ADH Club
Comments
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thanks Tinkerbell but from the way she talked this isn't ADH. I am trying real hard not to panic. I wish this didn't happen over a weekend.
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Hi Myspaulding, It certainly seems a bit insensitive for you to get the information in such an ambiguous format. When I went for my results to the surgeon, they weren't all in...also got that statement that deep staining needed to be done (which usually refers to the estrogen and progresterone responsitivity). At least he didn't say, I think we have a problem. I said to him that it's at least ADH, right? and he said back to me "at least", but he already knew. I didn't get the official call until a few days later, at 10:30 at night. I didn't realize, at the time, that the staining refers to hormonal responses. I kept thinking it was the need to further differentiate between ADH and DCIS. Yours sounds more serious, in that you actually have a palpable lump. Wishing you the best outcome in this!
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It was my breast surgeon that called me when the pathologist called her. There is a lump and I can only assume that it is cancerous at this point because she wants me to come in and talk to her on Monday and is already scheduling an MRI. I didn't know what the additional staining meant either, so thanks for letting me know. She didn't want me to go the weekend without any news but I still don't know for sure and kind of going crazy. I don't want to say anything to my friends or family yet since I don't really know anything for sure, so I am dying inside but trying to hide my anxiety. This is almost exactly 5 years since I was diagnosed with ADH, and now I can't help but wonder if I made a mistake in deciding not to do the Tamoxifen 5 years ago. Thanks for all the good wishes. It helps to be able to talk about it on here.
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The staining can also be to determine ductal from lobular, int the case, say, of more ADH as opposed to ALH
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You know what mvspaulding, the fact is that ballet12 and Melissa Dallas can both be right. It s**ks that it's the weekened but you may not have anything malignant so try to keep occupied and Monday will be here soon. Please keep us posted !!! Good luck ...
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I got my actual excisional biopsy results in the mail today. It says
Neg for malignancy. No residual adh identified. Fibrocystic changes with calcifications. Rare foci of udh present
I have n appt for Wed. Did anyone else get similar results? I Don't know if I have to take meds. This is truly a life changing expierience.
.I wish the core biopsy would been the same no adh, I'm so depresse. Thanks for listening...
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Seriously depressing but good news I feel that nothing on the excisional. I had ADH on both so I think I would feel better seeing it on Stereotactic only. It's probably confusing you though. I can imagine that for sure. You could get a second opinion on these biopsy reports
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I'm feeling some hardness where the wire went through or by where they took the tissue sample from. I didn't have a lump before. Is that normal?
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Normal Tinkerbell
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What are they saying? I know how you feel. I also am not taking the drugs . Cancer soon too. I doubt will even get five years. Keep us posted. Hoping for the best for you
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I have my post op Wed. Thank you
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Hate more than anything to say this but found out today for sure that I have invasive breast cancer. It is small and for right now saying Stage 1 until we find out whether or not there is lymph node involvement. Exhausted and numb. Had to tell my parents and kids tonight and close friends. Just draine
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Sad to hear mvspaulding... So sad.
ADH and then this? You will be in my prayers tonight
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I had been worried , very sad for you.. I will continue to pray. I am so sorry you have to be going through this. We are all here for you.
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Hi ddw my phone ran out of battery yestarday. Have you tried taking any meds besides tomaxifen, my drs tell me there are some new ones out. I am thinking hard about this. I went on another forum for women taking tomaxifen and not all were unhappy. But it does say young women do better. I'm 49 don't know exactly what is young.
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Sorry to hear your news, Mvspaulding. Hoping that you end up with the best outcome possible under the circumstances. Thinking of you ((hugs))
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hi Tinkerbell
I'm not " young." I'm 63 and I'm between a rock and a hard place. Doc says no meds. I have many other life threatening illnesses and she thinks too risky for me. If not I would at least try. I'm not at all hopeful about this. Just never lucky. If I were healthier I would try the meds of that means anything at al
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Thank you everyone, your support on this forum has meant a lot to me. I will get through this and hopefully just have it removed and have some radiation. Although it is a way worse recovery and surgery, I am actually thinking of just opting for the mastectomy no matter what. My Doc says it will depend on lymph node involvement and my genetic testing that was sent out today.
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It's a hard decision that I am going to face too. I wil be behind you whatever you choos
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Hi everyone
I met with my surgeon post op appt. I also met the onc and genetics. I really liked my onc. She said to think about tomaxifen but on the Gail scale I was at a 1.5% higher risk. She said usually she would recommend it more for 1.66% or higher but she did say if it were her she would take it. She put me on a 6 month mri and then diagnostic mammogram. Then I met the genetics doc he said I would probably be neg for brca1 &2 then he said with my family history my % went up to 34% of lifetime 10% for 10 years 2% for 5 years. So I met with his nurse practioner she also recommended tomaxifen or removal of ovaries and no tomaxifen. Now I don't really know what to do. She said ovary removal would reduce my % even lower, but still higher then the average women. So I'm in the med risk. I'm even considering mastectomy. Then I think I'm over reacting. Should I listen to my onc or the genetisics. My Dr. Was very optimistic thought mastectomy was a bit much. But he would do what I wanted. Confused. Can someone please help... Has anyone had a similar situation. For the women that chose mastectomy how do they look and feel? How is the recovery. Wow this is truly shocking...
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Tinkerbell---normally, with such a small micro-focus of ADH and a relatively low Gail score of only 1.5, they would not usually recommend taking tamoxifen.(just close monitoring). So other factors must be driving the recommendation (and the lifetime risk of 34%)---strong family history? If both your oncologist and your genetic NP are both recommending tamox, it must be for a good reason. I would definitely have the discussion with your doctor about risks versus benefits of taking tamox, before making any hard and fast decisions. I was diagnosed with LCIS (a step beyond ADH on the bc spectrum with double the risk) and my risk is further elevated by family history of bc (mom had ILC), and even with that combined risk (estimated at 36.6% by my oncologist, who actually said it was a "guesstimate and could be higher"), all my docs felt BPMs too drastic and not medically necessary. My 5-year risk on the Gail model was 4.6 (very high), so tamox was pretty much a given for me. I alternate MRIs and mammos every 6 months, took tamox for 5 years, and now have been taking evista for about 6 years for further prevention. (on a side note; I ended up having my ovaries removed, (not by choice--ruptured) and still had to finish another 3.5 years of tamox . (as estrogen is still produced by the adrenal glands, skin and fat).
anne
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Thanks awb everything is kind of blurry for me right now my gale scale was pretty good but the genetisist did a different scale. I guess I have to wait for my final report I only remember pieces of the convetsation. I'm so confused removing my ovaries I don't think it's a good idea. The genetics nurse practitioner said it was an option since I probably go through menopause between 50-51 no one I know has gone through menopause so early. She also said if I did I wouldn't have to take tomaxifen. Did you have side effects with the meds? I'm 49 now
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my onc said it was up to me she said I had time to decide it wasn't a must.
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I'm pretty much in your space Tinkerbell except that I do have many more mitigating factors when considering these prophylactic meds. They are very scary and even dangerous for me. Still I will be revisiting this issue with my Oncologist in November shortly after my first Mammogram post biopsy.
As for oophorectomy. In my case anyway was not protective against breast cancer . I went into natural menopause at age 40 and then due to the family genetics of BRCA 1 ( not me though) I had prophylactic ooph at age 41. Was not protective in that sense . At 62 dxed with ADH. So I suggest ooph just to protect against ovarian cancer due to family genetics .
If I were you, and I'm not of course, I would at least try the tamoxifen just to feel that I had tried everything. I wish I had the option but due to other comorbid diseases I have not been recommended these drugs. I will revisit the drug issue though and I may push to try evista. I think if you are not in menopause the best option you have is Tamoxifin.
I hope my story helps. I will keep you posted about my journey. I am struggling right there with you.... Every single day.
It sounds though that you have a good supportive Oncologist.
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Tinkerbell, I also had adh on the stereotactic biopsy-- nothing on the excisional, as it apparently was all removed by the previous needle biopsy. I have no family history and was told that my ten year risk is approx 17%, lifetime risk somewhere between 20-25%. I did not want to take tamoxifen, as I had already had some endometrial issues. I was 53 when diagnosed. I waited until menopause finally set in (at 55) and then, at 57, after much obsessing, finally decided to give evista a shot. It's been almost a year now and no SE's to speak of. You can always try the tamoxifen and if it's awful, you can stop
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Momo
That's good news about Evista. You really have no SE's? I'm about to ask for it even with all the other health problems but the SE profile looks so daunting. Really scared to try it but of course we can stop i
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Hi momo
The reason I don't want to take tomaxafin is because my husband and I just bought a semi truck to work over the road. This would involve sitting for Many hours and that would put me at. Higher risk for blood clots. My Insurance overs mx so I'm going to meet with my surgeon and a ps that works with him. This way I can weigh my options. I already have implants but I would like to know more about the procedure.mx. if there is someone else that has done a preventative masectomy I would love to hear your story. Momo I have family history of cancer but no breast cancer. Still it puts me at a 34%. So happy you are not having SE"s...
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Fwiw, I was terrified of SE's too-- that's why I deliberated for nearly 4 years! It might be that the evista worsens my hot flashes, but I'll never know since I had them before. In any case, I'll happily live with the hot flashes if the evista lowers my risk. U have rather have hot flashes than cancer.
That said, I know it is all very daunting and scary, especially at the beginning.
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momo you and all the ladies here have had a great impact on my life right now and for that I want to say thank you from the bottom of my heart. I know I'm over reacting and I only have my husband to discuss all this with. I don't want to worry anyone with my problems. So to them its benign which it is ( but). My husband was sitting with me waiting for paper work and 2 ladies walked in with scarfs on their head and I saw tears rolling down his cheek. I think I'm going to put this behind me till 3/23/2016, when I go for my first 6 Months. I might start tomaxifen but until my husband agrees which now he thinks I should wait and my onc thinks I'll benefit but not with the job, I'm going to pray for God to guide me in this life changing event. Boy I really wish I could have some wine today. My life stopped since I receive the adh news I have to get myself going again.. on a good note I will be a grandma 10/27/15. So God is still blessing me. To mvspaulding I haven't stopped praying for you hopefully you are coping better than me and everything is going well for you. One more thing is anyone taking anything for depression cause I believe I might be needing something.
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Yup, decided about 6 months into this mess that I needed chemical intervention. An antidepressant has helped. Also, anti-anxiety drugs in the beginning (tho not so much now). Both have helped
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