ADH Club
Comments
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I have decided to ask for Raloxefine in November from MO if I get the chance . I am post menopausal but I don't know how much help it would be anyway . There are still many potential side effects from what I can see. I don't know how it will effect my Diabetes. That is always the deal breaker in my case. It's a very tough choice. One MO said no meds and the other said Aromasin which I know wouldn't be easy on the blood sugar or the osteoporosis
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woke up today depressed, anxious and feeling very lost. Even good news is bad news when it comes to breasts. I don't know what in the world to do.
ddw I hope you will be able to take evista at least you'll have some peace of mind. For once in my life I wish I was postmenopause I definitely would give evista a try. 0 -
I have decided to ask for Raloxefine in November from MO if I get the chance . I am post menopausal but I don't know how much help it would be anyway . There are still many potential side effects from what I can see. I don't know how it will effect my Diabetes. That is always the deal breaker in my case. It's a very tough choice. One MO said no meds and the other said Aromasin which I know wouldn't be easy on the blood sugar or the osteoporosis
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right there with you Tinkerbell. The mornings are the worst for me
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Good morning ladies
It's been pretty quiet, I guess everyone is good. (I hope)
Mvspaulding been thinking and praying for you. Would love to here From you. Lots of hugs...
Ddw how are you holding up? Lots of hugs...
momo and ballet hope you are doing good as well. Lots of hugs......
I guess I'll share a little, I had my appt with the ps yestarday very happy with him, but I'm not ready to go down that route yet. He did say that since I have implants already my outcome would be great. I have prescription for tomox, don't know if I'm going to take it yet. So I haven't made any decisions . Bmx is a little to much right now. I Will add I have never been good at making decisions I have been working on that.
well girls hugs for everyone.....
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by the way I would love to start a topic on tomoxifen for breast cancer prevention and the side affects. Maybe we can get some positive answers. Just a thought....
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Hi Tinkerbell
Thanks for your good wishes for all. Back at you. It's " Pinktober ". It's a constant reminder for me.
I think there is already a page on this site with a discussion of tamoxifen going on
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Hi ddw
yes there is a thread but not for adh. I was on it but most ladies there had some kind of cancer and rads and chemo. So they really didn't have a choice. I'm still contemplating taking it. Can't bring myself to do it. Maybe I'm in denial not sure. All had se's some more severe than others.
yes its pinktober everything is about bc even friends posting on fb and ig. It's a constant reminder. Hang in there.
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We are in the same boat. I totally understand how you feel about these drugs for ADH. After I see my MO on 11/6 I will share everything she says. That's after my follow up mammogram post excisional biopsy. I'm so glad my friend with bc is coming with me. My luck I'll be diagnosed in Pinktober
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I had my excisional biopsies yesterday - three places on the right breast and one on the left. Two of the three on the right had already come back as atypical (atypical lobular hyperplasia and atypical papilloma). The third spot was calcification they were unable to biopsy when they did the stereotactic needle core biopsy. The spot on the left has already been diagnosed as atypical ductal hyperplasia. Yesterday was to get clear margins around the precancer spots (or to find cancer, if it was present). The surgeon also removed the bleeding duct (started bleeding July 12th and has never stopped).
So the doctor's office just called. No cancer was found anywhere. The previously unbiopsied spot on the right came back as atypical as well. No cancer! A relief...but at the same time, it almost leave me more confused. This was not one spot on one breast. Four different spots across both breasts, plus a bleeding duct. The breast nurse navigator tells me I'm at a higher risk of breast cancer because of the precancerous cells. I keep thinking that I want to do the bilateral mastectomy to reduce the risk of future cancers.
I received two letters today from the insurance company telling me they denied the MRI and the MRI guided biopsy. They told the doctor's office they were approved. I'm worried we may have to pay for those. And if they're fighting the MRIs, they will definitely fight the mastectomies, won't they?
I was prepared for a cancer diagnosis. I don't know what to do with this diagnosis and we don't see the surgeon for our follow-up until Monday.
I'm sore, I have four incisions in my breasts, and a diagnosis of atypical (ductal, lobular, and papilloma). I've been through three rounds of biopsies, three ultrasounds, several mammograms, MRIs, and numerous doctor appointments. And now, I feel like it's all been a mistake. How serious is the precancer diagnosis? Does anyone do mastectomies because of precancer diagnoses? I don't even know which end is up right now and I have to wait to talk to the surgeon on Monday.
Thanks for listening.
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You are not alone. I have gotten this dx too. I have next Mammogram coming up in one week. It really stinks and becomes a worry almost on an hourly basis . It's likely they will recommend preventative medication for we. Many consider and some on this list do preventive mastectomies. I haven't gone that route yet . I may have to though if this or worse continues which is what I fully expect.
I totally understand your confusion and pain. It will take some time to heal from this invasive surgery and you will get more clarity on Monday. Keep us poste
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grandmatexas----"no cancer was found anywhere"-----what wonderful words to hear! But I know how you must be feeling---on one hand, it is very good news, but you're still left with an unsettled feeling due to the increased risk of bc. (ADH and ALH confer a risk of about 20-25%). Bilateral mastectomies are not medically necessary for ADH / ALH, (although some do choose to go that route.) (It sounds like you might have a hard time getting your insurance to cover it). I was diagnosed with LCIS 12 years ago ( which is a step further along the bc spectrum with double the risk/severity of ADH/ALH), and my risk is further elevated by my family history of bc (mom had ILC); but even with that elevated combined risk (oncologist feels it is about 35%) all my docs feel bilateral mastectomies are too drastic and not medically necessary. I have been doing high risk surveillance of alternating mammos and MRIs and taking preventative meds (tamox for 5 years, now evista) and fortunately have not needed any further biopsies in all these years. Generally, what is often recommended for ADH/ALH is closer monitoring and possibly medication. I know it's a lot to wrap your head around right now, but it will become easier with time, I promise!
anne
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Thank you, Ddw79 & awb, for your encouraging words. I did call the insurance today and was told whoever handled the claim didn't look closely enough. The MRIs were covered! Yeah. One less worry.
I'm confused in the sense that ALH, ADH, and atypical papilloma are all considered precancer, yet they could require medication or other treatments. So, is this a BC diagnosis? Or is it not? I know any of these diagnosis means I have a higher risk of developing BC in the future, but does this risk go up with this many different things going on? Is there an increase in risk if there are issues on both breasts as opposed to one breast? I guess until I see the BS (oncologist) on Monday I won't know what my risk is or what road the oncologist will recommend. And I wonder if I will be satisfied with his suggestions? So much confusion. I'm glad to know there is no cancer, but I'll be happier when I don't feel like I'm in Limbo.
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Well grandma the good news is that we don't have cancer and the bad news is that we are indeed in limbo and will henceforth will always be.
ADH or ALH anywhere and in one place or four confers a higher than average risk. My two docs told me I have a 35% higher risk due to ADH. No way is this good but your own doc will assess the risk with you next week and will probably suggest aromatase inhibitors as prevention.
I got a secon Oncology opinion . First said meds and second said no meds because of my other serious health conditions. It's very unsettling and I plan to revisit this issue in early November after follow up Mammomgram next week.
I cannot do this thing alone and will be taking a friend with me. I'm expecting something bad for sure.
Let us know how it goes. Thinking good thoughts for you
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Thank you so much for all your support.
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It's me again. I had my follow-up with my breast oncology surgeon today. He explained that he did not find any CANCER, which is a good thing. However, he did not find the papilloma, which is the piece of this whole puzzle that has bothered him from the beginning. I had been bleeding since mid-July; he said the most common cause is a papilloma, followed by cancer. The MRI-guided biopsy found an atypical papilloma and placed a marker. When the doctor did the excisional biopsy, he removed the marker and the area around it, but he could not find the papilloma. He said the hematoma could have moved the papilloma, but it bothers him that he didn't find the source of the bleeding.
He explained that with ADH and ALH, the suggested treatment is mammograms every 6 months and estrogen-blocking medication. I asked if the fact that I have both ADH and ALH, as well as an atypical papilloma, would increase my risk in an additive manner or if the risk increased exponentially. He told me that was a really good question. He told us he didn't know of any studies that looked at that.
I told him we had lengthy discussions about bilateral mastectomies; seems like with everything going on in both my breasts, waiting for the six-month screenings will be like waiting for the other shoe to drop.
I actually felt much better about our decision when he told us if I were his wife they would be having a serious discussion about mastectomies. He said he had never done this many biopsies on anyone and with the different results and the fact that he didn't find the papilloma, he was really concerned about the bleeding.
He will be setting me up with a plastic surgeon and scheduling me for the mastectomy and reconstruction. If no cancer is found, there will be no need for any medication.
I know it won't be a cake walk, but it has to be better than just waiting for what might show up with every next screening.
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Wow Grandma!!! I wish you so well!
I asked too about bmx ADH and they all said no but I feel like a sitting duck too waiting month to month.
Thanks for checking in. I wish it weren't so but I'm glad you have some peace of mind now
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Thank you, Ddw79. I'm sorry the doctors didn't agree with you. You're so right about peace of mind.
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Well it's just confusing . I have no support to go through major surgery and with Type 1 Diabetes will be even harder.
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i am confused, i was diagnosed with ADH, i am happy and not worried at all, will be watched closely, should I be more worried? From reading posts here, I may be missing somethin
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No linpiz, you are correct. For the most part and most women ADH is just a moderate risk factor to be monitored
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Linpiz
I understand your confusion. There is much written about this. I have it too confers a significantly higher cancer risk . Did your docs tell you this? Are you taking antiestrogens?
I am quite concerned about it myself is all I can say. Going for my 7 month follow up Mammogram next week. Gritting my teeth due to anxiety about this.
But worrying doesn't help anyway so better to stay calm and distracted
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The one thing I find distressing about this site is the skewed view that women with atypias get here, because the few that hang around tend to be the ones who seem to take the most drastic views and actions. I think most women who have ADH, ALH & LCIS probably get on with their lives and perhaps get closer monitoring & take antihormonals, as per NCI guidelines (unless they have significant other risk factors). With some reservations, the recommendation is NOT for mastectomy. It scared the crap out of me when I first came here. It is NOT, for the most part, the norm
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Everyone accepts this news differently and each of us sports our own response to anxiety. I haven't gotten quite to PBMX stage yet but I might and soon even. Many docs do I fact recommend this for ADH patients. Not mine but I see here it's not uncommon
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That is the whole point ddw. Because they hang out here & choose mastectomy doesn't mean that the majority DON'T hang out here & DON'T have mastectomy. It is NOT the NCI recommendation unless you have significant other risk factors. Your relentless negativity scares other women. This place scared the hell out of me when I landed here with LCIS right on the heels of ovarian cancer. It took a long time to understand that because the handful of women with LCIS who hung out here had mastectomydidn't mean that that is what the majority of women do or SHOULD do.
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Thank you Melissa, this board is scary, unless their docs are telling them something different , I just wasn't understanding these posts. I have been told ADH DOES NOT EVEN TURN into cancer for most people, and if I am being cked every six months I am hoping that IF it ever does ,the close monitoring will catch it real early.
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linpiz,
I hope my post is not what scared you. I think (and I could be wrong) my case is a little different because I have so much going on. Honestly, if they had found one spot of ADH or ALH, I probably would not even considered BMX. Given the fact that the surgeon/radiologists found ADH in both breasts, along with two ALH and an atypical papilloma AND a duct that had been bleeding profusely for almost three months, we decided to be more aggressive. That was a personal decision, something we talked about at length.
I hope everything goes well for you.
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Well it is different for everyone and breast cancer scares me more than most probably because I cope 24:7 with insulin and type 1 Diabetes. This changes the picture immeasurably for someone like me. Going through bc with no pancreas is pretty darn scary ladies . So yeah I do think we each have a different load on our plate. I do understand completely why someone in my situation with ADH alone or with deadly comobidities would make this choice. In truth to me it seems individual and personal and some docs do recommend mx for these risky situations.
Yeah really sorry to hear about the ovarian cancer. My mother and cousin had it. It's is the BRCA 1 gene in my family. I'm glad that is behind you
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one week ago I had Breast reduction on left side (non cancer side) and scar tissue removal on right side where I originally had lumpectomy and mammosite radiation 8 years ago for IDC stage 2 a. Took hormone therapy for 7 years. Now I get pathology back and have been told I have atypical lobular hyploplasia in left and atypical ductal hypoplasia in right Breast severe. I'm so confused , I have never even heard of ADL ADH/ ALH before today. BS wants to confer with my oncologist to see about going back on aromas in or tamifen. If I had known about this I would of just had bilateral Mx a week ago instead of revision and reduction. I am still recovering from this surgery and it hasn't been easy. Any advise would be appreciated.
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Barteeellis-
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