ALH/LCIS...so mad I didn't do anything sooner!!!!!

dmarie71

ALH/LCIS...so mad I didn't do anything sooner!!!!!

dmarie71

I was diagnosed almost 3 years ago with ALH/LCIS in my right breast.  I tried taking tamoxifen but had terrible side effects.  I do not have any family history but didn't want to live waiting for a breast cancer diagnosis, so I scheduled a PBMX.  However, several weeks before the surgery date I developed horrible symptoms of an autoimmune disease and my breast surgeon felt it would be better to hold off on surgery.  I've been doing alternating mammos and MRIs every 6 months.  My breast surgeon just called to tell me that my latest MRI showed 2 small masses in my right breast.  She thinks they are too small to biopsy with ultrasound, so I may have to have an MRI guided ultrasound.  I am a complete mess.  Wish I would have just sucked it up and gone through with the surgery 3 years ago and I never would have to face breast cancer.  Now I could be facing lymph nodes being removed and possibly having chemo and radiation...which isn't recommended for someone with an autoimmune condition.  Just so angry...and scared!  Thanks for listening to me vent!

Anonymous

marie---don't get ahead of yourself, at this point you don't know what it is or what will or won't be needed. Hopefully, you won't have anything to face except a benign report. don't beat yourself up about it; you did the best you could at the time, and that is all we can expect from ourselves. Praying you get benign results soon.

Anne

dlb823

dmarie, we all make the best decisions we can with the information we have at that time.  Three years ago, you had no way of knowing this would happen, and you could have had other serious complications had you stuck with the Tamox, in which case you would be beating yourself up for that choice.   Or you might have taken the Tamox and still had those new lumps appear.   Unfortunately, with breast cancer, there are just so many unknown and not-yet- understood variables.  Try not to beat yourself up over a past choice that I'm sure you didn't make lightly.   (((Hugs))), and let's hope the biopsy proves B9.      Deanna

netty46

dmarie sorry your going thru this . Don't get upset at yourself . A double mastectomy does not cure breast cancer . Many have had it only to get a chest wall recurrence or worse . If you had an auto immune problem your healing would have been difficult and this is probably why your surgeons were against it.  An infection could have been very hard to treat . 

Hopefully this is just benign as a large percent are . 

Take care !

leaf

I'm sorry you are going through this too. I, with classic LCIS, had 2 biopsies about 1 year after my breast excision for LCIS.  Both biopsies (in totally different areas of my breast) produced nothing worse than what I had before (LCIS, ALH, DH (ductal hyperplasia, not ADH.)  There _is_ hope you do not have anything worse than your present LCIS. 

(P.S. I also was diagnosed with an autoimmune condition about 3 years after my LCIS diagnosis.)

dmarie71

Thanks so much for your responses.  I had my biopsies on Friday and should be receiving results tomorrow...I'm a nervous wreck.  It is so hard to not let my mind go to bad places.  I knew I'd hear encouragement from some of you wonderful gals...so thank you, thank you, thank you!!!!

dmarie71

All 3 biopsied areas were BENIGN!!!!  I never expected to hear that.  I feel like I've been given another chance.  I will certainly be meeting with my oncologist and be starting tamoxifen or scheduling the mastectomy in the near future!!!  I am not going through this mental anguish again!

Anonymous

dmarie----so glad to hear the good news--benign, what a wonderful word !!!! It sounds like you are still feeling really anxious about the situation though.  These decisions are so difficult and so personal too.  Best wishes to you whatever decision you make.

Anne

AndreaJ50

That's great news! What a relief for you. They found LCIS in my right breast (was removed during excisional biopsy) after I had DCIS and IDC removed from my left breast. Since I am on Tamoxifen anyway for the left side it should help with recurrence of LCIS too.

I hope you can tolerate Tamoxifen better this time around. 

leaf

I'm so happy to hear your biopsy report, dmarie!  I hope your consults can help you make the best decision for your particular circumstances.

Moderators

dmarie71, we're delighted to hear that your results were benign, that's great news and thanks for sharing.

The mods

K51

Dear Deanna,

Was reading your bio- just curious, you started out with stage 2 and now have stage 4... So it can come back so aggressively... It just blows my mind how crazy it can be. All the best!!