ADH AND ALH??

missz

Any insight into my fabulous just-removed lump which, although "benign" has given me a diagnosis of BOTH ADH and ALH? Having both has gotta be worse, right? Right now I'm just getting advice to have a mammogram every year and an MRI every year, alternated so I am screened every six months. I turned 38 last week.

jetj

Both are risk factors only I think. Sounds like you will be well screened. I had LCIS which is a one in three risk roughly so I would hope that your risk is less than that. I only had yearly mammograms. Good luck, I hope you don't let the diagnosis get you down too much.
Janette

susan_CNY

back to topic

missz

I am confused: I'm being told that the dual diagnosis puts me into a very, very high-risk category and now they are sending me for genetic testing. Is this "high-risk women" the wrong forum and I am off-topic?

Anonymous

missz---welcome, this is the right forum. While ADH and ALH are not cancer in themselves, they are markers for increased risk (3.5x to 5x). I have not read anything that says having both increases your risk any further, so I don't know for sure about that. I was diagnosed with LCIS (a step higher up the bc spectrum with risk of 7x to 10x) about 3.5 years ago. Initially was treated with yearly mammos, breast exams 2 to 3x a year, and tamoxifen; last summer began alternating MRIs with mammos every 6 months due to risk being further elevated by family history. Do you have any family history of bc? Are you being advised/seen by an oncologist? Perhaps they are monitoring you closely due to your age and/or family history. While stressful, it is a good thing, so if anything is found, hopefully it will be found early when it is most easily treated. Genetic testing is usually recommended when there is a strong family history involved. Talk with your doctor who should be able to help determine your overall bc risk for the future. Feel free to PM me if you'd like.

missz

Thank you awb!! I have a great doctor so I feel very secure in his recs and the recs of the genetic oncologist. I was just confused about why I was told "back to topic"..maybe just a typo ;-)

Anonymous

missz: Sometimes, beyond the control of bc.org - alot of spammers get on this site posting inappropriate subjects. When someone saw this, they bounced this back to the topic which was ADH and ALH. The moderators were notified and that inappropriate post was deleted.

Knowledge is power. The fact that you had Atypical cells automatically puts you at risk for bc - thats why its important for you to be monitored closely.

Gentic testing was a good option for me. I was the one in 10 people who tested positive for BRCA2

Good luck. Sounds like you have a good team of doctors.

Nicki

missz

Thanks all- so does anybody know if having both ALH and ADH increases risk beyond having one or the other? My genetic onc seemed to think so- she said that would definitely get my insurance co to authiorize the MRI- which they did- so, that translates as "you're in a bit o' trouble, sister".

leaf

I'm so sorry you are going through this.

I tried to do a pubmed search on ALH and ADH (together), but I wasn't very successful.

Here they seemed to clump them together, and had no category for ALH + ADH. http://www.ncbi.nlm.nih.gov/sites/entrez...Pubmed_RVDocSum, http://www.ncbi.nlm.nih.gov/sites/entrez..._RVAbstractPlus

or they have separate categories, and not a 'both' category http://www.ncbi.nlm.nih.gov/sites/entrez..._RVAbstractPlus

Maybe this hasn't been studied, or studied very well?

nancy53

hi,i am grade 3 stage 1 minimally invasive doctal ca,no lymph involvment,but her 2 positive,onc this week,what can i expect to hear?thanks,nancy.

missz

Leaf, yes, from what I can see the combination of ALH and ADH has not been studies much. Even on the 14 page genetic testing questionnaire I just got, they are lumped together (no pun intended) as "atypical hyperplasia".
Apparently I get to be a fun test subject for the center where I will now be a frequent visitor.

leaf

Oh boy, missz, what we all want- to be fun test subject for the center.

I'm glad you're getting geneticized - they should be able to give you a better idea about your risk.

Don't worry, you have company 'unusual cases' here. This is about the 6th 'ususual' condition I have. They considered sticking me with a PTEN diagnosis (which they ended up saying is 'medically unnecessary to test for') , and there have only been 200 people diagnosed with that! (I have NOT been genetically tested.)

Aren't the genetic questionairres a riot? You can laugh or cry.

On my 'new patient' questionairre at Major University, they ask "Have you ever been diagnosed with Breast Cancer? Yes No
At the moment, I plan on circling both Yes and No, and asking them how they define cancer. (I have LCIS and 'features of atypical lobular hyperplasia'. Other biopsies gave ductal hyperplasia without atypia.) I'm getting them reread at a major university, so its possible I may join you.

I've seen case reports of very unusual types of LCIS, called various things like PLCIS, signet ring, etc.

Gentle hugs, Leaf

csp

Hi missz,
I also was dx'd ALH and ADH same breast.
I have googled the beegeebers out of the subject !!!
My Doctors like yours said I have to be watched closely
I have a mammo every 6 months.
The reason for every 6 mo. is my sister was dx IDC
2 years ago June 13th, and family history.

What I can gather and there is not much out there on the
subject of having both increases your risk higher than having just one or the other, ALH increase your chance for both breast.
ADH carries a slightly higher risk factor than does ALH.
Vanderbilt University seems to have the most info on the subject and that is where my slides were sent to determine whether it was DCIS or not. I also read that the cell division can look alot like DCIS but is not.
Our risk is not as high as LCIS . It is sooo confusing
to me!!! So I go get squished every 6 mo. and do SBE.

If you ever do run across any more info on HAVING BOTH
I would love to read it ! Thanks for posting I was thinking
I was alone with this weird stuff !!

Hugs,
Carrie

LizM

Here's my story. Don't want to scare any of you but thought you might like to hear it. I was diagnosed in Oct 04 with ADH by stereotactic biopsy. Then had excisional biopsy and it came back ALH. I was being treated at Johns Hopkins. They went back and tested the specimen from the first biopsy again and it still came back ADH but there was no ADH only ALH in the larger specimen from the excisional biopsy. Due to this I was put on a six month screening program with mammogram (but no MRI). I did ask my breast surgeon if I could also have an ultrasound. Fast foward to Sep 05. Mammogram was clear but ultrasound found a suspicious mass. Biopsy came back as invasive ductal carcinoma. Opted for bi-lateral mastectomy. Final pathology was insitu and infiltrating mammary carcinoma with ductal and lobular features (IDLC). I have since had chemo, rads and am on Arimidex and so far so good. I am telling you this because I am one who had ADH and ALH and ended up with IDC and ILC all in the same breast. Also, the pathology on my prophylactic side came back as ALH so it probably would have developed into IDC and/or ILC down the road. Please ladies be diligent in your screening and I highly recommend having MRI's as part of your screening. My sister was also diagnosed a year and a half before me.

csp

Liz,
Thank you so much for your response.
I have had 2 excisional biopsy. The first was ADH & ALH the second
was ALH. Both times The lumps were the same
breast left @ 12 oclock very close to each other. You did
not scare me, not knowing scares me more ! You have only made me want to continue to be diligent and push for an MRI. I have had ultra sounds and diagnostic mammo's and
the last biopsy was wire guided.

I am due for another mammo and once again I have a stupid
lump ,I was thinking I am feeling things that aren't there ? I really would like to go to a breast surgeon or
specialist , I think I would feel better. So far I have been seeing a General Surgeon and my family doctor.

leaf

Thank you again, Liz.
I am so sorry you are once again dealing with the scare of another lump, csp. Half of the time I fear I am feeling a lump, and my breasts are quite smooth.

I am getting my slides reread and 2nd opinion at a major university on July 13, and I may transfer part of my care (radiological) there depending on my experience. (This was after my ultrasound was 'potentially mislabeled' as scar tissue, and this 'potential error' was missed by 2 sonographers and 2 radiologists, over 9 months.)
I just transferred the mammos and ultrasounds over to the major university yesterday, and (of course I read the reports), which did not mention things like the hematoma where they had to compress my breast for an additional 2 hours to stop the bleeding, the potential mislabeling, etc....

I was directed by my onc to ask at the major university how often I should be followed by MRI. I am asking for an opine if my wish for PBM is unreasonable; my surgeon does not wish to do any more surgery on me.

I will report back my results.

Thinking of you, csp.

Leaf <LCIS, features of ALH (biopsy+excision), with mild DH on 2 other biopsies within 13 months, and a low family history for BRCA.>

gracejon

My lump was invasive lobular carcinoma. I opted for bilateral mastectomies. My non cancer breasy had all four quadrants of LCIS and two different areas of ALH and ADH. My surgeon said I was at very high risk of developing invasive cancer in that breast. I am very happy to hear that everyone is getting MRI's however my pre operative MRI found nothing suspicious in my non cancerous breast.

csp

jon,
It is so hard to know really how hard to push for more test. I have been around you all for a couple of years now and I know that the risk is there even without the ALH & ADH because of my sister deese's dx. So would it be over reacting to think that in combination with having both ADH and ALH and first degree family history my risk is pretty high? I am slow to wrap my brain around it all.

leaf

This study may have far fewer patients than what you want to use as a screening tool, but it had 126 patients with AH. It also had 252 women with LCIS. If you only look at the cancers that were generated by MRI results, NONE of the MRI-generated cancers were from women with AH. It concluded that "Patients with AH and LCIS seleceted to undergo MRI screening were younger with stronger family histories of breast cancer. MRI screening generated more biopsies for a large proportion of patients, and facilitated detection of cancer in only a small highly selected group of patients with LCIS."

I'd provide a link, but the Pubmed server seems to be down. It was done at Sloan-Kettering Cancer Center. 2007 Mar; 14(3): 1051-7, epub 2007 Jan 7. Title: Results of MRI screening for breast cancer in high-risk patients with LCIS and atypical hyperplasia, Pubmed id 17206485.

Anonymous

csp----having ADH/ALH combined with your sister's history of bc does put you at higher risk. There's a whole list of things that can affect a person's risk, so the best thing is to sit down with your doctor so he/she can calculate your individual risk. (if you haven't done that already). I know that even with high risk due to the combination of LCIS and family history, it took me almost 3 years to convince my oncologist to let me have MRIs alternating with mammos every 6 months. Initially he felt they had too many false positives, now he sends me readily. The new recommendations that came out recently for use of MRIs with high risk stated 20 to 25% or higher, I think (I can't remember the exact #), so it should make it easier to get it covered by insurance.

csp

'MRIs with high risk stated 20 to 25% or higher, I think (I can't remember the exact #), so it should make it easier to get it covered by insurance.'

awb is there a web I could go to and print out the report
I tried to get a MRI the second time I found a lump.
that time it was ALH My doctor poo pooed the ideal. Maybe with the report I could get a referal for one ?

Carrie

LizM

It saddens me to see that doctors and especially breast specialists are still balking at getting MRI's for high risk patients. After my diagnosis of ALH and ADH in Dec 04 I asked my breast surgeon who is the chief of breast surgery at Johns Hopkins if I should have an MRI and he told me no. He did agree to a diagnostic mammogram which I had the next fall which found my breast cancer but I still believe that if I would have had an MRI 8 months earlier my breast cancer would have been found at an earlier stage. When the ultrasound finally picked it up in Sep 05 it was 1.4 cm and final pathology after bi-lateral showed it to be 2.1 cm and in one sentinel node making me stage II. I had very dense breasts and the mammogram was probably never going to pick it up. I will never know if the MRI would have picked up my breast cancer earlier but I suspect it would have and it haunts me to this day.

leaf

I am so sorry what you have gone through with the most expert experts, LizM. Thank you so much for sharing. It certainly helps me to see what other people were told and what happened to them.

It sounds like you have gone through a haunting experience, and it takes quite a bit of time to work through it. Please know I wish you well. Thank you again.

csp

Liz,
I feel so frustrated for you, and myself too! I feel worried many times that something is not right with that
breast , and I get all ready and loaded for bear when I go
to the Doctor with another lump but they have a real gift of making you feel like you are making much out of nothing.

I feel the lump so do they ,They cut it out and here I am with another one !! Almost in the same place a couple inches beside the last one . I really hate this , but I do not dare not have it checked either. I never ever thought I would be going back 3 times,I thought after the first one that would be it ,It is scarey.

Liz thank you for sharing , I will try my best to get that MRI . I have had the diagnostic twice in the past and ultra sounds too. FNA, WHICH I WILL NOT DO THAT ONE AGAIN.

Hugs,
Carrie