Cancer Diagnosis after Mastectomy - Treatment?

Lobular cancer is normally hormone positive so they will probably want you on hormone pills at least and maybe also radiotherapy in case any stray cells were left behind.......probably more likely as the cancer was multi focal, .but you won´t really know their strategy until you have a copy of your full pathology report.........remember you can choose to accept or reject any treatment you don´t feel happy about and you have the right to a second opinion, but do get your pathology report first. You have some time to decide on things, don´t rush yourself and wait until you feel the treatment plan is right for you, even if you don´t like it!

Good luck and welcome to the club no one wants to join

Unfortunately, while your sentinel nodes being clear is a good indication, it is not a guarantee cancer cells have not spread, either via the vascular system or the lymphatic system (just not detected in the nodes removed). Once you have an invasive cancer, that is a risk and even those with 0 positive nodes can have a distant recurrence. Mastectomy does not affect risk of distant recurrence. This is why they employ chemo or hormonal treatments like Tamoxifen. ILC is more often ER+ than not, so hormonal treatments are common. Chemo is also recommended in other cases as previous posters pointed out. Depending on where the the ILC was, they may still wish to consider radiation even though you have had a mastectomy, such as if it was close to the chest wall or they did not get clean margins.

Once your pathology is in, they will be able to discuss with you the recommended treatments, and you can make decisions from there. Make sure to ask for your recurrence risk and how each treatment may affect that to help you make decisions. 

Hi, I had P(pleomorphic)ILC with extensive LCIS left in margins after lumpectomy. No LVI, all nodes negative. The tumor was 2.5 cm and I was told that this is the reason they suggested chemo and radiation. I am also currently on Tamoxifen. My surgeon questioned the chemo but the onc said it was the size of the tumor.

So many different opinions, eh?

Michelle

Emma, That's a good way to put it....Art is abstract.....I have learned through all of this to listen to your gut...

Things will be a little clearer once you get the pathology. Make sure to update us when you get it.

I hope all is good news.  I had ILC, bilateral mastectomy nothing in my sentinel node. Er+, hr+ so aromatas therapy was suggested. No radiation, and oncotype was in the grey area so no chemo either. I had a second opinion because I want to make sure I do everything possible. They also gave me the same plan.  Hope they don't make you wait too long for the results the waiting game is the worst!! Good luck

The Dreaded Path Report:  Here's how they can get it wrong!!  This has been my experience in since February 

First Biopsy/Mammogram/Ultrasound - Path Report - 2.5cm IDC , also suspicious shadowing... Nodes Seem Clear

2nd Biopsy/Ultrasound of Suspicious Shadowing 4cm away from first tumour - Path Report - 1 cm ILC ....  Nodes Seem Clear

MX Left Breast and SNB which was CLEAR AT TIME OF SURGERY- Path Report - Tumor 1 - IDC turns to 4cm ILC, ER/PR+ HER2+ ... Tumour 2:  ILC 1.6cm ER/PR+ HER- .... Sentinal Node - 1.5cm with extracapsular extension 3mm outside node... which immediately send me back to surgery two weeks later for a ALND.... 

Second Testing of Tumor for HER2 turns from positive to negative using the SISH test...

ALND - Path Report - 1/4 - 2mm , 1mm extracapsular extension... 

As you can see, they do get it wrong, hoping this won't be your case... But I cant shake the feeling that if I knew from the start the I would have made different choices ...  

EmmaW -

It is true that they don't know the whole picture until after the post surgery path report.  But in my case, the news was far better than expected.  I had more tumors that previous reports suggested, which doesn't surprise me with ILC.  But the doctors originally thought I would be a stage IIa or IIb, possibly a III.  My final stage turned out to be Ia.  That wasn't even on our radar, so I was very pleased.  My treatment plan included BMX and now hormone therapy w/follow up with the oncologist every six months to do blood work.  That's it, except for self exams to check for local recurrence along the incision.

Good luck...don't board the train until before it gets to the platform.

The biopsy report is not the final path report. Biopsy is done to determine if a finding is malignant or benign and if treatment is needed. The surgical path report is what they use to determine your treatment plan, once a malignancy is found. It's not always the same. My biopsy was grade 3 tumor, surgical was grade 2. I am not an expert, but I don't think it's that uncommon for them to differ. Good luck! Maybe your MO or BS can explain it better!

Johanne76Joined: May 2014Posts: 4

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4 hours ago Johanne76 wrote:

Hi Ladies:

I initially posted this on the stage IV with the question blog. It was suggested to me that I post this in the ILC category.  

I was just dxd with ILC, age 68 ER+ HR - HEU-2. Grade 1.   13mm and another 9mm ( waiting on results from the MRI biopsy done last week). I have been having indigestion after my meals with a bit if burping. I was wondering if anyone could tell me the symptoms they were having when they were dxd with stomach mets. My path report from my first biopsy shows no lymphatic invasion.

It's all so frightening and I really hate to bother you with this issue. I have tried searching the internet for clues but the info I found sounded like abdominal pain with regerutation. I mentioned it to my doctor but they discount this perhaps because I was just diagnosed. Any input would be helpful.  My surgery is scheduled for June 24th but could change if there is another tumor detected by the MRI. Then it could  possibly be a mastectomy. 

Thank you.

Johanne

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