ADH Club
Comments
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I have been reading the posts and have you all in my prayers. I haven't posted in awhile. I posted last night to another thread:
I have a diagnostic mammo and possible U/S this week. I have had many years of "stuff" going on: lumps, benign lump removed in '98, blood in discharge twice, MRIs, biopsies on both sides, ADH removed ( 6cm X 5 cm area) summer of 2013 on the L side. Now pain just below nipple on the R side that sometimes "zaps" to my tissue close to my underarm. Both Ns itch and R is extremely sensitive. Also, have some dull stabbing like pain that made me wonder if it was a heart issue at first but it's the L breast. That may be just ductal ecstasia stuff. This is an interesting thread. When I mentioned pain my BS scheduled a mammo and U/S. She is pretty thorough and doesn't like to mess around. I will update after mammo and U/S.
Not to sound weird but my R nipple gets an area that draws together, thickens. It didn't do that before a few weeks ago Anyone ever notice something like that?
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I wish you the best on your mammo and u/s. Hopefully, everything will be benign and you won't need surgery. Sorry, but I can't answer your question. That didn't happen to me. Good luck and hugs.
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does anyone have a Dx of one pathologist saying adh and the other saying dcis grade 1?
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No but I have heard of that happening. ADH/DCIS are on a continuum.0 -
I actually had one pathologist say DCIS grade 2, a second say borderline DCIS-ADH, and a third say just ADH. Very confusing
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I went to more than one MO and I got dramatically different treatment plans. I am not surprised that you got different pathology results. It is terrifying. Good luck. I wish you the best.
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yep. I have both Dx. Waiting for oncotype test to decide on radiation or not. Will take tamoxifen.
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momoschki, what treatment plan didyou do??
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Robinda,
Lumpectomy followed by bilateral reduction, Evista, Metformin, many supplements. Some type of scan every 6 months: mammograms in fall, alternating with US or MRI in spring
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got it. Did they ever tell you they thought you should do radiation??
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Momo
I'm curious about Metformin. I take that because I have type 1 Diabetes but I wouldn't consider it protective against bc. After all I've been on this drug for many years and last year dxed with ADH. So wondering if you may have type 2D
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No, none of the doctors I consulted with thought radiation was indicated. They all concurred that despite the 3 conflicting diagnoses, the treatment and prognosis would be the same
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Ddw,
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC420066...
Here's a link to a review of literature of Metformin used in breast cancer treatment and prevention in both diabetic and nondiabetic populations.I am definitely not diabetic myself. My integrative oncologist prescribed it following my dx 5 years ago. There are currently clinical trials underway, but it is still considered an off-label usage.
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I have been on metformin twice daily for about 10 years and was diagnosed with ADH in left breast and IDC in right breast this February
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yeah ditto seeds ally. Didn' " work" for us
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614,
Did you have a dx of ADH before your BC dx? If so, how long before?
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I guess I fit in here now...
I was Dx with IDC in 1999 after multiple prior benign biopsies in both breasts for Fibroadenomas. I've also had several biopsies since for benign Fibroadenomas.
I went to see my surgeon on 5/2 for a new lump in my non-BC breast. He sent me for a mammogram and US the same day. As it turned out, the lump ended up being a benign complex cyst. While I was there however, radiologist found suspicious calcifications in my other breast, close to where my IDC was. She recommended a FNA of the cyst and a stereotactic core needle biopsy of the calcifications.
My pathology report came back benign for the cyst and for 4 of the 5 samples taken during the core needle biopsy of the calcifications. 1 of the 5 core needle biopsy samples, however, came back with Flat Epithelial Atypia (FEA) and Focal Atypical Ductal Hyperplasia (ADH). A wire localization excisional biopsy has now been recommended and scheduled.
Having had IDC already, I'm much calmer about than I thought I'd be. My surgeon isn't overly concerned with the findings, but did offer to do the surgery this coming week. I have a vacation to the beach scheduled for the following week so I declined and opted for the week after I come back. IF this biopsy comes back with something more than ADH, I want to have enjoyed time with my family prior to jumping back into more surgery or treatment.
It's nice to see a thread for this!
Tracy
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Good decision and I'm
Hoping for a good outcome too
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I had my follow up with my surgeon Thursday and got my pathology results from my excisional biopsy that was performed 6/15. He removed a 4cm x 2cm x 1.5cm section of tissue around the marker from my core needle biopsy (that showed FEA and ADH). The results were as follows (a lot going on!)
- Organized radial scar
- Florid Ductal hyperplasia
- Apocrine metaplasia
- Flat epithelial Atypia
- Atypical Ductal hyperplasia
- Columnal cell changes
- Microcalcifications
So, in the end my pathology is not malignant. It does, however, have pre-cancerous findings. I'm now scheduled to follow up with my oncologist to determine if Tamoxifen or another hormonal therapy may be appropriate. I'll most likely go back to having mammograms every 6 months rather than my current yearly schedule. There is also discussion of alternating with breast MRIs.
Tracy0 -
I'm sorry to hear this
Tang I'm pretty much in the same boat. It's quite shocking and distressing to learn this. I have been on Evista for about 6 months and so fat I've had clear mammogram clear full breast ultrasound which they just started doing in 2016. It hurts a lot but no radiation or dye involved and better than mammogram at detecting problems in dense breasts. I was quite sore for two days after
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I guess I'm fortunate that I've had a good stretch between my BC diagnosis/treatment and this latest finding where I haven't had to take any meds and have only had yearly mammograms and ultrasounds.
I have much better anxiety control (meds) in place now, so I'm hoping that alleviates a lot of the anxiety I have during tests and waiting for results.
I'm ready to deal with it, this result was certainly better than a malignant finding - which would've been considered a local recurrence.
Are you saying the whole breast ultrasound hurts? I was in a trial when they were first testing that process out. I don't remember it hurting. I guess I need to start reading up on the different scan options
Tracy
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I found it quite painful. The tech who had it herself called it uncomfortable. It was like a torture machine IMHO and definitely not ready for mass screening purposes.
Good luck with your decisions . There are some iptions
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I was diagnosed May 2015 with Stage 2 invasive mucinous carcinoma at 34. Had the mastectomy, reconstruction, and have been on Tamoxifen since October 2015. May 2016 I discovered a lump. I've been through the US, Mammo, and biopsy. I met with my surgeon yesterday, but she was in a rush so I don't know if it's ADH or ALH, I just know I have atypical cells. I'm going in for an MRI next week and then she wants to do surgery to remove it.
It stinks that it's just been a year. These cells have obviously grown a little before then, since I felt it in May. My mastectomy was July 29, 2015. Before cancer I ate well, worked out, don't smoke, I don't drink, I didn't sleep as well so I've improved that. After all the surgeries I've gotten back into my routine of being healthy. I'm glad it's not cancer, but it's hard because I don't know what else I can do to try and prevent any of these cells. There's no history in my family.
It's right on top of my implant, so I'm hoping nothing happens to the implant. My ps did a good job making it match my other side. Can any of you share your experiences with the surgery and an implant, and recovery time?
I'll ask my surgeon this, but wondering if anybody knows the answer. If you have atypical cells there's a higher chance of getting breast cancer. If you've already had breast cancer does that null and void that stat out? I went a little backwards and got cancer first.
My friend said, well God answered our prayers, there's no cancer. We just didn't know to pray for no atypical cells. There's so much I continually learn about this disease.
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I just found this site and I'm hoping this is the correct forum to post. Last week I went in for a diagnostic mammogram for clear discharge from right breast. They didn't find anything on 3-D mammogram or ultrasound. But they found some calcifications in the opposite-left-breast (normal mammogram one year ago), so they did an image guided breast biopsy (stereotactic). I still haven't gotten the report so I don't have a lot of specific details but the nurse called the next day and said they found atypical lobular hyperplasia and atypical ductal proliferation. I asked if it was ADH (hyperplasia) but she said no, it was proliferation. I haven't been able to find anything about proliferation on line. Does anyone know what this is? She also said I didn't have DCIS, but from researching on line, it is possible they just didn't find it in the sample and/or pathology reports may vary so much that it may be DCIS. They recommended a surgical biopsy --going in for consult in two days and will know more then. I also understand that at the very least, I'm likely to be "high risk" given that my mother had breast cancer too. I suppose I can't know anything until I have the biopsy. But I'm worried now. The nurse said it should be in the very early pre-cancer stages so no need to rush to have the biopsy. Is it possible that I might have advanced cancer even if there was no mass detected, just calcification? I went from being happy I didn't have cancer to wondering if I might have metastatic cancer. This is all very new and scary. Any thoughts or suggestions would be very welcome. I guess I'm looking for a supportive community. Thank you!
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Hello everyone,
I was dx with ADH in my right breast last August. My excision surgery is coming up on September 16. Looking for words of wisdom regarding the surgery. Also, something I noticed on all of (or most) of the posts in the ADH forums is everyone's signature page. They say DCIS, or IC or lymph node removal etc. etc. As if all of the ADH patients eventually end up with pre-cancer or cancer. Feeling super down today. I'm new to the forum and am impressed by everyone's courageous stories.
Hopeful
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Hello scoutyboy, I wanted to reach out to you since we are going through roughly the same thing at the same time (August is the date of your post). I too was first dx with microcalcifications... Had the stereostatic biopsy and then they found the ADH. Here is a great website about everything we are going through: http://breast-cancer.ca/microcalcs/
It's my understanding that one can still have cancer lurking when there is no lump, with just microcalcifications and ADH. I will find out soon. Surgery is 9/16. Post Op appt is 9/23. Hope you are well.
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Loveslit,
You have to keep in mind that the reason you seeing cancer dx's predominate in people's signatures is because the vast majority of women who have a dx of ADH and nothing more tend to leave the site. It's NOT that the majority of people with ADH end up with cancer.
The excisional biopsy surgery is not really a big deal. You'll be sore and bruised for a little while, but it's a quick recovery. Bring a good sports bra with you to wear home from the hospital. They'll give you a little ice pack to tuck into it, which really helps.
Best of luck to you and keep us posted
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Hi LovesLiterature,
Thank you for reaching out. It seems we're on a similar path. I just heard that "they didn't see anything to be alarmed about" from my MRI. So, I'm still scheduled for a surgical biopsy on Sept 19th. They need to place a seed in the location of the original core biopsy. I hope that isn't as painful. From what I've read on other posts, the surgical biopsy is more tolerable due to anesthesia. Thank you for the link about microcalcs. I hope all goes well with you on the 16th.
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Thank you, yes and good point about the signature info and those people leaving the discussion boards. I hadn't thought about that. Perhaps some folks move over to the "wait every 6 months" club too. Also, I see that you were diagnosed quite a number of years ago. That gives me hope. Thank you for the advice on bringing the sports bra. Hope you are doing well.
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Hi scoutyboy, hope all goes well with the seed
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