ADH Club
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Excisional biopsy found nothing-- everything was apparently removed by the needle biopsy. And yes, I am closely monitored: I get some kind of imaging every 6 months (mammo in the fall and alternate US or MRI in the spring). Used to see an oncologist every 6 months too, until he unexpectedly died last fall. I haven't replaced him. I've been taking Evista since last November. In addition, I had a breast reduction after the lumpectomy. Also take a bunch of supplements. I never did get a conclusive dx, but all my doctors told me it really didn't matter, as tx recommendations would've still been the same.
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Thanks for your reply. My dr said if it turns out to be dcis I would benefit from radiation. If just adh then tamoxifen only.
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I am on the same path Momo but my Oncologist just told me that new recommendations do NOT include annual MRI. Now I'm confused . I have also been about six weeks on Evista. How are you tolerating it? I feel that I have more generalized body aches on it.
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No one recommended radiation in my case, since whatever it was was so tiny. I wanted to avoid tamoxifen since I'd had endometrial proliferation issues in the past, so I waited until I was fully menopausal and began Evista. No real problems with that-- I have hot flashes and insomnia, but I had those before I started the drug
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Hi ladies
I too as crazy as it may sound I'm hoping for menopause to take something other than tomaxifen. I got my appt for my first 6 month check up March 24 (mri). My nerves are going again and my emotions are all over the place. I don't know what to expect. SCARED😞😪
Ddw I pray your side effects wind down. Happy you started evista..Good for you ...
Robinda I pray your excisional biopsy goes well and nothing else is found. I was also diagnosed with adh at core needle biopsy but nothing else was found on excisional biopsy. I haven't been able to bring myself to taking tomaxifen scared of the more serious side effects.
To the ladies I missed I haven't gone back and read everyone's stories yet , but I will.
Prayers and good thoughts for all
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thank you!! Those that had lumpectomy were you put under with general anesthesia??
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Robinda I had propofal I think I spelled it wrong but it's the same medication they administer when you have a colonoscopy I've been told. I told the nurses that anesthesia makes me nauseous and she put medication in the iv to prevent that. I went to sleep (it actually felt great) and woke up in recovery as if nothing had happened. It took me a minute to remember where I was. The actual procedure wasn't bad at all and I had no pain. The worst part was waiting for the results. Good luck...
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I also had propofol . It's a great drug. I have it for colonoscopies too.
I wouldn't look forward to Tamoxifen either and I guess Evista is easier but probably not as effective at this job. Took me almost a year to start on it Tinkerbell I just looked at the bottle for a long while
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Thank You!!
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anyone have a large area of adh??
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MULTIPLE ADH CLUSTERS ANYONE?
At age 49 I've just started this journey with multiple clusters of calcifications in RB and stereotactic biopsy identifying ADH in one cluster area. Surgeon has called for two more stereotactic biopsies on the RB because I have so many clusters and he doesn't want to do an excisional biopsy only to have to go in again if ADH or other issue identified where other clusters are. Sounds logical, but I have about 8 groupings all through one quadrant of breast and I worry if some biopsies won't actually get a key cell in them, i.e. miss a cancer or pre-cancer cell, and then something is left to fester. My sister , age 51, had a lumpectomy the summer of 2014 for a suspicious lump and ALH + LCIS was found. She's now on Tamoxifen, which doc is recommending for me too. Doc also found lump in LB that was not previously identified so I'll get a diagnostic mammo on that when I get the next 2 stereotactic biopsies.
It all leads me to wonder about treatment options and why I would want to only have removed the areas a particular biopsy catches?? What about what isn't caught, as in the case of grandmatexa. How lucky (if you can say that) you were able to have removal and reconstruction rather than years of worry and repeated biospsies/surgeries.
Has anyone out there also had many clusters of calcifications, with ADH identified in one or maybe others? What is your chosen treatment plan?
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Hi. I don't have multiple clusters but a pretty large area. 3 cm. Biopy ame back adh bordering on dcis. I'm going to have lumpectomy. If it's just adh my treatment plan is tamoxifen.
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Hi ImnSeattle,
Are you being seen at a high risk breast clinic? If not, I would (personally) get an appointment at one. So much going on!
I had multiple ares of calcs, stereo showed ADH. Small: largest is 8mm. The next move was excisional biopsy but I asked for MRI because 1) I have dense breast tissue and 2) family hx breast cancer. MRI lit up two more areas in R, and 1 in the L. U/S guided biopsy on the R at my local hospital missed all the areas. I was referred to a breast center, where they final got them, AND noticed my abnormal nodes. It took 3 hours to get the biopsies. Two cancers on the R, 2 + nodes. The L gets biopsied Monday, before I start chemo on Thursday.
Everyone is different, of course, but I think breast specialists will have more experience and a deeper knowledge base.
Good luck! Hoping it is b9!
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hi. So I looked at my report. It says multi focal microcalcifications up to 4 mm. Features of at least atypical lobular hyperplasia. The surgeon told me it was 3 cm..guess that means total area?
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I got the multi focal dx too but I don't know what that means. I asked but didn't get a good answer
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I think it means more than one cluster of Calcifications.
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I believe multifocal means separate areas.
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Thank you. I didn't realize that. I am now on a surveillance program and taking Evista. Not to mention scared every single day of my life because zi also try to manage all of this on 24/7 insulin with type 1 Diabetes. Could always be worse
As they say
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I'm sorry you're going through all this. It is such a confusing journey to be on. I can only speak about my situation (which you've already read about), but what happened to me makes me wonder how many women are walking around with issues that aren't picked up by mammogram. I went to see my plastic surgeon last week (my reconstruction is scheduled for next week) and asked her if she had any idea what mammograms miss. She told me that 10-20% of cancers are MISSED by mammograms. I was really surprised that it was that high. That percentage is pretty scary to me. It seems unacceptable to tell women how important that yearly mammogram is when it actually misses that many cancers.
My surgeon also told me that women with dense breast tissue are ENTITLED to request an ultrasound every other year and receive that screening. It isn't typically offered, but it can be requested. In addition, she said the 3-D mammogram was a bit more effective for dense tissue.
I can't begin to give you advice, I just know that you need to do your research, think about your options, ask questions, and be your own advocate. Sometimes that means being a bit bossy, but it's your body and your life. You are the one who cares the most about it.
I believe the double mastectomy was the smartest decision for me. I didn't want to keep going back for biopsies (I'd had more than enough) and I didn't want the worry (with the 8 precancers found through stereotactic needle biopsies, MRI guided biopsies, excisional biopsies) so I went aggressive. I'm not sorry, considering they did find DCIS in one place. That doesn't mean that is the direction you need to go, but I do think you need to get the facts and go with your gut.
Let us know how things go for you. Good luck!
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hi grandmatexas, I don't know your whole situation but was wondering if you had an mri and that was able to detect things better?
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hi. My biopsy shows adh bordering on dcis. Total area is 3 cm. I had an mri which came back totally clear. Getting a lumpectomy. If it does turn out to be dcis will it likely be dcis grade 1? Thanks!
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Thank you so much Robinda, GrandmaTexas and Reflect--and everyone on this site. I think I'm going to ask about an MRI. My reading notes that >3 atypical hyperplasia locations significantly increases cancer rusk, so I'm anxious to learn more about my many clusters of calcifications.
I am going to a clinic with a high risk team, and my BS is the medical director. However, I still wonder how you get multiple pathologists to view biopsies, to help ensure ADH vs. DCIS etc. is clarified??
My BS suggested annual mammos and says I am very high risk. Report from first core biopsy says "Clinical concern for malignancy; ADH, FEA and columnar epithelium; Right breast calcifications at RUOQ are eight .2-.3cm in diameter by .3-.6cm in length." I also have that new lump BS found in LB that will get diagnostic mammo when I get my next two RB core biopsies on March 1.
I suppose it's too early to be wondering about mastectomy and reconstruction, but yet I'm a worrier AND the Tamoxifen BS is calling for creates serious problems for my depression treatment--required over many years to allow my success in life on many fronts.
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Hi imnseatle or anyone whose felt a lump, when you say lump can you explain how it feels and how big is it? I felt like a mosquitoe bite type of welt in my breast that wasn't there before. It's in the same place as before only before I had cluster of calcification.I go for my Mri in March just wondering if I should request 3d mammogram before. I was diagnosed with adh(2 micro foci) 6 month ago. This is my first follow up. I am so scared and anxious I can't even think straight.
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ImnSeattle,
I honestly don't think it's too early to wonder about anything going on with your body. I started doing research early (when I first started bleeding).
When my doctor finished all my testing (I won't repeat all since you can look back at my posts) he informed me of all the different precancers he found. What he initially said was "Typically with AN ADH or ALH you are prescribed one of the drugs and we monitor you every six months."
I asked how my risk increased with the multiple finds on both breasts. He didn't have a definitive answer. When I told him we were discussing bilateral mastectomy, he said if I was his wife we would be having that discussion.
I didn't feel like I would have any peace of mind going 6 months at a time worrying about what they might find the next time. I have not regretted my decision. They did find cancer (after many tests only found precancer).
The real question is "What can you live with?" If you can put it out of your mind and go on about your day, you might opt for monitoring. If, like me, you would stress over it, you may want to choose a different solution. Whatever you decide , talk to your doctor, explain your thinking,and tell him what you want. I know people who were told by their doctor that they were being too aggressive. They persisted and the doctors agreed to do what the patient wanted.
Do your research, know what you want and be insistent.
Good luck.
Grandmatexas
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Thanks so much Grandmatexas. If I hear back that there's more ADH or something, after Tuesday's biopsies and mammo of the new lump felt, I'll be asking about a double mastectomy. It's good to know I might be able to direct my own treatment, ultimately.
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I think that like Grandma TX says ( I am a grandma myself now in TX😉) this decision is ultimately very personal . I haven't yet chosen double PMX because of so many othe serious health problems but just the fact the insurance must cover surgery for a DX of ADH tells me a lo
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I also agree with grandma tx and ddw the decision is a hard one. I too am a grandma in FL.😊 I have been seriously thinking mastectomy this is my first 6 month follow up and I can't imagine 5 years of this. I am a nervous wreck.
I Met with PS when first diagnosed with adh and yes insurance pays for everything surgery and reconstruction.
Good luck !!!!!
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I did the double mastectomy in November and the reconstruction surgery was last Wednesday. Still recuperating. Not sorry about the route I chose, but I will be glad to get life on a little more even road.
Good luck to all of you. Keep us posted on your diagnosis and decisions.
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Guess I'm official in the adh club!
. Just got results from lumpectomy. Adh. One tiny questionable area that she said another opinion might consider dcis. Meet with dr. Monday. Any advice??Robin
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hi Robinda,
I'd highly suggest you get a second opinion on the pathology. The ADH/DCIS distinction can be fuzzy and somewhat subjective
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