Need Some IBC Info, Don't Know Where Else To Go:(
First off, I wanted to say sorry if I posted in the wrong area, I wasn't sure where to post. I did a recent post which I had not received any responses yet. You can go here to read about my current breast issues and my scare with possibly having IBC. NOTE: I added a couple of pictures at the bottom that I took yesterday of my breast that is having problems. Just to let you know I have taken many different antibiotics and none have made a single difference to my breast.
http://community.breastcancer.org/forum/83/topic/750028?page=0#post_1764830
I know you get alot of questions from women with the scare of the possibility of having IBC. In my heart I know that the women that deal with IBC are the ones with the most knowledge. I have reads so many post, you are all courageous and special women...I admire you all with how you handle what you have to go through each day and trying to keep your head up and moving forward regardless of how hard it is. I have a quote that I made and I try to live by it each day because I already deal with an extremely painful disease called Interstitial Cystitis.
Life will always give you many obstacles that you must face. You must prepare yourself against them with will, strenght and confidence, as others that have pure love for you will be your soliders in the toughest battles that you will have to endure to overcome. Only yourself will decide if these obstacles are impossible, no one else decides otherwise.
Sorry, now to the point of my topic, I have some questions because I am about to see a doctor about the possibility of having cancer. First I need to know what is the best type of biopsy to do that will show if I have IBC? I don't want them to do just any biopsy if it does matter what type can tell IBC.
How long did it take to get your biopsy report back?
Has anyones breast look similar to mine in the picture? I know IBC can and is different for everyone...the way it looks or feels but I guess I am curious if anyone has had similarities.
How should I prepare myself before going to the doctor? What questions should I ask? What test should be recommended?
Thank you for everyone reading this and your future replies, I just pray that everything comes back normal, I will feel more at peace once I can find out what's going on.
Lastly, I really want to encourage you all with any breast cancer to not give up, move forward as a pink warrior because God know that you are all strong women, even when we fall... get back up...dust yourself off...and attempt to conquer this disease with all your might. You are not alone, you have God, each other and family by your side. Even though none of you know who I am...I am praying for all of you. I wish many blessing in your life and a road to an accomplished goal of great health.
*Lots of Hugs*
Robin
The first picture shows more of the redness and the second picture show the bruise like spot near my hand.
Comments
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Robin,
I will try my best to answer your questions and start first with my IBC story. I will say that everyone's stories vary quite a bit....some present with rather extensive symptoms, others very mild. I was diagnosed in August of 09 while I was nursing my daughter. I was misdiagnosed as having mastitis for about 6-8 weeks. After several rounds of antibiotics did not work and an ultrasound was reported as "benign, no findings to suggest malignancy" I referred myself to a breast surgeon. I had a ultrasound guided core biopsy that day and had my results within 24 hours. My symptoms had literally appeared overnight and then worsened. My entire breast, especially after I stopped nursing was firm, red, and warm with nipple retraction and skin dimpling. I was also having stabbing/shooting breast pain.
On to your questions.......
First I need to know what is the best type of biopsy to do that will show if I have IBC?
-IBC vs/ IDC or ILC is a clinical diagnosis....ie: exam findings. You will need a core biopsy to diagnosis cancer. Some patients also have a skin biopsy to technically diagnoe IBC although often this is not necessary since it is a clinical diagnosis.
How long did it take to get your biopsy report back?
-I had my results in 24 hours. My surgeon actually called me fro mDisney World...not a good sign.
Has anyones breast look similar to mine in the picture? I know IBC can and is different for everyone...the way it looks or feels but I guess I am curious if anyone has had similarities.
-It is hard to determine fro ma picture, but I would be concerned.
How should I prepare myself before going to the doctor? What questions should I ask? What test should be recommended?
-You need a biopsy! Scans can miss IBC. You sound like you may also need a biopsy of the ? lymph node in your armpit. Get a biopsy ASAP.
I hope you just have a skin issue and this is not cancer but do not wait any longer to find out. IBC is extremely aggressive.
Best of luck. I pray all is ok. Update us after your appointment.
Hugs, Lori
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Robin;
I pray that you do not have IBC. I was dx in 2008. My breast became swollen overnight. I woke up and noticed the size difference. I called my primary Dr. asap. He said I had masitis. I was put on antiboitics for 1 week then Dr. increased it and it still had not changed just got worse. after 5 weeks of dealing with this my Dr. recommended at Mammogram, and Ultrasound along with a Breast Surgeon. My mammogram and ultrasound did not show anything. Which is common with IBC. When I went to see my surgeon. She told me it is more than likely IBC and they needed to do a biopsy asap. So that day I did one. I got my results in 3 days. It came out positive. They got me into the oncologist the next day and got my port put in and scans done in 3 days and after that I started chemo. You do not have time to think. They start things immediately cause of how aggressive and rare it is. It is good you are presueing this. My prayers are with you Robin. Keep us informed of what is happening.
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Robin,
I had a red rash for 3 weeks as well as a cyst that I could feel. My obgyn sent me for mammogram & ultrasound right away. The ultrasound picked up 3 cysts and the following week I had a biopsy that indicated a 2.5 tumor & ibc. My breast felt warm, itched a bit and stayed red. It was not until later I noticed the orange dimpling. A biopsy is the only way to detect it for sure. It is rare and aggressive.
It's probably good to go to a breast surgeon for the biopsy as they definitely will know what to look for and proceed.
Terri
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Hi ladies,
I wanted to update you all on whats going on. I was approved for that Breast Cancer place that helps women with no money to spend on trying to find out if they have cancer. The first thing they wanted to do was have me go for an ultrasound which I just did today. The ultrasound showed I have an enlarged lymph node under my right arm pit, which I already knew I had but that verified it so thats a good thing. The radioligist did my ultrasound and she saw the redness, the bug bit spot and bruise as well as the nipple charge but she thinks it might be an infection...even though I told her I have been through numerous antibiotics. She said well maybe I need to use steroid cream? The good thing is...she is recommending a skin punch biopsy but she wants a dermatologist to do it. So now the place has to get the report and review it and then email or call me with a phone number of the place to do the biopsy. They dont use dermatologists so I have no clue who would do it becuase they only work with breast doctors. I dont even know if a dermatologist can see IBC on a biopsy or even know how to diagnose it. Has anyone been diagnosed with IBC through a dermatologist?
Anyway, thats my update and hopefully I will be posting again soon with results. Thank you to everyone that has replied, I am very grateful for all of your replies!
Please keep them coming, I would love to hear your IBC stories especially how your symptoms came about(how long did you have the symptoms and what were they). Thanks again everyone!
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Oh I had forgot to ask, what should I expect from a skin biopsy? How long does it usually take? Does it hurt or feel uncomfortable? Do you take pain medicine afterwards? Does it leave a bad scar? Sorry for so many questions, I guess I am a little nervous and just want to know what to respect. Thanks so much in advance!
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I had no pain with the biopsy even though I had a 3.5cm tumor along with ibc. I had a punch biopsy and now I can not even see the scar. I went through 8 chemos & now on hormone therapy (Femara) and monthly Zometa for my bone mets.
Terri
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Thank you ladies for the responses so far! All of you have been so sweet taking your time in answering my questions. I know if it is cancer then I would have a nice support team of sweet, caring & informative women on here. Hopefully this is something else, I pray that it is.
I just picked up my ultrasound report today and there was a little more on it then I thought. There is 3 swollen lymph nodes that are at abnormal size and she put there was mild thickening on my problem breast. I am so upset that the last doctor I had said that it was a cluster of cyst with arteries going through them in my armpit but this radiologist said 3 abnormally enlarged lymph nodes. She didn't suggest the lymph nodes to be biopsied. I wonder when the surgeon sees the report if he would want to do a biopsy on them or if he will just want to do only a skin punch. On my report it does say to do a skin punch biopsy to rule out Inflammatory Breast Carcinoma.
So I do have just a few more questions. Did any of you just have mild thickening with IBC? Was any of your lymph nodes swollen and if so, how many did you have swollen? Can you remember what the size was of your affected lymph nodes that had cancer in them were and what did they feel like when you would feel the lymph node? Was it hard, soft, firm, smooth, rough, a bunch of knots, painful.... anything to do with how they felt? Again, I know everyone is different but I just want to know your personal experience.
I apologize for the 50 questions, hopefully I will have answers soon of what is going on with me. Thank you again to everyone that has been answering my questions and has been bearing with me. Lots of gentle hugs to all of you
Robin
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As far as who to do the biopsy --- it is OK to have a dermatologist do it. They send the tissue sample to a patholologist just like anybody else who might do it. The pathologist is the one who will interpret the sample, not the doctor. Good luck. I hope you do not have IBC.
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Robin,
The size of the lymph nodes is not as concerning as their appearance, at least that is what I was told by a radiologist. I had 4 obvious abnormal axillary nodes on my scans on my bad side plus one abnormal node on my good side. The abnormal and enlarged nodes had loss of their central hilar fat which is not a good sign. I also had diffuse skin thickening. A punch biopsy is not a big deal...little numbing medicine and you won't feel a thing. I hope you get benign results. Keeping you in my thoughts and prayers and hoping you don't have to join this club!
Lori
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Hello ladies,
I just had my biopsy on Thursday so now I'm awaiting my results. My breast surgeon saw my breast discoloration and said I had "Funky Skin". I told him about a a week ago I started having a peau de orange look inside the bruise like large spot and he said "well if it was that then it would be advanced IBC". My husband saw the orange peel looking skin while I was changing into my little bib for the biopsy to be done and he stressed that it was looking ALOT like an orange peel even more. The surgeon said there was no apparent thickening in the bruise looking area that had the peau de orange look but there is a little area separate that has mild skin thickening. He also did an ultrasound on my lymph nodes and took pictures of the lymph nodes. Also instead of doing a punch biopsy I think he said he was doing a incisional biopsy and took more skin and tissue than a punch biopsy. He said that this biopsy would be better and more accurate at detecting IBC. I dunno, I hope so. What scares me is both doctors that have looked at my discoloration has been clueless of what it is. They look extremely puzzled.
Anyway, about the biopsy it wasn't too bad, I didn't even feel the shot but I did feel a little sting when he started to cut. I have had sharp pain in the area since but they gave me some pain meds to deal with the pain for the next couple of days. I will know my results on Tuesday so I will keep you ladies informed. I guess on Tuesday I will know if I become a regular on this site. I just pray that if there is cancer that God will let it show in my biopsy and if not then to find out what is going on. Thank you all for your support and answering all my questions, all of you have been so wonderful and I greatly appreciate each and every one of you.
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Silvercrush--this weekend must be extremely anxiety producing for you as you await your results. Hope you are hanging in there!
I was dx at age 39 and my IBC literally appeared overnight. I saw a bit of redness and thought it was a rash or irritation from my hubby's beard on my left breast and a week to the day later it was huge, red, swollen and I had a 6cm+tumor that popped up that quick! I did have lymph node involvement but couldn't feel them. I had an initial biopsy with a radiologist during an ultrasound. I had a skin biopsy with a port insertion the next week by my breast surgeon. IBC is a clinical diagnosis--if it walks like a duck, quacks like a duck, it is a duck. They pretty much new right away what mine was. My official diagnosis was IDC and with skin mets it makes it IBC. Although IBC is bad, it really depends how quickly they catch it and treat it. Mine was caught quickly--I went to the Dr immediately and within a week had the biopsy results and was getting a port and starting chemo. You can click on my name and see my profile as to my chemo, treatment, etc...
Please know that you are not alone. Hopefully you have a great support system at home and you have a support system here too!
Blessings and hugs
Carole
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Silvercrush,
Prayers for benign results!
Hugs, Lori
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Thinking of you too--thanks for touching base on FB--so glad to see your beautiful pix!
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Thank you so much everyone for your thoughts and prayers. You ladies are so amazing. The only downfall if it doesnt come out to be cancer is not having you women as my cancer support team, whoever is newly diagnosed is so lucky to have all of you.
I am nervous about tomorrow. I have been told by God that I should not fear and if this is indeed the path He wants me to take then I will accept whatever He has planned for me. I might not be fully ready but more than I would have been a couple of months ago.
The sweetest thing is my mom bought and gave me a breast cancer awareness bracelet, pin and phone charm on Sunday after church service and she even bought one for herself. I was so excited! I also started making homemade breast cancer pins a few months ago, it was fun to do and I want to continue to do that.
Anyway, thank you again to everyone, you all will always be in my thoughts and prayers for the battle you currently face. Keep up a good fight no matter how hard it gets(I know easier said then done). You have all been an inspiration to me in my life and I know you can be in many other women that are either facing the fear of having breast cancer or have it.
I will let you know the results tomorrow
Gentle Hugs,
Robin
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Robin,
I am continuing to keep you in my prayers for benign results today. Let us know!
Lori
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Silvercrush - what did the doctor say today?
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Hi ladies,
Sorry I'm just now able to get on here to post results, my day has been so busy with being at my moms house, my son had a performance at his school and a friend of mine came by and he left not too long ago.
Well my results are.... inconclusive? What is this? Has any of you had an inconclusive biopsy? How many biopsies does it take to get a proper IBC diagnoses, more than one? Does your swollen lymph nodes have to be biopsied because I didn't have a biopsy of my lymph nodes. My surgeon wasn't even there today! It was a nurse that saw me and she is the one that told me. She said she doesn't know anything, she said she was just suppose to tell me the results. She didn't remove my stitches because she said they weren't ready come out today as they thought they would be. She didn't answer any of our questions. Im kind of frustrated. Is there some areas of the affected breast that come out inconclusive, benign and malignant? Like spotty areas on the same breast that have different results? I heard it can be benign in one area and malignant in another spot. Kind of like a gamble on where you do it? I guess I don't understand inconclusive and the nurse didn't tell me.:( I am suppose to go back Monday to get my stitches removed and to talk to the doctor. I thought today I would get my answers but now I have to wait yet again to talk to the surgeon.
Oh I did forgot to say that the nurse did say that the skin or tissue(I cant remember which) in the biopsy was tan....I dont understand that either. If they can see that then why is it inconclusive? What does tan skin or tissue mean or represent? -
Dear Silvercrush---TOTALLY UNACCEPTABLE...that's what I thought as I was reading your post. The surgeon isn't there? A nurse gives the results and can't answer any of your questions? UGH! I would be on the phone bright and early tomorrow morning with the surgeon's office demanding to talk to someone who can answer your questions. You aren't going to get any resolution til you find out some definitive news.
Ok, so my rant is over....it could be too that the surgeon isn't worried and everything is ok--BUT you still need answers.
Hang in there
Blessings and hugs
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I am totally understand feeling EXACTLY the same way your feeling over it...SUPER frustrated! I couldn't believe he wasn't there! My husband was extremely upset about it as well! If this wasnt a good biopsy then I hope he is planning on another biopsy...I'll do it again and again until I do get a definitive answer. This is depressing
Hopefully it is benign and Ill do whatever I need to get an answer.
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That makes no sense. I would also be on the phone to talk to someone. Did you get a copy of the path report (always ask for copies of results, BTW)?? If you do have a copy, what does it say? If you do not hav a copy, go get one. Ugh.
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Robin,
I had 6 lymph nodes that were marked abnormal with metabilic activity measuring upto 6.0 in SUV value. I don't know what that means. I read that one was 1.6cm. They did biopsy of 3.5cm tumor I had along with IBC, but did not biopsy the lymph nodes. Due to metastasis in the bones, my onc chose to do chemo & hormone therapy only. 8 months later, my Pets scans show great improvement from chemo (TAC). My bone mets are healed and no abnornal lymph nodes showed up on the scans, nor the tumor. I'm glad I did not have to have the complications of surgery. I'm now on Femara & continue to take monthly Zometa infusions to stabilize the bone mets. So far Femara is causing quite a bit of bone pain and makes it difficult to get up and move, but it is supposed to keep the cancer from coming back. My onc may have to switch me to another AI inhibitor. He's running another bone scan soon to see what our next step will be. Your ER & Her2 status will determine what drugs will be effective for you. I'm ER/PR +, her2-. You should have a doctor that treats breast cancer read your scans. Good Luck to you and hope you get the information you need in order to take care of yourself.
Terri
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Dear Silvercrush,
I just want second Gg08's recommendation - my original biopsied material was sent overnight from the local laboratory here in MS to MD Anderson so they could test (I was stage iv from get-go, but don't have IBC). They have a special clinic focused on ibc - here is their link
The self-referral link is on that page also.
Will keep you in my prayers.
Becky
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Just checking on you Silvercrush....any more answers today? I hope so! Hope you are hanging in there!
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Hey everyone. Well, I called my doctor's office yesterday and well they told me that he was seeing patients and that he would just have to see me on Monday to answer my questions. They knew I was upset and oh heck I am too!! I asked the nurse what inconclusive results meant and she said that it means that the biopsy wasn't decided if it was or wasn't cancer but it would probably be just benign. Are you serious?!?!? Geez, I just want to get to the bottom of this so I can ease my mind. I don't know what he will want to do next. I did have them fax the pathology report to my husband so I could see it for myself and it says results were inconclusive. Im thinking really, thats it?! It said that the clinical history was inflammatory breast carcinoma and unknown neoplasm behavior. Is that what the doctor is saying? I have a orangy peel look it the discoloration but its not thick. The ultrasound showed mild thickness in a small area on the other side of my breast from the first lady that did my ultrasound. Can you have peau de orange without thickness? I am frustrated. Should I ask for a needle aspiration biopsy on my swollen lymph nodes that they claimed was at abnormal palpation size? I wonder if that would be a good thing to do at ruling out ibc. Let me know if getting the lymph nodes biopsied would be a good thing to do. Also they said that there was a cyst under the problem area so should I ask to get that biopsied as well? Let me know your thoughts. I want to go to another surgeon since this one sucks but I cant because I am going through a charity breast cancer place that pays for everything and tells you where to go...I dont have a choice on where to go, they choose for you, so I'm stuck with him.:( I dont have insurance so I dont know how I would go to the MD Anderson center, plus Houston is like 5 hours away from me. Im trying my hardest to be patient with all this but its feels like I'm running low on it. Thank you everyone for being so sweet and patient with me, sorry I have more questions
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Silvercrush,
I've been reading through your posts and just want to say, I'm so sorry you're having so much difficulty with the biopsy process. I can't imagine how frustrated you must feel. I truly wish you all the best.
I'm sorry to interject like this, but wanted to know if any of you who have been diagnosed have experienced symptoms that seemed to get better for a while. I have a friend who was having symptoms that sound like IBC (itchiness, redness, swelling, tenderness, areola changes) for about 3 weeks, and just the past week or so, seem to have subsided somewhat (except for fullness, tenderness, and areola differences). Just wondered if anyone could give me guidance for her. She went for U/S today and the tech said if it was IBC she would be able to see "thickening of the skin" on the U/S, which she said she didn't see. I got the distinct feeling they were being very dismissive. Anyone have personal experiences with symptoms coming/going? Does there have to be "thick skin" findings on U/S for it to be IBC?
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Hi Gg08 - thanks for all that great info. I'm going to look further into Pagets. So far, it seems like the docs aren't worried about IBC for her because there hasn't been any thickening of the skin.
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Hello ladies, I am so sorry for the delayed response. Its been crazy busy!
I went to the doctor last week and was not happy with him whatsoever. He told me his interpretation of inconclusive results is that the sample cannot be determined if it is malignant or benign but he didnt want to cut all over my body so he is deciding to send me for an MRI. My husband even stressed the point that he was not happy with these results and the doctor came back with...."well what will make you feel better, do a mastectomy and it come out benign? It sounds like someone has scared you into thinking you have cancer." Yep...thats what he said! I told him first off, I just want answers and that I am trying to be a strong advocate in my own health and I firmly believe I am not being crazy for being that way. I also told him that I am not going to feel ok about this until I have someone tell me benign or malignant. I told him cancer runs VERY heavily in my family and yes it is a fear and I have the right to be with all thats going on with my right breast! This doctor is unbelievable! If the mri comes up suspicious then I am going to talk to someone at the bridge breast(the place that is paying for all of this and sends you to these doctors) and requesting I be sent to another doctor. First because, he is NOT observant, he felt my swollen lymph nodes and saw them on the ultrasound the same day as my biopsy and then last week when I went in he acted like like he didnt know about it. Secondly, I was having super sharp constant pains in my biopsy site and had called them to request pain medicine because the nurse had told me to do so if I had some bad pain and they ended up giving another patient with my same name(last name spelled differently) MY pain medicine on accident and they argued with me saying that they already requested it to be filled and it was at the pharmacy. So I had to call their after hours answering service and tell them that I have received nothing. They NEVER apologized for that. Lastly, when I went in this last time, when he was done with me he left the room and guess what he forgot.... to take out my stitches! He said he thought the nurse took them out when I went in the day I found out my results of my biopsy. Heres the kicker...he was JUST looking at my breast and he didnt notice that they were still in?!?!? This doctor is awful! I read reviews on him and I didnt find one good review on him...they were all criticizing him and his nurses. Whew, sorry about that, thanks for listening to me vent, I am just super upset about this and my experience with this doctor.
Anyway, so my question now would be about the mri, what will it be able to reveal? Can it determine cancer? Can it see if the lymph nodes look suspicious for cancer? Has another had an mri that detected their cancer? Anything else I need to know about it? Sorry yet again for the questions. I only have you lovely ladies to ask since my surgeon is an idiot
Thank you so much again. I hope you all are feeling ok and you are still in my prayers.
Gentle Hugs(=^o^=)
Robin
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Hi Silvercrush,
Man, you sure are dealing with a lot. That doctor sounds like he is either very rushed (obviously he is not checking charts properly before appointments!) or just a jerk. I think it would be wise to seek another doctor.
I first came into all of this with one tumour. They sent me for mammo as part of routine testing. Sometime after the mammo, I read that they are only 50% accurate in women my age (33). So I requested an MRI which probably saved my life because they found another tumour way back near the chest wall. Original plan was lumpectomy, now I'm having mastectomy. If I hadn't requested the MRI, I probably wouldn't have found the other lump until it was much too late. So, I am an advocate for MRI for sure! My doc said that sometimes docs are reluctant to use MRI because statistically, out of 1,000 MRIs, 300 will come back with suspicious areas, but after biopsy, only 1 out of the 300 will be cancer-related abnormalities.
In your case, I'm not sure an MRI would pick up IBC if that's what you're worried about. I think biopsy is the only way to know for sure. But it's not a bad idea to get a baseline MRI, and then you'll know exactly how everything looks inside the breast and you'll have a basis for comparison if things ever change.
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Hi what every happened to slivercrush?
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the pictures can't be seen it's not showing.
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