invasive lobular carcinoma

Another ILC/LCIS with stage 1, grade 2, but it wasn't the primary for me.  The IDC/DCIS was primary (larger of the two tumors)

ejnys,

 Hello, and I hope you are doing well.  I just wanted to say, the fact that you had esophageal cancer before your lobular cancer really caught my attention. I'm not sure if this will be of any interest to you, or if you are already aware of the following...

My family has been saturated with gastric, esophageal and lobular breast cancer.  Last year, after yet another diagnosis of gastric and esophageal cancer my family was approached with the possibility that this might be genetic. My aunt was tested and was found to have a mutation in the CDH1 gene which is now known to increase one's risk of diffuse gastric, esophageal and lobular breast cancer(among a few others). The odds, if you are a woman and found to have the gene, of getting diffuse gastric cancer are 83%,  The risk of lobular breast cancer is 39%.

Is there any family history of cancer?

 I do apologize if I am repeating information or if this information is unwanted... I do know that 1.5 years ago I had no idea that this even existed... and now I feel as though I can arm my children with information and recieve the appropriate screening and treatment if need be. I get my results in 2 days... my fingers are crossed that I don't have to worry about this... but I think I am prepared if I do.

Take care,

Tanya

Moonsan - loving your attitude - you are so right - one thing at a time is definetly best way, otherwise we would go completely doo-lally and I'm already half way there. Trying sooooo hard to be strong for kids sake. Talk to you again soon. Tottey xxxxxxx

Thanks Sherri - I'm trying to calm down - really hard though.  I see you are 4 years down the line - very encouraging to me. Do you mind telling me what treatment you have had/having.   This waiting bit is hard - just wanna get on with it now.  Since this diagnosis my house has become a pig sty, I look a wreck and I am getting on my own nerves now.  Gonna try hard today to tidy up, and sort myself out a bit . Cause this diagnosis came when I was already at a very low ebb, I think it's knocked me off my feet. Gotta fight back though, and talking to you ladies really helps and inspires me.

Gitane - know what you mean - what the bloody hell is normal anyway !! Had really bad night, weird dreams, allsorts.  Had MRI yesterday as there was a cancellation and they offered it to me, so a tiny step further up the ladder but of course now I'm worrying what that will show as I know that US doesn't always show true size of lump. Is it bigger, is there more, is it in lymph nodes.  You know I'm actually starting to get on my own nerves now - so must be getting on everyone else's. I am 10 year survivor of malignant melanoma - has my luck run out or can I bea this B****** twice? It took my lovely hubby away. Doctors keep telling me not to compare with his as this is totally different type and much more treatable. Still a lot of good in my life though and I want to see a bit more of it. Guess taking things I step and I day at time is only way. Life is so precious and | suppose I should see everyday as a blessing - I think!

Tottey, have you had BRCA testing done? Some melanomas are BRCA2 driven, as are some breast cancers. Your situation may have been random chance, but it probably would be a good idea to be tested, if you haven't been already.

ejnys~

I was diagnosed May 2007 at the age of 35 with ILC stage2B Grade 3. Patholigist and onc both agreed very aggresive tumor. Sent and axil nodes both positive. I tried a Lumpectomy at first but as the path reports came in and a positive BRCA1 genetic test, bi-lateral mast was the best choice. I have had set back after set back but I keep smiling. I am still in the reconstruction process due to TWO MRSA staph infections that put me in the hospital twice each time for seven days. I have good days and bad days but life does go on trust me

My cancer changed from the breast to the lymph node.  It went to being ILC HER-, and it was er+ in the breast only.  So I know it is possible for it to take on a life of its own for no  reason.

Hiya ~ try not to freak, altho I have been freaking so much I have found some aids, shopping Target for one LOL ~ I also have Stage 2 or Grade 2 and it was a big tumor.

Hi, Unique. I love Target therapy, too, LOL.

As far as chemo goes, I was offered TACx6 by my regular onc, and ACx4 by two second opinion docs. I had negative nodes, though, and opted for CAFx6, which is AC plus 5-FU, and is a regimine that is sort of middle of the road. My regular onc did say recently that if she had to prescribe my chemo over again, she would prescribe TCx4 instead based on new data. There's been a lot of talk in the onc communitity recently on whether adriamycin is worth the side effects, as some researchers think it only helps a small subset of women. The jury is still out on that, however. What does your onc think of TC?

Phylly8, you'd have to have a bilateral mast to reduce the risk of a third primary on the unaffected side. It sounds like your new primary is in the same breast as the first primary? If so, I assume you're having a mast on the affected side? 

Have they done a breast MRI on you? 

PET scans are no big deal--just be sure and follow the imaging center's directions of no exercise for 24 hours before the scan--exercise can affect the scan results b/c of the glucose uptake in the muscles.

As far as rads go, you might want to post over on the Radiation board to see if anyone else is having a similar radiation treatment as what your rad onc suggested. 

On the subject of MRI, I'm in the staging process, and the MRI produced an estimate of size which seems incredible.  The mammogram just showed a suspicious area of density, the sonogram found the ILC, which was confirmed by a biopsy, and estimated it at at about a centimeter, but the MRI indicated it was a whopping 6.6 cm long.  US often underestimates size, on the average by about 20%, and MRI can overestimate about 10 % of the time, but usually not by much. Assuming that the US estimate is 20% off, rhat still leaves a gap of 5+ cm between the estimates, which can make a huge difference in deciding on a method of treatment.

 Has anyone else had this experience?

 Seabee

Seabee, unfortunately it is not at all uncommon for a lobular cancer to go totally undetected or inaccurately sized using mammogram or ultrasound. As Gitane says MRI is the most accurate method for detecting the true size of a lobular tumor.

The day my 5cm lobular cancer was found on palpation, the mammogram I had just 5 minutes earlier said everything was "fine".  The subsequent MRI clearly showed the lobular tumor plus a PET/CT scan indicated extensive nodal involvement, none of which was picked up by mammogram or ultrasound for me.

Regarding your method of treatment based on final tumor size, it is true that typically neo-adjuvant chemo may be given to reduce tumor size prior to surgery when the tumor is large.  However, I would have a discussion with your onc regarding the studies that show lobular may not be as responsive to chemo as other breast cancer types.  If they have already biopsied your tumor and can determine your hormonal status and grade and the potential for positive nodes, that will help direct which treatments should come first.

When my surgeon did my original excisional biopsy she was not expecting a large tumor but in fact removed 4 cm and subsequent scans revealed more tumor remained.  So rather than doing neo-adjuvant chemo first, I opted for the bilateral mastectomy and then followed up with chemo and rads.

I read that Lobular in situ (opposed to regular Lobular) was more likely to "mirror" in the other breast.

Gitane,

Thanks for the response.

This is my first personal experience, though I clearly remember my mother's encounter with BC in 1947. She lived to be 82, however. ;-)                                      

I'm E+, P and Her-. No ductal involvement detected on CAT, MRI, or biopsy report. Apparently not multifocal. Nothing in other breast (yet). But my mother was a one-sider, also in the left breast.  Unfortunately, she was left-handed, and all they did then was radical mastectomies and rads, so she permanently lost some function in her left arm.

I'm encouraged by stilllrusty's experience. MRI is the most sensitive test and shows things that mammo and US miss, but it isn't infallible.  For one thing, it can't distinguish between cancer and benign masses. I don't think we'll know what this thing actually looks like until it comes out.

If it's really as big as MRI indicates and is E+, we might try to shrink it with hormone treatment. I too would like to know if anyone has had positive (or negative) experience with this approach.