ALH

november

farmerlucydaisy-I am sorry that they found more than expected but hang in there. Hugs to you

farmerlucy

Thanks - I want a rewind of this day.

What the hell else could I have done, 2 MRIs, 4 mammos at least, 2 excisions, several ultrasounds,  two thermorgrams all in the past two years. In limbo again until we meet with oncologist next week. At least the MX healing is going extremely well.

ndroby

Farmerlucydaisy,

I am praying for you and hoping for the best outcome.

I am scheduled for BMX and SNB with reconstruction on 4/10. Like you, I lost my mother in childhood. I was 2 years old when she died at the age of 33 from breast cancer. My older sister was diagnosed with breast cancer in 2009 at the age of 56. My maternal GM also died from BCi n her 70's.

I have had numerous biopsies (my first one at age 14) and the most recent one showed ADH and ALH in the right breast and some ADH in the left breast. I am having implants, because it seems to be the least invasive procedure. I will be following your posts and keeping positive thoughts in the universe for you!

farmerlucy

ndroby - From my point of view you are making THE best decision of your life. I know sometimes in the wee hours of the night it seems absurb that you are taking such a dramatic step. But you just CANNOT risk it. I am 5 days out from the PBMX (didn't get the nodes then, but will prob have to now). Without a doubt the waiting for the MX is the hardest part. My BS and PS were breathtakingly awesome. I have TEs now. They filled about 1/2 way to 200 cc. The first night home was rough but manageable. Since then it has been all up hill. Take your pain meds as prescribed. The docs know what they are doing. I had a pain ball for 4 days, that ended yesterday. Today I am on Tylenol only, it is stiff and sore but ok. My daughter helped with drains and dressing changes. I would highly recommend you line someone up for that. If I didn't have this other #$%^ on my mind I would be a happy camper. Absolute best of luck to you. PM me anytime.

vmudrow

farmerlucydaisy - Soooo sorry to hear this news.  That was my fear going into PBMX.  Hoping your treatment goes well.  Praying for you!!!

ndroby - I too think you are making the right decision - as in farmerlucy, who knows what could be lurking in there - hopefully nothing.  I was just soooo tired of the worry and tests etc.  I have been very happy with the outcome of imy PBMX, with implants. 

farmerlucy

Valerie - PLEASE keep getting the word out about this. You are doing a huge service to womankind. Being in limbo right now may be the darkest time for me, but hopefully the light will come. I vow to do everything in my power to make sure my precious 21 year old does not have to face this, no matter how radical we have to be.

yolo

Hi, Has anyone with LCIS/ALH managed their care using breast thermography, along with mammo/mris/ ultrasounds? I just received news that I have to have a 3rd biopsy (this is year 5 dealing with this) because of more "suspicious" cells found on same breast. And now starting to see calcifcations appearing in other breast. First diagnosis was LCIS in 2008. Last year it was ALH. I have no family history of BC, that I know of. I'm not on Tamox, yet.

Before I jump under the knife again, I'm exploring other ways to manage my care and very curious how thermography plays out in identifying if there really is a true threat. I know all about thermography, not looking for an explanation here per se, my question is if anyone out there is using this diagnostic tool in managing their atypical hyperplasia. If so I'd love to hear from you. Thanks!

farmerlucy

yolo - Not to scare you but I went to a high risk clinic for 20 years. Every year or every six months I had a mammo, ultrasound, and thermogram. In 2009 and 2011 I had MRIs at a different clinic.

yolo

Farmerlucy, I'm sorry to hear of your recent diagnosis of IDC? How many times in the last 20 years had you had excisional biopsies with all your high risk screening? Did youe feel thermograpy helped? I've only been dealing with this for 5 years, and each time I get news I feel more confused. Did you ever do Tamox?

vmudrow

yolo - I am kind of suprised that you haven't been put on Tamoxifen.  As soon as I got a diagnosis of ALH I was sent to an oncologist who wanted me on Tamoxifen - that's when I decided I had had enought and had PBMX.  I never had a termogram or MRI, but my doctor said that they do tend to show more - but also show more stuff that needs to be biopsied, but is benign. 

farmerlucy

I sailed along pretty well with mammo's, thermograms, and ultrasounds every 6 mo to 1 year from early 90's until 2009, age 49. Then I had nipple dicharge, they did an excision, took the wrong duct, so the discharge continued until my third opinion in Oct 2011. (Had MRI in 2009, and  Oct 2011). Then I had another excision - this was 4 cm x 6 cm x 2 cm, so pretty big. That showed ALH, ADH, and multiple papillomas. I knew all along if something came up I would push for the pbmx. They did genetic testing and counseling (BRCA neg, 50% risk). My docs went along with PBMX idea, but thought it was radical but also suggested screening and tamox.  The tumor they found was in my right breast, no where near where I'd had trouble, and was along the chest wall apparently hiding in dense tissue. In my opinion the thermogram was not useful. I had one in Sept 2011. Obviously all screening tools failed in my case. I never ever wanted to be the poster child for failed high risk screening, but here I am. Sorry.

farmerlucy

Unfortunately, if you check other recent posts of PBMXers I am not alone.

beacon800

Farmerlucy, I am just catching up to your news right now.  CRAP!  I am so sorry.  Hard to imagine that all the screening missed that lurking invasive component. This is very unsettling and I know you are not feeling great but it is a small tumor and since you did mx it's the heck OUT of there.  Hopefully you'll not have to go through a lot more, but I know they will be evaluating everything from here. 

Shows you one thing:  you were totally right to go for the BMX, your gut knew those boobs were up to no good. 

Please keep us posted on next steps.  My BS told me that 3% of the time the MRI will fail to see a tumor over 5mm.  Sorry it happened!

(((hugs)))

farmerlucy

Thanks Beacon - You, too, keep up your important postings both here and with the no recon option.

JanetM

After my lumpectomy my surgeon suggested that i might consider tamoxifen.  I decided not to go in that direction and I have continued with every 6 month mammos and ultrasounds.  My thought is that since I already know that there is LCIS, ALH and ADH lurking in one breast that at the point that another biopsy becomes necessary that I will most likely opt for a PBMX.  The constant feeling of waiting for the other shoe to drop is beginning to make me crazy.

Galsal

Farmerdaisylucy - the final path report showed ADH and ALH along with the ILC on the left side and the unknown on the right side of ADH and PASH.  Don't feel lonely. 

ndroby

Farmerlucydaisy,

You have been on my mind all day today. I am glad to hear that your pain is manageable with tylenol. Your daughter sounds like a gem. What a great support she must be for you. Your surgical team sounds very caring. Wow---200 cc in your TEs already. You must have quite a nice start to your foobs! Focus on the positive energy and healing thoughts that you have around you including those of us on this site.

 Please get some rest and know that I am keeping you in my heart as I talk to God tonight.

ndroby

Valerie,

Thank you for telling me that I am making a good decision. I have my doubts as I read some of the horror stories from persons who have had BMX with implants. I have no more energy left to play this psychological game with cancer. It is comforting to me to hear that your experience has been a good one. April 10th is not that far away. I am hoping for a good experience as well. Thanks again!

BritValarie

Farmerlucydaisy,

So sorry to hear your news.  Thank goodness you decided to go with your gut and get the double mastectomy.

I know you can handle whatever you need to get rid of this beast.  You already made a very difficult decision... life saving surgery! 

Stay strong... we are all here thinking about you, praying for you!

Valarie 

yolo

vmudrow, tamox was suggested immediately after the LCIS/ALH DX in '08, but I opted to wait and see. Bit of a natural girl and not a fan of drugs. Last year, second finding, I got scolded a bit by my surgeon and others for not do Tamox. I did then did the  CYP2D6 test and found I was intermediate processor of the drug and I had more doubts about going on it, so again waited... Now here I am, going today for my third needle biopsy. A bit scared and defintely more confused than ever, after reading farmerlucy and others stories how it was missed, and can be lurking in there without showing up on any of all the diagnostic tools we subject ourselves to... Particulary with extremely dense breasts littered with cysts. I always though the pbmx was drastic for a DX of LCIS/ALH but I am quickly seeing that it's might just be the way to go. Thanks to everyoane for your stories and for being here. It's easy to feel isolated during the process and so grateful I have this forum to turn to for support!

farmerlucy

Ok ladies - after three weeks of absolute hell I have my final dx. IDC 1.1 cm, no nodes, onco score of 3. Stage 1a. NO DOUBT the preventive mastectomy was a great decision. If you have the family history, busy and dense breasts my suggestion is that you do not mess around. Remember all they thought I had was ALH and ADH.

I asked the onco at my first visit if he had looked at my "clear" November 2011 MRI, and he said he had and that he did not see anything. I asked how dense my breasts were and he said "extremely".

 Also my BS was able to do the SNB after the fact which was also a relief.

The double mx is no picnic, but has been nothing compared to the nasty surprise diagnosis. Honestly I already think I look pretty good with 200 cc and scars!  For me the mx has been completely manageable and I am so grateful for a team of excellent doctors who all work together fo my care.

My treatment will now be 5 years of tamoxifen or the like which I am happy to take.

I will put my email in my bio if anyone wants to contact me.

vmudrow

Jill - so sorry to hear about your diagnosis.  The mx was a good decision - you never know what might be hiding in those dense breasts!!  And I think you will be happy with your reconstruction.  The mx really isn't a horrible surgery is it?  So glad you are on the mends!!

Hugs, Valerie

Diane5

I just found this website and thread today. Today was biopsy number 9 & 10. I am wondering when to say enough.

My birth mother died of breast cancer 30 years ago at the age of 38. I had a benign lumpectomy in '97, and bilateral ductal popalomas removed in 2000 & 2001. I had just gotten to the point where I wasn't embarased about the scars and dimples from that when I went for a mammogram on Dec 5th 2011. I hadn't had one in 3 years and knew better because of my high risk. I knew it wasn't good when my PA called me 20 minutes after I left from having my mamm done.

The BS told me that my mamm looked like the milkeyway. She scheduled me for 5 Strerotactic Core Biopsies on Dec 15th with a follow up MRI two days latter. The result was ALH, but the MRI showed another spot. After waiting for the Post Biopsy trauma to dissipate she did another US a month ago. Seems that she did see the spot from the MRI, but decided to wait a month to do anything. Today I went in for another US and my BS ended up doing two more biopsies (US guided) today in her office. We are hopeful that it will be nothing, but I am still scared that they will find more.

I find out next Monday (the day before my 39th birthday) what the results are from today. My BS is thinking that I may need an open surgical biopsy becuase of all the calcifications on my right side. That will be number 11. When do I say no more biopsies - remove the breasts?

The stress of wondering is starting to get to me.

Diane

vmudrow

Diane - so sorry to hear you are going through all this   I was done when my result (after numerous biopsies, family history, mammo scares etc) came back ALH.  With my history my surgeon agreed that I was a canidate for nipple sparing masectomies.  I was 49 and wished I had done it sooner - I worried and had tests for 20 years.  There are two other threads you can check out - PBMX for ALH or ADH (I started that thread, there are not many ladies who had masectomies for ALH) and Nipple Sparing Masectomies.  I'll bump them up for you - so look under active topics for them.  I sent you a PM also.

Hugs, Valerie

Diane5

Thanks Valerie!!!