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Topic: What were your symptoms of IBC?

Forum: IBC (Inflammatory Breast Cancer) —

Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

Posted on: Feb 20, 2016 08:57PM

Aguafria wrote:

And please forgive me if this is the wrong forum :) I'm just curious as to what your story was. Thanks

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Posts 31 - 57 (57 total)

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Aug 15, 2016 05:24PM jcpriest0469n wrote:

my inflammory breast cancer presented very quickly,except for the iching,but I didn't realize what it was until after the dianogsis. The itching starter in the summer and the other symbols showed in Oct. My left breast double in size with two lumps and an inverted nipple. It didn't show on mammogram, or ultrasound. A biopsy did the job.

Dx 12/9/2013, DCIS/IBC, Left, 3cm, Stage IIIB, Grade 3, ER-/PR-, HER2- Chemotherapy 12/17/2013 AC + T (Taxol) Surgery 3/31/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 7/3/2014 3DCRT: Breast, Lymph nodes
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Aug 22, 2016 04:06PM kjprice35 wrote:

Just wondering if you ever got your diagnosis?

I woke up last Tuesday with a bright red angry area on my right breast.

It was the entire length of my mastectomy scar and an inch or so above and below it. So, basically 8 or 9 inches long by 3 inches high or close to the entire breast! I freaked out and am still concerned that it may be a reoccurance or IBC.  It was such a large area, came out of no where, and it was so very red hot.  I called the breast clinic and they made an appt for Thursday but that was all they could do. 

I have implants (silicone) so I was concerned that it may be an infection so I called my PS. My PS was out of the office for the week but his partner did call me in some anitbiotics, sulfa meds, and antibiotic cream.  He asked that I come in the next day and when I did he said he was fairly sure that it was contact dermatitis but I have done nothing new, changed nothing, nor had I come in contact with anything new or different than normal.  I had a reaction to the sulfa meds so I took a Benadryl and didn't take any more but continue to take the clyndamicin. Also, the cream made me ITCH like crazy and seemed to aggravate the other breast so I discontinued it after 24 hours. Once I discontinued it the area on my left breast that was aggravated and itchy gradually went away so I'm assuming that was the cream. 

On Wednesday the red area on had lightened up but both breasts were aggravated and itchy (from the cream) and at that point I called the breast clinic and told them that and they switched to appt to that day. So I went in with what looked like a rash on both breasts but that wasn't in reality what it was/is. I had an ultrasound at the breast clinic and the Dr there said he thought I was fine (he didn't even look at my chest or the area involved!).  He based his diagnosis on the ultrasound only and gave me absolutely no answer as to what it was. I got very angry and he finally said he could bring me back in 2 weeks for an US... I asked him why I would come back for the same test that showed absolutely nothing so he begrudgingly said that we could make it an MRI if that would make me feel better.  I told him it was better than a repeat of that visit.

The left breast is back to normal and, as of this morning, the right has faded to a very faint pink flushed color.  I am having pains in my arms along with muscle fatigue. I am also having some continued itching and shooting pains in my right breast and serious pain in the center of my chest between the two. That pain feels like its just below the surface or on the bone?I had an MRI in the fall last year because I saw a spot on my bone scan that was brighter than the rest.  The radiologist said it was a hemangioma but only after I insisted on the MRI to look at it. I have had and continue to have pain under my right shoulder blade right next to the area on the spine where the "hemangioma" was/is. 

Am I just being a hypochondriac? and really, how is it possible to not be concerned? Any one else have any of these issues?

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Aug 23, 2016 09:33AM tracy616 wrote:

I'm 67 and had a 3D mammogram that did not pick up my IBC. It took almost seven weeks for the doctors to find it. All I had was a very pale pink around the breast. No fever, no warm skin, no orange peel affects and no lumps. Because something just didn't feel right I just kept pushing until the doctors were finally able to see skill thickening on the MRI and confirmed it with an ultra sound then a biopsy. Be persistent if you think you have this. I know the front desk of the doctors offices were probably calling me all kinds of names because I pushed to be seen sooner than they wanted to schedule me. I will hopefully start treatment on Monday (8/29).

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Aug 23, 2016 06:35PM Traveltext wrote:

Excellent work pushing your case tracy616. Sorry you have to be here, but when you have a treatment plan, come over and meet the crew on the BCO IBC Lounge HERE.

Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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Aug 12, 2017 07:40PM dunegrass wrote:

In answer to "What were your symptoms..." Like Tracy616 I have had slight reddish purple mottled coloration with almost spider-vein like markings on right breast around the ariola and extending out 1.5 to 3 inches around. (Slightly farther on right side of breast.) Have also had vague aches and pains in that breast. These symptoms have been present for 2 to 3 months. My P.A. looked at it a couple weeks ago and did not think it was IBC because symptoms were few and mild. I do remember itchiness in that breast which began about 3 to 4 months ago, and has since gone away. I also had my sister, a certified nurse midwife look at it. She also thought it was nothing. I still think it unusual to have this discoloration and vague pain for no reason. After reading Tracy616's experience, I'm back to worrying about IBC again. Thank you for this forum. I would be grateful for any advice!

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Aug 12, 2017 07:45PM dunegrass wrote:

I hope your treatment went well and that you are doing fine, Tracy616. Thank you so much to you and all on this site for sharing your experience and wisdom.

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Aug 12, 2017 10:39PM Kicks wrote:

Tracy616 has only posted once and has not been back to Site since the day she signed up and wrote the only post.

IBC is rare - only between 1% - 4% of all DXd types of BC. It is rapid in presentation and aggressive in progression. Literally can present over night and progress in days. It has no 'set in stone' rules it has to/does follow. It does not go away once it presents.

I can only speak for myself - I never had any 'redness/rash', pain, or 'itchiness. Mine present literally overnight with an enlarged lymph node. I saw my PA a week later and had a new mammo, an US and biopsies that afternoon and the path. report at 8 the next morning. Lots of appts, scans and port placement in the next 17 days and started neoadjuvant. Total of 24 days from presentation to starting Chemo.

There are a MANY possibilities/probabilities for what you've experienced that have nothing to do with a y type of BC. An appt with a Dermatologist might be in order. If it persists/worsens - see your PA again.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Aug 14, 2017 01:23AM dunegrass wrote:

Thank you, Kicks. I will follow up with dermatologist.

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Aug 19, 2017 05:43PM - edited Aug 19, 2017 05:44PM by danikalifornia

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Sep 1, 2017 11:51AM - edited Sep 1, 2017 11:53AM by Laura12

First of all, all of you rock! I've read these threads and been inspired by all of the courage you have all shown. I personally will be praying for each of you. Now I need some reassurance! I had a cyst on my chest last year - it was right where the top of my bra hit my skin. It was raised up and filled with yucky green stuff. I remember this because it burst last October while on vacation. I continued to squeeze it for months before it was empty and went away (I have a small scar where it was). It was gone by December or January I think. In any event, it filled up slightly this past Sunday night and I squeezed it again (some white stuff came out). Monday morning I noticed a red streak running from my breast right up to this area and some mild tenderness. By Tuesday, the red streak was more noticeable and quite hot. By this time, my nipple was quite sore and inflamed (thickened in one spot). I went to my PCP on Wednesday and she gave me an antibiotic and drew on the red area with a Sharpie (telling me not to let it get outside of the area). She felt the cyst went below my skin and had burst or I had residual bacteria under the surface that was causing an infection. She did ask that I get an ultrasound and mammogram and sent to a breast specialist/surgeon asap for a second opinion. So I went to the breast specialist yesterday - had an ultrasound. I was freaking out (still am) about IBC by the time, after reading the symptoms. The breast specialist told me to finish the antibiotic and come back next week. She said the ultrasound didn't show her anything that she typically sees with IBC - that there was only one area that was consistent with cellulitis. Today (3rd day of antibiotics) it feels much better and isn't anywhere near as painful as it was and the redness is subsiding. I'm still very worried it's IBC!! How in the world would a 50-something menopausal woman get cellulitis?! I'm worried the IBC is causing the cellulitis OR it's not cellulitis and is IBC!!! I am absolutely terrified. Edited to add: the breast specialist said none of this was related to the cyst situation. The ultrasound didn't show any fluid or mass - just thickening that radiologist said was consistent with inflammation from the cellulitis. I haven't had the mammogram yet - waiting for inflammation to go away and tenderness.

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Sep 1, 2017 12:16PM Freya wrote:

Hi Laura, if it was IBC it would not be improving with antibiotics. Cellulitis is caused by bacteria entering the skin via a bite, scratch, rash, or even just scratching the skin with your nails. I'm a 50 something menopausal woman, and I've had cellulitis more times than I can count, usually from a bite.

It seems you are getting the right treatment and it is working.

Dx 2009, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, 14/22 nodes, ER+/PR+, HER2-
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Sep 1, 2017 12:25PM Laura12 wrote:


Thank you for replying! I have been sick with worry - even after the breast specialist told me not yet. I asked her yesterday "would the ultrasound show you something you'd be concerned about?" and she said "if I saw anything on here that caused me to suspect IBC I'd tell you to call your boss and tell them you won't be in and you'd spend the rest of your day with me - I don't see anything at this point that has me thinking that." I think the thing that has me most concerned is my nipple is thickened - which she said could be due to the cellulitis. I'm scared it is some type of cancer on my actual nipple though (the swelling appears to be less today though).

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Sep 1, 2017 12:33PM Freya wrote:

Try not to worry, it sounds like your symptoms are from the cellulitis to me, including the nipple. Another couple of days of antibiotics and most of the thickening should be gone as well. Do you have another appointment with your Dr? I have sometimes needed a second cycle of antibiotics if the infection was bad.

Dx 2009, ILC/IDC, Right, 6cm+, Stage IV, metastasized to bone/liver, Grade 3, 14/22 nodes, ER+/PR+, HER2-
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Sep 1, 2017 12:38PM Laura12 wrote:

I'm going back to the breast specialist Tuesday for a follow-up, though she told me if it was better by then I don't have to come back. I'm trying to reassure myself that the ultrasound didn't show anything and she said she has seen IBC on ultrasounds before. I've only had 4 doses of the antibiotic so I'm taking it as a good sign that my discomfort is much less...I've just never had cellulitis before and it seems very odd to occur on my breast out of the blue!

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Sep 1, 2017 03:08PM Kicks wrote:

Last Oct. when your spot "burst" with "yucky green stuff" - did you go to a Dr for the a DX and TX or did you just keep "squeezing it for months before it was empty and went away"? " it was gone by December or January" - IBC does not 'go away' once it presents! It does not 'go away/get better' with antibiotics! It presents rapidly and progresses aggressively - overnight/days.

According to you, you had issues that were probably an I fection of some sort almost a year ago that did finally resolve to some degree, but now you have another issue (or the last issue re-emerging and the antibiotics are dealing with it. Sometimes a different or second round of antibiotics may be required for an infection.

Of course, I am no expert - just one who is IBC. There is nothing that you wrote that would indicate IBC at all as your Drs have said.

The IBC Forum is for, as is stated at the top of the Forum, "Just diagnosed, in treatment, or out of treatment for IBC". There are several other Forums that would be more appropriate for you to post in.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Sep 1, 2017 03:34PM MTwoman wrote:

Laura, another indicator (for me) that what you're experiencing is an infection (other than the "yucky green stuff" which you expressed for an extended period of time) is the warmth to the touch and "red streak" that you mentioned. It is quite common for some types of infections, when they've entered the blood stream, to make a "red streak". Take tetanus, for example, if someone uses a non-sterile instrument to remove a splinter, they can easily end up with tetanus and you can tell it's happening when you see a "red streak" moving up your arm. When you squeezed the offending cyst, you were trying to express bacteria out. But the fact is, unless you are completely underneath something, when you squeeze, you are squeezing things both out and in. Then you can end up with something like cellulitis, which as Freya indicated, is a skin infection. Hoping the antibiotics continue to clear it up for you!

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/20/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Sep 1, 2017 03:50PM Laura12 wrote:

Thank you all for answering me. I apologize to anyone if I posted in the wrong forum - wasn't trying to offend anyone or do anything wrong. I found this site through googling and figured someone who had been diagnosed with IBC might recognize my symptoms and/or the cellulitis diagnosis. I appreciate the responses and apologize again. I truly wish all of you well who are struggling with the disease. I can only imagine what you have all been through/are going through!!

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Sep 17, 2017 12:23PM Libbie40 wrote:

I woke up one morning with a dime size area of redness underneath my right breast , thought maybe a spider bite. No other symptoms familiar with IBC. It's now been over a week now size of 50 cent piece. Have appointment with PCP Tuesday 🙏. Of course after googling I'm a nervous wreck , thank you all for sharing your stories.

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Sep 17, 2017 04:19PM - edited Sep 17, 2017 04:27PM by ksk359

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Nov 4, 2017 07:38PM LoriCA wrote:

IBC hit me hard and fast. I started with a small rash along the top edge of my bra. We had an unusually humid summer, so I thought it was just a sweat rash. A few weeks later I woke up and my right breast was rock hard, swollen to twice it's normal size, my skin was so hot that it felt like it was on fire, orange peel bumps, lymph nodes under my arm and above my collar bone were swollen, and what looked like a large purple bruise covering almost the entire right side of my torso. It was the Friday of a long holiday weekend. I i wish I had gone to the emergency room. By the time I saw a doctor the following Tuesday, the bumps on my breast had started oozing and lumps were developing in my left breast. I was told to check myself into the hospital immediately.

The tumor continued to grow at an incredible rate while I was in the hospital and they were running tests, scans, biopsies, etc. to try to figure it out and how to treat it (and save my life because I went downhill fast). The open wound on my breast was the most terrifying because I could see it grow every day. Within days the tumor grew into the brachial nerves of my right arm. I started losing mobility in that arm, and any time I tried to use it, it would swell. I was told that I might never regain full use of it again if we couldn't prevent further nerve damage. I was also in incredible pain.

The second CAT scan done right before I was discharged showed suspicious spots on my liver. My MO recommended a PET scan to confirm. The spots were still too small to confirm (and too small to biopsy), but the PET scan showed mets throughout my bones, including my spine, even though a bone scan done a few days earlier showed nothing. I started chemo the next day.

Dx 9/12/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel)
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Nov 4, 2017 08:35PM - edited Nov 4, 2017 08:38PM by Alanna62

Hello I'm fairly new to this group. Tuesday Oct 10 I awoke to this sharp pain that came n went. Half asleep on my right side brawless for the first time since child hood. Not awake enough to determine the cause I try to go back to sleep. The pain appeared again, this time I rolled over on my back. The pain came again and still cannot figure out where its coming from. I get up get the girls ready for school. Come home after dropping them off getting the shower I noticed a deep dark bluish purple bruise the size of an orange on my right breast. I freak out I'm in the docs office Thurs. It's been 1 month now the bruise is gone but above where it was i have a blotchi pinkish area remaining. My ob gyn thinks it's nothing, my mammogram n blood work were normal but I demanded an MRI, scheduled 11/10. I have no itching, swelling, discharge or thickening skin. I'm scared to death n I know I'm in the Lord's hands. Just wanted to share my story thus so far.

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Nov 4, 2017 10:47PM edwards750 wrote:

No worries Laura.

OMG Lori what a harrowing experience for you. I’m sure you were scared. I know I would have been.

I woke up to a badly bruised breast on a Sunday earlier this year. I didn’t remember running into anything so of course I freaked out. I searched the internet including here for answers or anything that would allay my fears. Of course no one knew for sure but I was desperate.

My DH suggested I make an appointment with the Cancer Clinic the next day. I had IDC, Stage 1b, Grade 1, 6 years ago this past August. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years.

I decided to wait it out a few days and see if the bruise faded. Thank God it did. I didn’t have a rash or swelling.

Since we are all branded with the C word it’s not a surprise that we self diagnose ourselves. It’s also understandable we think any abnormality means the beastis back. I know I will always have the fear factor. Unfortunately it comes with the disease.


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Nov 28, 2017 02:45PM LoriCA wrote:

Diane everything happened so fast that I didn't have time to be scared. My faith is strong and I placed myself in God's hands. One minute I was fine and driving myself to the hospital, and the next minute I was apparently on the verge of death. I still don't understand how my tumor could just take off like wild fire the way it did, but something triggered it and it had a field day playing in my body. It was much harder on my husband, he came close to having a breakdown until his sister flew across the country to take care of both of us. I forgot to mention that I had a cardiac event within minutes of checking myself into the hospital (probably stress induced) and had to spend a few days in the cardiac ward before they transferred me to oncology to start doing multiple biopsies and scans to try to figure out what was going on. It wasn't until weeks later that I realized why I was given a private room with unlimited visiting privileges. By the time my MO saw the results of the PET scan, he thought I had maybe two months to live if I was lucky, unless I had a dramatic response to chemo.

The good news - fortunately I did have a dramatic and immediate response.to the chemo that shocked everyone. Although the tumor destroyed my right breast (right before my eyes!), most of the ulceration has now healed and I have new pink skin (it's still tight and really hurts when I'm active), I have most of the mobility back in my right arm (about 95%), I've been steadily reducing the pain meds, I'm doing really well, obviously made it beyond the two month mark and I plan on living much longer! My next PET scan is in January and we'll see if we have this beast under control. I still have tough days, being Stage IV really sucks some days, but I'm doing well now and in this fight for the long haul.

I'm so happy every time I see someone with IBC catch it while it's still in the early stages.

Dx 9/12/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel)
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Jan 22, 2018 09:09AM Jennem14 wrote:

I'm having similar symptoms to dunegrass. I noticed a small discoloration on the top of my breast and near my cleavage, went to the Dr and she thought blocked milk ducts as I'm still nursing my 20 month old daughter. 2 days later i noticed a big patch underneath my breast, and a small one closer to my nipple. The rash is flat, not raised, it Blanches when you touch it. It doesn't look like It has small red spidery veins in it, but I have those all over both breasts. I've had them for over a month now. I've had an ultrasound that came back normal other than some fibroadenomas. I've had no pain, no itchiness. My right breast is already bigger than my left. My right is the one with the rash so I can't tell if it's gotten any bigger, and I have stretch marks so I can't tell if I have ridges. I'm waiting for an appointment with a. Breast specialist and my Dr doesn't seem concerned. She keeps telling me to ignore it. I'm sick with worry. I can barely make It through the days. I have a 3 year old and a 1 year old and they can tell I'm not acting normal. With the rash underneath, when I go to look at it, at first it doesn't seem that bad, but then as I hold it up, the rash gets way more visible. The more I read, the more I freak out. My Dr doesn't think it's anything dermatological either.... Any one else experience anything similar?

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Jan 22, 2018 10:11AM MelissaDallas wrote:

Dunegrass didn't have IBC

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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17 hours ago chelleb1017 wrote:

Jennem14 I have a red spot on my breast also and have seen a nurse practitioner at a breast clinic and she said I showed no signs of IBC and said it is just a simple skin problem cyst, ingrown hair, etc.. She said she knows I suffer with anxiety and that it was good I gave it two weeks and can now have peace of mind but I don't. I am still so scared this is my first symptom of IBC. If you want to talk please message me. I am also a mom of 2 young ones and am so scared I am leaving them. Also if anyones IBC started with a pink patch a little smaller than an eraser please help me. It has gotten no bigger or smaller, does not itch, its very light pink and was raised at first but now is almost totally flat.

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17 hours ago MelissaDallas wrote:

chelleb, if you look at the top of this page, you will see that this thread is for:

diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.

You should be posting in the "not diagnosed, but worried" threads, if any, not in the "diagnosed"thread here, but I'm not sure how we can tell you any better that your symptoms do not in any way resemble IBC.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.

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