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Topic: Delayed surgery, 8.6cm growing very fast, not sure what to do

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

Posted on: Mar 26, 2019 07:40PM

ed111 wrote:

In January I felt a tiny mass, went to 2D, it showed nothing.

Beginning of February on my annual checkup I convinced my primary to feel it and send me to 3D. 3D was followed by immediate ultrasound and biopsy on the spot -- 0.7cm IDC. That was February 13. I made an appointment with three weeks wait to the best of the best in cancer treatment institution, after all, it was so small, why worry.

The surgeon asked if I have vacation travel plans, there is no need to rush. But at that point she could already easily locate it and said it's probably around 1.5cm.

Again, I pressed on and insisted on MRI which was done two days later. After a week waiting for results -- 8.6cm. Dr didn't call. Nurse called me to say they will be scheduling mastectomy within 6 weeks. I gasped. Went for a 2nd opinion to another hospital. Surgeon said that yes, MRI looks alarming, but again, they have a schedule and maybe can have me in three weeks. Three is better than six, but still make it two months after detection.

This thing grows exponentially every day. It's almost unreal. Surgeon seems very determined not to rush. Not sure what to do. Absurd situation, given that till now I had to press to detect it, diagnose it and actually look at it with MRI. Now what? In three weeks it will triple. And there are studies that survival correlates directly with size and time of surgery. I thought after they see the size they will do it next day. Run to yet another hospital?

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Apr 5, 2019 09:04PM jessie123 wrote:

ed -- if you find out what that elongation is will you let me know. I was never really told. I just assumed it was a false positive from the surgery path report. I've had a very difficult time getting doctors to really explain things to me. Did you get the impression that the elongation was just the tumor stretching down since our breast was hanging down? I kind of got that impression from the radiologist who read the MRI --- but then again it may have been a false positive. All I know is my path didn't mention it. Good you didn't stay with the two hospital that wanted to do a mastectomy ---

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 5, 2019 09:22PM ed111 wrote:

jessie123 -- I certainly will. They say the 'core' tumor is ductal, so it shows on ultrasound, but the extension is lobular, so it shows only on MRI. I have a little more than a week to find out ) My local hospital doctors are amazing in explaining and making sure I make decisions that are right for me. What a difference it makes...

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Apr 5, 2019 09:34PM jessie123 wrote:

My lobular didn't show on mammogram, but it did show on ultrasound. I know they did a biopsy on your lump which showed IDC, but have they biopsied the long line? If not, how do they know it's lobular?

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 6, 2019 07:28AM ed111 wrote:

jessie123 they based on my initial biopsy results 'IDC with lobular features'. They say there is no doubt extension is lobular. I will find out everything in less than two weeks ) So far, I'm very happy with vit C high dozes infusions. Two nodes I felt on a breast side are not there anymore, and I feel no progression in grows, if not shrinking.

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Apr 6, 2019 08:13AM jessie123 wrote:

ed --- that was my exact first biopsy diagnosis --- they didn't know of the extension yet because I hadn't had the MRI. My first biopsy result at one hospital was Lobular and then I went to a large cancer center at a teaching hospital and the result was "mammary carcinoma with lobular features" Mammary cancer is IDC. The pathologist told me that was mostly IDC with some lobular mixed in --- the nurse practitioner also said it was IDC with some lobular mixed in. However, my surgeon said it was just lobular. That caused me extreme stress since I though she was wrong - However, she is well known, is published on pub-med and does just endocrine and breast surgery. You can read some of my desperate posts on this board from that stressful experience. Anyway, after my surgery the pathologist found absolutely no IDC. It was all lobular and LCIS. It is horrible to get conflicting information --- although in the long run it probably makes no difference.

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 6, 2019 08:22AM ed111 wrote:

jessie123 -- wow. I won't be surprised if my post-surgery oncotype will turn out something like that. The fact it, whatever it is they have to take it out ). I wish, I wouldn't be running around for two months waiting weeks at "best of the best" where I was another conveyor cancer case to be processed based on guidelines, without my personal interests in mind. All is good now, will take it out soon in the least invasive manner possible. Thank you for sharing your story, this shape of growth is very uncommon!

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Apr 10, 2019 10:16AM Grandma05 wrote:

I was diagnosed with IDC on January 29, 2019. It took 2 months to actually start treatment on it, but not surgery. I am on chemo, 4 cycles with the first round every 2 weeks, 12 weeks with the 2nd round happening every week. Both my cancer doctor and surgeon agree that treatment had to be first to stop the cancer from growing because it was a fast moving cancer. I was like you, I thought as soon as they found it they would take it out, but that all depends on what kind it is, where it is, your health, your age, lots of other details. My biggest advice to you: trust your doctors and if you don't, find doctors that you do trust and keep a positive outlook, it helps change everything.

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Apr 10, 2019 08:23PM ed111 wrote:

Grandma05 -- best of luck to you with treatments! I have surgery scheduled for 24th. Having my second MRI this Sunday, looking forward to see what it shows...

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Apr 14, 2019 04:10PM ed111 wrote:

My second MRI looks drastically different from my first one one month ago. My surgery is planned based on first MRI. On my second MRI elongation is not nearly as long, does not go into nipple and is not centered at all. Puzzled. Waiting for formal report, and what surgeon will say about it.

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Apr 14, 2019 06:31PM jessie123 wrote:

Ed111 --- remember I am the one who also had a long 7.5 cm elongation down from my tumor. I have now read my entire pathology report --- the only cancer found was the original 2.5 cm lobular carcinoma and 2 foci. There was no long cancer coming from my tumor. It was probably a false positive MRI which I understand is common.

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 14, 2019 07:15PM ed111 wrote:

jessie123 -- OMG... no words. They really should biopsy in more than one place before surgery, shouldn't they. Thinking that they recommend mx based on >5, and that most agree and do bmx, and then if finding out it wasn't needed... Waiting for 2nd MRI report, and will ask to biopsy that floating 'elongation' .

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Apr 14, 2019 08:11PM jessie123 wrote:

That's a good idea. My surgeon took out approx. 3 by 4 inches of tissue in order to capture the elongation. That's a lot of tissue! Luckily I have large breast so my breast looks fine. I'll bet your's is also a false positive and if the MRI biopsy confirms it you're incision will be much smaller. A lumpectomy is really easy. Good luck

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 14, 2019 11:14PM - edited Apr 14, 2019 11:23PM by Mycellsmutated

Edit: Ed11 I wrote the below before reading that you already had bone and CT scans ordered to make sure it hadn't spread so I assume they were clear Hooray!. But for anyone else who may be reading this, my tumour is also HER2+ and hormone negative and very rapidly growing (it's gone from barely a noticable lump a month ago to now a huge, sore, dense, breast that I just want gone with flattened nipple and then full nipple retraction). No cancer was found in lymph nodes clinically, or by ultrasound or MRI; but the routine staging CT and bone imaging scans showed extensive metastic spread throughout my spine, ribs and more than a dozen spots on my liver. I have no symptoms apart from the primary tumour. Of which I am proof, the most recent studies show that BC more often spreads through the bloodstream, not the lymph nodes: positive lymph nodes are just an indication that the tumour will/may spread due to tumour size.

Meanwhile the ultrasound showed two separate 1.6cm tumours but the MRI showed that was one connected 2.6cm tumour and an 8cm area of surrounding DCIS (precancerous cells). I have mix ILC and IDC. But this doesnt mean anything any more because it had already spread. If it has spread they will need to add perjeta to herceptin and give you different chemo.

So everyone please push for full CT/staging scans regardless of node status. My nodes are clear and I am stage IV de novo.

Dx 3/20/2019, DCIS/ILC/IDC, Left, 2cm, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+ Targeted Therapy 4/16/2019 Perjeta (pertuzumab) Targeted Therapy 4/16/2019 Herceptin (trastuzumab) Chemotherapy 4/16/2019 Taxotere (docetaxel)
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Apr 15, 2019 07:45AM ed111 wrote:

Mycellsmutated -- oh my. So sorry you go through this. Please consider to include integrative naturopatic means into your treatment, if you have not already. I do tons of supplements and high dozes vit C IVs, plus mostly plants diet, helps a lot. I agree about spreading via bloodstream and importance of scans BEFORE the surgery. When I've heard at Dana Farber they do scan AFTER the surgery, I just went speechless. What's the point? How do you know, whether surgery is even a first line, without the full scan? I went back to my local hospital where they do scans before the surgery routinely, mine is clear for now. I'm conscious about bloodstream spreading, too. Please find naturopatic oncologist near you or online, not just naturopat, but good MO who went naturopatic, there are many out there these days

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Apr 15, 2019 11:19PM Mycellsmutated wrote:

Yeah exactly, it's totally changed my treatment (perjeta is on the pharmaceutical benefit scheme in Australia and prescribed for stage IV only due to the proven benefits, but not for early stage) and now i'm getting a different chemo that's also shown to be more effective with this drug combo, and surgery is off the table because it's too late. But if the drugs work I'll be happy I have two functioning breasts rather than have removed one or two just to have had it already spread anyway! My surgeon said the spread (including 8cm of DCIS) in my breast was so big that if they were going to do surgery it would have been a full mastectomy for sure - if not bilateral!

Dx 3/20/2019, DCIS/ILC/IDC, Left, 2cm, Stage IV, metastasized to bone/liver, ER-/PR-, HER2+ Targeted Therapy 4/16/2019 Perjeta (pertuzumab) Targeted Therapy 4/16/2019 Herceptin (trastuzumab) Chemotherapy 4/16/2019 Taxotere (docetaxel)
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Apr 18, 2019 12:50PM ed111 wrote:

NO surgery for now. 3 months on Arimidex, then we'll see.

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Apr 18, 2019 04:39PM jessie123 wrote:

Ed111 --- I haven't been on this board as much and must have missed your latest diagnoses. I've heard of chemo before surgery, but not the pill. Have you been diagnosed with breast cancer --- have they found out what the elongation is. Why would the doctor say that you may not need surgery? Sure hoping you're going to tell me it was a false alarm and you are cancer free.

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 18, 2019 08:25PM ed111 wrote:

Hi jessie123 -- thank you for checking! ) I still will need the surgery. At least for my now 1.2cm mass IDC tumor. As for that scary 8.6cm non-mass elongation, it turned 3-4cm on 2nd MRI a few days ago. No, they did not find what it is, cuz none of the three places I've been to suggested to biopsy it. They just assume it's cancer. I learnt not to argue, because what happened so far is for the best. I used this "waiting time" for intensive naturopatic protocol. All I know is that both, my tumor, and my 'elongation' whatever it is shrank. I read it from 2nd MRI report, and I see and feel it. My breast returned to its normal shape, tumor is palpable small as it was three months ago. They're not quite accepting of 2nd MRI results, saying it could be machine and measurement differences. But they did offer to hold off surgery on 3 months Anastrozole. We will meet with Drs every month, and do next MRI in three months. I gladly agree, because I don't want to cut off half of breast for 1cm tumor ). We will see what that 'elongation' will be 3 months from now. Drs must be quite confident I'm not at risk with this strategy.

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Apr 19, 2019 07:42PM jessie123 wrote:

ed111 --- it is so frustrating. I discovered my cancer in early November and didn't have surgery until Feb 21st. Did you get a Ki-67 done with your biopsy? That tells how aggressive the tumor is --- mine was low so waiting was OK. I'm like you --- why don't they biopsy that elongation. My surgeon didn't biopsy mine and I never could figure out why. Maybe she knew from years of experience that it was probably benign. So are you waiting in hopes that the tumor will become small enough to have a lumpectomy?

Dx 11/2018, LCIS/ILC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/7/2019 Whole-breast: Breast
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Apr 19, 2019 11:03PM ed111 wrote:

jessie123 -- yep, hope is it will be smaller lumpectomy. After three months they will do MRI. I'm now OK with it cuz it shrunk and I see it. Also I believe the 2nd MRI that shows those 8.6cm no more, but doctors are skeptical. Apparently, there is no risk to take AI for three months, then they want to do another MRI.

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