dotted about in the breast tissue so having the mx was definately the right decision. I had a left side mx with full node clearance and no recon so am living with 1 boob for the time being. There were cancer cells in 5 of the 14 nodes they took out. I start 25 sessions of radiotherapy to my chest and nodes are next week so i'm still in the middle of my treatment. I'm happy to answer any questions you may have.
Sian x
Jo_BCC
Member

Re: Lobular cancer invasive

Posted on behalf of new user Jane - Jo, Facilitator

Hi Deb, I have been diagnosed with invasive lobular cancer just before Christmas. It was quite small, I had a lumpectomy and lymph nodes removed on 22nd of January, my arm is sore, but the breast nurse said I probably have not rested properly. Just waiting for results again.

Jo_BCC
Member

Re: Lobular cancer invasive

Posted on behalf of new user Jane - Jo, Facilitator

Hi there, I have been diagnosed with invasive lubular cancer just before christmas, I had surgery on the 22nd January and am waiting for the results. I am very sore, the breast nurse said that I probably have done too much.

DJ007
Member

Re: Lobular cancer invasive

Hi

To answer your questions "DJ007 does that mean you had a full mastectomy? At the moment I am looking at a lumpectomy ( think that's what it is called) but because of where it is I have to lose the nipple and areola. if you did have a full mastectomy why was this and are you pleased with you're reconstruction. Did they do your other boob to match?"

Yes - I had to have a full mx (mastectomy) because my lump was large (5.5cm x 2.5 cm), in the centre of my breast quite close to the chest wall and it also turned out to be multi-focal - there were other bits of cancer in there as well.

I had an immediate LD (latissmus dorsi) flap recon + implant. This is where they use some tissue from your back, wrapped around an implant, to create the breast shape. They removed my nipple, but I kept all the rest of the sking, and so the scarring on my recon boob is minimal.

I didn't have absolutely massive boobs and they were reasonably perky and so the plastic surgeon (who took over after the breast surgeon had done the mx and node clearance) didn't have to do anything to my 'good boob'. He's done a really good job of matching and, while it will never look and feel exactly like a 'real' one. In clothes - even low cut tops, no one would know.

Please don't be scared of chemo. It's unpleasant and it's boring, but it is 'doable' - I was one of the people you don't hear as much from - I was back at work 6 weeks after my op and I kept working alomost normally for two weeks out of three on chemo. I took more time off during rads, the travelling got to me and I got very tired, but I was back at work full time six weeks after they finished.

All the technical terms are confusing - here are some links to some info you might find useful.
http://www.breastcancercare.org.uk/community/forums/list-useful-words-terms
http://www.breastcancercare.org.uk/community/forums/abbreviations-acronyms-used-forum
http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-cancer/types-primary-breast-cancer/invasive-lobular-breast-cancer

Hope all this helps - once you start on your treatment plan you will start to feel better.

Take care and good luck
Dx

Lilac51
Member

Re: Lobular cancer invasive

Hi. I was diagnosed ILC in my left breast in October 2011, 4 out of 8 nodes involved. I chose to have a mx because of family history and also because the lump was quite large and behind the nipple, but I was offered a lumpectomy. This was followed by 4 x FEC, 4 x Tax and 15 sessions of radiotherapy. I notice Bethy says she always has a breast MRI as well as a mammogram at annual checks; this is important because after I'd had a right risk-reducing mx (again by choice) in November 2012 they found a tumour there which had eluded a mammogram done only 2 weeks earlier. Lobular tumours can be tricky, as my oncologist said. I'm feeling very well now, getting used to hormone treatment, completely flat chested of course but I'm going to be discussing reconstruction with the surgeon quite soon. All the best with your treatment. Pauline xx

Debcully
Member

Re: Lobular cancer invasive

Wow thank you for all your replies it really does help.
i really do need to get an understanding of all these abbreviations lol
most of you seem to have had an mx!! ( I will get the hang of this) as it stands at the moment and depending on MRI scan I've been told I will be looking at a WLE. Did any of you have a choice in what you had and are any of you more than impressed with your new boobs?.
Whats the chemo like. Is it as bad as everyone says? I am hoping to avoid this at the moment but again it depends on the results.
What is it like when you see yourself for the first time after surgery?
poor wonkey...10 ops OMG
and lucky amysmum not needing an uplift
i
AmysMum
Member

Re: Lobular cancer invasive

I had ILC, diagnosed September 2011. I have mx with immediate recon, nodes cleared, chemo and then rads. Then onto Tamoxifen, becuase my tumour was Oestrogen+.
I had the MX, rather than a WLE as my lump was quite large and (as my surgeon said) my breast quite small, so I would have needed something to even me up whatever. My recon pretty well matches the other side, but I can have an uplift if/when the other one starts to droop. If I had a small lump and large breast, my surgeon would have suggested a WLE.
Sue

Bethy
Member

Re: Lobular cancer invasive

Hi
I was diagnosed in Sept 2008 with Invasive Lobular Grade 2 and had a lumpectomy, full axillary clearance (SNB showed 3 nodes involved),chemo x6 and then 28 rads.
The only difference to me is that at my annual check I always have a breast MRI as well as a mammogram.
Best of luck Bethy x

faj123
Member

Re: Lobular cancer invasive

Hi Debcully. had invasive lobular cancer diagnosed February 2012. had mastectemomy with immediate LD recon and then chemo. Now on tamoxifen.Would be happy to answer any questions if you want to private message me.
take care
Frances.
Leelaloo
Member

Re: Lobular cancer invasive

Hi Deb,
I was diagnosed with invasive lobular grade 3 cancer on 30 October 2012. I had WLE (lumpectomy and SNB) in November. I am now having chemo (FEC T). I have my second chemo on Wednesday. I am not sure what you want to know as to be honest I dont know all that much about lobular cancer either. Anyway if I can help I certainly will. Hope you okay and sending you big hugs .
Lee X
Jo_BCC
Member

Re: Lobular cancer invasive

Hi debcully,

Welcome to the BCC discussion forums, as you see you get lots of brilliant support from the many informed users of this site.

'Bumped so it doesn't get missed' means that a user has just brought your post back to the top of the list so that other users will see it before it drops down the list. Please don't be afraid to ask what ever you need to on these forums, there's always someone around to help, plus our helpline team are only a free phone call away 0808 800 6000 with a good listening ear.

Take care,

Jo, Facilitator

Debcully
Member

Re: Lobular cancer invasive

Hi there thanks for your replies. No idea what 'bumped so it doesn't get missed means' lol.
DJ007 does that mean you had a full mastectomy? At the moment I am looking at a lumpectomy ( think that's what it is called) but because of where it is I have to lose the nipple and areola. if you did have a full mastectomy why was this and are you pleased with you're reconstruction. Did they do your other boob to match?
thanks
Deb
wonkey
Member

Re: Lobular cancer invasive

hi debcully
i had invasive lobular ceacinoma,like the lady above i had all the treatment chemo.surgery.radiotherapy.my oncologist told me to write off a whole year and it took a whole year...some.times it was horrific,i laughted i cried but my husband and my friends would never let me feel sorry formyself....stay strong you lovely lady you can and will beat this,,, your breast nurses will become your best friends i had 10 surgerys from start to finish so the ward staff knew me so well you will meet some amazing people on your bc journey
good luck please let me know how you getting on sweeti
lots of love and support
kerry xxxxxx
DJ007
Member

Re: Lobular cancer invasive

Hi Debcully

Not sure if it's recent enough for you, but I was dx with ILC just over two years ago.

Is there anything specific you want to know or are worried about? I had to have the 'full monty' of treatment - mx and node clearance (also had immediate recon), chemo, rads and now on tamoxifen, so may be able to help.

Dx

toriaconey
Member

Re: Lobular cancer invasive

bumped so it doesn't get missed
Debcully
Member

Lobular cancer invasive

Hi there just been diagnosed with lobular invasive cancer and would really like to speak with someone who has recently/still in the process of treatment.