I think I need a little support...

[jomi17]

In March I found a small hard mass in my right breast. My PCP felt it too so sent me for a diagnostic mammogram and ultrasound, both of which showed nothing. He sent me to a surgeon who also felt the mass and recommended an excisional biopsy. The surgery was May 1. At my follow-up on May 7 the surgeon told me that the pathologist wasn't sure whether it was ADH or DCIS so he sent the tissue to UCSF for further analysis. We have not gotten the final path report back from them yet. In the meantime I have been having problems with the incision site. I developed a seroma and then part of the "subcutaneous" suture broke through the skin. So it's back to the surgeon again today. The waiting is very difficult! As a former RN I know the possibilities and am prepared to deal with them--I just want to know what it is I have to deal with! I have always known that IF I developed any form of breast cancer, I would be very comfortable with bilateral mastectomy with reconstruction as my choice. I believe in being proactive about my health and with an increased chance of more cancer, it seems like a no-brainer(for me--I would never force that on anyone else--it is such an individual choice!). Yet my family members are all telling me that I'm crazy to even consider a BPM. Rationally I know that is their own fear, but I just feel set adrift and can't stop crying  when I think about their responses. It's amazing how the "rational" part of me loses to the emotional part of me in this situation.
Am I crazy? I'm 55 years old with two wonderful kids and somewhat supportive husband(he tries to be but he's a very rational engineer). I really think this waiting is taking quite a toll on my emotions.

[Lois428]

Guess I'm as crazy as you fletcher I've been thinking about having starfish tatooed instead of nipples tatooed.  I really wanted two sharks but will settle for starfish.
Lois

[fletch1119]

Too funny!  I love you sense of humor.  By the way - I did have my nipples reconstructed too - so you really don't have to give them up. I am so glad you are feeling better - it is so nice to be able to talk to other women who know exactly how you feel as opposed to those who can't comprehend why you would have a mastectomy.  I feel great about my decision and my outlook on life is sooo much not about the next bad mammo!  Keep in touch and keep your humor!  Later..

[jomi17]

Congratulations! I realized this afternoon that part of the "crazy" that my family may have been reacting to is my idea for reconstruction. When I contemplate having it done(and I still think I will eventually), I was thinking. I am 55 years old, a former "wild child" of the 60s and 70s who has become a suburban mom(and loving it). I have had nipples for all these years. If I'm gonna have a tattoo, I'm gonna make it a fun one, so I was thinking a smiley face(with a "nipple" nose!) on my left breast and maybe a skull and crossbones on the right that had the biopsy. Just an idea, but one that is really growing on me! Now that I actually write it, I guess it does sound a bit crazy, but I like that! I am feeling better all the time! Thank you to all the supportive people on this site! You are all awesome!
Jomi

[fletch1119]

I totally understand what you are going through.  I had microcalcifications that were biopsied was told I had atypia hyperplasia.  Not cancer but certainly something to continue to have on my mind every day.  I thought about it for a while and opted for a prophylactic mastectomy.  My surgery was in October and I have never regretted it.  It is a decision that only you can make.  I thought a prayed and found my answer and went ahead with the surgery.  I have not had any problems and the reconstruction is almost complete.  All I have left is tattoo in a few months and I will be done.  The best part is not even thinking about "what if" any more.  So I guess I am part of the "crazy club"!

[jomi17]

Hi Lois,
Your thinking sounds like mine! The thought of the prophylactic surgery is so much more "do-able" than the possible alternatives that I am leaning in that direction. I have a referral to a medical oncologist to talk about my options. I have the advantage of being older--I had a complete hysterectomy 13 years ago so no ovaries probably means no tamoxifen--though I will probably have to give up my estrogen. :-) Oh well, I knew the day would eventually come! My MRI showed nothing according to that radiologist, but I am going to pick up the films today and will take them with me to the oncologist. I probably won't have any surgery this summer but maybe this fall. Luckily I have the time to think about things. If I do, I think I will have the DIEP procedure. I have a bad back and don't want to lose any muscles from my abdomen like I would with the TRAM flap. It is so nice to know that I am not the only one who thinks like I do! Like the ad for one of the breast cancer walks says, "If this is crazy, I don't want to be normal!" Good luck! I'll be thinking of you.
Jomi

[jomi17]

Hi Betty,
I hadn't had any cysts before though my family's experiences had me pretty good about breast self exam, so when I found the mass it was different than anything I had felt before. It did feel hard like a BB though it wasn't as round. Admittedly, I kept rechecking it for a few weeks before I saw a doctor and I would recommend NOT doing that, because I got so used to what it feels like that by the time I had the biopsy I was second guessing myself and not sure I was really feeling it, even though both my doctor and the surgeon had felt it too! So get it checked out and put your mind at ease. Turns out mine was a cyst--the ADH was nearby--not part of the lump. Best of luck to you!
Jomi

[Lois428]

Reading your story reminds me of mine.  Some parts of it I almost could have written myself.  My mammograms were fine last July but because my mother died from recurrent breast cancer at the age of 56 and a younger sister having been diagnosed with ovariam cancer last year I decided to do the BRCA testing last summer.  The test came back negative but the doctor and I decided to do a breast MRI in December.  January I got the results that there were two spots that did not look right.  We moved on to ultrasounds and finally biopsys.  The biopsys showed atypical ductal hyperplasia (ADH) and also papillomatosis.  That kind of blew me away.  I decided to move onto removing them through a lumpectomy.  Thought I was done but the pathology report then showed lobular carcinoma in situ (LCIS).  Going to multiple oncologists, oncologist surgeons and plastic surgeons I now know that there are many different opinions on how to treat LCIS. I have pretty much decided to go with prophylaxis bilateral mastectomy.  I now have an appt. set up to speak with one of the oncologist surgeon at MD Anderson in Houston the end of this month.  For some reason I know this is the direction I need to head.  I certainly hope I have not defined myself by my breasts.  With current technology most cases can have reconstruction started at the time of the mastectomy.  I'm not looking forward to the surgery but I feel really good about my decision.  Being able to wake up every day and know that my percentage of getting breast cancer is next to nothing is comforting.  I also feel I will be able to recover from surgery better than recovering from surgery, chemo. and radiation if I ended up with breast cancer.  With LCIS all they can do is put you on some type of estrogen reducing medication for five years and watch you closely and hopefully they will catch it at an early stage of cancer if it occurs.  Through researching everything I have found that mammograms don't catch everything, breast MRI's don't catch everything, ultrasounds and biopsys are good but everything is only as good as the person doing the procedure.  You have to be your own patient advocate- ask questions and insist on further tests if you feel something is going on with your breasts. I have had friends and family that have had good mammograms but upon having breast MRI's, ultrasounds and biopsys only to find breast cancer but they have had to ask for this further testing. I have asked God to show me the direction I should be headed and feel I have been blessed to be able to make this decision before it has become cancer.  I have been able to have the time to research everything and not rush into anything.  Keep me posted on your thoughts and decisions.  No you are not crazy unless I am too.

Lois

[Cetto]

I've got a question for you.  I have fibro cystic and know what the cysts feel like.  Last night in my in my left breast I found a hard bb in it. I have never felt this type of cyst/lump before.  What did your lump feel like?
Thanks for any help
Betty

[jomi17]

Thank you!! My mom's sister had breast cancer and both my mother and sister have had multiple surgeries for fibrocystic disease, though luckily neither had ADH or ALH. I just don't want to have to go through all this over and over again. The last 3 weeks have been the longest of my life! And japdip --you are SO right--they have always thought I was a tad crazy!!! I would never do it out of spite; I just think that having an increased chance of cancer is not something I want to live with. I know they will love me no matter what--this morning was just a real low point after 2 weeks with no answers and everyone telling me to stop thinking about all the possibilities--like I could have!! Thanks again for the support--I needed that!

[japdip]

First of all ... congratulations ... no cA. Now, I can't believe you have reached your age and this is the first time your family members have thought that you're crazy !! LOL, I can't see any reason though to consider the surgery at this point since you did get your Path. report. Don't do it just to show "then" that you can but I really don't see that it would be any of their business if you did. So, Am I crazy ??? Too ???

[Prettyangelface]

you're not crazy! I'm happy for you that the path report came back as not cancer. Why would you still be inclined to do a BPM? Do you have a family hx?

[jomi17]

Well, I may be crazy since no one has reassured me that I'm not, but happily I FINALLY got the final path report. Diagnosis: atypical ductal hyperplasia, intraductal papillomas, and apocrine metaplasia and cyst formation. At least I don't have to rush into a decision about BPM. I'm still inclined to do it, but maybe by waiting the family will get used to the idea. I will continue my research about the increased chance of cancer, but for now I can relax.