Delayed surgery, 8.6cm growing very fast, not sure what to do
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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 ---
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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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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?
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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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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.
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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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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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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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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.
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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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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
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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.
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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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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!
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NO surgery for now. 3 months on Arimidex, then we'll see.
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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.
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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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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?
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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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Just a quick update. Doing really well on neoajuvant Anastrozole and tons of supplements, including high dozes vit D and C. Can hardly fill that tumor anymore, meeting Drs every month till July, then MRI and then lumpectomy. God knows best. If everything happened as I was pushing for, I would've ended up with BM which I didn't need, and who knows what else after. Now living my life, with little SE to AI (thanks to supplements) and, frankly, don't think about this cancer much. May have surgery in July, will see.
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ed111 -- I've forgotten --- was it a second MRI that showed the 8.6 cm extension. Did the first MRI show it?
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Core tumor 1.5 cm virtually unchanged on both MRIs. First MRI showed 8.6cm elongation. 2nd MRI after a month of high dozes vit C IV showed 3cm elongation. Dr said, it could be machine or measurement diffs, but offered 3 months Anastozole before lumpectomy. Which I'm happily taking.
My integral med Dr says, this 'elongation' could be anything, not necessary cancer. Could be inflammation that also shows on MRI. First two big centers I've been to didn't give it a chance, their guidlines said mx ).
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ed111 -- I wonder why they don't do an MRI guided biopsy ---- they didn't do that on mine either. I have trouble getting answers from doctors. Of course it turned out OK for me since the extension didn't show up with lumpectomy --- so guess it was benign -- who knows -- haven't gotten a clear answer on that either.
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jessie123 -- I was thinking about that as well, but did not want to push for more invasive tests. I do not believe that new story about biopsy not seeding. It just cannot be true logically. Certainly, for some small well encapsulated tumors it will be so, but for invasive lobular, surrounded by inflammation, going in there with an instrument and expect it won't seed? So I wasn't adamant of having a second biopsy. I'm happy at the moment with how it turned out. It shrank clinically, can hardly find it. No side effects from AI. Will see what they think of surgery in two months
How is your healing, and followup treatments?
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ed111 -- I never had one bit of trouble with the lumpectomy -- it was wonderful. I'm on my last 3 days of radiation boosts. I get uncomfortable laying on that hard table, but other than that everything is good. My breast looks funny and is red, but does not hurt. Now I just have to worry about that pill that's coming up next.
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Hi,
My treatment got delayed and tumor grew while waiting. I would suggest food you eat should be managed, don't eat surgery food I took papaya leaf tea, 1 teaspoon of turmeric wtih half teaspoon of honey for 3 times a day. It helped me to control the growth.
Hope all are ok now.
Cutie
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Hi Cutie -- thank you for sharing! it's interesting about turmeric+honey x3 times per day. I take turmeric, too, but excluded honey cause of sugar. Diet is essential: no sugars, minimum carbs, lots of carrot juice though, all organic. High doses vit C in IVs shrank my tumor within 3 weeks. Plus, high dozes vit D, turmeric, melatonin, magnesium, chaga+reishi mushrooms, inositol, complex B, code oil, ashvaganda, essiac tea, berberin, artemisin, all of it and then some I take daily. Month ago I started anastrozole as neo-ajuvant. Tumor shrank further. Now it's hardly palpable. Surgery is postponed for a few months to let it shrink further.
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Hi everyone, I felt like updating my story. I still didn't have surgery. Appeared that delays were a blessing.
As of today, from 8.6x4 cm back in March, there is nothing left but 17x2mm residual bed. Vit C infusions, supplements protocol, good diet, lots of carrot juicing, breathing meditations. I took anastrozole for about two months, felt SEs and stopped. I did extensive blood tests for markers etc, all clear, no inflammation.
I could've ended up with BM and all the consequences of it.
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