Searching for people with Invasive Lobular BC

Anacortes Girl and Robin,

I went to SCCA and received a "normal results" letter a week or so getting a call from the radiologist informing me the path results showed ILC. And when I tried to set up appts with the BS, etc., as the radiologist told me, the scheduler wouldn't do it, saying that my condition was something that didn't need the BS and Onc team. I actually got assigned a wonderful BS and the RN who worked with her got things scheduled pronto after I called her (after being blocked by the scheduler).

But then the Onc I got assigned to just forgot about me. Don't call us; we'll call you after surgery. So I called the Onc's office but they would not make an appt for me. Why? Because the Onc hadn't ordered my Oncotype test (No one had mentioned the Oncotype to me before.)  This test could have been ordered 6 weeks earlier, right after my surgery. And now she was booking several weeks out for appts.

Long story short, I was allowed, after a lot of hassle by SCCA, to change Oncs. But then the 2nd one told me my breast density per mammogram was "normal," when the radiologist's report said "extremely (more than 75%) dense." Also she wouldn't even authorize Zofran in quantity enough for me to use every day during chemo, when I was daily nauseous, even though Zofran had gone generic. 

I'd had enough at this point, and switched to another organization and so far my Onc has been good. But except for my BS I do not recommend SCCA after what I went through. 

Hi- I am going to jump in here. I was diagnosed with ILC in Aug. 2010 due to a gut feeling something was not right, I had a lumpectomy. The surgeon wanted to aspirate the area, I wanted to rule it out and have it out. Good thing I did. The dr. said he wouldn't of found it aspirating. It was the tissue beneath the lump that was ILC. I had a bm in sept with reconstruction. I am waiting for my 3rd stage surgery. Meanwhile, I have developed pain in my armpit and a few spot areas down from my underarm. Also, above my breast, right below the collarbone. They areas hurt on their own but also when I press on them.Almost like a bad bruise. It is on the same side as my ILC. Went to oncologist yesterday, I never have felt GOOD about him. Just a feeling, but yesterday confirmed it! He was so laxed in his exam and said it had nothing to do w/ my Armidex-DAH I told him I KNOW- These are areas of concern that have developed over 3-4 weeks slowly and I wanted him to check it.  He said no obvious lumps. I said ILC is different. He dismissed it. Can anyone please tell me if I am over-reacting. If I am-ok. I just want peace of mine

I did happen to mention to him that the mamo and us did not pick up my ILC. It was the lumpectomy that found it and he just dismissed it. He said to keep an eye out if lumps form!!! Again, I mentioned how ILC is diff. I wish he dealt with breast cancer patients ONLY!

I am going to see if my Ins. will ok for me to change onco dr.s

Nurse-ann and Luan- Thank-you for your advise. I feel better about changing dr's. Sometimes I think I over react but it was pain that brought me to this disease and pain is NOT normal.

I'm not sure if I can find breast oncologist in my area but It is on my list to do right now!!

I was diagnosed with Invasive Lobular in 2008. I went in for my routine mammogram and they found what they thought were benign calcifications and to wait for a repeat mammogram in 6 months.. I am in the medical profession so I told them that I would be a total neurotic mess if I waited 6 months. They finally agreed to do a sterostatic biopsy which found LCIS. From this finding, I was referred to a breast surgeon,who wanted to do a lumpectomy. The final pathology from the lumpectomy showed er+,P+,Her- invasive lobular carcinoma. Due to the slow mitotic rate and size chemo was not ordered but radiation was. I opted for a mastectomy rather than radiation and my surgeon recommended a bilateral due to lobular's contralateral recurrence rates.

Pasha, thank you for the sterostatic biopsy lead.  My tumours (2) same breast were "IDC with lobular features" whatever that means....

MTKS, I did not have mx, but a lumpectomy with nodes removal, so I would not know about the pain you are experiencing.  However, 1 1/2 year post surgery, if and whenever I lift something too heavy (that means a few cans in a grocery bag) on that side, everything seems to swell up and I will have dull pain in the breast and armpits.  So for me no lifting as much as I can help it.  I told same to my cousin who has had bilateral mx as she was also complaining of pain having lifted wood of all things and she had not made the connection.  I hope this helps 

Oh, and I might have to find me a new onco too.  It is very hard with our system in Cnda.  You don't get a choice, you are "assigned" to a particular doctor.  When one wants to change, it's a real big hassle, plus they all know each other in the trade.  Good luck with finding yourself an understanding and generous doctor.  It's the least we can ask for given our situations.

Trying to get back into my life, had bx on Dec 29, 2011. Have some cording and dx with lymphadema on my side, breast and back. Had my first appt with a LE therapist and it went well.

Luan- I will let you know what I find out. It could take a wk or two but if all persist I will take action.

The ILC is slow growing, so I've been told. It is rather scarey to think if even the tiniest cell was left, that it could take yrs. to detect. I think I've been reading too much.

What would be the most sensitive tool they could use=blood work, scans, ultrasound???

I should read up more on ILC.

It is so valuable to have yours and others support on this board!!! Thanks

mtks, I know, the more we read, the scarier it gets sometimes.  From what I understand and having gone through X-rays, CT-scans, MRI and finally a PET scan, the latter is the most sensitive.  They inject sugar with radioactive material and if the smallest cluster of cancer cells is present, it will show up.  You sound worried and if I were you I would insisit to have an all-body PET.  It really put my mind at rest when I got the results.  What stage are you at ?  I believe in the more advanced stage, sisters get scanned on a 6-month basis, not sure though.  I've also heard of some sisters getting tested for markers in their blood.  My onco won't do this, says there's no point.  And that's why I will be looking for a second opinion to make sure that his treatment is the standard

I'm not suggesting that my ILC behaves like all others but I will tell you what I've experienced for 4 1/2 years.  I have mets in the abdomen (peritoneum) and mets in the lungs (the avoli that transfer oxygen to the blood).  I'm on oxygen 24/7.  I have never had a Pet Scan show cancer in my body and I've had at least 10.  My first Onc nearly killed me waiting for these Pet Scans to show anything.  The second and third Onc knew enough not to use them on me.

My family doctor diagnosed my BC and 2 years later the mets when the Onc couldn't handle it.  She used chest and abdo Cat Scans - these spotted all the Ascites in the abdo.  Although my TM's are probably the highest in the country (in the thousands) I have no measurable disease in my body.  A real bummer when it comes to getting into Clinical Trials.  The Onc monitors me with Cat Scans, Bone Scans, and TM tests. 

Another thing to watch is that Lobular can metastasize differently.  With ductal they are looking for Lung, Liver, Brain, etc.  Mets to the peritoneum are somewhat common with Lobular as are Mets to the central nervous system. So are these Avoli problems with the lungs.

I'm not trying to scare the crap out of anyone - just saying that Lobular patients need to be with someone that treats a lot of Lobular. That means either a Breast Cancer Onc or a General Onc that see's tons of BC patients since only 17% of what he/she see's will be Lobular. Some of these doctors go months or years without a Lobular patient. 

Hi Ladies, so I went to the BS yesterday and when he asked how the tomoxifen was going and I told him that I had to stop due to SE, he said- well then we have to do chemotherapy. Then I told him I was thinking about having an oopherectomy and then going on the aromitase inhibitors. Then he agreed and said that would be all right. Have any of you had a similar experience? I would love to chat with someone about the surgery to get an idea of what that is like being forced into menopause like that. I'm a little worried about it. I should be meeting with a Onc/gyn next week. Any advice? I have had cording and have developed lymphadema and I am just scared about more surgery. Thank you.

Lauren....Just now seeing your post....I was Dx feb 2006....bilat with TE then exchange in 2007 with silicone implants....TAC chemo X 6, rads, ooph and took AI's for 3 1/2 years.  I went into surgery knowing that I had node involvement and on the cancer side at least 3 tumors....prophy side came back pre-cancerous.....this past Feb marked 5 years since Dx and I am now on 6 month visits with oncologist....it is a hard road, but doable.....Wishing you all the best.  Karen

Hi Laureen,



I was diagnosed at age 32 - that was 36 years ago and I'm fine. I was dx with ILC and IDC. Actually, back then all they knew was that it was 5.5 cm tumor. 17 years later a pathologist examined the old slides and made the dx. I had no treatment other than a Mastectomy and removal of all lymph nodes. 17 years later I had a prophylactic mastectomy of my right breast. After the mastectomy I dated and married. I know what a kick in your gut the Dx was. I remember. I want you to remember that I'm now 68 yo and healthy, someday you'll be 68 writing to some young woman hoping your story will give her hope. My thoughts will always be with you.

Val

We do whatever they say.  My diagnosis was made years after the fact.  They did things so differently and knew a fraction of what they know now.  Now I would be a hihger stage (I'm told) because of the high grade and size of my tumor.  I don't even know if one can have both ILC and IDC. But again tht's what I was told.  I only had the pathologist take a look at my slides 7 years later because I was 40 and wanted to do fertility treatments.  I remember my OB with tears in his eyes when he told me No.  No estrogen for me - ever.

I tell my story to give hope NOT to cause anyone to question their treatment.

BTW, I had the 1st 2 stage procedure (biopsy before surgery) in Cincinnati and my surgeon was one of the only breast surgeons willing to do a Modified Radical instead of the Halstead Radical.  Thank God things have changed.

Val

Val, that is wonderful! So happy to have heard, thank you so much! I have been called a survivor and to me that doesn't make any sense, you are the real deal!,,, an amazing, inspiration.