ADH Club
Comments
-
Hi grandmatexas!! Thank you for welcoming me!! I only wish we'd all meet on different circumstances. I am sure much like me, you find comfort in knowing we are not alone. This seems to be a very healthy place for us all to be able to share our situations, thoughts, worries and even tears if need be. The strength in these forums is amazing. A place to get strength when one feels depleted.
Thank you for sharing you with me
I will be thinking only warm, safe, peaceful thoughts & blessings for you. I will be thinking of you Monday as you meet with the plastics peeps. I meet with mine at Moffitt just this past week. I have to say it was very reassuring. He was actually the 1st doc to come right out and say he thought I was making a very wise decision.
I think I'm at peace with the thought, just so very scared of the physical surgery.
On my way to sleep, but will write more soon.
May everyone be safe!!
0 -
celebrating with friends and quietly thanking the Goddess for some good news finally. You gals are so sweet and nice.
Still considering possibility of Evista myself . Seeing the MO in two weeks to discuss .... Again.
This time calcifications were not clustered . In March when the found ADH the calcifications were clustered
0 -
tinkerbell 49...Early congrats on your grandson! They seem to make everything ok so innocently!!
ddw49...great news. A reason for praise. Enjoy the peacefulness and have an awesome weekend!!!
0 -
Ddw, congratulations on your results-- you must be very relieved! FWIW, I've been taking evista for almost exactly one year now with no real side effects that I can discern. I have hot flashes and insomnia, but I had them before the evista. I had a LOT of trepidation, but I'm glad that I gave it a try
0 -
Momo thanks for your encouragement. I think I'm going to give it a try. If it messes with my Diabetes it's a deal breaker but I think I should try. This whole bc thing is even worse when you have crazy other illnesses to cope with ..
We've pretty much had a collective good week here in ADH Land. Happy for all
0 -
I'm going to repost what I wrote on another board. Some already know my initial journey; others do not. My BMX was done on November 10th and I will say we made the right decision. Thank goodness.
My story has been a journey that began on July 12th. I began bleeding from my right nipple, however I had no clue where the blood was coming from. It was apparently light enough that it was dried on my nipple and watered down when I showered. Couldn't figure it out for a week (thankfully, since I was enjoying a vacation with my daughter-in-law in Mexico). When I returned home, I realized the source and the bleeding increased. I bled profusely (dripping on the floor) for three months.
I went through a series of tests. I first visited my GYN, who sent me for a diagnostic mammogram. Two calcifications (which they would NOT have checked without the bleeding). Next was an ultrasound, which showed nothing. A stereotactic biopsy of the calcification on the left side (NOT the bleeding side) found an atypical ductal carcinoma (what my doctor called precancer). The calcifications on the right side (bleeding) were too close to blood vessels, therefore that radiologist chose not to needle biopsy.
My oncologist decided to order an MRI of both breasts; the bleeding had him concerned and he wanted to investigate that before excisional biopsies. He had to fight the insurance company, but we succeeded. The MRI showed two more areas that needed tested on the right breast. An MRI guided biopsy found an atypical lobular hyperplasia (again precancer) and an atypical papilloma.
We proceeded with the excisional biopsies (basically lumpectomies). The excisional biopsies confirmed the three already mentioned atypias along with an additional atypical lobular hyperplasia, and at the same time the surgeon removed the bledding duct (three months was a long time).
Our next visit with our oncologist, he told us that usually when an atypia is found, the normal protocol is to take a drug for five years, have screenings every six months, and biopsy anything unusual. Having done an enormous amount of reading, we were aware that would be the initial suggestion. We had looked at the side effects of the possible drugs that would be used. My question to him was, "If that is your suggestion when you find ONE atypia, what is the normal protocol when you find this many different things across both breasts?" He clearly had no real answers. He told me that he had never done this many biopsies on one person at one time and found this many things. I informed him that we had been discussing bilateral mastectomies. His response..."If you were my wife, we would definitely be having that discussion." That was enough for us.
Move forward a few weeks. We met with our plastic surgeon, whom we loved. She thought we might be able to go straight to implants. She described a fairly new technology called a Spy Test. She used this test to determine the blood flow to the remaining breast tissue. One small section of my breast tissue "failed" so she placed tissue expanders. The good news was that by the time surgery was near the end, the blood flow was improving.
One week later, double mastectomy was completed, tissue expanders were in place, and we met with the plastic surgeon. One drain was removed - YEAH! Then it was off to visit the oncologist. Everything is healing well, but he informed us that he was extremely pleased that we had chosen the mastectomy. Pathology did find a cancer. It was only .3 cm, contained in a duct (DCIS). Good news because I will not need chemo or radiation. However, we reflected on the fact that several mammograms, ultrasounds, MRIs, and numerous biopsies found NO CANCER. If I had decided to keep the breast, what might the outcome have been? I'm so thankful we chose mastectomy, in spite of the fact that there were a few who felt this was an extremely radical approach.
0 -
Way to take care of yourself! Happy that you are happy. How do you feel physically these days?
0 -
Thank you, Ddw. I am a week out from surgery and I actually feel pretty good. Taking very few meds...antibiotics because I still have a drain, half a gabopentin for some nerve pain, and a hydrocodone when I go to bed (some nights).
I truly don't have much pain at all unless I'm doing my stretching exercises - that's a bit uncomfortable. I'm told the other drain will probably be removed next Monday. I'm expecting to get another fill in the expanders next Monday as well. Not sure what to expect with that procedure.
No regrets. So glad I went with my gut and don't have to rely on the obvious problems of mammograms, MRIs, and ultrasounds, at least in my situation.
Hope everyone else is doing well.
0 -
Carry on Grandma. What a relief and you are being so brave
0 -
Hello,
Strengthens what I think, if my florid hyperplasia gets worse and I develop atypia, I will also go that route.
Best
Alicki0 -
Oh my goodness grandmatexas!!! You are so so brave. I hope and pray you held quickly and without any pain. You're post gives me comfort and hoping I can follow your journey. I am scheduled for BMX 1/8. Although I had hoped having the surgery scheduled would start to provide some peace - it's become a bit of a panic.
thank goodness for those of you sharing your bravery.
0 -
Thank you all for your positive words. I'm not sure about bravery, but my journey began with fear. I was afraid of cancer, preparing ourselves for the worst possible diagnosis. In my mind, by preparing ourselves for the worst, anything better than that diagnosis would be good.
Once we had ALL of the diagnosis, I/we didn't feel like there was really any other option for us. We did our homework; we researched the diagnoses, the possible drugs that could be used, and the protocol for future screenings. I could not envision taking drugs to save the girls while possibly subjecting my body to the side effects (some of those possible side effects were worse - in my mind- than the alternative). I was told that screenings every six months would be necessary. That meant every six months going through the emotions I had been going through for the prior three months. I was afraid - afraid I would not be able to handle that emotionally. And then when he told me we would biopsy anything unusual. More biopsies? I don't think so. I'd already had EIGHT!
As it turns out, since they did find a cancer (that was only found through mastectomy) trusting my gut was the right choice. Not so much brave, but what I consider self-preservation.
So, not so sure I was being brave or being chicken. Going through the mastectomies basically meant the end of this nightmare. I know there is still a small chance, but by taking care of things now, we significantly reduce future risk. Brave? Chicken? Whatever it is, I feel better.
I know there is a healing process ahead. I will say, at this point, I am not in much pain at all (nearly two weeks out). I have already had one drain removed and expect the other to come out Monday. I have fills and implants to look forward to, but we made the right decision for us.
And if anyone needs recommendations for oncology or plastic surgeons in the Fort Worth area, I'll be happy to share. Mine are amazing!
0 -
Good luck tinkerbell. I will keep you in my prayers. Keep us posted. Hugs!
0 -
Hey, I just had my excisional biospy last Friday and new to this group. For those of you with ADH what was your treatment
0 -
Well, I am joining the ADH club. I finally have the date for my biopsies. At first, the surgeon (who is great) told me this Friday. However she thinks I might have a heart murmur and now I need to have an echocardiogram. That's news to me. She also found another palpable mass on the other breast so now I have to go in for another ultrasound/possibly core biopsy depending. So I have to wait another two weeks which is fine, but I really would have liked to have had it done this Friday! However, I am glad she's thorough. This is all taking place at a different hospital then where I started, and I think it'll be good to have another set of eyes on my slides.
0 -
What usually happens after you get clear margins
0 -
sunshine--if your diagnosis stayed at ADH after excisional biopsy, generally the recommendation would be for closer monitoring and possibly tamoxifen (depending on your individual risk level which depends on your own risk factors, such as family history)
Anne
0 -
I received my ADH dx almost one year ago. Started on my first ( half) dose of Evista TODAY. So scared of this but I took the plunge. Wish me luck ladies . If this messes with my type 1 I just can't do it. I plan to increase to full dose gradually depending on how it goes
0 -
Ddw, good luck! I had some mild nausea for about the first 4-5 days-- give your body a chance to get used to it. I've been taking the Evista for over a year now and no issues except for some hot flashes (but I had those before).
0 -
Thanks Momo
Three days on 1/2 dose. I know I have to get up to full dose but I'm going slow. Sticking to half for first week and 3/4 next week. So far it's no problem at all but I know I'm not taking enough
0 -
Ddw---glad to hear it is going well, I'm sure you will do fine with the full dose. Most people have no SEs from evista, if anything, just hot flashes.
anne
0 -
Thanks for your support Anne.
I did have my first hot flash today and I thought there was no estrogen left to suppress.
I hope I can get up to full dose . I'll try at least
0 -
Hi ladies, thank you for the wealth of information here. My name is Kat - I went in for my first mammogram at 40, in Feb of 2014 and they found a cluster of microcalcifications in my left breast. I was scheduled back in for a magnified mammogram of the left breast 6 months later, in August of 2014 to see if anything changed. Nothing did.
In Jan of 2015, I went back for my routine mammogram and things had changed. They found 2 areas of concern in the left breast, 2 small masses they called papillomas. It surprised me how things had changed in just 6 months. They did an ultrasound the same day, then a core biopsy the week after and at the end of the month they decided to do a surgical excision of the breast to remove the papillomas. At that point in Jan 2015, I was told I had ADH, but I actually had to ask. All my surgeon said was they found atypical cells in the papillomas. So I asked, does that mean I have ADH? He didn't want me to panic. He said yes, that I did and that I would be followed closely with MRI/mammogram every six months in the high risk breast clinic at our hospital. I read my pathology reports online from start to finish but to me it was hard to understand, which was why when I googled certain terms posted in my report like "Focal atypical cystic ductal micropapillary hyperplasia" ADH was what kept popping up.
When my MRI was clear and all was good in August of 2015, I saw my surgeon's nurse practitioner. She was a little more clear that ADH was found and with my family history I stood a 42% chance of developing breast cancer in my lifetime which is a little scary seeing as how I'm only turning 42 and have a long way to go at this point. I mean we all do, you know?
My paternal grandmother's two sisters developed breast cancer. I'm not sure how it started out, i.e. microcalcifications, lumps, or what. One of them died at age 41. And the other sister developed it later and had a total mastectomy at 60 with no further complications. I have 4 aunts on my dad's side who have regular screenings with no issues that I am aware of.
This mammogram was all good in 2016. And I will have another MRI in August. I forgot to ask how often I'll get checked if I have no issues from this point on, or if this 6 month regimen will be something they do regardless. It is rather scary how fast the papillomas showed up with 6 months when they had just done a magnified view of the left breast in August 2014 and then to have them visible in Jan of 2015 by regular mammogram and ultrasound.
So I wanted to join the ADH club. I hope you all are well.
0 -
Welcome Peacelilygirl! Happy to have you here -- you'll find our incredible community a very welcoming and helpful one!
--The Mods
0 -
Thanks for your support Mods an Momo. I'm determined to make the Evista possible and keep it up. I appreciated the article you posted about compliance
0 -
I have an appointment with the oncologist tomorrow for a three month follow up after an excisional biopsy which confirmed ADH. During the process from screening mammogram through US and stereotactic biopsy MRIs and 8 more mammograms, I felt like the victim of a conspiracy of the medical industry. My primary care doc, whom I love dearly, handed me off to a surgeon and an oncologist who seemed hell bent on doing whatever they could to make my calcificationsturn into cancer. The anxiety of the process as the basis of my first conspiracy theory that they were trying to worry me into being sick. But, I rejected it as being just too evil. My next theory was that it was a plot to defraud Medicare by ordering procedure after procedure and involving the two specialists. I still feel that this theory has merit. My plan is to call a stop to this tomorrow. I have one more mammogram and visit with the surgeon in May and I will comply with that. I will do the annual mammograms and continue taking the estrogen inhibitor even though I have had some nuisance side effects. Unless they get worse, I will take it. The research I have done makes cutting the estrogen connection seem logical. Each time I have visited the oncologist there is a many page questionnaire assessing my anxiety level so she knows that she is creating it. I'm all for maximizing breast cancer research until a real cure and prevention that works is found. But, I also wish that this low level breast condition would not trigger an all out onslaught of testing and procedures. For now, I have a daily pill and an odd Harry Potter scar to remind me of the several months of torture. I wish I could somehow prevent anyone else from having to endure it
0 -
I got the same dx but I haven't had so many follow up procedures. I had one mammogram six months later and was just told that yearly MRIs no longer suggested. I am struggling through with the crummy side effects of Evista. I wish I didn't need to take it. I felt so much better when I wasn't on it. I am also type 1 Diabetic which is a huge struggle in itself 24/7
0 -
Did anyone have a biopsy come back as adh borderline dcis
0 -
Robinda, yes, I did. Actually, the slides were read by 3 different pathologists at 3 separate hospitals-- 3 different dx's: DCIS, borderline ADH/DCIS, and pure ADH. The distinctions can be rather subjective
0 -
I had many pathologists look too. Going to have lumpectomy. What was your final report? Are you being closely monitored?
0
