ADH Club
Comments
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Question ladies, is an excisional biopsy the same as a lumpectomy?
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The only difference is a lumpectomy has the goal of achieving cancer-free margins.
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MelissaDallas, thanks...now I know what to look forward to since I've had a lumpectomy before.
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Hi everyone
I said I'd keep you posted and I will. please do not take this as a diagnosis since every one is not the same. I went to my GYN today and confirmed it is a swollen lymph node. I will go to my Onc tomorrow and find out where I go from here. I have been having weird symptoms for a few months now severe back and leg pain and shoulder pain depression not knowing why because I have nothing to be depressed about. But I have had weird dreams and a lot of insomnia which usually I can fall asleep and stay asleep really easy. But I will continue to keep you informed of my symptoms and my prognosis if that is going to help anyone on this thread. I hope I can report back a good outcome of this situation to give people with the same symptoms hope.. I also should let you know that I have entertained and drank a little more wine than I should have, so maybe that will make a big difference. Im still praying for the best but expecting the worst. I have not been diagnosed yet..... Remember I was diagnosed with adh 1 year ago this does not pertain to everyone here.
NEEDING HUGS AND PRAYERS
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Hi Everyone and Happy Thanksgiving. I have a lot to be greatful for. So hear it goes I went to my onc Tuesday and i showed her my swollen lymph node, thankfully as soon as I found out I had adh I found uf breast cancer closest to me. Its an hour and a half away but its worth the drive. Ok so my onc sent me to radiology for an US instead of one swollen lymph node i had several. Right away i was having a lymph node biopsy. when I asked why, they mentioned lymphoma. I was numb. I have a good relationship with my onc and radiologist. So i spoke with my radiologist early in the am the next day. He promised he would keep an eye out for my results and that he did. At about 3:00 pm he called me and said NO CANCER!!!!!! and that he would not let me spend the holidays worried. My onc called at 6:00 pm way after she left her office to inform me too. I feel so lucky to have such great drs looking over me. I cant imagine days, weeks without any news. I am so Thankful. Thanks to everyone that gave me incouraging answers mellissadallas, lovinggrouches,ddw79,alicki, djabi and everyone else. I hope my results can ease someone elses worries. Lots of love and hugs
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hello,
Well done! I have my MRI on Monday, slightly panicked here... prayers are welcome
Best
Alicki
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Sending prayers your way... Good luck.. Alicki.
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Tinkerbell..glad you're ok!!!!
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Hi all...I'm not sure how often people post on this thread, but I'm new to the ADH club. After an incidental mass was found during a diagnostic mammo ordered for "lumpy, bumpy breasts", I ended up having US, then Core needle biopsy and finally an excisional biopsy and was diagnosed with ADH, ALH w/cautery artifacts, FEA, PASH, Columnar cell lesion, stream sclerosis...the list goes on.
Considering my age (I'm 37), the Breast Surgeon recommended just following up with imaging once a year. She said I could me with MO to discuss Tamoxifen, but I have pretty much decided not to take it. I'm already quite healthy other than drinking alcohol but am considering adopting a mostly vegetarian diet depending on my research.
I'm also planning to send out for a second opinion from Dr. Lagios just to be certain of my diagnosis.
Anyway, I would love to connect with others with this diagnosis. I have general anxiety disorder and have it pretty much under control (exercise helps tremendously), but I have a hard time with anticipation...and waiting.
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Hi wondewoman101
Sorry you had to find yourself here, but glad you did. I was diagnosed with adh last sept. I also have not started tomaxifen( I'm 50 ) I deffinatley understand your anxiety, Mine usually starts up a month before my appt, but It's always in the back of my mind . A second opinion is a good idea. Maybe you can get checked every 6 month. My check ups are every 6 months mammogram, next ultrasound next mri. This way if something comes up it will be cought early. As far as taking tomaxifen you can always stop taking it if the side affects are to much for you.
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Someone up thread wonered about people posting with ADH and not coming back, so I thought I'd post my final (hopefully) resuls.
To recap I had a 3D mammo in Dec followed by a stereotactic core biopsy which found ADH in left breast and recommended excision. Excision Jan 13, follow up to surgery was Jan 19 with a surgeon, the only Dr I've talked to. I haven't seen the pathology report yet but he said I'm in the clear. The cells they found put me at a slightly higher risk of bc in the future so make sure I get regular mamo's and that is it.Just to add, two years ago almost to the day (Jan 16 2015) I had a 7 lb breast reduction. It was not a good job and in addition to poor shape, huge dog ears and SYMASTIA (totally disconnected my breasts from the chest wall leaving a uniboob situation) I was left with nerve damage sensation in left breast. Basically my right breast felt more or less like a solid normal lump and my left breast felt like loose chungs of meat that when jiggled would feel like someone was hitting a funny bone. Ironically at 58 and suffering from massive breasts my whole life I tried to find a Dr. who would just taken them off. Not a true masectomy but just totally flat. I knew and had no desire to ever undergo another surgery of any kind and I didn't want to deal with them growing back (happens) or generally have to deal with breasts in old age as I've seen it, when you are old its hard to get into a bra etc. All refused. Before going into surgery for the excision I asked the surgeon had I thought of it (don't know why I didn't) could I have just gotten a simple masectomy vs. the excision. He said probably not but if I ever end up the biopsopy to excision/lumpectomy train platflorm again might be a good idea. I mean how old do you want to be to undergo such a major surgery? The breast reduction was really bad, masectomy will be worse.
I have to wonder if the trauma from the breast reduction caused my cells to start to go to pre cancerous places. I don't know. My right breast does get cramps and sore feelings, more lately but I guess that is also reduction.symastia related. They are growing:( Hopefully this won't happen again.
Very grateful for the final diagnosis, did a lot of reading and see a lot of women, young women (I'm 60) really fighting this terrible disease and I'm praying for each and every one.
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Well it's been almost a year since I posted here. Last year I had a stereo biopsy on the right with all fibrocystic changes. This year I had to have another one on the left but this time in addition to fibrocystic they found ADH. I have an appt. with the breast surgeon on Friday. I am super bruised, like half the breast bruised, way more than last year, and there's likely a hematoma in there. I had the stereo on Tuesday last week and today is Sunday.
I expect the surgeon to delay the excisional due to this, which means more time, more stress, more waiting. The spot was in a tough spot too, very far back in the breast, so that may have something to do with this. I just put on some of that Arnica gel and I'm hoping that helps. It's pretty painful especially at night. I may start sleeping with the sports bra on.
I'm feeling very very discouraged right now. I had been job searching for a year (I am employed but want to leave for many reasons) but I put it on hold in November when my mother was ill. She passed on Christmas night and then, a week later, my husband had a mild heart attack. He's ok now with stents but the stress has been unreal. On top of that I was sick with a bad cold. I'm back to work now and just want to quit my job, like every single day that I go in there I want to walk out. Now that's on hold until this is resolved.
I wish I could win the lottery so I could curl up in bed for weeks. My nerves are totally shot.
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laureneliz, I'm so sorry to hear about your past few months. That has to be really hard to deal with. Is there any way you can take a mental health day maybe tomorrow? Or sometime this week? You can use it to try to destress. Hot bath, massage, binge watching Netflix... and maybe journaling or coming up with a plan to help make you feel more in control of the situation? Or at least make a plan of how you can do something positive for your health each day?
I find that cardio 20-30 mins 5-6 days a week really helps with my mental health. If you're able to fit that in, it might help you feel like you can manage stress a little easier.
All that to say what you're going through is difficult. Just one of those is plenty to handle. Give yourself time to deal with all of it. And know that we're here for you! Please keep in touch and let us support you in any way that we can.
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tinkerbelle, thanks for the support! I've started the second opinion process and will hopefully have that finished in the next week or 2. Unless there is something new that comes up, I likely won't take tamoxifen at this time. I have clotting issues and don't want to take any chances.
Following up every 6 months sounds good. I'm unsure of if I like my current drs or if I want to find a new one. I live in Los Angeles and have top drs at my fingertips but it's hard to find the right fit.
Anyway thanks again! I'll keep you posted
Mary, thanks for following up and sharing your story. Sounds like you've been through it! I can understand wanting to get a simple mastectomy. Keep us posted on what you decide to do.
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wonderwoman thanks for the support. I met with the surgeon yesterday. She doesn't seem concerned about the huge bruise and the lump in there. However, I am having an MRI on Tuesday because they are extremely dense so she wants a better picture before doing surgery, which makes sense. I don't know yet when the surgery would be scheduled but I'm really struggling with worry. A lot. She's on vaca next week so I'll have to call the office for the results. Anyone on here had an MRI? Does it hurt? I'm already in pain.
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Lauren - I was having breast MRI's every year and mine didnt hurt. You lay face down, theres a place for your face to look down and your boobs hang through. Theres the thumping noise of an MRI but they give earplugs. Thats all you do, the machine moves and you just lay still. If theyre doing it with contrast you'll get an IV. If you are really nervous ask on Monday about something to relax you. Hang in there the hematomas and bruising from biopsies are rough.
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Thanks Poppy! That info helps.
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Lauren, how was the MRI?
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it's been a couple of months since I've posted anything here. I've been thinking about all of you here a lot today. No news from me in the last two months which is good news.
I will scroll through here to see how you are all doing. Close friend just dxed and like me another dual dx.
Good thoughts of wellness for all of us
Deidre
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MRI was good and pain free. Thankfully it came back ok, no masses. Surgery will likely be next week. I am nervous. My mother died about 5 weeks ago from lung complications related to scleroderma. I recently learned scleroderma and radiation don't mix. I have not been diagnosed with scleroderma but it's something I would need to get checked. I hope and pray this won't be necessary and I get a benign result with no dcis.
As the icing on the cake, my insurance denied the 3d mammo.
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Surgery was Tuesday. I was put asleep which was good but my nerves were really wound up beforehand. I had no idea the day surgery department would be so busy at our local hospital. It seemed like a full house. I told the breast surgeon to please remove whatever she wants and don't worry about taking too much! It's been pretty painful but I was likely still recovering from the biopsy last month, which resulted in a lot of bruising. With this, I don't have as much bruising, similar to my first stereo biopsy last year. The wire localization wasn't fun but it was pain free except for the numbing agent. I probably won't get any results until Tuesday. I was hoping they would be ready yesterday but they weren't.
I'm going to take it easy this time. With the biopsy last month, I overdid it the following weekend, which I think made the hematoma worse. I'm keeping my activities limited.
Have any of you been put on Tamoxifen for ADH? The breast surgeon mentioned it to me and set me up with an oncologist next week to discuss.
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Not on tamoxifen, but have been taking Evista for 2+ years with ADH dx. I'm tolerating it well-- no real side effects, except maybe for hot flashes, but I had those before taking it, so who knows? Anyway, you may want to discuss this as an option with your doctor if you're postmenopausal
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I'm 45 so likely in perimenopause. I also take Zoloft and it seems that doesn't mix with Tamoxifen. In all honesty though I don't think the Zoloft is working well lately..
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I was diagnosed with adh borderline dcis then after lumpectomy pathology said dcis. The surgeon said if just adh she would recommend tamoxifen. I am on tamoxifen now.
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Lauren, thinking of you today. I think you get your results right? After my surgical biopsy I was diagnosed with ADH, ALH and FEA and my breast surgeon said I could meet with an MO if I wanted to discuss Tamoxifen but she didn't recommend it for me. I'm 37 and it seems like the risks of taking it are pretty high for me. But you have to decide if that's what's best for you with your drs.
Let us know how your appt goes!
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Thank you woonderwoman for asking. I met with the surgeon yesterday. The biopsy came back benign. I met with the oncologist who suggested Tamoxifen so I'm giving it a try. I also take Zoloft though but she said that in a couple months, once I settle in with the Tamoxifen, we can look at switching to Effexor. If I switch now to Effexor, I won't know what any side effects are from since I'd be on 2 new meds.
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Does anyone here have experience with abnormal findings on their post 6 month followups? I was diagnosed last July with ADH and FEA, left breast. I turned 42, at the end of July. Following stereotactic biopsy, I underwent a lumpectomy to completely remove the tumor, which pathology confirmed was ADH. I now have to have 6 months alternating scans of T3 MRI's and mammograms. When I had my MRI on Friday, the scans on the breasts came back normal (extremely dense tissue, oh joy), however the following was found: "Indeterminate cystic lesion in the right paratracheal region extending into the mediastinum. Recommend a contrast enhanced chest CT for further evaluation." So, my oncologist called me this morning to schedule the CAT with dye. Wohoo, I'll be a glow worm in no time, at this rate! I was told that basically the MRI is showing a lesion on my sternum. O_O From what I can tell (brought up in a medical family: Mom, grandma and Mom #2 were all nurses, Dad and bro-in-law were firefighters/EMTs and aunt is an OT), that usually indicates the possibility, if malignant, of lymphoma, breast cancer having spread or bone cancer. Any experience in this area? I wasn't a candidate for tamoxifen due to my sister and dad's history of clotting factor 8 (they've not tested me?!) and I just underwent a hysterectomy in November thanks to the evils of endometreosis.
Just have the right ovary left, which had to be kept, thanks to the stupid breast cancer risk, since I can't do HRT! Grrrrr..... And I'm not a candidate for Lupron either, so endo is still rearing its ugly head. Thoughts or experiences? 0 -
I was diagnosed with adh in January and I also had a excisional biopsy along with radioactive seedto get the mass. I saw the oncologist Friday and they put me in tamoxifen as well. I'm not sure about the side effects but the only one I'm worried about is weight gain. Anyone? They are also doing a genetics test as well to test for 19 genes brca1 brca2 etc. I'm new here so hi to all dealing with the same adh diagnosis.
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I'm also new to the ADH club. Due to microcalcification clusters found in both my small and EXTREMELY dense breasts I was referred to have have a bilateral stereotactic biopsy. My left breast was found to have ADH and FEA and my right breast was found to have FEA proliferation and adjacent ADH or ALH. Now I am scheduled for a bilateral excisional biopsy on March 28. I am optimistic...as my surgeon is, that the results will be benign. Yet I am still nervous..as I am human. Lol. I SO wonder about the bilateral diagnosis... I worry a little that this increases my chances.... I just can't find a lot on both breasts being involved at once. I also worry over recovery because I wear a 5 pound bullet proof vest and work in a potentially volatile enviroment. Have any of you ladies experienced getting bilateral biopsies....
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welcome Nay811 I don't know the answer to your question, but someone else may jump in and give you some advice. Good luck on the 28th and praying for b9 biopsy results.
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