Need advice please 1st appt w PCP since lumpectomy
Ok this all kinda went in not the normal order of how things are suppose to go. I am 45 had diagnostic mammo and US in early January. Have always had very dense heavy fibrocystic breasts. Suppose to go every yr since I was 40 but last yr I just spaced it out. In October began having pain in L breast and pain up into L shoulder blade saw PCP she thought it was just hormonal but I disagreed since why would only one breast hurt and I had a total hysterectomy in 1997 she couldn't tell since I'm so fibrocystic So the night before my mammo my L breast starts spontaneously bleeding bright red blood no warning nothing had touched it just felt my shirt was wet looked in my bra and omg scared the hell out of me. Called my PCP next am before I had test done just do she knew and if she wanted anything else done shed have 6 hrs to send over orders. Told the tech about the BND she lets radiologist know they do a few extra images of that L breast then I go across the hall for an ht long ultrasound which hurt like I've never had one that painful before I know they are trying to find anything to explain bleeding. Radiologist comes in after days everything is fine nothing suspicious BUT if the bleeding continues you see a surgeon ASAP
So of course after a few days of reading what BND could indicate and it keot randomly bleeding I called around and took the 1st appt I could he was a general surgeon in a large practice nurse assured me he could take care of my problem he does breast surgeries at least twice a week. So I meet with him he says its prolly nothing your imaging test are all normal just give it a few months I'm like no way I want to know why its happening what's the best way for u to figure it out ? He suggests removing the duct that's bleeding and having it biopsied . Awesome how soon can we do this had surgery 4 days later. Wake up in horrible pain nurse says something like well lumpectomies are painful hun especially when you have alot of tissue removed ?? So I'm a little confused but thinking ok if he saw something abnormal its a good thing he removed it .just nothing could have ever prepared me for that intense pain had 3 c sections and a hysterectomy I know you are going to wake up in pain but I ended up crying cause nothing they put in my IV helped. He stops by tells me to calm done and I ask to be admitted scared to go home in that much pain he rolls his eyes at me says there was alot of gritty fibrous junk in there so I took it all out and I think the duct that was causing the bleeding has a very small tumor or papilloma but I didn't open it up I kept intact with the rest of the tissue and sent it to pathology. Ill call you next week Next week comes nurse calls very excited to tell me everything's fine nothing to worry about !!!! Next x I went in I asked for a copy of my path report got a little resistance why do you want it ? You wont understand it anyway !? Wow really they gave it to me cause I wasn't leaving without it and I read the dx which said 10cm x4cm x 2 cm tissue sample... Dx atypical ductal hyperplasia none at margin then some other stuff that I know now isn't significant. So after that I started searching and getting upset. I know I should be and I am very grateful it wasn't cancerous but it would have been nice to know something was not quite right. At my last appt last week the surgeon said oh that's nothing to worry about it just increases your risk of getting breast cancer but its not pre cancerous DCIS is precancerous what you have is not considered to be pre cancerous. Stop looking for trouble where there is none he says So in an hr I have to go back to my PCP who got my radiology report which said nothing's wrong repeat in a yr. the radiologist never mentions I have visible BND and her rec to see a surgeon. So now my PCP is aware of all this now but what the next step?? I really want some more imaging done I want to see an oncologist I want a treatment plan I am seen by the residents student docs at the local hospital so this isn't their forte what if anything should be done now since my mammo and US were normal I don't want to rely on those to find anything else. My shoulder pain is still there I'm still taking estrogen don't know if I should stop and oh yes my mother was given DES shots to prevent miscarriage when she was pregnant with me. So sorry this is so long I'm just lost ANY advice as to what's the next step would be greatly appreciated!!!! Thank u
Comments
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You should be referred to a high risk breast program. Many of us with ADH, ALH, or LCIS are followed twice a year with alternating mammo & MRI & breast exams. They would take your complete history, possibly refer you for genetic counseling, possibly suggest you take an aromitase inhibitor to reduce your risk. I'm pretty sure they are going to tell you to stop the estrogen asap.
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I would see an oncologist to help determine your overall risk (ADH is generally thought to increase risk to 20-25%); depending on any family history, they may want you followed more closely or possibly take tamoxifen for prevention. Most likely, they will have you discontinue the estrogen.
Anne
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Thank you so much I for your advice !! I felt like I was better prepared and it really helped me calm down, which for me is sometimes a struggle before any of this started. And I was the last patient of the day so he spent over 45 minutes taking to us -I brought my daughter along she's almost 18 and would never had let me go alone she's very mature & level headed always has been So my PCP recommends sending me to see an oncologist whom ironically I had met before and I was very impressed with her -,my oldest son is disabled he has schizo affective disorder and Aspbergers one of the only medicines that has helped control his pychosis can cause your immune system to fail so monthly blood tests for past 5 yrs he's never had any labs come back abnormal its a rare but serious side effect this past September he had a 104 fever and nothing I gave him brought his temp down took him in they ran labs and his immune system markers were bottomed out so they admitted him to the oncology unit and pulled off all his psychiatric meds that was the scariest week of my life he's only 23 and such a great kid and to see him come unglued in order to figure out what was going on just about broke my heart anyhow that's how I met the oncologist I'm going to be seeing next wk she also took the time to answer all my questions addressed all my concerns etc he was so sick they were thinking of doing a bone marrow biopsy thank God in a few days his labs came back up to normal and they slowly added his meds back on board and he continued to improve they never figured out what caused that to happen but I felt like he was in good hands with her - I got the sense that she truly cared about as much as I did about him . To me personally that's a huge factor in deciding whom I'm going to let take care of my kids especially when its as serious situation as that was So ok getting back to me and getting a treatment plan going yes my PCP strongly urged me to stop taking my estrogen but I am on a very low dose and don't take it every day when I forget to take it for 4 or 5 days I am not right in the head I have trouble finding the right words I struggle to communicate I know it sounds bizzare but its how having no estrogen in my body affects me mentally. Like I have dementia and I get really emotional over the slightest things. Now I know that might sound assinine to think I'd rather be emotionally stable and be able to be articulate vs reducing my risk of developing cancer but I am the sole caregiver for my 23 yr old son whom is doing well and after yrs of hell is making some progress and has been stable , so if I come unglued he's overly empathetic and can become very obsessive over things so much so he can become paranoid so its not his fault its just how his brain works everything is either black or white it takes alot of discussion to get him to see the shades if grey and its emotionally draining on me and my other 2 younger kids so until I know for sure what I'm dealing with ill cut back as much as I can on the estrogen but there's no way I'd stop cold turkey . I've got to keep myself together and my PCP understood he just would feel better if I stopped completely . But I don't smoke drink take drugs I eat organically and keep my weight around 120 I'm 5 ft nothing and I think I have 10 lbs of breast tissue I'm a 34 DD some bras DDD so though this may sound totally insane I'd be willing to have a BMX if I could have reconstructive either done at the same x or shortly thereafter if it meant I could still take a very low dose of estrogen. My PCP was very surprised I was willing to go to that extreme but with my sons illness I have to be stable there is no one else willing to step up plus being his caregiver is my only source of income he requires 30 hrs a week of care from medication management to protective oversight. I've been struggling for yrs raising 3 kids all by self and trying to care for him until the social worker finally told me about a little none program that he qualifies for being disabled its been around for yrs would have been helpful to have learned about it 5 yrs ago when he really hit his lowest point and had a total psychotic breakdown so yeah my stress level over the yrs has been pretty high to say the very least but he's my son and he's not ever been violent or aggressive to anyone or anything if that were the case then no I would have to had him institutionalized. I would never put my other kids safety at risk or my own if he had any aggressive behaviors . I'm very realistic and have my priorities straight at least for me . It isnt easy sometimes but it could be so much worse. So thats what I'm seriously considering given the fact that I've always had too much boobage and I'd love to be able to not get constantly asked who did my augmentation but more importantly if I can reduce my risk dramatically now by such a huge percent then to me and for my families sake I don't really want to be living in fear I don't do well with what to me would feel like a 300 lb weight on my chest , so well see what the oncologist says and go from there Thanks for letting me vent and ramble on . I do so appreciate anyone's advice or differing opinion We've all got our own battles to fight and personal reasons for our decisions For me this just seems to be what feels right . Love & prayers of hope to you all
Elle -
Elle - Sorry you are having such trouble. Hopefully the discharge will go away now and you can move forward. ADH is relatively common. I had discharge, ductal excision, from which they discovered ADH and ALH. The BS was not as concerned about ADH as he was about the ALH because it is a marker for BC in both breasts. My next stop was a genetic counselor to access my risk of BC. 50% by one model, 87% by another. I insisted on a preventive double mx. See my bio for the rest of the story.
The risk is what allowed me to get approval by my insurance co.
IMHO a couple of breast surgeries a week is not enough. You want a general surgeon who specializes in BS, and that is basically all they do. I'd look for a second opinion with a well-regarded BS or with a radiologist who works out of a state of the art clinic.
Best of luck. Don't go anywhere in your mind you don't have to go.
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