Atypical Hyperplasia

Kitty123

I was diagnosed with ALH 7 years ago. I just turned 45 and have to have surgery #4 on my right breast, which is now 1/2 the size of the right. I have ALH in the left but unchanged since 2004 and no surgery. I am seeing my surgeon next week and will ask him to put me on tamoxifen b/c I was too young when I was first diagnosed. I am considering a mastectomy w/reconstruction so I can get off of this emotional rollercoaster. I've read that it's not recommended for ALH but I'm at the point with this that I can't function. I need someone to talk to.

Anonymous

Kitty--what were the 4 surgeries--lumpectomies? I was diagnosed with LCIS (a step further along the bc spectrum; a non-invasive bc) about 3.5 years ago, had lumpectomy, have been on tamox ever since. I also have family history so I'm very closely monitored with breast exams, and now alternating mammos with MRIs every 6 months. Even though it's a sense of security being watched so closely, it is also very stressful, so I can understand what you're feeling. Please feel free to PM me if you'd like to talk.

Kitty123

The surgeries were to remove the calicifications. I have four groups of calcifications on my right side again and one of them does not look like the others - that's the one they're concerned about. I've had mammograms and ultrasound every six months for the past 7 years. I know that I'm closely monitored but my metal health is suffering from the stress. I also cared for my mother before she died 2 years ago from emphysema and am caring for my 82 year-old father who is terminally ill with inoperable lung cancer - he's 4 years into a 5 year prognosis and had to go off of pill chemo and back onto introvenous (sp?) chemo again. I have a doctor appt this afternoon to get a mental health referral. The strain of this has caused my depression to return and I am presently unable to function. I don't have much family history b/c I was adopted although my maternal grandmother died from breast cancer before age 60 and my birthmother has not been diagnosed w/any breast disease. (I got the info from my 1/2 sister who is an RN, but my b/mom won't speak to me so I can't contact me 1/2 sister without upsetting their family.) My appt with the surgeon is next week and I will be asking him for tamox as I'm old enough now to take it. Thanks for the reply. It's nice to know I'm not the only one dealing with this.

Kitty123

My stereotactic biopsy is scheduled for June 7 and I'll have the results on the 8th. This is the first time my surgeon discussed prophylactic mastectomy of my right breast. He usually surgically removes the calcifications but said if he does that he will have a harder time removing the breast. My insurance won't cover genetic testing b/c I'm adopted and don't have medical history - what??? I think all insurance companies should cover the cost of genetic testing of all adopted women with ALH - there are millions of us who can't get medical history! Insurance will pay for the genetic testing if my biopsy is malignant, which the surgeon thinks it is. If it is malignant I am opting for a bilateral mastectomy with reconstruction. My doc has me back on prozac and xanax b/c my clinical depression is back - on a scale of 1 to 5 I'm a 3 right now. I'm only functioning b/c of the drugs. I was diagnosed 10 years ago with depression after an abusive marriage, my husband going to jail, filing for divorce and personal bankruptcy and taking care of my elderly parents (all of which occurred over a space of 3 years), and have been off all meds for the past 4 years and was doing so well!

My surgeon and genetic counselor said b/c of my history I have a very, very high risk of getting breast cancer. Because of this I want both of my breasts removed. They both agreed with me b/c I'm only 45 and this has affected my mental health too much. My surgeon told me yesterday that if I was 75 or 80 he would send me home and tell me not to worry about it!

I have to call my half sister and ask her for family history of her aunts, uncles, great aunts, etc. and try to get her mom to id my birthfather so I can search for him. This is going to open a can or worms b/c my birthmom wants nothing to do with me. But my surgeon and genetic counselor told me that my half sis needs to know about my condition - she's 38 and could be facing the same thing. I'm grateful that she's an RN and understands. This will be an interesting conversation. Hopefully we can develop a relationship from all of this. We do plan on meeting after her mom is gone, but by that time we could be old ladies. I contacted her almost one year ago and haven't heard from her since, but this is something I must do.

I've lost 7 pounds in two weeks from not eating. At least I'm losing weight that I need to lose. I'm still here and trying to cope. I have to keep plugging along - too many people depend on me! This board is a lifesaver for me. Thanks for reading and commenting. I'm glad I'm not alone in this.

leaf

Oh, Kitty123, I'm so sorry you are going through this. It must be horrible to go through. You are not alone.

I, too, have LCIS (with 'features of ALH'). I have a weak family breast cancer history.

I had a core biopsy 12-05 that showed LCIS, and an excision 1-06 to 'verify the diagnosis'. I had genetic counseling 3-06, and opted not to have genetic testing as they said I have a low probability of having mutation. I have had an ultrasound 4-06, and digital mammos and ultrasounds every six months since 1-06, went on tamoxifen 7-06, and had another 2 biopsies 2-07, both read as benign (at worst ductal hyperplasia without atypia.)

I am so sorry to hear that your insurance will not cover genetic testing.

I found one of the two biopsies this spring almost unbearable because I was informed they had potentially 'mislabeled' an area under my nipple that they were following for ultrasound as scar tissue. This plainly visible abnomormality just under my nipple could have been ILC that was there for 9 months and went through 3 sets of radiologists and sonographers. It was read as benign (one was ductal hyperplasia without atypia.)

I have major problems with my breast surgeon (we have very different styles of communication), and she has said she is not interested in doing further surgery on me, even before my 2 biopsies last spring. Well, I should have read the red flags because her initial words at my first visit (after my core biopsy showing LCIS, but before the excision), her initial greeting to me was "If you want prophylactic bilateral mastectomies then I will fall over in my chair." I think it is absolutely presumptuous to say that to a patient when you have no idea what this means to the patient.

I find it so hard to not be anxious about breast cancer. I am a basically quite anxious person to begin with, and this has not helped.

I decided to get a 2nd opinion at a major university in July. I am getting many of my slides reread there also. My onc said to ask them how often I should be monitored with MRI - should it be 1x or should it be on a routine basis, for how long?

If Major University does not think I am off the wall for desiring PBMs, then I will be searching that.

All of this anxiety takes a toll. I so wish there was a magic way some of the stress could be eliminated in your life. It sounds like this is really affecting every moment in your life. I am so sorry.

Cheryl54

I am one of the several here who have had prophylactic bilateral mastectomies. I complete the final phase of my reconstruction (nipples) on Monday. It was the right decision for me. I've had good results with recon and the decision freed from 20+ years of worry. My family history of bc was extensive and I had had years worth of bad lab results in a high risk breast clinic. I knew beforehand that I had ALH and ADH, but found out after surgery, in the final path report, that I had multifocal LCIS and a host of other junky cells, including sclerosing adenosis.

Overall, I am ecstatic with my choice and plan to celebrate the one year anniversary of freedom from anxiety on July 20 (one year since my pbm).

I know this may not be the right decision for some, and perhaps it appeals to only a few. But it was the right decision for me, and I have not had a moment's regret.

My mother died from metastatic bc after having it in both breasts. Her sister had it, too, and died from complications of treatment. Even with that, it took some gentle confrontation from my breast doctor to get me to face my risk level (85% lifetime risk). Once I did though, the decision was not that hard. In fact, the decision made itself once I faced the reality of the stats.

The surgery frankly was not all that hard, and the recon has been a positive experience. I have great doctors -- all women, including the surgeons! -- and they have been very supportive.

Getting to a decision point is often difficult. I know, it took me years. I'm happy now, though, and look forward to a future no longer burdened with endless "what ifs..."

I hope you, and each woman here, is able to find the right path. Sometimes it takes quite a while. Good doctors help, as do supportive friends and family. I feel blessed.

cho

Kitty, my mom left when I was 1 1/2 years old so my brother and I were reared by my Dad. She has always chosen to live as far away from us as possible and she's more like a distant relative than a mother to me. I call her mom and I send her gifts on occassions (but never send a Mother's Day card as none of those cards "fit") and call her, she rarely calls me. The pain you are feeling from abandonment I truly understand and I just want you to know that your mom is embarressed of her sins...it is not you. She tried to hide the road she had been on...she doesn't know how to handle you in the way you deserve to be handled...an "I'm sorry, I was wrong" would be nice wouldn't it? But she is only human as is my mom...I will be praying for you...I think beneath all your problems lies a beautiful, strong woman. You have been under attack by the enemy but sister there is power in prayer. And sometimes the key to recovery is forgiveness. I may be on the wrong track but from personal experiences forgiveness was a big thing for me.

Kitty123

Thank you everyone who has replied to me. I feel so much better. I'm with you Cheryl 54, a bilateral would free me from so much worry in the future. I'm glad you replied to this, and I'm sure I will have more questions for you after I get my biopsy. My stereotactic biopsy is scheduled for this Thursday and I will have the results on Friday, the 8th. It's really funny, but since I know what I'm facing I have not been wearing my prothesis and it doesn't bother me that I'm lopsided! I don't care what other people think, and that's a huge step for me.

Cho, I have forgiven my birthmom. I just wish she could forgive herself. I won't make the call until I have the results on Friday, but my half sister needs to know for her own sake. You're right, an I'm sorry would be nice to hear but I understand her fear. My own mother couldn't even say I'm sorry to me for being an alcoholic all her life, until we got her into rehab when I was 30 years old. She did say I'm sorry but I don't think she ever meant it. Having an alcoholic mom who criticized everything I did for 43 years really screwed up my self-esteem, but that's an issue for my therapist. And since she died the constant criticism is gone. It was a relief when she passed. I would like a relationship with my birthmom but am not looking for a mother figure any longer. I have some older ladies that love to "mother" me and I have accepted myself as I am, while working on the damage my mother did to me. What I would really like is a relationship with my sister and I know that will happen someday. Yes, I pray all of the time and I know that God is with me always, so I'm never alone.

Thank you all for your stories and comments. You all have made me feel so much better. It's sad we all have to be in this club together, but I couldn't have met a nicer bunch of people. I'll be back to post my results on Friday, and you all are in my thoughts and prayers, too.

moogie

I had the surgery and if you would like to talk, PM me. It really helped stabilize my life, after so many biopsies and the disfigurement that random surgeries created. With recon, I'm feeling comfortable in my own skin, and not living in suspense every few months between imaging rounds.

Moogie

Kitty123

My surgeon just called and the cluster is benign! Thank you God. I'm more confused than ever. When we discussed biopsy he said if it was benign we would have a mammo, MRI and ultrasound every 6 months and start me on Tamoxifen. He just told me to get an MRI in Sept. and we will go from there. I asked about Tamoxifen and he said not yet. I'm relieved that I don't have cancer, but I still have ALH and think I should be started on tamoxifen. Any suggestions? Should I get a second opinion? My surgeon is on of the best in the area based at Bryn Mawr Hospital. My depression has not lifted, just relieved at no malignancy, but still worried about my future and going thru this every 6 months. I see my GP Monday night and will discuss with him. Thanks for all of your advice.

Anonymous

Kitty---I just sent you a PM. I would recommmend a 2nd opinion from an oncologist. As good as your surgeon is, an oncologist is better qualified to advise you of your risks and benefits of taking preventative meds, and for the appropriate tests and frequency.

leaf

I agree with awb. (I also have LCIS and nothing worse, with features of ALH.)
My docs said if I wanted tamoxifen, I needed to see an onc. So I did, and have been on tamoxifen since 7-06. Had 2 breast biopsies 2-07, both benign. Am having 2nd opinion at major university in mid-July, and to get my slides reread.

I know this is major time nervewracking. I'm so sorry this is happening to you. I hate going to the onc. He's a very sweet guy, but I hate seeing the other cancer patients. Last time the nurse asked me if I had a port in!! (Well, I can't expect them to know anything about LCIS.)

The people with the most expertise on high risk would ordinarily be at a high risk clinic at a major university/institution.

As awb said, you need to judge the risks and benefits of tamoxifen, and a good understanding of your bc risk. They probably know more about your risk than they do with LCIS women.

Wishing I could take this load off of your shoulders....

Peaches70

Kitty,
I am another with similar history. First diagnosed with ALH in left breast, then this year found multi-foci of LCIS in the right. Last year saw an oncologist who would not put me on Tamoxifen or anything. This year, a different oncologist who put me on Evista (I'm postmen). So far, so good, but if I have another biopsy with similar results, I may go for the PBMs. As drastic as that is, it would be less stressful in the long run.
Anne

jst59

I am new to this and glad I found this board. I have LCIS and have been on Tamoxifen for 4 years. I don't think many people understand the stress of worrying. While I am on the Tamoxifen, I feel like I am doing something, but when I am done next year, I am worried about the future. It's nice to know all of you are here with the same kind of worries.

Anonymous

jst---I feel the same way--I've only got about 15 months left of the tamoxifen. Then it will feel really strange not to be taking anything as a preventative. (I also have LCIS, diagnosed almost 4 years ago). My oncologist had talked about arimidex for a while, but now says probably not. (I'm somewhat relieved, didn't want to have to worry about the bone loss and more aches and pains). For now, I'm closely monitored with mammos alternating every 6 months with MRI.

ktwist

Kitty,

I read through most of the thread, but might have missed this....have you considered genetic testing? Considering you don't really know your family history and how close they are watching you..it might benefit you. Your doctor should be able to refer you to a genetic counselor. Some insurances cover the cost, others don't. I had bc last year and my insurance did not cover the cost for the testing, so I paid out of pocket...actually still paying it down (about $3200). It's something that might help you confirm your decision one way or another. I'm sorry you are going through so much stress. I rotate mri's and mammo's every 6 months too and although it's stressful, I try to let it go as much as possible and not think about it. Let us know what you do.

Karen

darkfairy

I had 7 lumpectomies plus atypical hyperplasia, ductal hyperplasia, multiple tumours (including one recurred phyllodes) and fibrocystic disease. My consultant wanted to put me on tamoxifen but I have a history of blood clots in my family so I decided it would be too risky. He finally agreed to let me have a bilat mastectomy, which I had 4 months ago. It is so strange to not have any lumps in my breasts after 16 years of having them!

I did have to really push for the mastectomy though and I'm really glad I did. To see all the horrible things mentioned in the histology gave me such relief to know I'd had all that removed. Sometimes surgeons and consultants can't understand how much worry multiple lumpectomies and hyperplasia causes a woman and so they think a mastectomy is a bit too radical. But it's a personal choice and if you've got to the stage that I had (which I suspect you might have!) then it's the right choice for you