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Atypical Lobular Hyperplasia is my diagnosis
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jean1960 posted:
Good morning ladies!

I had my return appt with my breast doctor yesterday 12/23 and he said he needs to take out more tissue. This time I have to go in the hospital, under general anesthesia and have the tissue surrounding my original biopsy site taken out. He said something along the lines that this could be masking cancer and he wants to be sure because if left there, it could become cancerous.

I'm confused! I thought my biopsy a week and a half ago was benign. Only to return to my appt and find this out. Can anyone explain this to me? He did a great job explaining, but, of course, I have questions afterwards.

My daughter came with me and was able to explain a little bit better. She's a bio-chemistry major and actually understood all this. The doctor said "don't let this ruin your holidays"....it just makes me wonder. Here I'm thinking I'm safe and then this!

I hope everyone has a wonderful Christmas and a happy New Year!

Jean
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judyfams responded:
Jean,
Atypical Lobular Hyperplasia (ALH) is a condition that means there are cells in the lobes (milk producing glands) of the breast that appear to be abnormal. When the original biopsy (probably core needle) was done a piece of the mass and the surrounding tissue cells were removed.
The mass itself was benign, but the surrunding cells showed some abnormalities (atypical) which need to be investigated further through a procedure called excisional biopsy. That is done under general anesthesia and is very much like having a lumpectomy.
It is done so the doctor can determine if these cells are isolated or are possibly part of another lobular mass not picked up from your earlier tests. That is the reason for the excisional biopsy - just to make sure that these are just abnormal cells having nothing to do with anything else going on in the breast.
ALH does not usually lead to breast cancer, and if it does it is very slow growing and could take many, many years before it becomes cancerous. All it means is that there are some abnormal cells that need to be watched and monitored over the years. A large percentage of women with ALH do not develop breast cancer.
It sounds like your doctor is being very cautious and thorough with you.
So I would tell you to absolutely follow your doctor's advice and enjoy the holidays. If you feel too anxious ask him for something to relieve your anxiety.
Let us know how you are doing.
Judy
 
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jean1960 replied to judyfams's response:
Thank you Judy! That helps explain things. I am so going to follow his orders and enjoy my holidays! Started this evening with church and a wonderful Christmas Eve dinner at my daughter's. I just love seeing the holiday thru the eyes of a 5 year old. My grandson was so excited! I love it!

Merry Christmas to you. I will let all of you know how things are going.
 
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lotsastress responded:
Hi Jean,
It seems we are in the same boat right at the same time! I tried not to let it overshadow me over the holidays but my anxiety seems to come in waves, more so because my Mom just finished chemo for invasive lobular breast cancer. I've always gone for my mammograms and encourage all the other women to be on top of preventative care and I think with the steps we are both following is exactly what we are doing. I am having my surgical biopsy done on the 26th of Jan. I am praying for positive outcomes for both of us so the New Year can bring on great things! I must note also my Mom just had her pet scan results come back- "No evidence of Cancer", she will continue to have radiation for approx. 5 weeks, she is a tough lady and will conquer it all!!!!
 
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jean1960 replied to lotsastress's response:
That's exactly how my anxiety has been...coming in waves. I am praying to keep positive too! My new year has been off to a rocky start, that's for sure.

I've had more women ask if I felt a lump and I tell them no. It was found on a mammogram ONLY! I would not have known had I not been having yearly (the past year it was every 6 mos) mammos.

That's quite a wait for a biopsy...the 26th? Wow I'm glad I got in earlier. Even tho that is worrisome because I'm like why the hurry. Everything has happened so fast since my original mammo in Dec.

Good luck on the 26th! Let me know how you make out! Your Mom will do just fine...it's the toughness that keeps us going!

Hugs to you!

Jean
 
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cindy12345678 responded:
Jean,
I am glad you go for your mamos. It is a great way to tell
if there are changes.I hope it is nothing. I had 2 primary
cancers. I had dense tissue for years. On the dense tissue
side I did eventually feel a lump. It was lobular. The other
side was just a thik spot. It was hiding a her2 ductal tumor.
So I am glad they are keeping a watch on you. A biopsy
is the best sure way to tell what it is or isn't, I am hoping for
isn't . Good luck , and try not to worry. I tell myself not to
worry about things I cannot change. Not that that always
works!LOL I will be on Pinkie with the others !
Cindy
 
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lotsastress replied to jean1960's response:
Hi Jean,
Well, I got a wave last night, didnt sleep much, hopefully make up for it tonight. I would prefer to get my biopsy done tomorrow if I could but my surgeon went on vacation for a week. My patience has been put through quite the test, but I trust my surgeon (My Mom's also) so I will wait for his return. Anyway, my abnormalities began with notable microcalcifications so there also was no detectable lump. I also have inherited very dense breast tissue (wonderful), my mammogram looks like you are looking into a cloud! When is your biopsy?? I have learned with my Mom it is definately a step by step process, and there is a lot of waiting. We are both taking the right steps and that is what I keep reminding myself, I think we are from some tough stock!! My best to you Jean
 
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jean1960 replied to lotsastress's response:
I had my stereotactic needle core biopsy Dec 14th and the excisional surgical biopsy on Jan 11th. I go back to the breast doctor tomm (1/17).

Ya know, a couple of you have mentioned dense breast tissue. I have that and over the years it was very difficult to differentiate between what was a lump or just the denseness. I had a needle core about 10 years ago on the right breast that wasn't anything like this. Everything was normal and never had to go back to that breast doctor. This time on the left side, it's like, bing bang BOOM! It's all so scary...

The sleep issues have hit me too. Slept great last night, but I go back to work tomm and my appt is in the late afternoon. So, we'll see what happens tonite, LOL!

I'm 51 years old and I think I'm starting my change. Periods are very few and far between. No hot flashes, thank God! So, as I sit here thinking, hmm this is what it's like for menopause?

There isn't breast cancer in the female members of my family. But there is ovarian cancer, cervical, lymphoma and throat cancer.

I've had my share of issues. Mainly stomach. I have had 2 Nissen fundoplications, gallbladder out, kidney obstruction surgery, many incisional hernias (I think I'm up to 6 now) repaired. Now, I'm dealing with abdominal adhesions. This stuff just adds to my tummy woes....

I keep thinking the good Lord won't hand me something I can't handle! I'm tough too...I'm thinking it's the Taurus in me! LOL

Take care...
 
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rachael67 replied to jean1960's response:
Jean, remember to breathe! Slowly and deeply in and slowly out. Keep doing this every time the stresses start to climb. It does help.

Sounds like you are too familiar with the OR! Sorry you've had to deal with so much!

Hope this biopsy proves negative...We'll all be beside you tomorrow. Please feel us there.

Blessings.
Rachael

PS...Mother Teresa once said: "I know the Lord won't give me more than I can handle...I just wish He didn't trust me so much!!!"
Always listen for what is silent and see what is invisible...That's where miracles hide, and it can make all the difference!
 
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jean1960 replied to rachael67's response:
Saw the breast doctor yesterday and he said still Atypical Lobular Dysplasia. It's not cancer! He wants me to see a specialist to see if I should have genetic testing...mri's...meds to keep cancer away. He said this doctor is phenomenal! Best at what she does. He said it would be months before I could get in. Well my appt is today...she had a cancellation. He also said mammos every 6 months from now on.

So it looks like I dodged the bullet this time around...phew!

Thanks for all your blessings and well wishes...

Jean
 
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lotsastress replied to jean1960's response:
Excellent news Jean!!!! You must feel so much relief. Now treat yourself to something nice My Doctor said no matter what the results are I also may be a candidate for meds like Tamoxifen for 5 yrs given my high risk factors. I can't wait to get this done, how was the procedure itself Jean, and how did you feel the next day??
 
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jean1960 replied to lotsastress's response:
I didn't have too much discomfort the next day. I took the rest of the week off from work and we had a long weekend anyways.
Everybody at this hospital were great! The only true problem I had was an allergy issue that I forgot to mention. I can't use DermaBond...it's that super glue type of substance to close a wound. Doc used something like it and I'm having a heck of a time with the itching, blisters and all-around discomfort. Benadryl at night to help, but I'll be glad when this heals!

Treat myself to something nice, mmhmm! Going out to dinner tomm night with friends.

Keep in touch and let me know how you're doing after.

{{{hugs}}}
~ Everything happens for a reason ~
 
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rachael67 replied to jean1960's response:
Glad to hear things went well, but very sorry about the allergy! Can't they give you some sort of topical med like cortizone which would help relieve the itch, etc? How long do they figure it will take before the allergy subsides?

Please do what you can to entertain/distract yourself and keep that pesky itch on a back burner! You are in my thoughts.

Blessings.
Rachael
Always listen for what is silent and see what is invisible...That's where miracles hide, and it can make all the difference!
 
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jean1960 replied to rachael67's response:
Now another scary situation. Had a repeat pelvic ultrasound this past Monday due to an ovarian cyst gyno is watching. Got a call this past Thursday from his office and was told that they think the cyst they've been watching looks like it may have multiplied. They can't tell for sure because it's hard to see. The doctor ordered the CA125 blood test and AGAIN I'm freaking out! I'm, like, WTH?! Everything seems out of my control! Ovarian cancer runs in my family. That's why breast doc was sending me to be genetically tested and following me closer because of my risk factors. I had the blood test yesterday and am on pins and needles until I find out. I have to have a repeat sono in 6 weeks.

Because of family history I have always been very nervous about getting OC. I don't know what I'm gonna do if this test shows something.....

Anybody else out there in my shoes? Breast AND Ovarian issues??? Everything is happening all at once here and I just want things to go back to some kind of normal!

And Rachael, I wondered if using cortisone would help. I may try that until this dang allergy subsides. Thanks for the suggestion.

Thanks you everyone for your thoughts, concerns and suggestions....

Jean
~ Everything happens for a reason ~
 
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cindy12345678 replied to jean1960's response:
Jean,
Sounds like you have been through alot.I had 2 primary
cancers but no braca gene. Or not a known varient. I
hope you get good news. I am glad they are watching you
closely. That is your best defense. At least they are paying
attention! So many times they don't. You hang in there!
Cindy


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