ADH Club
Comments
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Julz.. I see you are in PA too, do you mind me asking what part and who your doctor is?
I've decided to schedule an appointment with a different BS at a woman's hospital for a second opinion. I just need to have more info and more understanding I think. I'm also not too comfortable with the PS that is local to me, this isn't his specialty at all. Like I told my mom if it were one of my kids I'd take them to Children's Hospital, this is something serious and I want to know I've done the best I could for me. This whole process feels like a nightmare rollercoaster that I just want off of.
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Sparky, I go to Apple Hill in York, PA. I see Dr. Thomas Bauer through Wellspan. All he has done for 20 some years is Breast surgery for cancer & biopsy's. I will warn you that he is not young. He is at least 70. He knows his stuff though & he trained at Hopkins in Baltimore. Good Doc! I hope this helps!
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I have been reading these pages since I was diagnosed with ADH in Feb of this year. What a blessing! As many of you have noted, this is such a grey area especially relative to BC itself~ the range of potential "management" of this benign breast disease range from varying degrees of surveillance to a BPM. I need the advice and counsel of all of you. It seems when I attempt to explain this ADH to friends and family and my associated fears and anxieties most people really don't get it. But you don't have BC is what I usually hear~ here is my story. I'm 42 and a mother of 2 young children. I went through the usual biopsies to arrive at my diagnosis of ADH~ no upgrade to DCIS upon EB. Genetic testing for BRCA came back negative this week. Onc suggesting 3 month checks ~ mammo, MRI, and 2 clinical exams each year. Tamoxifen was discussed but not considered vital due to no other significant risk factors. From the beginning I was leaning towards BPM and still am because I want to take every measure I can to avoid what I feel is eventually inevitable. I'm thinking BPM with DIEP reconstruction ~ am I overreacting? I've heard from some I should in essence take ADH for a test drive and if something comes up (!) then have the mastectomy...others suggest I'll become acclimated to the constant survelliance and it will just become part of how I live my life. Am I wrong to feel so anxious about this? Should I wait? You are the people that truly understand~ I appreciate any thoughts. Thank you.
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Sunny20, I see this is your first post, so welcome!
A single finding of ADH with no other risk factors isn't reason to have a mastectomy. The vast majority of ADH cases never go on to become anything more sinister.
If you have a breast cancer gene (which you now know you don't), every member of your family has had BC, or have busy breasts with lots of biopsies with the finding of ADH each time, then you might want to consider such a drastic measure.
It's a natural reaction for us to want anything abnormal out, and when I was first diagnosed with ADH I felt the same way. It was a diagnosis I didn't want to be part of. Although there's no BC in my immediate family, both of my parents and all of my aunts and uncles have had cancer, and I have lost a number of family members to cancer. When I got the phone call after my mammogram to come back for a biopsy I was absolutely numb.
The truth is that few, if any, insurance companies will pay for a mastectomy if you've had a single incidence of ADH, and rightfully so. Mastectomies and reconstruction are very expensive, and there can be complications as it's a major surgery. On the other hand, if after a few years you've undergone 4 biopsies and excisional biopsies that show ADH, then your insurance company would probably gladly pay for a mastectomy to avoid all the other future costs.
My BS said his approach with me is to watch me closely so that if cancer were to develop, it would be caught at a very early, very treatable stage. I'm only being checked on every 6 months with mammograms, so you're getting followed much closer than most of us.
Hang in there, it does get easier.
Am I to assume you have a family history of BC since you had genetic testing?
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Regarding people not relating well to what we've been through with ADH and saying we should be thankful we don't have cancer, what I have found is that most people think it's black and white - you either have cancer or you don't. Therefore, they falsely think that if you don't have cancer it's no big deal.
They just don't understand what we go through being on pins and needles with the regular screenings, biopsies, and surgeries.
I've decided to take the opportunity to educate them about ADH and BC risks, and send the message to get regular mammograms for them and all the women they know. Even with all the BC education there is out there, I falsely thought that if you have BC there would be a lump, not realizing at all that there are BC's associated with rashes or microcalcifications that can have no symptoms at all.
I will agree though that it's frustrating that there seems to be little support out there for women who only have ADH, so come here or find other places you can talk to other women for ADH and we can support each other.
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Hi Sunny, It's good to have a group of us to throw ideas around & support each other.
Brenda is right, as my BS has already discussed this with me. Depending what my MRI & Biopsy show. He said it isn't something that is needed at this time for me unless a curve ball comes back. He has talked about the possibility of Tamoxifen though & having Mammo's every 6 months for a while. I have a slight family risk that he always looks at. For now that's all I know.
Many people just don't understand! Maybe you could explain to them that it's like walking around with a stick of dynamite inside of you.....I have these cells inside of me....One day they could collide & create a spark that will detonate that stick of dynamite. I just don't know when its gonna happen. Not that we want to trivialize it down to a scenario!
As I am typing this I just realized that I now have TWO types of cancer I have a higher risk of getting. Both DX'ed in the same year! I had a colonoscopy last summer & they found a polyp that would of turned into cancer in 5 years or less....in other words I have to go for a colonoscopy ever five years now because of that! I guess my 45 year old body decided to catch up with my Grandma status! Twice the risk for a Granny of 2!
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I so agree about being caught in this grey area of uncertainty. Other people have a way of minimizing it, or thinking that once the excisional biopsy is done and the ADH is removed , it is all "over". While I certainly realize that there are many women who have a lot more to deal with than those of us here, we are not exactly "normal" either. Add to this my tendency to worry about everything to begin with (which long pre-dates the ADH dx) and it is not a good combination. Between the BS, the onc, and my gyn, it seems I am always going to the doctor. On the one hand, I know that all the intensive screening is a good thing; on the other, it is making me insane. I have already fallen victim to my onc's overly zealous testing and once had a CA-125 test (for ovarian cancer) come back slightly elevated. This turned out to be a false positive, but it still meant MORE tests, more waiting, more anxiety. Sometimes I just cannot believe that now I say things like "my oncologist." I have always been an extremely healthy person so it is quite a blow that this word is even in my vocabulary. To add to the mix, my sister in law, with whom I have always been very close, has had stage 4 BS for 13 years, so I get an extremely magnified and detailed view of the other end of the spectrum, which is very scary. It is not an abstraction for me.
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julz4 - when I was diagnoised with ALH - it wasn't a question about taking Tamoxifen - it was highly recommended. I know you guys have probably seen me state this before - but I was tired of the tests, the worry and didn't want to take Tamoxifen - so had PBMX - and insurance covered it all!!
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Hi, ran across this thread and hope it is ok to chime in here as the voice of someone who has been there. I had excisional biopsy in 2010 that confirmed ADH and ALH. My oncologist suggested Tamoxifen but gave me the option. Being 42 at the time I decided against because I didn't want the menopausal symptoms and risk of side effects and I just knew this was a one time event. We did not discuss MX and I probably would 't have considered it anyway. Last year I had more calcifications, DCIS this time and I went ahead with bilateral MX and implant reconstruction and haven't looked back. I had already decided that even if it was "just" more ADH, I was done and couldn't handle the worry and endless biopsies from here on. My oncologist said he doesn't know if the Tamoxifen would have made a difference or not since it was only a year out. Hopefully none of you wonderful women will ever have a recurrence and will be fine from now on, and I am not trying to scare anyone with my story. I guess my point is that even though ADH is not considered cancer, it certainly doesn't diminish the worry and there are probably a lot of us further down the line that understand what you are having to handle. DCIS is not considered cancer by some because it is not invasive. I don't care what you call any of these "precancers,"anything that involves surgery and constant monitoring is life changing in itself and being concerned is always understandable.
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carol4 - well stated - my thoughts exactly.
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? For you both....Did either one have any lymph nodes swollen, painful, or show up on a previous mammo? This keeps running through my mind! Monday is just too far off. That & the first biopsy came back AH.... I didn't have a good feeling about that one either!
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Ladies~ all of you who responded so thoughtfully, first, thank you. So refreshing to hear from truly understanding people!!! Your word echo everything I'm feeling~ the waiting, the appts, the anxiety. I just am not comforted with the idea of waiting to see if something comes up so that it can be detected and treated early~ ideally, I'd want to avoid it altogether~ I don't want to wait until I "have" to do something like a MX because after any stage of BC the whole game plan changes because it has to~ in answer to the questions, I have a sketchy grandparent health history that definitely included gyno cancers and maybe a breast cancer too on one side but no BC or cancers yet first degree. Other cancers such as lymphoma and stomach with 1 grandmother and 1 uncle~ the ONC suggested the BRCA and BART testing because of the gyno cancers and uncertainty in general. My BS 's office called my ins and recd auth for a PBM for me due to ADH diagnosis. I am in N CA and as I understand it and per my BS we have some of if not the highest incidences of BC worldwide certainly in the US~ my breast center is coordinating a huge study of N CA women and BC incidence including benign breast diseases as a "precursor" ~
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No problem with lymph nodes for me - good luck julz4, wishing you B9 results!
Sunny 20 - You feel the same way I felt - I didn't want to "wait" until I got BC - I wanted to do all I could to prevent it totally!!
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Hope you got some good news today Julz4.
I'd love to chime in with more, especially on the topic of "well why are you so worried if it's not cancer" but to be honest I'm too exhausted to type out a well written response. People who haven't been there just don't seem to understand but all of us here.. we know. Hugs going out to everyone tonight for a good nights sleep with less stress and worry!!
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Sparky....Vmudrow....Sunny & All the rest of the ADH girls! Nothing is conclusive until I have the whole Mass out on a slide....with that said the MRI didn't come back as we had hoped. It's looking like cancer. The Mass lit up & you can see a definate blood supply to it. My BS wants to talk with one of his Radiologists to discuss some other things seen all on the left side. Nothing seen on the right. The Mass isn't lighting up any larger than the Mammo or US. But it is more spiculated looking. A small area lit up right above the crease of my left arm pit. This was bright yellow. The BS didn't know what it was & also seen was what looked to be 4 or 5 nodes. Very small though. The Radiologist has suggested going straight to a wire biopsy. But the BS is thinking that while he is out of town, that it the Radiologist does an exstensive core needle biopsy they could have the results by Monday when he comes back. Then if it IS cancer, then he can go in & do a Lumpectomy with node disection all in one shot. Instead of doing a wire biopsy finding cancer & having to go in to do a second surgery to get clean margins & the biopsy of the nodes. Not sure what the % is that is a true positive. It seems to be that MRI's have more false positives. Still waiting....but the next biopsy will probably be this week! Thank you all for thinking of me.
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julz4 - sorry to hear this - maybe it still could not be bc? Praying and crossing fingers and toes for you!!
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Julz4~ I'm thinking of you and sending lots of prayers~ there's so much uncertainty and endless waiting remember you don't know until you know....sending a big hug~ keep us posted!!
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***hugs*** Julz4!! I hope they get you in for an excisional soon and you get b9 results!
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I heard from the BS today on the answering machine (I work nights & sleep during the day). Anyway I am going in Thursday at 3:45 for a needle core biopsy & placement of clip. That way they know what the next surgical step will be. Lumpectomy if cancerous or just mass area removal if just ADH or AH cells only. While I am there he will be looking at the lymph nodes under my arms with the US as they were suspicious also. This will be done in his office. Nervous!!! I did a core biopsy 4 years ago at this exact time give or take a few days. Just nervous about the results!
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Julz, it's so understandable to be nervous! Now that you're so close to finding answers, less than 2 days away. You're in my thoughts and prayers tonight and I'll be thinking of you Thursday and sending you lots of positive light. Take good care of yourself and get as much rest as you can tomorrow....please keep us posted. Hugs! Jaye
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Julz.. thinking of you today! Hope the procedure went well yesterday. I know the waiting for results is awful, hope the time passes quickly!
I finally have an excisional biopsy date.. May 18th so only one week away. I'm anxious and nervous but also greatly releived to finally have this mass out and know what the heck I'm dealing with.
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Sparky I'm glad it's all scheduled so you can go on to the next step. A never ending step process. We just hope for the best. I feel like I'm in La La Land!
Yesterday the CNB was done. I did good until he hit the chest muscle it hurt but no damage. Just really sore then & today. I'm off to work tonight wondering how bad I'll feel before the night is over. I'm a CNA rolling & transferring heavy people all night. The BS got 4 long cores. Next week I go back in Thursday to set up my surgery. I hope I don't have to leave you girls but the BS & Radiologist is really leaning towards it being really suspicious. The small yellow bean thing on MRI looks cancerous also & will be taken out. He says it's linked to the main mass, a sister site he called it I think. The nodes looked ok. When all the surgery is done & all the path reports are back is when I'll either stop worrying SOME or a different place of mind! I can call in Tuesday for the path report since they couldn't get me in sooner. Working till then. As if that will keep my mind off it.0 -
I was diagnosed with ADH in Sept 2011 @35 years old. My mom found her first lump at the same age and then at age 40 ended up having BC...she then had a mastectomy. When I first learned of my ADH I wanted a mastectomy...I didn't want to deal with this the rest of my life. Because of my family history my oncologist said I will have to have a mammo every 6 months and a MRI once a year. I told them I didn't want that but they refused to do the mastectomy. So in March 2012 I had my first breast MRI which once again found a lump. (which is was I feared would happen) I had a biopsy and they found complex fibroadenoma with adenosis. Both this and ADH increase my already high risk due to my moms history. So I met with the surgeon yet again and requested a mastectomy. He said that is not necessary and he doesn't think this lump even needs to be removed. He says I need to have a psychological evaluation. Both the oncologist and the radiologist agree that the lump needs to be removed. I am done having children and my husband supports my decision. I don't know what to do to get my surgeon to respect my decision. Oh and my husband is in the military so my ability to just get a different doctor is pretty much non-existent because we are seen at the hospital on our base. I don't know what else to do! I have done a lot of research and found plenty to support my decision...any other ideas?
Thanks for your response.
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J2kbbax....there is a thread here somewhere about insurance troubles they may have an answer. I would post this, copy & paste. On the not diagnosed but worried & also the high risk section too. Start your own thread!!! Remember that it's the beginning of a weekend so it may be some time before the right people will see it! I wish could help more! Please let us know how your doing!
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Thanks julz4!
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j2kbbax I'm glad I could help! Just posting in the right place makes a difference as I see! I hope more help comes! So inadequate ..... but Good Luck anyways!
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Hi guys!
I am glad I found this thread!!
I was diagnosed on Friday (3 days ago) with ADH. I am only 31!!Yikes, so needless to say I think I am going to go for a second opinion since this was through a local hospital. I live near Philadelphia and I am thinking of scheduling an appt. at Fox Chase Cancer center.
My maternal grandmother had breast cancer but she didn't develop it until after age 70.
Glad to 'find' you guys on here! If you have any suggestions for the 'newly diagnosed' please let me know!
Hope all is well and thank you!!
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Welcome Bre.....I wish you didn't have to be here, but I am glad you came so we can help. I just went & read your other post about how you found the ADH. From what my BS said if mine ends up being purely ADH. I will then go on 6 month screening's for a year or so. Also I will need to take Tamoxifen for 5 years. But first I am thinking you need to have your other breast checked out too. Are you seeing a General Surgeon or someone who specializes in Breast Surgery. I would think it would be in your best interest to go for a second opinion to a Breast Center. That's what they deal in & know what would be the next best step. I know I got a Breast MRI which is rare for just Atypical Hyperplasia & me not having the risks you do with your maternal grandmother. My maternal grandmothers sister & her daughter had BC also. So in my BS's mind it was enough of a risk to push to have it done. Also with you being much younger you have denser breast's which makes it much harder for the mammo & sometimes the US to pick up on things. Keep us posted in how things are going. Remember WE the patient are the consumer. If we spent a lot of money on a service & we didn't get satisfaction. We would be looking somewhere else to have the Job done right! Health care in no exception!
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I wish I could stay with you girls!!!! But I just found out that is not what is to be. My CNB came back DCIS! Just called to see if they got the results & when the nurse gone awhile & my BS came on the line I just knew. For now I hope it stays at that DX as we talked about the sister site that lit up on the MRI. I see him Thursday to set up the Surgery. Won't know a whole lot more until the surgery is done & the path report comes back.
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Julz,
Breathe. I want to only say things that will make you feel strong, wow, good luck with your next steps. Just remember, one foot in front of the other, one thing at a time. I am here if you want to talk.
I came back from my post-op follow-up today and the BS says he wants to see me in 3 months as I have nipple itching/flaking and ADH. He says he doesn't want to 'open a can of worms' by discovering other lumps that need to be biopsied. The more I think about it, the more it feels like he is a camel with his head in the sand and I can't do that. I am opting to see a breast specialist in the meantime.
I wish you luck on your journey. Stay strong and breathe.
xo
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