Triple Negative Lobular Breast Cancer

Hi all
New to this site I was diagnosed with Triple Negative Lobular Breast Cancer on 16 October 08 has anyone else had the same diagnosis? MRI scan showed it is in other areas of my left breast as well as the main tumour and lymph nodes underarm.

My treatment plan is 4 FEC 4 TAX, mx, then rads I have had 4 FEC and have the first TAX on 20 Feb anyone like to be a chemo buddy?

pp
x

hi purpleprincess

i have invasive ductal cancer, dont really understand your daignosis but i will be starting chemo in a few weeks. i just had the lump and lymph nodes removed, the cancer was grade 3 but it wasnt in the lymph nodes nor had it gotten into the blood vessels. i had my surgery just over three weeks ago,

anyway just to let you know that you are not on your own. there are lots of people on here and there is sure to be someone in the same situation as you. i am here if you want to talk, i found it great to have someone to talk to, i have made some great friends and we all try to keep each others spirits up. stay strong
martina

Hi Martina,
I have Invasive lobular cancer which is 15-20% of breast cancer cases and am triple negative which is also 15-20% of breast cancers it means that I tested negative to hormones and HER 2 so am unable to have anything like Herceptin to help me. I am trying to stay positive but it is difficult at times!

Do you know what chemo you are going to be having?

pp
x

hi purpleprincess

i had my lump and lymph nodes out nearly 3 weeks ago. no nodes infected, hasnt got into the blood vessels. it is ER negative but havent had the results of the HER test yet to see if i need herceptin. got a phone call today to tell me that my chemo starts next tues.

about you, are you having any surgery, or have you had it already. have you seen the oncologist yet or do you know when your treatment starts. i have a slight advantage because my daughter had chemo a couple of years ago when she was 23. i am sort of aware how it works, of course you will be worried and scared at times, do you have support at home. i know that even though i have plenty of support i find it great talking to people on here that know exactly what i am going through. you are welcome to talk to me anytime you can even send me a private message if there are things you dont want to put on the public forum. i may not have all the answers but i will offer you any support i can.if you have any questions i will answer them as honestly as i can. i am thinking of you.

take care
martina

Hi ladies. I was diagnosed with invasive lobular cancer on 12 Dec. I’m told its very oestrogen receptive, but I don’t know about any others. After a couple of biopsies and an mri, I finally found out that there is only one lump - hooray. I’m having a lumpectomy and lymph node sampling on Thursday. Does lobular cancer make it more likely you’ll have to have chemo, because at the moment, the doc is only talking rads, but it seems that these things can change.

sal sent you a pm.
martina

hi purpleprincess

how are you doing, havent heard from you for a while. please keep in touch. talking always helps and we’re here to help.
martina

Hi Martina,
Thanks for caring. I have a liver scan tomorrow which I am a bit anxious about. I had one 3 mths ago which was clear and they said then that they would repeat it in 3 months so I don’t know if this is just routine but any test always worries me. As to treatment I have had 4 FEC and will have 4 TAX first one on 20 Feb, then mastectomy, and rads,seems such a long road.

I have not received your pm yet perhaps it takes a while to appear!!

What chemo are you having?

pp
x

Hi Salopets
I don’t think lobular cancer makes it any more likely that you will have chemo. I am having chemo first as my cancer has spread to the lymph nodes under my arm and above my collar bone.
Good luck with your surgery tomorrow

pp
x

pp

i have sent you another pm hope you get this one,

find the summer in you
martina

Hi Everyone

I was diagnosed with invasive loblular cancer in Oct 07 following a routine mammagramme- no lump no indications the radiographer picked it up as a change in tissue from the previous check up - all rather scary.

At first they thought I would just need rads but following a WLE they recommended chemo - 6 FEC - no nodes were involved but the tumour was 4 cms - at first thought it was 1.5 cm. Very hormone receptive. Just posting this to help others to see I’ve come through ok - had my mammagramme in September and they said all looked ok so I have to try not to think too much about it (hard though). I was concerned as lobular ‘hides’ and there is a greater chance of it coming in the other breast. I voiced my concerns to the surgeon and onc who said that it was found this time there is no reason it should not be found again. This does make sense but you can’t help wondering if it is more to do with funding as lobular cancer is more easily detected with an MRI scan - I did have one at diagnosis. However I also think it is very much down to who is looking at the scans/mammagrammes anyway. Hey Ho though so far so good - just take one step at a time and prepare yourself for possible different outcomes for the treatment.

Take care all of you and good luck for your ‘journey’ I’m thinking of you all.

Val