Hyperplasia , IDC and recurrance

bdavis

I am driving myself crazy. Twelve years ago I had a lumectomy that came back as ADH. This past year, I was diagnosed with IDC and had another lumpectomy, am undergoing chemo and have rads and tamox planned for the future. BUT my pathology from this lumpectomy shows adenosis, florid hyperplasia and microcalcifications (in benign ducts)... plus a biopsy from my MRI showed pappillomas (fibroids).

Am I just waiting for re-diagnosis?? I am not sure I can live like this, wondering and waiting  for another cancer to crop up... Has anyone been in my situation and had a mastectomy?

Path report from 12 years ago specifically says " atypical ductal epithelial with focal apocrine features. Ductal hyperplasia is favored"... and the path report from the needle biopsy a month prior said "breast tissue with cystic changesm adenosis, florid duct hyperplasia, apocrine metaplasia, mild periductal chronic inflammation, focal fibrosis an focal lactational changes within a lobule."

bdavis

Bump

Sherryc

bdavis-Yes, I had a lumpectomy 13 years ago for Atyical Hyperplasia.  This last sept was diag with IDC in the same area.  Had another lump and rads not chemo and really wished I had had a mastectomy.  Just my feeling on the matter.  My surgeon rushed me into surgery and did not give me an option and I really wish that she had.  Rads was very hard on me so I think a mx would have been easier.  Of course not everyone has a hard time with rads.

bdavis

Sherry... you are lucky that it hadn't spread to your nodes... that is how I ended up in chemo... It is my feeling that perhaps not as much information is know about ADH as doctors might lead us to think...

Are you considering a prophylactic mastectomy now, or are you on tamoxifen?? How is the rest of your current breast tissue - do you have other benign issues? And what percentage ER/PR+ was your tumor?

Sherryc

I am considering a prophylactic mast on my right.  I just don't want to deal with this again in the future.  I am 48 so that is young for BC.  I am meeting with a plastic surgeon in March.  ON my left side I am much smaller so will be looking at getting that fixed as well.  I am afraid they may have to remove more tissue out of my left breast.  The first lumpectomy that I had I ended up with a bad hematoma that left alot of scar tissue.  The scar tissue and my dense breast was hiding the tumor.  It was found with a MRI after they could not get a good biopsy from more calcifications that they found.  The calcifications ended up being OK but found this other tumor which as least it was early stage.  My BS said that because of my scar tissue it would have had to get really big before I would have felt it and with my scar tissue etc who knows before it would have showed on a mammo.  So sorry you are having to go for chemo.  I had an onctotype dx done and it came out intermediate.  My MO said I did not need chemo but I am not real crazy about him and am switching.  Have an appt with my new one on Feb 15, when he tells me I don't need it I will feel much better.  My ER is 60% and my PR is 80%.  On my onco score the ER actually came back barely over the positive mark.Even though I am ER positive with it being so low it bothers me so I am going to talk to my new MO about that as well.  I just want to make sure I am not missing anything.

I have done alot of reading on ADH and dense breast tissue and I think they are starting to learn that it puts you at a much higher risk of BC.  I should would have like to have known that.  In fact no one ever mentioned my dense breast tissue to me.  Once I had to get all my old films for this new BS and I had them and started reading the radiology reports every single report speaks of my dense breast tissue.  Do you have dense breast tissue as well.

bdavis

Yes, I am very dense... and have always known that I am... My ER/PR is 98% so very positive... I trust both my bs and Oncologist, but when protocol may be to watch benign stuff, it is hard to live with that with all the follow up and worry, especially since I have already seen it turn to cancer... I DID watch it for 12 years, had all my recommended tests, pursued ultrasounds, asked for cyst aspirations (just to make sure).. and still got cancer.. So, if I don't have a PBMX, I will spend the reat of my life worrying about what's next, spending lots of time with my doctor, getting biopsied to death for all my abnormalities, and wouldn't skip it for anything, and I am not sure I want to live like that...

Plus I'd be super upset if it did come back, or a new cancer cropped up and that time it could be much worse thatn this time... plus the whole MX after radiation thing... and part of me thinks, I will either sped 6 weeks in radiation or 6 weeks in healing from a MX... granted I know they would not be the same...

UGH...

Sherryc

keep me posted and I'll let you know what my new MO says and the PS.

bdavis

will do

soccermomofthree

My mother has had breast cancer two times eleven years apart.  She had taken tamoxifen and got endometrial cancer.  I had very dense breast and other breast problems that they monitored me every six months and wanted physical exams twice a year in addition to MRIs and mammos. Tamoxifen was also suggested.  There was others in my family that had breast cancer also grandma, aunt, etc.  I had a prophylactic MX Aug 2010 because I didn't want to live my life waiting and looking for it to come.  I am so very happy and relieved that I am out from under that cloud. 

bdavis

Soccer mom.. I totally agree...

Sherryc

bdavis I had my appt with my new MO and he was full of information.  He did agree that I did not need chemo.  He went over all my path reports and history etc.  So I feel good about that.  I really like him and am so glad I made the change.  The one thing that he confirmed for me is that with my history of ADH and that fact that I probably still have ADH cells in my breast that that still has me at risk for a new cancer to crop up in my breast.  Having had surgery for ADH 13 years ago and now cancer I really wish my BS would have given me the option of a mx.  So now I have already been through radiation to find out radiation does not kill ADH cells it only kills cancer cells so my risk are still there.  Not happy about that news.  So now my skin is compromised even though I know that I can still have a mx and reconstruction which I will probably do and go ahead with a BMX while I am at it.  I have an appt with the PS in march and since I have no immediate danger with my cancer being gone I can do the BMX when I want to.  I am going to get more info from the PS and then talk to my MO some more about it.  I think I may wait until next year because I just need a brake for now.  What my MO told me is with my risk that I will have to have a yearly mammo and MRI alternating every six months for life, which is not what he recommends for most of his BC patients.  That is also why I want to consider the MX.  I just dont' want all that kind of follow up forever.  I am not that concerned with recurring cancer at this point I am more concerned with new cancer.

bdavis

You and I are totally on the same page, except for the fact that you already had radiation and I am in chemo.

I am researching going to New Orleans for the whole process and am investigating a DIEP flap... Have you discussed which type of recon you would get? For recon, even if its more invasive, I want to do it right the first time, and I personally think natural skin/fat would be better than implants cause they would need adjustments over the years.

bdavis

Oh... and my genetic test came back negative.

Sherryc

Glad your genetic test was neg. I am not sure what I am going to have I have researched it and will wait until I meet with the PS and see what he suggest. I was to go in march and they called to change the schedule to April that did not wk for me so now it is begining of may.

bdavis

Hey Sherry... how are things going now?? I feel like we are in the same boat.

Sherryc

Going fine, I rescheduled my PS appt to June hopeing to have some of this swelling down by.   then.  I have a follow up with my RO next week and I think that will be the last time I see him.  I have another appt with my BS and we will discuss the MX more at that visit.  At least now I am at a point where I don't have to be in a rush and can schedule it when it works out best for me.  My Dad has mets lung cancer and is not doing well so I will be trying to schedule around him as well as he and my Mom need me to help them.  How is your chemo going?  Has it been hard on you?  Hope everything is working out well for you.

bdavis

Hi Sherry... I thought I had relied to this... sorry... Chemo is almost over, thank goodness... One more on May 10th... It will feel good to be making progress and getting closer to being done. Chemo hasn't been too hard, but its in my life everyday and so its emotionally draining, and somewhat physically draining as well.

Sorry to hear about your dad... aging parents are really hard... My dad turns 80 next week and has had a lot of health issues as well.. so I try to take care of his needs and also take care of my mom's needs, while she worries about him... 

And then there are the kids... We can never stop worrying about them,,,

I meet with RO on MAy 5th and then head to New Orleans for MX/DIEP consult on the 16th,,, so May will be a busy month and a big month of decision... I keep looking for the EASY button and can't find it.