BIRAD5 lump turned out to be atypical lobular hyperplasia
Hi. I found a breast lump and while I was waiting for orders for tests I was thrown from a horse and fractured my pelvis in five places! This month has been awful. This all happened in the midst of me moving from Michigan to KS.
I always had palpable areas of dense breast tissue on both breasts. I'm 46. I had a hysterectomy when i was 37 and I was on a low dose of estrogen until about 6 months ago. I used patches and when I got hot flashes I'd put a patch on and take it off as soon as the flashes got better. The patch was off much more often than it was on. I went totally off the patch and started dieting at the same time. So I lost a little weight and my boobs deflated, and that's when I noticed that the dense breast tissue on the right was much larger than on the left. So I went in for mammogram and ultrasound and the radiologist found a suspicious mass under the breast tissue. The radiologist told me she was 98% certain it was cancer, and they gave me books on mastectomy and surviving breast cancer and started the process of sending referrals to the cancer team. Then she did core biopsies of the lump and some nearby microcalcifications and did a stereotactic biopsy and a few days later I got the results - atypical lobular hyperplasia, not cancer. I've been reading up on it and you don't usually get a lump with atypical hyperplasia. That has me concerned.
Now I'm in KS, waiting for a referral to a breast surgeon. The radiologist from Michigan said I definitely need an MRI because there were "a lot of suspicious areas" that were not biopsied. I think the suspicious areas are clusters of microcalcifications. She told me all those suspicious areas will have to be removed.
My lump only looked like it was about 1.5cm on ultrasound but it feels much larger than that. I'm probably just feeling the dense breast tissue over/around it, I don't know. I imagine they would want to remove the whole lump and that would leave my breast disfigured, plus they have all those other areas that have to be removed.
I imagine the best thing to do would be to have a mastectomy and get reconstruction, and do the other breast to match, right? I'm going to KU Med Center and they have a great breast cancer program. They're accredited. The area in MI I came from was in the Upper Peninsula, which is very rural and they don't really have much in the way of medical care.
My appearance is important to me. I don't want a lot of scarring if I can avoid it, and nipple sensation is important to me too. I've been looking at photos of women who've had implants and DIEP and worrying about what I should do.
Many people in my family have recently passed away from cancer (lung and breast). All of them are on my dad's side of the family - 15 or 16 with cancer recently, including second cousins. My aunt has HER-2 positive cancer and she's one of the main reasons I want to make absolutely sure I'm being aggressive enough. 15 years ago she had a lump which, like mine, turned out to not be cancer. They decided to just watch it. About 5 years ago it turned cancerous and she had a lumpectomy but the borders weren't clear so she had to have a revision - then a second revision -then finally a mastectomy. By the she had mets to her liver, bones, and lungs. I don't want to end up like my aunt 
Comments
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Dear StaceySue, Wow! So sorry to hear your story but so glad that you reached out for support and information here. While you are waiting for some response you may want to check out this topic on Atypical Hyperplasia also posted in the High Risk Forum and also you may want to read Certain Breast Changes on our website. Stay connected here and keep us posted. The Mods
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Hi!
I hope you find out what's going on in the other concerning areas soon. Just some observations about surgical options..... If you value nipple sensation, then a mastectomy may not be for you. Many women are pleased with the appearance of their reconstruction efforts, but preserving nipple sensation probably won't happen if you choose to have a mastectomy. Secondly, lumpectomies aren't necessarily "disfiguring." I had a lumpectomy, and there's only a small scar from where the surgeon removed tissue. I don't feel disfigured, plus I kept my nipple and its sensation. Best wishes to you!
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KU Med is a terrific cancer hospital. You will be well cared for there and get good advice. Mastectomy with or without reconstruction, is a serious surgery and in my opinion should be used only when absolutely necessary. I had two breast surgical consults along with a consultation with the plastic surgeon. When I had all the information, I was able to decide on lumpectomy and I am pleased with that decision. I would be surprised if the docs at KU Med recommend mastectomy....they will probably want to reevaluate your pathology and do more testing....US, MRI, etc. before they make a surgical recommendation. Good luck.
MsP
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I just realized I hadn't put this information in my original post, so I added it.
Many people in my family have recently passed away from cancer (lung and breast). All of them are on my dad's side of the family - 15 or 16 with cancer recently, including second cousins. My aunt has HER-2 positive breast cancer and she's one of the main reasons I want to make absolutely sure I'm being aggressive enough. 15 years ago she had a lump which, like mine, turned out to not be cancer. They decided to just watch it. About 5 years ago it turned cancerous and she had a lumpectomy but the borders weren't clear so she had to have a revision - then a second revision - then finally a mastectomy. By the she had mets to her liver, bones, and lungs. I don't want to end up like my aunt
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StaceySue, I'm sorry to hear about your aunt. And I'm sorry that you need to be here.
You may want to make an appointment to meet with a genetic counselor at KU when you visit. With your family history, it may make sense to have some testing done--but a genetic counselor can help you sort out what testing makes sense. (When you make that sort of appointment, they usually send you a packet of materials. They'll tell you what they need to know about your family members and their medical histories. It can make for some interesting phone calls to try to collect the information they want. The more information you can supply, the more helpful they can be in recommending genetic testing.)
In either case, it could help you and your medical team make decisions about your treatment.
HTH (and please let us know how it's going for you!)
LisaAlissa
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Dear StaceySue2U:
Don't rush to have a mastectomy, especially if nipple sensation is important for you. Atypical Lobular Hyperplasia is benign. It increases your risk for bc but it is not a malignancy. If you have a lumpectomy, you can always have a mastectomy in the future. You cannot go back and change your mind if you have a mastectomy. I do not know whether doctors will even perform a mastectomy for ALH. I really doubt that they would consent to surgery that is so draconian if there is no malignancy.
Have genetic testing to see whether you carry any genetic mutations for bc. The results will let you know whether you need a mastectomy.
Have an MRI to see the extent of the suspicious areas and have those areas biopsied if necessary. Don't rush to assume that these areas are malignant. 80% of suspicious areas are benign.
Lumpectomies do not necessarily cause disfigurement.
I have had 4 excisional biopsies prior to my bc dx. I also have had 8 core needle biopsies to date in addition to the excisional biopsies. After my bc dx, I had a double lumpectomy where 12 cm of tissue was remved. (14 total plus my SLNB making it 15 total.) My plastic surgeon was phenomenal. My breasts are gorgeous and I have amazing nipple sensation. Yay! My daughter had an egg sized (sorry but I don't know the cm size) fibroadenoma removed 3 years ago when she was 17, and her breasts look amazing. No one would be able to tell that she had so much tissue removed.
Last month, I was dx with ALH. (1.6cm X 1.3cm) My RO told me that since I am taking anastrazole, that I do not need to do anything about the ALH. He told me to, "stay away from doctors". My MO told me that if I had a lumpectomy to remove the ALH that more ALH would probably be found. What I didn't list in my signature is that in addition to the ALH that was just found last month, I also have been dx with flat epithelial atypia, PASH, and even more ALH. More than likely, I have additional areas of LCIS and ALH that I am not aware of.
If your MRI pathology report recommends additional biopsies then have them so that you know what you are dealing with. At that time, let your doctors make the recommendations. Use the genetic testing results to guide you as well. Go for a second opinion.
I concur with the posts of the other ladies here.
What you are going through is extremely frightening and anxiety provoking. It makes it much worse because of what happened to your aunt. A dx of ALH is terrifying. Also, you just had a serious accident and got badly hurt plus you moved across the country. That is STRESSFUL!! Don't rush to have a mastectomy. Don't let fear guide you. (Easier said than done.) Trust your doctors.
I am sending you hugs and I am hoping that your other suspicious areas are benign (meaning no atypias).
Good luck. Happy New Year!
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Also, get your pathology reports.
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I agree with 614. There is no need to rush with a diagnosis of ALH. It probably feels like an emergency, but it is not. It is a benign condition, that does increase your overall risk of invasive bc, but it is not cancer in and of itself, and does not require bilateral mastectomies. While you should certainly remain vigilant in your breast screenings (exams and mammos), right now you probably need to focus on healing up from your pelvic fxs, Wishing you a speedy recovery.
Anne
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Wow. Thank you all so much. I'm having such a hard time getting it into my head that I don't actually have cancer. The radiologist told me it was cancer and they even gave me the books on mastectomy and surviving breast cancer, and referred me to a breast cancer center. I went through so much after I got that news and then it took days to get the biopsy results back - I had already worked through everything in my head and gathered up my courage for chemo and surgery.....and it's not cancer. The stress I've been under is immense. I can barely walk and I can't work. I'm an RN, believe it or not....I know I'm not acting as calm, cool, and collected as a nurse should. I do home health and hospice and have been with a lot of people when they died from cancer. Now I can't work because of the pelvic injuries.....I don't have a job to go back to, anyway, because I was in the process of moving when all of this happened. My favorite uncle recently died of cancer, too. He was more like a brother to me than an uncle, because he was only 10 years older than me. He was my dad's best friend. They were so close, they even worked together.
The more I hear "it's not cancer," the more it will sink in I guess. It's good to hear that the lumpectomies won't disfigure my breast too badly. Thank you so much.
Edited to add:
You know what? I'm going to vent. I have not vented to anybody yet and I've been going out of my way to be pleasant and cooperative but this is RIDICULOUS! You don't just tell somebody they have breast cancer and then take it back!! She told me that the biopsy was "just a formality" and that the cancer was "probably throughout the entire breast." How can you say that to a person if you're not 100% certain it's true?!
Not only that but the way the doctors in Michigan have treated me with everything . . . . first of all I was knocked unconscious when I got thrown from that horse and woke up on the ground unable to move my legs. My friend had to get me on my legs and pivot me into her vehicle, and I was drifting in and out of consciousness the whole way to the ER. The ER doctor (who, by the way, I worked with at another hospital that he got fired from) basically accused me of faking not being able to move my legs. I said "I've lived here for over 23 years and have been to the ER maybe 4 times. I'm not a drug-seeking frequent flyer! This is the worst pain I've ever had in my life and something is wrong!" He basically just smirked and rolled his eyes at me. He got CTs and no fractures showed up so he sent me home with the diagnosis of "Fall from Horse" and "Thigh pain". Nothing about inability to ambulate, nothing about a concussion. I had to be wheeled out to my friend's vehicle and I vomited the entire way home with my friend driving. Two days after that I went to see my primary so she could feel the breast lump and order a mammogram and I told the nurse about the severe pelvic pain I was having after the fall from the horse and was told the doctor would have time to look at the lump or talk to me about the injuries but not both. I have never gone to my doctor for anything other than my routine yearly visits. It's not as if I have been a demanding patient. So I chose to have her look at the lump and the doctor literally spent less than 5 minutes with me and it wasn't even my doctor, it was one of the other doctors in her office. The mammogram tech showed me my mammogram and said it looked just like the previous one and I was so relieved. Then I tried to go back to work and made it through 3 patient visits, but at the 4th visit I suddenly couldn't move my leg without excruciating pain and had to go to the ER again and a different doctor saw me and said I needed an MRI. That was my last day of work. A few days later the MRI showed 5 nondisplaced fractures and several injured muscles and ligaments and during all this I got the call that my mammogram was abnormal and then all the tests and being told I had breast cancer.....and now I don't have breast cancer.....
Thank God I'm in KS now near a real medical center with good doctors.
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The whole situation is terrifying and traumatic. Being told that you have cancer is awful. So is having ALH because it increases BC risk. That, plus the fact that you are badly injured and your life is in turmoil from moving makes it worse. Also, you have had many significant losses. Of course you are very stressed. Don't beat yourself up. Go to an MO for a tx plan. It will give you peace of mind. Good luck. Hugs to you
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Dear StaceySue:I just read your addendum.
That is AWFUL!
The same thing happened to my mother when she fell. She was in excruciating pain and they told her that she was fine and to follow up with her PCP. They sent her home from the ER. She went to her doctor later in the week who sent her for additional tests. It turned out that her shoulder was shattered and she needed 12 pins/screws. The bone fragments were laying on a nerve which made the pain even worse. It was inhumane to have sent her home. It sounds exactly the same as your hip situation.
My mother is extremely good with math. She was in the ambulance after the fall and she was listening to the paramedics figuring out how much pain medication to give to her. She said to them that their calculations were not correct. They "blew her off" as an elderly lady. They gave her the meds and asked her if she felt better. She said, "No". Redo your math. They did and they realized that she was right. They gave her too little medication. Thank God that it was too little and not too much or she would have died.
All along, her hip was bothering her. Doctors said that she was fine. Months later, she finally was able to get a doctor to prescribe a hip MRI. The results showed that she had 2 healed fractures to her hip from the fall months before.
She went for extensive physical therapy to her shoulder and she can move her arm. Her doctors are amazed. They never expected her to be able to move her arm again. Although her hip is healed, she still has trouble walking now and she is in a lot of pain. It is 2 and 1/2 years after her fall. Maybe she would be fine if they had noticed that she had a broken hip and treated her for it instead of letting her walk on a broken hip.
I am sorry that you are going through all of this. I can sympathize with a PCP saying that they can only treat for one thing and that you must choose. I have had that experience too. It is uterly amazing.
I am praying that your hip and concussion were treated. It does not sound like anything was done for your concussion. How can a hospital let you go home after head trauma when you are actively throwing up? That plus the fact that the incompetent doctor misread the tests of your hip and/or did not order any tests for you. How dare he say those disparaging remarks to you. I am so sorry that you are going through this.
I cannot fathom how a radiologist can say that you have bc without knowing for sure. The radiologist must wait for you to have biopsy and for the pathology results to come back before anything can be stated in a definitive manner. To say that there is most likely, cancer throughout the entire breast is incomprehensible. Many times a doctor can tell whether a lump appears malignant. However, there are benign areas that mimic malignant tissue. That is why no doctor can know for sure until the pathology report comes back. It can also go the other way where the area may be malignant when the area was presumed to be a benign suspicious area. That is the reason that biopsies are done.
I am glad that you are venting.
If I were you, I would make an appointment with a MO so that the MO can read your pathology report and give you advice on how to proceed. ALH needs to be discussed with the MO so that a plan can be created. You may be put on a high surveillance regimen of mammo's/sono's every 6 months and you may be put on preventative medication such as tamoxifen or an aromatase inhibitor. The doctor may recommend that you see a bs so that you can have an excisional biopsy to remove the ALH to be sure that no cancer is present along with the ALH. You may also want to send your films to a radiologist in your new area so that a second opinion can be given regarding reading your mammo/sono. I am saying this because I don't understand how a radiologist could say that the cancer is probably throughout the breast if no other suspicious areas were found. I would not feel comfortable trusting the recommendation of the radiologist who read your report.
I hope that your hip feels better quickly, that you get settled in your new home, and that you are able to find a job and go back to work soon. I also hope that ALH is the extent of what is going on in your breasts and that you can "wrap your head around" the fact that you are actually cancer free. You were put through undo and pointless stress and anxiety for absolutely no reason. No one should have to endure that.
Good luck and Happy New Year!
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Hi, sorry I haven't been on in a month. Life has been kind of crazy, with everything going on.
614 I can identify with your mom's situation but it sounds like she had it even worse than I did! Poor lady. How old is she? Thank God they didn't give her too much medication. Everything that happened to her and I makes me even less trusting of the medical profession - which is scary, because I'm an RN. I hope she's getting around alright and not having too much pain.
I have minimal cancer knowledge or experience, even though I'm an RN. I've avoided oncology like the plague. The only time I've taken care of cancer patients is in home health and hospice, or when they came into the ICU or ER for other things. They all got their treatments at their oncology offices and I've steered clear of learning much about cancer because it's the one thing that scares the crap out of me! I've unhooked chemo and flushed lines, helped people to be comfortable with their pain and other symptoms, but never learned much about chemo or radiation.
I had my first appointment at KU Cancer Center yesterday. They re-did my mammogram and ultrasound and I got a 3D mammogram this time. They said the images from the other places were just awful. They agreed that it does look quite suspicious on the new ultrasound and mammogram, and this mammogram showed two little starfish-shaped areas that i don't think the last radiologist saw because of the poor images. The areas are only a few millimeters. At the last place I had 2 biopsies - the stereotactic biopsy of microcalcifications showed atypical lobular hyperplasia and the ultrasound guided biopsy of the lump showed normal breast tissue. The breast surgeon says the negative biopsy results are "discordant" and she wants to get a new biopsy on the 26th and get the little starfish areas this time. She says there are a bunch of other microcalcifications in a linear pattern and if the biopsy comes back negative for cancer she wants to do a lumpectomy to remove those areas.
I'm holding out hope that the biopsy will come back negative.
What's got me confused is that the biopsy of the lump showed normal breast tissue. What's normal about a lump? It wasn't there before and it's there now, and I have atypical lobular hyperplasia in the calcifications but not the lump? Then why would the lump be growing? I'm assuming it's the shape of the lump that's so suspicious because it has spiculated margins, but I'm positive the last radiologist got a biopsy of the lump even though she didn't get those little areas she probably didn't see. Of course now it looks much worse on the US than it did before because of the large hematoma I got with the last biopsy. I had a lot of bleeding last time and they had to hold pressure and send me home wearing a pressure dressing that I had to keep on for 24 hours. It scared the crap out of me when I was watching them do the ultrasound yesterday because everything looked so different but my guess is that the hematoma just hasn't completely absorbed yet.
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I haven't been on in awhile and for some reason I decided to check here. I am sorry that they are putting you through the ringer. It sounds like your old place was the sort that end up causing women more problems than good. It is awful that they didn't explain things to you better. A biopsy with "normal breast tissue" could come as a result of them making sure to take plenty of samples and getting around the edges or margins. Or it could come from the person who did the biopsy totally missing the mark and doing a biopsy on the wrong spot.
Frankly with a BIRADS 5 I doubt that most places would tell you that you do not have cancer without removing the entire lump for biopsy. So while I pray that you don't have cancer (and hearing that you don't with a BIRADS 5 should be a wonderful if confusing thing.) it sounds like your new doctor isn't so sure that they weren't premature in making that statement. Good for her wanting to take every precaution. Remember in the future nothing but a biopsy can tell you for sure that a suspicious spot is cancer. However with a BIRADS 5 everything they see on imagining points to cancer so I do think that it's best that they give you info to prepare. I know that I would want it. And being high risk in so many ways I think it's best to explore our options for the future if needed. No sense sticking your head in the sand when you can be proactive.I'm getting ready to go back for a follow up US on some "Probably Benign" spots. It's scary because my cousin had one of those that turned out to be cancer. Her doctor didn't want to biopsy but based upon family history she insisted. (And her, my moms, side isn't my highest risk side) I debated insisting on a biopsy on this spot but I'd had 2 near here in the past and both were low risk benign spots. I had just come off a large excisional biopsy where they found high risk areas in ducts and I just wasn't in the mood for even a needle one. I do have a rather large dent in that breast and it's not as perky as the other. (If you can call that one perky at my age.
) The doctor said that she could fix it and make it look the same as the other one, but somehow that seems rather vain to me when I have friends and family who had mastectomies due to cancer. I won't lie it does bother me when I'm naked, but it's not so bad that I think it's worth the risk of surgery. And with a bra on no one would ever be able to tell even without padding. (Which I don't use.) I was worried about loosing sensation since they removed ducts, but it's all good. I am so sorry that you are dealing with this. I hope that you get good news again when you have these new biopsies. It would be nice to hear about someone who beat the odds.
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WolfsLady, thanks for responding. I'm praying hard that this comes back negative. This is an awesome cancer center and I'm so glad I moved here. They have three breast surgeons and lots of other specialists. Where I came from they didn't have any breast surgeons or breast specialists, just a plastic surgeon and some general surgeons and a regular oncologist. I don't want to have to continue dealing with this for the rest of my life. I told the surgeon I wish I could just get mastectomies and beautiful reconstructions and be done with it but she says if it turns out to just be ALH, that would be totally inappropriate.
I know it sounds shallow but I am sick of losing my sexuality. My body changed so much after my total hysterectomy. I gained so much weight and my libido decreased and I have all the problems associated with low estrogen. I at least want to have beautiful breasts and be desireable to my husband. I've noticed he's avoided the breast entirely since we started worrying about cancer.
How many biopsies have you had to have? What makes you high risk? Do you have a big family history of breast cancer?
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Well it turned out to be cancer after all. The repeat biopsy shows IDC. I'm sorry if I gave anybody false hope.
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Stacey I just skimmed your whole story, it's really terrible. I'm so sorry for you. I wonder why with 15 people in your family with cancer you weren't sent for genetic testing already? How big is your IDC? Will you be getting a mastectomy? I'm guessing yes because of all the cancer deaths.
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Thanks, Marijen. I'm going to be sent for genetic testing. Since I've already decided to have right mastectomy and left prophylactic mastectomy and be as aggressive as possible, and I've also already had a hysterectomy and both ovaries removed, the genetic testing won't affect my treatment. I have hundreds of family members who would be affected by the results of the genetic testing though. Our family is very prolific. The possibly Jewish great grandparents had 7 kids and each of them had 7 kids and so on.....
I have 2 lumps and the biggest is about 3.5cm and so far she's saying stage IIA, Grade 2 like you. Maybe I'll get lucky and also be ER+/PR+, HER2-. I also have an 8cm line of microcalcifications that they need to look more closely at. I'm having an MRI in a few days.
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