Making the decision..appreciate your thoughts

Regina:  So sorry to see you have had to join our club here but you have found a wonderful site.  These ladies know first hand what we're all going through, although everyone has to follow their own heart as far as treatment is concerned.  Please take your time and make sure you are 100 percent positive that the treatment you are doing is what is for YOU.  The doctors will recommend what they think is appropriate but as you and I know, we, individually, have to live our lives afterwards.  I was diagnosed in Jan. 09 with LCIS after a biopsy for calcifications (which I had to push for--the radiologist was wanting to wait another 6 months and WATCH it--no thanks).  We had to do another larger-scale biopsy to reconfirm and make sure nothing else was there, so we had an MRI before surgery where a fibroadnoma was found nearby.  I asked by breast surgeon to remove that as well when she went in.  She did and within that piece of tissue they were astonished to find a 3 mm ILC.  I had already decided to have bilateral masectomies when diagnosed with the LCIS.  I couldn't deal with the checking (worrying) as I would now be high risk.  I also decided that I could avoid chemo and rads as well as the tamoxifin if I went ahead before invasive was found--laughable now.  I am not taking chemo or rad's although they are pushing the tamoxifin.  I had my bilateral masectomies May 7 and placed tissue expanders.  I am currently fighting infection and waiting to see if I get to keep the expanders.  The chemo would only give me a 1 percent less recurrence rate so it's not worth the side effects for that but I am interested in removing the ovaries (as my cancer is hormone positive) and maybe taking the drugs which help with bone loss and also decrease the odds of recurrence (can't remember the name of it.  Long story short--DO WHAT IS RIGHT FOR YOU.  DO THE RESEARCH, DO NOT RUSH.  You have a tiny invasive cancer so you have time to make the decision that's right for you.  You are right that the pictures are scary (I've seen them too) and unfortunately it is not pretty in person either, but thankfully you do save the skin and with reconstruction things can look okay.  I sit here today with my Fight Like a Girl shirt on (I am probably a AA instead of the small C cup I was before).  BUT I BEAT CANCER--so I'm celebrating!  My best to you.  You will be in my prayers.

Dear Regina, first of all I am so sorry that you have had the bad news and I hope that, like me, you will find a great deal of empathy and help on this site.

 I live in England.  I am having surgery next week (hey - 24 June too!!) plus breast reduction on both sides.

 In England, lumpectomy followed by rads or chemo or hormonal therapy (or all of those) is perfectly commonplace compared with the US. Here, mastectomy is more and more unusual. The other day I posted on another thread just to ask why that might be.  I expect there are a lot of reasons but at any rate, here is why I am happy with my decision.

 I am big breasted, so there is quite a lof of available breast in which to get clear margins (I hope).

I am at the top cancer hospital in the UK attached also to the Cancer Reserach organisation (also biggest in UK).  The surgeon is rude but that is a separate thing!

Survival rates in the UK have improved a lot over the last 10 years.  The drugs prescribed here are very similar to what you will have on offer.   All of this is scary.

I would guess that like me, rads will be a definite, whilst chemo may or may not be necessary.  Probably hormone (tamoxifen or something) too.

This is a personal and difficult set of choices, so I wouldn't want to influence you in any way other

than giving an open picture of a commonplace treatment programme here in the UK.  I think yours is a difficult decision in as much as you are an entire 3 weeks behind me since diagnosis (!) and still absolutely reeling with shock.  Feverish looking on this site and others has educated me speedily.  For me my decision feels pretty comfortable because the hospital where I am has one of the strongest cancer teams in the UK.  They only do cancer surgery and treatment, absolutely nothing else.  But even if it wasn't this particular team, here lumpectomy is our most  usual route and a well-tried and documented method.  That doesn't say anything negative about other routes.

You have to choose what you feel is the most liveable with for you.  For myself, I am willing to go with this particular for of surgery as I actually like the idea that if - in the statistically fairly low chance after treatment, the beast returns then I have breasts which I can still do all my regular body checks on etc.   This is probably slightly irrational in some ways but I find it comforting.  Also I would very much prefer to have breasts of my own still.  I know the latter possibly seems a)obvious that everyone does but b) possibly silly.

 I gather it is a bit easier to get second opinions in the US than here in England.  Would that be of comfort to you?  I too think it important not to rush (within reason!) whilst knowing that time does go into a funny fast-slow thing once we are diagnosed.

Rads - I have spoken to three English people in the lasy week that pretty much breezed through rads.  One had no problem with chemo (I was bloody surprised to hear that one!)  most are ok with Tamoxifen (two seem to think they thrive on it.).  The trouble is, we simply don't know what it will be like because we are individuals.

If I had gone for mastectomy with future diep or whatever, I have to say I didn't really like the sound of all that and for me, just see that as scarring in another nice part of my body.

 I can only write about how I feel of course.  There isn't a right or wrong from anyone's views (providing they are polite) so I hope this helps a bit.

I wish you all good luck - ifthere is anything else I could mention do let me know.

love and kisses -

Regina, I think you always have to make the decision you can live with.

Believe me this is only my opinion here.  I don't want to scare you or influence you.  I am just sharing my opinion.  I think that there is a lot hiding in fibrocystic disease, dense breasts, that the medical world doesn't know much about yet in terms of it's ability to become invasive.   I also think our current imaging modalities are not good at finding what may harm us.  

I had a prophylactic mast. on the right side 4 months after my bc mast.  In that "good" breast was found proliferating nodular papillary apocrine metaplasia, fibroadenomas, and sclerosing adenosis.  These are all considered not a problem.  In a prophy. mast. the pathologist is not doing lots of sections or looking hard for stuff, because supposedly nothing's there.  I was told that I was fine, no cancer or precancer found, etc.  I consider these conditions "something".  Especially since some of these conditions are uncommon in someone who is 57 and postmeno.  I think they might have been made worse by the 2 years I was on HRT prior to my diagnosis.  I don't regret having the mastectomies.

So sorry your going through all of this.  It is such a personal decision.  I chose to have a mastectomy, chemo, and no rads, saving rads for if there is a local reoccurance.  If I had it to do all over again, I would have had them both removed and a few later after finishing chemo have implants put in.  I have one perky one my my real one even though reduced will sag but my implant looks really good.  Wishing you the best on choosing what is right for you.

Regina, I am so sorry you have to go through this, but you have come to the right place. The decision you are trying to make is such a difficult one.  The best advice I too can give is to do what feels right to you.  I can tell you what factored into my decision to have a bilateral mastectomy and I hope it helps.  I had been diagnosed with ILC in one breast, but knew it was somewhat more likely than other cancers to recur in the other breast.  Also, ILC is notoriously difficult to detect.  MRI is the best at detecting it, but not foolproof.  I was worried that there could be more there that even the MRI was not detecting.  Also, the doctors always tell us that the survival rates are the same for lumpectomy and rads as they are for mastectomy, but it just seems to me that so many women who choose lumpectomies end up having more  surgery later.  I didn't want to go through any more surgery than I had to.  I too hoped that by having mastectomy I'd avoid radiation, but I ended up needing radiation anyway, causing problems with one implant that meant I had to have another surgery, and eventually made it necessary to remove the implant permanently.  That's been disappointing to me, but I still don't regret my decision to have the bilateral. It was the right decision for me.  I might not have the cosmetic result I wanted,  but at least I have the most peace of mind I can have regarding recurrence.Good luck to you. I wish you all the best and peace in your decision.

Angela

Hi Regina21,

Thanks for the prayers!!!

My oncologist went over with me my surgical pathology and specific 'factors to predict microscopic spread' and I rank very high.

I am happy to share with you on a PM--I tried to send you one and I couldn't get the TO-box to work???? 

If you can send me a PM--I will reply. 

I am new at this whole thing also--- 

Herceptin is for HER+ breast cancer--I am ER and PR negative--but HER+ --it is not hormonal therapy but a monoclonal antibody.

This website plus www.herceptin.com has info on it. 

Cal-Gal 

Dear Regina, it seems that you inspired a partiocularly nice thread/group of people!  I am glad that the 2nd opinion was helpful.  It just shows, the way information is imparted is crucial.  You would think this could get sorted out really....

May I say that I have also greatly benefitted from the thoughts the other ladies have shared here.  Of course, I may need to make further choices after surgery, and all of your thoughts and knowledge regarding which routes to go has been invaluable - food for thought indeed - thank you all.

Good luck REgina with your suregery, adn good luck to you all in your journies.

love and kisses -

Regina:  How are you doing?  I hope you are doing well.  This site has really helped me out and I also consider all of us here "sisters".   So, my sister, I pray you are recovering and have a terrific support group around you at home.

Lee:  Glad to hear you are taking your time making this decision.  Take your time until you are comfortable that what you decide is YOUR decision 100 percent.  You will have to live with it anyway.  I am 46, LCIS diagnosed in Jan. 19, ILC in Mar. 09, and masectomies on May 9, 2009 with tissue expanders.  Just had to have surgery (a week and half ago) to remove the tissue expanders as I have been fighting an infection and it won.  Did everything we could to save those uncomfortable things because I had worn them for 6 weeks.  Anyway, can't try again for 6 months.  I'm telling you this to give you a head's up that tissue expanders were no picnic for me.  I don't regret my decision for the masectomies nor immediate reconstruction but felt I was a little unprepared as how the tissue expanders would feel (uncomfortable).  I am now taking strong antibiotics but proud to be breast-less even though I would love to be almost through by now iwith the fills if all had worked as planned.  It isn't pretty (you'd think we'd have a prettier way of going about this reconstruction thing by now) but as they say my old ones almost killed me!  My best to you as make your decision.  I am also in NC--Caswell County (North of Burlington).

Hi Regina, I am sorry to hear about your joining the club. I wanted to share with you as well. THE ABSOLUTE hardest thing is making these decisions. I felt so much better after I had the surgery behind me.I chose bilateral surgery and recon. because I had dense breasts and I did not want to go through Chemo or radiation. I had my reconstruction done by Dr.Sullivan in New Orleans and I love it.I feel great, look good, and am at peace with my decision. I am not taking Tamoxifen because my cancer was tiny.I also do not have to worry about it coming back later in the other breast.Good luck with your decision. May God bless you and guide you.

Hi everyone

My diagnosis says this: Left breast mass excision: focal atypical ductal hyperplasia (ADH) of breast. The focus of ADH measures 1.5 mm and is 0.2 mm from an inked specimen edge.

Atypical lobular hyperplasia (ALH) of breast. see comment.

proliferative fibrocystic changes of usual type, apocrine metaplasia, scierosing adenosis, duct etasia, and microcalcifications are aslo noted.

Comment: The ALH is negative for e-cadherin, calponin and CK34BE12 is supporing the diagnosis.

This is my diagnosis and my doctor who is a general surgeon was concerned about the ALH but consulted with the lab and they said it was negative. He then told me to go for ultra sound check up every six months. I am reading up a lot about it and I am really worried that I am at high risk, but am not getting clear answers can anybody help explain my diagnosis. My ultra sound only showed two cysts in my left breast and when he went to do the biopsy he said he had to take out the big cyst and two more and that there were more but he would have done a lot of damage to my breast. Thins is that my right breast was not touched at all an that one showed calcification and a small cyst when the one where I had the biopsy did not show any calcification at all on the ultra sound only after the biopsy it showed microcalcifications. Am lost for answers and worried. Can someone please shed some light on my concerns maybe i just worry too much but i always like to have a clear understanding of things.

Thanks

Jackie