Any comments welcome

Dear TriChick:

The doctors do not seem to be very concerned about most of the benign findings although the names of the findings sound very scary.  Googling all of the benign diagnoses causes one stress and anxiety.  It is best to listen to the doctors rather than googling.  It seems that doctors are concerned only when there is a finding of atypia along with a benign finding.  I would discuss your significant family history with your doctor.  You may want to get a second opinion and genetic testing as well.

Your dx of ADH is concerning and it sounds like the AFH is concerning too because I think that the A stands for Atypia.  I know that ADH is a red flag but I do not know what AFH is.  Sorry.

I have had numerous benign findings over the years.  (I have had 6 excisional biopsies/lumpectomies, 6 core needle biopsies, and 1 cyst aspiration over the years.) Doctors call my breasts, "busy breasts."  In addition, I completed my bc tx in Octobe 2014 and my follow up MRI in May 2015 showed 2 suspicious areas to the breast that was radiated.  One area was biopsied and 7 benign findings resulted.  My MO is completely unconcerned.  I sent my MRI report for a second opinion because of the 2nd suspicious area which could not be biopsied in May 2015.  I am on a 6 month wait and watch protocol.  The 2nd opinion RO also was not concerned with the 7 benign findings.

That being said, when I google the findings, 2 of the 7 findings are terrifying according to google.  I have prominent sclerosing adenosis, and prolific epithelial hyperplasia.  According to google, those 2 findings increase my chance of bc.  The other 5 benign findings are not concerning.  However, my MO and 2nd opinion RO are not concerned in the least.  It is best to trust your doctors. 

I wouldn't worry about the benign findings.  Your family history is, however, a source of great concern, as is the ADH, AFH and the DCIS.  Ask many questions of your doctors and have the tx that you feel is right for you.  Get a copy of your pathology report.  Have someone go to the doctor appts with you so that they can listen to your dx and tx plan.  That will help tremendously.

I am sorry that you find yourself here.  Good luck with your tx.  The diagnosis, the waiting, not knowing, and wondering about your tx is very difficult and anxiety provoking.  I wish you the best.

My sisters were BRCA(-).

trickchick---(sorry, I just read an older post of yours and it mentioned ALH.) While ADH is more localized, ALH is thought to confer increased risk to both breasts, so while lumpectomy and radiation would address the DCIS (which is the most serious of the 3--ADH, ALH, DCIS) in the affected breast, you would need to take tamoxifen to decrease the risk in both breasts.

Anne

Hello - I just wanted to chime in about something a cancer buddy said to me.

I started with lots of cancer in one breast and lots of lymph nodes that went undetected for many years and became aggressive. So getting the other breast off was suggested by my doctor and was something I knew I wanted because I would worry about getting cancer in it all the time.

My dear friend talked to me shortly before she passed away about her treatment. She had a lumpectomy and radiation that was it. She never asked many of the questions she had or had enough answers to comfort her. Her cancer came back in her organs. She said she always wondered if she had a different treatment like mine and they gave her double mastectomy would she still have been dying. She said she would probably wonder till her end.

I am not saying go ahead and do it but definitely make sure you ask as many questions as you can to your doctor. Write the questions down at home if there are 50 questions and they don't have time to answer all your questions in detail make another appointment till every last question is answered in detail.

Then you will know better about your decision to make. Everyone's body reacts different to their cancer I started with a lot but am still kicken around. Unfortunately they cant give anyone a definite cancer will never return answer. I had much more cancer than my friend but am still here. like I said you never know.

Whatever your choice make sure you are comfortable living with it in your mind and heart.

Hugs to you

- Beth

You might talk to your surgeon about a second opinion on your pathology. In my org biopsy one pathologist called it ADH and ALH and another called it DCIS and LCIS. It was sent to Vanderbilt for a second opinion tie breakerand they called it ADH and ALH. Apparently the cells for either look very similar and are sometimes hard to call.

<quote>

I think the 64 in both our names gives away our similar age . And yes, I'm active as well (thus the tri part). Although I don't do triathlons any more because I hate to run. Ha!

I'm sorry ti hear about your family history of BC. That's a lot to go through for any family. I hate this disease. I wish you the very best for your upcoming surgery. I will follow along with you and cheer you on from the side lines.

Did you have any Prob with insurance approval? Are you going to have reconstruction? Do you mind me asking?</quote>

I did not have any problems with insurance approving the mastectomy. I'm having a nipple-sparing DIEP flap reconstruction. My sister had DCIS in both breasts and got a double mx with implants.

There is a delayed reconstruction option. Doctors advise against it as it involves another round of general anesthesia. Plus your breast skin/nipple could not be used were you to wait--but you won't feel the nipple anyway for years if you do feel it, and it won't be the same ever. That's a sacrifice. I am very sad.

\ I'm meeting with a trust guy on Monday to make sure all is in order to dispose of my property in case I die. I'll be under for 10 hours. It is a risk to remove "healthy" tissue, though they won't know until they've dissected it.

The prospect of dying to remove/reconstuct what could be healthy seems radical. I sometimes feel I'm jumping the gun. But if not now, when? When my boobs are dented and disfigured and their state considered merely cosmetic 15 years from now?] Or go on Tamoxifen now as advised and lose what remains of my sex drive and the good years I could spend pursuing this? When I get bc and have to deal with radiation and chemo as well as surgery, maybe when I don't have a good job, parents in good health, etc.? I don't like any of my options but for me, this was the least bleak.

I concluded it has to be now and this way.

All decisions are personal and each one of us has to do what is best for our own needs and personal situations. 

However, I just want to throw out there that I am taking Arimidex (Generic - Anastrazole) which is an Aromatase Inhibitor.  I have no side effects.  I have not lost my sex drive and I have absolutely no other sexual symptoms from being medically induced into menopause or from the Anastrazole.  I have been taking Anastrazole for 1 year (I am 1 week short of 1 year.)

Don't plan on having side effects because you may not have any.  I am not taking Tamoxifen because I was not able to take it.  Therefore, I do not know how Tamoxifen would have affected me. Regardless, Anastrazole is a  better treatment for Lobular Carcinoma then Tamoxifen. 

Good luck with your upcoming surgery and with your recovery.  I wish you the best.  Your decision should put your mind at ease and stop your anxiety.