ADH- treatment options

The clip is standard. I say I have a bionic boob now .

 p.s. if they don't excise the area, the clip shows up on future imaging tests to show them where to look carefully.

Jackson52..thanks for your prayers and thoughts........I was doing fairly well and really busy at work and tonight it really hit me that tomorrow I have this done. I am not sure what I am more worried about- the surgery or the placing of the wires or the waiting and worry for the results. Anyway- I am anxious but I guess it will be good to have it done- it seems reasonable to take it out and have a more substantial biopsy.

I have been reading all that I can find about ADH- and followed the link on one of the threads here for the New York Times Article about  ADH and DCIS..and then I search for more information- like grasping for answers.

 I will be sending thoughts and prayers your way tomorrow as well as you meet with your oncologist and determine next step to take in treatment................it is certainly a process. It sounds like you have been weighing all aspects and are leaning toward the excisional. Let me know how it goes and what you decide. You have support here.............

worried---the wire localization procedure wasn't so bad--I felt no pain, just a pulling/tugging sensation as I was numbed up very well. Very similar to the stereotactic core biopsy, except sitting up. Hardest part for me was just having to sit so still for so long with my head turned to one side. Praying you have nothing more found than the ADH.

Anne

awb- thanks for your feedback on the wire locaization- I feel a bit better.......I was  REALLY nervous for the stereotactic and have now had two- amazing how we move through these things one at a time.

Hi Momma. Sorry for your tough decisions ahead.  I wasn't diagnosed with ADH, but another (further down the road to cancer) thing called pleomorphic LCIS.  I was definitely encouraged to take Tamoxofen by every BS and oncologist I saw.  Like ADH, the risk of invasive disease with LCIS is a lifetime risk, so I don't understand why, as posted above, tamox wouldn't be recommended for ADH. Momma, I asked that very question, "what if the cancer to be isn't er pos?" and was told that it's kind of a crap shoot but most breast cancers are er pos. 

Hi- I am new at this, all of this.

I am 38 years old. Last year I was having serious, visceral-type itching of my right breast. It was intense. I did everything I could for what might have been a dermatological condition, nothing helped. I did self exams but I didn't feel any lumps. So finally I went to my Ob/gyn and he did an exam, felt nothing and said well, you might as well have a mammogram, you're getting to that age. So he wrote the order. And I sat on it for about 8 months.  

I went in for my first ever [screening] mammogram right before Halloween. They called me back first thing the next morning for more mammograms of the right breast, which lead to an ultrasound, which lead to that awful vacuum needle biopsy, 4 cores, and insertion of a titanium clip.  Excisional biospies were 3 weeks later. There were two masses, #1 at 6 o'clock, on/very near the chest wall, 2 cm; #2 at 4 o'clock closer to the surface, 0.8cm. The second mass was determined to be 'incidental' per needle biopsies and they did not want to excise it but I pushed to have them both taken out as long as I was there, numb, prepped, etc. They ended up putting me under because the first mass was so deep. The second mass had less than a 1mm margin from the specimen edge - I gather that means it was right up at the edge of the hunk of tissue removed and there may be more left in the breast? 

The path report was the same for both masses: columnar cell change, flat epithelial atypia, hyperplasia. I am so very glad I had them both removed. I am so very worried about that thin margin on the second one.

My Ob/gyn got me into see the rare cancers onc. She is marvelous.

She said she was having the head pathologist review my slides again. I hope that's a good thing; does that seem like a good thing? She then mentioned Tamoxifen. I balked. I asked about prophylactic mastectomy. She seemed to think that was like going from A to Z and asked me why I asked her that. I said if you take most of the tissue, don't you also take most of the risk?

In a word, no.

She said let's get you an MRI - are you ok with that? I said well, what would you do? Why wouldn't I be ok with it? She said it can lead to other things, open up a can of worms, am I comfortable with a lot of information? Yes, I am ok with that. So the MRI is on the books for the week after next, and the follow-up mammograms and appt with the breast surgeon are scheduled for June. One of my sisters has had 2 phyllodes tumors out of 8 excisions. Mother and another sister have had fibroadenomas. I have had basal cell carcinoma removed from my chest and arm, large enough to require a plastic surgeon, a fact they find noteworthy.

So, I am wondering about the MRI - what can I expect afterwards? I am extra worried about the can of worms nature of what may lie ahead now. She implied more biopsies. I can take more surgeries. I don't know if I can handle more of that US/vacuum needle. I found it to be horrendous. The oncologist's nurse put it on par with bone marrow harvesting. I know people have been through worse, but personally, I start to get weepy and panicky when I consider more of those US/vac needle procedures and that's kind of what got me to the thought of just surgically removing the whole breast...

I don't really know what I am asking here. I think after the MRI I'll go for that second opinion. How do you do that? Do you personally bring your slides elsewhere? My sister goes to a superspecialist in NY. I could find another doc there and I also have considered MD Anderson or Mayo. I would appreciate any and all advice or thoughts or musings from others' experiences. Thank you so much.

Thank you, Valerie, for posting!

When I mentioned mastectomy, the onc said there is still some tissue left, so some risk remains. I think I can deal with 'some' risk versus a high percentage, though. The more I read, the more I see that my odds are going up, due to being under 40, due to more than one locus, due to sister #1 having those rare tumors, etc. Sister #2 is an anesthesiologist. I talked to her about it, asked what she would do, she said she'd do the same thing I was thinking. I am thinking I will proceed with close monitoring and if [which per consensus seems really more of a 'when'] something else comes up, have the Mx and reconstruction. Is that waiting too long?

Can I ask you about PBM - what about it is partial? Is it that the nipple/skin remains? Because if not, what is different about that vs a total mastectomy? Did you have reconstruction / implants? How was the whole process? Were you 'out of commission' for a long time? I would say it took me about 3 weeks at least after the excisions to stop getting so easily fatigued. And now ccasionally there is still a little shooting pain, it comes and goes, which is interesting, because I feel like I have maybe 50% sensation in that whole breast at all. Maybe that's a psychological thing. I started playing tennis again, using that pec muscle, running around a little, perhaps that's part of it. Can you still 'feel' your breasts?

I am thinking that if I can, I will consult with someone at Mayo, I have been reading one of their studies about ADH. If there is anyone with experience with that institution, I would really like and be grateful to hear about it.

I am so glad to have found this online community.

Thank you!!

Kris, I'm sure Valerie will respond soon but in the meantime I can answer a couple of your questions.

PBM is a prophylactic bilateral mastectomy, not a partial mastectomy.  A partial mastectomy is actually the same surgery as a lumpectomy, so it's not really a mastectomy at all.  There are skin sparing and nipple sparing mastectomies, both of which are usually feasible for those who have prophylactic mastectomies.  As for feeling, it is possible to regain some of the surface skin sensation after a mastectomy (some women do; others don't) but there is no feeling inside the breast. I find it funny sometimes that women say that they have "full feeling" back in their reconstructed breasts because if you think about it logically, how can a silicone (or saline) implant give you feelings?  I had a skin sparing single mastectomy and I've regained excellent skin sensation.  I also have some phantom sensations, including the feeling of nipple sensation.  I know those are phantom feelings since I don't have a nipple, not even a reconstructed one.  So I think sometimes women confuse surface sensations and phantom feelings for real 'inside the breast' feelings.

Bumping to get the spam off the top of the list.

You know what I think.  What about those of you that have cancer - if you knew you had a high risk of getting bc woud you have had surgery to prevent it?

Hello again - thank you for the information. It's a lexicon all its own, isn't it? I'll get it down

Thanks, Beesie. Fascinating about the phantom sensations. The mind really is amazing.

Valerie, I am not currently rated, but I'd guess I'm about a 3.5. My DH is probably a 5 and he is my hitting partner / opponent. When I get tuned up, we'll be a formidable mixed doubles team. At least that's the goal for now and also a means of giving my brain somewhere else to go, instead of thinking about all this stuff all of the time. Though we've played all our lives, taking tennis up again in earnest is kind of a recent development and it has helped a lot in terms of mitigating stress -- for him, too. So it's good all around. How about you?

I have been reading about the significance of finding ADH in more than one location, and that this itself lends to a Dx of DCIS. Is that right? There seems to be a degree of subjectivity about the whole thing, the reading of the slides, the treatments. But I am caring less and less about studies and literature and what the specialists say and getting closer and closer to simply scheduling the surgery. I tend to cry late at night, all by myself. I don't want it to be anyone else's problem. What is up with that, I do not know...I guess it's just so real. But here are you all, and life goes on. It's positive, encouraging. I can do it. Thank you.

Hello All,

I have been reading all posts here regarding ADH and agree that there is a concern for this diagnosis. During self examination I found a lump and was referred to a breast surgeon who decided on a biopsy...pathology was ADH. I had a lumpectomy along with the excisional biopsy recommended. Healing was pretty quick for me.

I have a sister who at 35 had advanced breast cancer. My surgeon recommended genetic counseling at the City of Hope...this genetics team was wonderful and explained my risks. I went for BRCA testing and came back negative with a variable of unknown significance at the BRCA 2 level. It was recommended I have a prophylactic hysterectomy. I ended up having the hysterectomy because of severe bleeding due to polyps within my uterus.

As far as ADH, I decided to go with my breast surgeons recommendation of being tested every 6 months. My protocol was Mammogram, Ultrasound, MRI. Unfortunately, In 2006 I fell into the category of layoff which means I also lost my PPO health plan. I now have an HMO, which means I have to really push to get further testing past the mammogram.

I am so glad I came across this forum...when I was first diagnosed with ADH I felt I had nowhere to turn.

Take care ladies.

That's a great question - does anyone regret having PBM?  Happy to play tennis with you anytime Kris!

OK I have ADL any suggestions, most likely both breasts only had one biopsied but have clusters of micorcals in both (past two years)..... also fibrogladular tissue with 45% dense breasts. I am going to Mayos this month and am wondering if they will remove more tissue as ADL was picked up in a stereotactic biopsy of micorcals.  However I do know there are more micorcals in there as only removed area with 5. MRI next week to look for further problems.  Strong family history cancer 90% fathers side every aunt and uncle with cancer and two cousins died in 40's of breast and one aunt had breast bilateral mastectomies in 40's.  No sisters to compare to for me or my mother. Wondering if I should wait around or be proactive and have Mayos go the full yard!!!!