Atypia Hyperplasia-Now What?

mkd1061

Hi,

I have a strong family history of BC (sister pre-meno, mother post meno, both grandmothers) and have received the results of my biopsy showing that I have atypia hyperplasia.  My sister had genetic testing with inconclusive results of variant so they have stated that I really don't need the testing at this point.   My Gail scores are 10.2 and 61.7 so definitely high.    I have to have an excisional wire guided biopsy in the next couple weeks and from there I need to make some decisions.    I have been put on a strong surveillance program and they are also suggesting the possibility of tamoxifen being added to that, or a prophylactic bilateral mastectomy.  I will be meeting with an oncologist and a plastic surgeon to get info but I'm curious if anyone else has gone thru this, what their experience has been with either option and certainly any opinions.

It's a big decision and I want to make an informed decision.   Thanks for your help.

ree

It sounds like you are the type of person who likes lots of information before you make decisions.  Me too.  If I were you I'd make a list of questions for the doctors.  How extensive was the ADH - one site or multiple?  How abnormal are the cells - more like atypical hyperplasia or more like DCIS?  I have ADH and had DCIS in both breasts in 2006 treated by lumpectomy and radiation so I'm in a similar situation.  Looks like the cancer might be trying to come back so I need to figure out what to do.  A person can only have radiation on a body part once so I've used up that option.  Reconstruction is complicated by radiation and by my hysterectomy, C-section, and lack (!) of stomach fat.  Radiation makes inplants difficult and the surgeries to my ab area make DIEP reconstruction iffy. You're wise to meet with the PS now. If you have any similar issues you'll learn about how they impact your breast reconstruction options.  I don't know that reconstruction should influence the decision to have or not have a mastectomy but I am vain enough so that it is for me.  You mentioned a strong genetic link.  I don't have the BRCS or whatever it is gene problem but if you do doesn't that mean that you are also at high risk for ovarian cancer?  If you've got that issue then wouldn't you need tamoxifen even if you do the mastectomy?   You've got a complicated situation but you're taking the right approach by getting information and learning all your options.  I suggest you bring someone with you when you see the doctors.  I had my husband there and he was a real assist to me later when I started questioning my recollections.  Me, I'm not sure what I'll do yet.  Probably a mastectomy because I'm healthy enough to have that done now and might not be when my luck finally does run out and the ADH turns in to something worse.  But I change my mind by the minute.  

mkd1061

Ree, thank you for your thoughts and good luck with your decision as well.    I had a hysterectomy 5 years ago due to another issue (non-cancer related) along with that had my ovaries removed so Ovarian cancer is not an issue for me.

 I do like having a lot of information but I also feel like lately I change my mind by the minute some days!  The increased testing that I recently had to do and the waiting for the results was just miserable and the idea of continuing to have that hanging over my head is not a good feeling.  It's just tough when there is not a clear cut answer of "what to do!"  Thanks again for your words of advice.   I agree that I need to find someone with me when I go to the dr to get more information.   I'm single and hate the idea of putting that burden on my daughter or my son (both adults), and I don't have family members nearby.  I will look into having a friend come along with me, as it does get emotional and it's hard to go back and remember everything that you are told.

leaf

Hi there!  I have LCIS, ALH, and ductal hyperplasia (not atypical for the ductal). 

Know there are limitations to the Gail model, and a model that included the Gail model plus other risk factors such as breast density.  In one study, these models very good at predicting how many individuals in a population will get breast cancer. They were not good at predicting WHICH women in that population got breast cancer.

This academic editorial was an eye opener for me. http://community.breastcancer.org/forum/47/topic/692321?page=1#idx_8

"  Thus, for any given woman, the two models were better at prediction than a coin toss — but not by much."

samiam40

I was diagnosed with ADH and LCIS in the right breast in 2002.  I also have a strong family history of bc.  I was offered and declined both bilat mx and tamox, and instead elected close surveillance.  At the time I was only 33 and wanted more children.  I have since had 2 more kids, but I also developed invasive ductal carcinoma.  Surveillance has its limitations--even with mammograms and exams every 6 months, my cancer was only detected on MRI and not until it was 2.6 cm and invasive.

Your age might play into it your decision-making.  I was resistant to taking tamox b/c I was so young.  If you are past child bearing, I would definitely consider it.  See how you tolerate it.  Some people hate it--others do fine with no side effects.   Prophylactic surgery was too radical for me and even though I have developed cancer, I know that declining the mx was still the right decision to make in my situation.

Best of luck to you whatever you decide.

Daudine

Hello MKD1061,

I am 38 and I have also a strong family history of breast cancer. I was tested positive for BRCA1 and had atypia hyperplasia too. I decided to go through the ovariectomy and prophylactic bilateral mastectmy in 2008. I just finished my breast reconstruction. It is a big decision to make but I'm relieved I did it. If you have more specific questions, feel free!

Daudine

Anonymous

mkd--I am high risk due to LCIS and family history.  I am under high risk surveillance---alternating MRIs with digital mammos every 6 months, breast exams every 6 months on the opposite schedule (so I'm essentialy "seen" by some method every 3 months), US as needed, and I just finished my 5 years of tamoxifen about 4 months ago.  My risk numbers were very high as well--- my doctors all felt bilateral mastectomies were too drastic, but I wanted to be  proactive so I decided on the tamox and fortunately tolerated it pretty well overall. I often recommend a yearly transvaginal US to monitor both the ovaries and the uterine lining, but since you've already had those removed, that's once less worry you 'll have if you decide to take tamox. Feel free to PM me with questions if you'd like. (I'm now taking Evista for further prevention and doing well so far.)

Anne

mkd1061

I am so glad that they have these message boards!  Everyone is so helpful and generous with information.  Its such a big decision to make and the additional info is sure to help.  My mother took Tamoxifen after her first lumpectomy and really didn't tolerate it well so that does make me nervous.  I know that everyone reacts differently so I keep trying to think of that way.  I also think about how difficult the last couple weeks have been with all this testing and the dreaded waiting and wonder will I be setting myself up for this wondering and waiting every time?  I feel like I'm just waiting for the shoe to drop and it becomes my turn.  I know the bilateral mastectomies are a drastic choice, but it also drops the risk factors down so much that you can't help but think of that as well.   Basically my brain just keeps jumping all over the place!   My breast surgeon said that is normal and that is why she recommends waiting to make the decision so that I am sure.   What is the "typical" recovery time from the bilateral mastectomy?   

Again, thank you everyone for your help and the information. 

Daudine

The recovery time from the initial mastectomy is about 2 weeks but the reconstruction process is long. I had my bilateral mastectomy in May, started the filling in September (late du to complications) to November 2008. I had my connectors removed Feb 3, 2009 and will have my tattoos in May. So one full year to complete the process. I am glad I am almost finished. I don't like my breasts but I like my cleavage...very nice

Good luck!

samiam40

Typical recovery time?  I wish I knew.  I am 3 weeks out and still feeling a lot of pain, soreness, discomfort and fatigue.  It is a huge operation that requires a lot of time to heal--I don't think I fully realized just how hard it would be.  I figured since I am so young and was in such good shape, I would just "bounce back" after a few weeks.  I was unrealistic.  I am hoping that I will feel better after another week or so (that would make it a month since the operation), but wouldn't be surprised if it takes even longer.  I'm not trying to dissuade you--just telling you the truth as I have experienced it.

Lisa68

I had my first baseline mammogram at age 35. Had my first annual mammo at 40. I was recalled because there had been a change.  The next mammo confirmed microcalcifications and I had stereotactic biopsy that same day (2/3/09) and ADH was found.  On 2/26/09 I had a Breast MRI w/ die contrast.  The results were no suspicious findings.  On 3/3/09 I had a excisional biopsy and I am extremely thankful to say I do have ADH but the biopsy revealed only fibrocystic changes. I will have follow-up mammograms every 6 months and see my Onc surgeon after Mammos.  I believe I will continue annually to have the MRI.  My surgeon offered me Tamoxifen... but I don't feel that I am ready for that yet. 

Five years ago at the age of 58 my mother had DCIS stage 0.  However, the only followup recomended after her excisional biopsy was mammo every 6 months.  We have requested my moms pathology reports because she was never given a copy.  This will be an important key for both of us.

Lisa68

mkd1061

Good luck Lisa68 I hope you receive good news on the results.   I have my excisional biopsy on the 16th.   The waiting is just terrible.

Lisa68

Thank you.  I am so glad I found this site... The more information I have the better I feel.  Can't imagine not having this resource.

floridian

Hi Everyone -

I'm glad I found this thread - My Gail is 49% and my Gail plus is greater than 85%. I figure it's kind of like the rain prediction in Florida - if they say 50% that means it will rain 50% of the time. Since it's an all or none - you either have BC or you don't, it makes sense to me that if they say 50% they mean 50% of people with those characteristics will have BC and the others won't and they don't know which ones out of the population it will be. How many are out there that have the same problem I do - my breasts are so dense that mammos are useless and US and MRIs aren't much better? They did all three and couldn't see the large palpable lump they just took out. Surveillance doesn't seem to be much use.

RE mastectomy: Does the recovery time depend on what type? Also, does it depend on what type of cancer? In other words, if I did a prophy, could I keep my skin and nipple and do immediate recon vs waiting to see if BC develops and then lose skin and nipple and have to do expanders etc? Plus maybe radiation so no recon? I'm not very well informed on this stuff and am hoping to learn more. If I keep having to get these lumps out surgically, I may want to opt for this. I've already had the nipple scraped on one side plus enough tissue out that my right breast is about 1/3 gone and completely different than the other. The nipples are now not at the same height. Although maybe if I wait and the new lump on the other side grows under the nipple as well, they will match - they will both look like volcanos with the tops blown off! Good thing I'm not that vain!

floridian

Hi Again -

I just read the academic editorial about Gail. I think the difference between that and my thought process is that I'm not just worried about the next five years which looks like what they based the studies on. If you start from 1 out of 8 and then add family history, dense breasts, biopsies etc. you are likely to get higher than 50% for lifetime. I figure that if I'm going to get breast cancer at any time in my life, it may be better to have surgery done now to deal with it while my overall health is better than wait to deal with it under deteriorating health. I'm not there yet, but I'm guessing that's where I'm heading mentally. This stuff wears me out.

Kim

samiam40

Kim, I had dense breasts (despite their having virtually no volume after breastfeeding 4 children) and mammograms and u/s were useless.  They all came up clear.  MRI, however, detected my breast cancer and is a vast diagnostic improvement for dense breasts.

Recovery time does depend on what of surgery you have.  If you do delayed reconstruction, you should heal much faster.  If you have tissue expanders implanted at the time of the mastectomy to preserve and stretch the skin, your recovery will be tougher.  Flap surgeries (diep, tram) are a whole different ballgame with a lot longer recovery time.

Whether your mx is prophy or not, you can keep the skin--it's called a skin-sparing mastectomy.  I believe if your mast is prophy, you can keep the nipple.  However, if you have already developed cancer, you definitely cannot because it contains breast tissue.

I would not recommend "waiting until breast cancer develops."  You might end up like me, waiting too long, and not being diagnosed until the cancer is invasive.  A diagnosis of DCIS (pre-invasive) is much easier to deal with and considered completely "curable" with appropriate treatment.

leaf

Here's an academic editorial (2006) on the usefullness of the Gail model.  You may find  very relevant in evaluating how important the Gail model is for YOU as an individual. 

http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

SoCalLisa

After two cancerous tumors in the my one breast, mastectomy, chemo..

They found ADH in my other breast ..I had a lumpectomy/excisional biopsy

and I had been on Tamoxifen for a year...I switched to arimidex and did that

for four more years, totalling five..I finished up with that three years ago..

now we just watch the other carefully..

leaf

Here's an academic editorial (2006) on the usefullness of the Gail model.  You may find  very relevant in evaluating how important the Gail model is for YOU as an individual. 

In short, it says that the Gail model is better than a coin toss at predicting if a particular individual will get breast cancer, but not by much.

http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

floridian

Hi SamIAm -

Thanks for the info. I'm curious that the MRI found yours because at the bottom of my MRI it says that it may not pick up DCIS in dense breasts. Do you think it's pretty accurate (sensitive)? It didn't see the lump they just took out or the two other ones. 

Kim

Deirdre1

My DCIS was ONLY picked up by MRI - I had had (within the same week) a regular mammo - digital mammo - sonogram - and MRI all withint a week everything came back with negative finding except for the MRI.. the lesion was small and it was confirmed as DCIS at final surgery.. 

Deirdre1

SamIAm40 said:  A diagnosis of DCIS (pre-invasive) is much easier to deal with and considered completely "curable" with appropriate treatment."

I don't know if it is easier, there is so much confussion within the medical society that it gets treatment that is considered extreme in the invasive world (sometimes)..  I lost both breasts to DCIS..  I understand what you were trying to say but I don't believe it can be minimized like this without many women feeling like their experience with DCIS are dismissed . I have asked my bs if I am "cured" after a bi-lateral for DCIS and she says that with all that she has seen no and I need to be check annually with an MRI.  When I asked if I could avoid the MRI she said no she wouldn't recommend it and she would have an MRI herself if it was her.  So if the cure rates is really that high she shouldn't be worried about me at all - right?

mkd1061:  Having gone through a bi-lateral with reconstruction I think the  "watchful waiting"  and an MRI every 6 months.. (I know ladies most doc say mammograms at 6 months and MRI at 1 year).  Also just because your sister's was inconclusive (BRCA) doesn't mean you shouldn't have one done - unless the relative that has bc is tested each sibling should be check independent of the other's outcome.  And after after having the bi-lateral myself I always suggest that women (or men for that matter) alway go to a counselor/ therapist before making such a drastic decision!  I thought that I would be OK after the bi-lateral and immediate reconstruction with silicone implants.  I am not - the psychological ramifications can be huge and I don't want you there either..  A therapist can walk you through this in a way that you will hear your own voice without the helpful and loving influence of the others in your life and this is a decision that will effect YOUR life - that you will have to live with ..  Good luck and I wish for you the best outcomes!!!

samiam40

Dierdre, I am not minimizing DCIS, just saying its a much better diagnosis than IDC.  I lost both breasts to IDC, am doing chemo, 5 years tamoxifen and statistically still have an 8% lifetime recurrence rate.  And by recurrence, they mean distant (metastisis).  I'd take DCIS over that any day.  Hope you don't take offense to this post, cancer is cancer and it is all bad.  However, a diagnosis of noninvasive is always better than invasive and I'd be shocked to find anyone who'd trade.

Deirdre1

Non taken, I was just concerned with someone who might be newly dx'd and see that and think it was another "oh it's not cancer - it's precancer".  So I wanted to make that point within the same post..  Best  PS I would trade for Atypia Hyperplasia myself!

mkd1061

Thank you for the additional information.  I truly don't know what I'd do without this message board and everyone that so graciously gives information.  I am so emotional these days in trying to make the "right" decision when everyone says there is no right or wrong.  Friday I had my "pre-op" appts for the the excisional biopsy and had a couple of meltdowns.  I don't know if it is just stress, or that I have been off of my hormones now for 2 weeks.  Yesterday I went shopping with my daughter and when I was trying on a blouse I noticed that I had a discharge soaking thru my bra.  Before it only happened when I manipulated it never spontaneously.  At the time the BS said, well I'd be more concerned if it was spontaneous.  Hmmmm....do I start worrying now?   I guess I just need to take a deep breath and get thru this biopsy.

Again, many thanks to all of you for the additional information! 

karen9516

I had nothing more than Atypical Lobular Hyperplasia. I had a bilateral prophylactic mastectomy on the 19th of Nov. It hasn't been that bad. It's all in your attitude and how much you would worry if you didn't. My mother in law died of cancer at 50. She had cancer, rads and chemo and they were watching every 6 months and at a 6 month check up they found an aggressive tumor and that killed her. If you want to private message me I would be glad to talk to you. I am a nurse and I don't have that faith in doctors that lay people have that they will watch me good enough. I wanted to take control myself and if I still get it no one can say I wasn't proactive.

Deirdre1

Karen9516:  with all due respect, attitude doesn't change everything and if you asked my closest friends I had a great attitude going into the bi-lateral with immediate reconstruction - it doesn't change the fact that the surgery changed me and not for the better.. and I am not talking about the lack of breasts - it is a psychological change that should be addressed before surgery and that therapy should be made a part of the treatment up front before a women (or man) has to make such a hugh changed to their body mind and spirit (I am speaking more about spirit here).. I was well versed in the procedure, complications, and my own ability to make the choice BEFORE I went into the operating room but still this took something away that I think could have been changed if the support is given to many women before the surgery..

I too watched someone I loved very much die of breast cancer, my father and I believed that the decision I was making might actually save my life!  But still there is a deep wound that has not been healed and I have spoken to many many women who end up feeling this void.. It's not a matter of attitude or approach or even being sure you are making the correct decision.  It's about the long term effects on the psyche..  and I would like to see mkd1061 avoid this if at all possible. 

mkd1061

Thank you so much for your concern Dierdre1.   I do appreciate your thoughts and your input.

oncRN

Everyone has to reach their own best decision, but I will share my history and decision here, in hopes that it helps someone. I had my first lumpectomy at age 25, and have had at least 6 lumpectomies since, the most recent one being ADH.  I am 44, have never had children, and have extremely dense breasts.  Mammograms are worthless on me, and I have a lot of scar tissue from my past surgeries.  I am also an oncology RN that gives chemo daily in an outpatient clinic.  While I had originally chosen surveillance including annual MRIs, the most recent MRI was again inconclusive about some "probably benign" changes and recommended increasing surveillance to MRIs at least every six months.  I cannot deal with laying in that tube every 6 months for the rest of my life, and having a professional breast exam every 3 months.  I need peace, and because I am living and breathing cancer every day with my patients, I just cannot continue on the wait and see path.  It is too consuming for me, and I am having a bilateral nipple and areola skin sparing mastectomy with tissue expanders on 3/26.  I do not think my decision is right for everyone, but I know in my heart it is right for me.  I am afraid of the surgery....infection scares me and I know I might not have a great outcome even though I am very healthy now.  But I am even more scared of not having the surgery.  My lifetime risk calculates to somewhere between 35-80%, and that is just too high for me.  Now, I look forward to being on the other side of this and I pray a lot.

mkd1061

Good luck with your surgery OncRn.  Since you are in Maryland can I ask you who your Dr's are and what hospital you'll be going to?

oncRN

I am going to BWMC in Glen Burnie..I used to work there and know/trust the surgeons I have chosen...Dr Drogula for mastectomy and Dr Brown for reconstruction.