Anyone Else Diagnosed with Invasive Lobular Cancer?

Thanks Dany

Glad you didn't have the full clearance and that you find laser treatment works for the lymphedema :)

With my diagnosis, I took myself off to the GP after noticing my nipple inverted and some skin tethering. I had an ultrasound and then core biopsy in two areas of my right breast and from there the diagnosis was made. No real actual lump could be felt on examination although my breast did feel different in shape. The area of the tumour was said to be 7cm x 6cm but to date I have yet to have seen any of my pathology reports. I am going for physio tomorrow so I will ask for this information then.

Thanks for all your help

Anne

Hi Anne,

I had a sentinel node biopsy and they removed two nodes.  Both had about 2.5mm of ILC in them.  They did not feel I needed an ancillary clearance as they felt the radiation would do the rest of the work if there was further spread.  I had another different node biopsied as it was enlarged and it came out clear.  I wonder if you do have a KI 67 rating, it would be on your pathology reports if you had surgery.   I find that laser treatment is great for the lymphedema.  How was yours found?  Mine was by accident... I had a cyst like Krooz.... had had a mammogram and breast check only 6 months prior for the cyst.... went back for another check up and they found it... on the other side.  

I hope all goes well for you.  - Dany

Hi Jane

Gosh you certainly went through it  - both lobular and ductal carcinoma - must have been a huge shock at the time..

Your treatment and Lobular Carcinoma diagnosis/symptoms sound very similar to mine - I too was told that my tumour was large 7 cm x 6 cm and again a lump was not easily felt but my breast did feel tubular if that makes sense? - like a large sausage when pressed.

I too also noticed my nipple was inverted and some skin tethering at the bottom of the affected breast,. 

Have had  6 sessions of TAC chemo, followed by double mastectomies with immediate reconstruction and about to have a second surgery on Friday this week (axillary node level 1 and 2 clearance) after cancer was detected post op on the sentinel node biopsy. Then I will go onto having 25 sessions of radiotherapy.

Just started the Tamoxifen and seems to be going ok now after a few initial side effects (headaches, nausea) but all manageable.

Thanks so much for sharing your story.

Anne

xo

 

 

Hi There!

Thanks for sharing your story. You certainly were very lucky to have had the benefit of such a vigilant surgeon.

Great news too about the other breast..

Anne :)

 

Hi Dany

Thank you for your informative comments. I have just read up about the KI 67 and now understand what it means and why your course of treatment involved the chemo/radiotherapy and then the Letrozole.

The KI 67 was not offered to me so maybe it is not a common test offered here in WA?

As you mentioned getting a slight lymphedema I was wondering if you had axillary node clearance or just the chemo/radiotherapy?? 

I have to have an axillary clearance at the end of this week and I am nervous about developing lymphedema and also the pain and discomfort in my arm which I had after the sentinel node biopsy at the time of my mastectomies..I couldn't stand even the sensation of my bra rubbing against my arm for about three weeks...

I am now on hormonal therapy too - Tamoxifen and like you have had side effects (nausea, headaches) but it is getting better and now do-able as you say :)

Good luck with your next scan

Thanks

Anne

 

Hi Mishie

Sorry to hear about your Chemo complications. I hated it also and towards the end felt very weak and almost collapsed a couple of times. Good luck with your last round of chemo -  I have soon forgotten about how horrible it was now I am nearly three months post chemo :)

Not sure what Ki index means I have not heard of that - but I gather it is some way of detecting your likelihood of a recurrence maybe?? Wish I could have had something like that offered to me. I was just told I needed chemo, surgery and then radiation - no statistics - just this is what you need....

All the best for successful ongoing treatment and hormonal therapy.

 

Anne :)

Hello

Glad you had nothing detected in the lymph nodes and all other scans were clear. 

Good luck with your surgery to the other breast - I had the same prophylactic surgery in my other breast at the same time because of changes which had occurred since 2011. After biopsy the lesions were found to be benign but I was told could lead to cancer..

 

Unfortunately cancer has been detected cancer in my sentinel node so I have to have surgery again at the end of this week - never mind I am staying positive...

Thanks

Anne

 

Hi Julie

So very glad to hear that and wow nothing since 1987 that is reassuring. 

Thanks so much for your feedback :)

 

Anne

Hi Piak

Thanks so much for your feedback. So glad yours was caught early so you didn't have to go through Chemotherapy and your sentinel node was clear.

Good luck with your follow up

Anne

:)

Hi Anne, I was diagnosed in Feb 2012 with 2 invasive lobular carcinomas (both hormone positive) as well as an invasive ductal carcinoma that was HER2 positive. I had one lymph node test positive as well.

The lobular tumours were quite widespread (over 6cm on the largest) but not easily felt or fully seen on the original ultrasound. My first clue that something was wrong was that my nipple became inverted. After an initial lumpectomy I ended up having a mastectomy when clear margins couldn't be achieved and went on to have chemo, Herceptin and radiotherapy and am now on Tamoxifen which is my best defence against a recurrence. Jane xx