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Topic: Radiologist messed up -- now how will it be fixed???

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Nov 28, 2018 05:56PM

jessie123 wrote:

I was just diagnosed with ILC today. A couple of weeks ago I felt a quick pain on my outer left breast and when I touched the area there was a lump. Went for diagnostic mammogram -- nothing showed up. Same day had ultra sound on the outer 1/2 of the breast and it showed the lump. Radiologist said it was cancer and scheduled a core biopsy . The ultrasound showed the lump to be 1.3 cm. Anyway, monday I went for the core biopsy and a different radiologist did it. I had read that they should take 5 samples. Well, this guy took about 15 samples. He kept having trouble seeing the lump -- although I saw it fine on the screen. He said he was taking so many samples because he didn't want the pathologist to complain they didn't have enough sample. Anyway, today the nurse called with my biopsy lab results --- she could only say that it was lobular. All the other information like grade, estrogen receptors , Her2 status was not provided because the pathologist didn't have enough tissue to work with. I wouldn't let them put one of those markers in and now I'm glad I didn't --- he probably would have put it in the wrong place. I'm seeing a surgeon next Tuesday . My question is -- How will they determine all the additional information they need.? Will they do another core biopsy? Is there enough tumor left to even do another biopsy since the guy took 15 scoops of tissue. This is not a good start to my new journey.


Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Nov 28, 2018 06:49PM AliceBastable wrote:

Lobular is a tricky beast, hard to pin down on imaging except, I think, MRI, and due to the chain shape as opposed to solid, also is hard to capture for sampling biopsies.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 28, 2018 07:02PM jessie123 wrote:

I don't understand --- mine feels like a solid round lump deep down in my breast.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Nov 28, 2018 07:34PM HeyLady wrote:

Lobular is very tricky to find and see. In April, 2018 my mammogram indicated I needed further investigation. A core needle biopsy indicated LCIS, ultra sound showed nothing and even MRI showed nothing. Six months later I had preventative surgery - bilateral mastectomy with immediate breast reconstruction. The pathology report indicated a 1 cm lump. My surgical team is convinced it was there in April and was not seen on the MRI. By reading other posts you will find phrases that lobular "is tricky", is evasive". If you feel a lump pursue it. Also before any surgery have your lymph nodes tested to see if cancer cells have travelled to nodes. Surgery will only remove the nodes with cancer cel It used to be common to remove all the lymph nodes but there is a risk of lymphedema. Good Luck.


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Nov 28, 2018 08:13PM Dani444 wrote:

Jessie, I did feel what was more like thicker or hardened tissue after noticing other breast changes. From what I understand, ILC doesn’t always present as a typical lump due to the way it grows. The cancer cell grow straight out in rows rather than clumping together. It is difficult to find In imaging. My tumor measured from 2cm up to 4.7 depending on what imaging was being read. I give props to the radiologist on the tumor board that decided the area was 4.7 cm,pathology came back at 4.8cm. I was impressed!

I imagine they will want you to get an MRI to get a better picture. I am sorry your experience was so frustrating, I hope moving forward things get better and you get a clearer picture of what you are dealing with.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 29, 2018 12:14AM - edited Nov 29, 2018 12:14AM by Meow13

I don't think mine was a traditional lobular tumor, it was very distinct showed up on mammogram, ultrasound and mri. I had a mastectomy and the pathology showed one 1cm tumor idc and one 1cm ilc no other cancer present anywhere they could tell. I had DIEP reconstruction so far so good.

I think they should be able to get er, pr and her2 status for your biopsies. It ususlly takes atleast a couple days for pathologist to review it.

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Nov 29, 2018 05:15AM Georgia1 wrote:

Jessie, so sorry you have joined our little club. I agree with others on ILC being "tricky." Your surgeon will probably want an MRI and while you're there you can get an MRI-guided biopsy which should be more successful. Best of luck and please stay in touch.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 29, 2018 11:13AM jessie123 wrote:

I'm not going back to the hospital that I had the mamo and biopsy in. I really don't trust them. 15 years ago the pathologist at that hospital misdiagnosed my husbands cancer as multiple myloma when he actually had bile duct cancer which I learned at autopsy. This isn't a tiny country hospital. It is very large in one of Alabama largest cities. I've instead decided to go to a teaching hospital here that has a large cancer center. Will see the surgeon next Tuesday -- I also called the "mistake" hospital this morning as I want them to determine if this was a pathologist or radiologist mistake. I'm not going to do anything, but I want to know what exactly happened. They say lobular is so rare as it occurs only 10% of the time as breast cancer, but out of the 4 friends of mine who have had breast cancer 3 of them had lobular. They are all fine. Thanks to everyone for responding to my post -- you are going to be a wonderful help through all of this.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Nov 29, 2018 08:27PM Luckynumber47 wrote:

Maybe it wasn't the fault of the radiologist but just the way your tumor reacted. I had something similar with my IDC. The radiologist had to take 8 samples because every time she clicked the gun to grab the sample the tumor pushed backwards. She showed us on the screen as it was happening. Needle was clearly in the center of the tumor but it just kept bobbing back away. The radiologist said she had never seen that happen before. Eventually she was able to collect enough to do full pathology.

My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Nov 30, 2018 04:42PM jessie123 wrote:

But he kept saying he couldn't see the screen and kept asking the tech if he should move towards my head or lower body. I could see the screen fine. Then when he said he didn't want the pathologist to complain about not having enough samples or tissue it made me think they have complained about him in the past. The only information I got from the pathologist was that I have lobular carcinoma. I'm not going back to that hospital. Have an appointment with a surgeon at a teaching hospital on Tuesday. I wish she would find the whole thing is wrong and I don't have cancer. Wishful thinking!!

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Nov 30, 2018 08:32PM Racy wrote:

Following surgery, the pathology of mass removed will be analysed so you will get a fuller picture then of the features, if not before.


Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Nov 30, 2018 08:33PM Luckynumber47 wrote:

You should absolutely be at a hospital you have confidence in. In my opinion that's a huge part of this cancer battle. I wonder if the new dr will want to redo the biopsy. Knowing the hormone receptor status and grade of the tumor is info they will want before surgery.

If it's any comfort, my radiologist said nearly the same thing: "the pathologists don't like it if I don't send them enough material in the samples". I was a little worried about needing so many samples but it worked out ok.

This is kind of a bumpy road but you'll get to the healthy side quicker than you think. Hang in there!

Sending hugs, Lucky.



My avatar is a Blue Footed Boobie. Cracked me up. Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Dec 1, 2018 04:16AM DivineMrsM wrote:

Racy is right, after your surgery, the malignant tumor will be sent to pathology and you will get the information you seek when you obtain those medical records.


found lump 12/22/10~er+/pr+/her2- stage iv bone mets------------- Chemo~lumpectomy~radiation~arimidex------------- March2019/Ibrance-Aromasin---------- Sept2019/Verzenio-Aromasin
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Dec 1, 2018 06:34AM jessie123 wrote:

But the type of surgery I will have depends on the additional information. Since my tumor is just 1.3 cm maybe I can opt for a lumpectomy rather than total breast removal. However I really would rather have total breast removal since I'm a widow and don't plan on ever dating again -- but that's major surgery and it really scares me.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 1, 2018 10:19AM macmomma wrote:

Sometimes the lumps you feel with ILC are from the way the actual cancer cells pull the normal tissue and distort it. ILC almost never makes an actual lump. It's tricky


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Dec 1, 2018 01:26PM L-O-R-I wrote:

Hi Jessie,

Keep up with the wishful thinking you mentioned earlier!  I think that is great.  Errors are made more than we hear about, as you have experienced with your late husband.  Even Doctors now-a-days encourage second opinions.  I'm glad you are going to a new hospital that you are confident with.  Your experience so far does seem to be confusing.  You had a mammogram and from that you were told that you had cancer?  Then you had a biopsy and over the phone they confirmed that you had cancer?  Over the phone?  I would be running from that hospital too!  You should relax for the next few days until your new appointment.  Think positive and at your next appointment, let the surgeon know that you are not comfortable going forward with the partial diagnosis you have received to date and that you want to leave that bad experience behind you and start fresh.  He will understand.  

Philippians 4:13 Surgery 4/18/2018 Lumpectomy: Right Dx 4/21/2018, IDC/IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC)
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Dec 1, 2018 01:36PM jessie123 wrote:

They never did check the other half of my left breast or any of my right breast with the ultrasound. Who knows, I could be full of ILC. I think they need to check that and if found do a second core biopsy before any surgery is discussed. I have gained a ton of weight in the last 10 years due to stress (moved my 2 parents each with dementia into my home) and noticed 3 or 4 years ago that my right breast is a little larger than my left. I ask the mammogram lady about it 3 yrs ago and she said that is normal. Well, it's not normal for me, but I wrote it off to the weight gain in my breasts. So I'm a bit worried. I have felt that breast and don't really notice anything different.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 1, 2018 02:33PM Kassy54 wrote:

Jessie, I am sorry you are having to deal with this.

I work with families in which a loved one has dementia, and I strongly suggest you arrange some time off of caregiving for yourself. It’s ok, and better for your parents even, if you can reduce your stress somewhat by getting some time to yourself.

Take care, and best of luck! Glad you made the hospital change—good for you for taking action


Dx 9/2009, ILC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+ Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Chemotherapy Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Dec 1, 2018 06:55PM jessie123 wrote:

Thanks Kassy --- I'm alone here now as my mom died 2 yrs ago and dad before that. My parents were kind of mean dementia patients -- you know how some are (-: However a couple of the sitters were worse. I had one I called the screaming sitter - she drove me literally crazy, but I was afraid to let her go because then I'd have to find someone new. The 12 years of stress caring for my parents probably contributed to this cancer. I retired from the state and within one year my husband developed the cancer and died at age 58 -- I knew something was going on with my parents when my mom came to the funeral in purple stockings - then started the parent caretaking. I'm finally alone and away from sickness and now I have cancer.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 2, 2018 10:09AM - edited Dec 2, 2018 10:10AM by Salamandra

jessie, it's such a slog. Life can be so unfair.

I was 20 when my biological mother died from breast cancer. Then my co-mother was diagnosed with frontotemporal dementia when I was 23 and I was basically in charge of her. The average life span from diagnosis is 2-10 years, but she survived 15 - many of those years immobile and unable to communicate in any way. She died in April. My biopsy was in September. That was about months, out of basically all fo my 20s and 30s, free from these kind of cares. What can you do, you get what you get...

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Dec 3, 2018 06:30PM jessie123 wrote:

Salamandra

I know -- it's like please give me a break! I took care of my two parents with dementia for 12 years and it's very stressful. A year before I started caring for them my husband died of an undiagnosed extremely painful cancer --- bone mets in his pelvis and up and down his spine. Sometimes I wonder if I developed PTSD from that. Anyway have had a 2 year break from stress and now breast cancer. Have you ever heard of the old saying that you stay physically strong during very stressful events and then when it's over "you" get sick. Guess that's what happened to both of us.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast
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Dec 3, 2018 06:37PM jessie123 wrote:

Salamanda ---- Guess I'm also getting dementia --- I just wrote back the whole story that you were responding to. I'm not use to these boards yet. Should have read what you were responding to before I repeated everything a second time.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/15/2019 Whole-breast: Breast

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