kathryni

Thanks for the support and clarifications, I greatly appreciate it.  

I'm not sure of my exact breast cancer risk to be perfectly honest.  When I first got the pathology back I was floored because I thought I had no family history.  Since then I've come to find that my grandmother and her sister both had breast cancer.  My family is undergoing some genetic counseling because besides my grandmother and her sister, there are literally no other females on that side besides my sister and myself and we want to make sure there aren't genes hanging out on that side that we've missed before we go on to have children.  

I don't know what my official risk is with a minimal family history but it is comforting to know, as you pointed out that the odds are still in my favor for never developing breast cancer.  It's just very troubling to face this at 25, knowing that I (thankfully) have such a huge amount of time in the future to worry about it.

Thanks again for the advice and the link.  I know I'm probably overreacting, but it is very comforting to not feel alone (especially since my husband is 2000 miles away right now!)

Katie 

Tender-

Thank you so much for the advice. I haven't had great internet access, but I took your advice, especially about the sleep and protein intake (and sun!) and it seems to be improving. Albeit slower than I'd like (I want it fixed now!), but improving nevertheless.

Stephanie-

Good luck on your upcoming surgery! For me they took all the tissue in the duct from the nipple to the muscle wall, so it sounds like you'll be having the same procedure, and you're right, they're not as common as the regular excisional biopsies, it's hard to find good information. I am very small chested, so I'm sure some of what I experienced will be different (having approximately 1/4th of an A cup breast is probably a lot different than a C or D cup), but I can tell you basically what it was like.

I had a very large dose of anesthesia (my surgeon apparently did it intentionally so I would sleep through the first day), so I don't remember much from the day of the surgery, but the pain was not bad at all. I tend to have big problems tolerating anesthesia (persistent nausea despite anti-emetics), but I was given a new drug (called Emend, used a lot in chemotherapy) and it worked wonderfully. I didn't take anything for the pain at all, not even tylenol (you cannot take advil, aleve or aspirin, if they haven't told you that already) until about 3 days after when I had some achiness, but even then it was totally tolerable. I just would seriously recommend avoiding any lifting or exercise type movements for at least a week. I went back to racquetball about 3 1/2 weeks post-op (and my incision split open at 4 weeks, so I'm trying to figure out if it played any part...).

I wore a sports bra day and night for 3 weeks, make sure it's good and tight. The more it can move, the more it hurts. I actually went out and bought a couple in a size smaller than I usually wear so it was more snug (I also ended up losing some weight after the surgery, so it was advantageous to have the smaller bras). I had most of the stitches removed at 1 week post-op, and then the last two at 2 weeks post-op. At that point, I developed a staph infection (not at the incision, but nearby), but everything else was fine. My incision didn't begin pulling apart until the 4th week after the surgery and it was really subtle at first. It's not infected thankfully (not red, not hot, just sore and leaky, and a hole about the size of a q-tip head), and I'm on antibiotics just in case. The seroma broke through on Friday, but I've been double-layering my sports bras, packing the incision and taking it easy and it's gotten better, though it's definitely still "open."

As far as the incision is concerned, the duct I had removed was at about 8 o'clock on my nipple, so the incision went from there, in a sort of s shape down to the bottom edge of my areola. You really can't see the scar at all unless you look closely and since the fluid filled the area where the tissue was removed, there isn't a noticeable difference in the size of my breast. Though admittedly, this breast was larger pre-surgery, so I guess now it's just average.

After the pathology came back showing the hyperplasias we didn't really have any options on additional treatment. My surgeon talked about some studies about the use of tomoxifen in women who have ADH, but since I'm on the rather young side (just turned 25), it's not an option. I am going for genetic counseling soon because as it turns out, my father's family tree has only one woman (my grandmother) besides my sister and me, so there's a really reasonable chance there could be genes hiding out there. Other than that, I'm just on a perpetual six month ultrasound check. Literally for life, or until we find something new, which will hopefully be never.

I had my 3rd (and final surgical) follow up with my surgeon for an excisional biopsy (found typical and atypical ductal hyperplasias) and I asked her about genetic counseling (because I'm only 24 years old). She said it seemed like a good idea and thought that the BRCA test might be especially smart given that my father's side of the family has no women in it aside from my grandmother (who is alive and well), my sister (age 27) and I, so the genes could easily be hiding there.

But, she also said that there are almost no genetic counselors in town, so I'm kind of stuck. Does anyone know a good place I can search for one? We are still rebuilding much of the medical community here, but if there's someone in Baton Rouge or somewhere else nearby, it might be workable. It's not really urgent, but it's something I'd rather have done sooner than later. If nothing else than just to know. I can deal with information, even bad news, but I can't deal with what feels like a lifetime now of not knowing.

Kat

I'm not sure where would be a good place to ask this, so I'm going to try here.

I had an excisional biopsy on 4/22 (pathology showed ADH but no malignancy!) and at my 2 week check with the doctor she noticed a spot in my armpit and it turns out that it's a staph infection. I have been put on antibiotics (I took the post-op prophylactic antibiotics for 5 days- the doctor let me stop early because they were making me sick) and it seems to be a little better, but I'm not sure if there's anything else I can or should be doing. The doctor didn't think that the surgery caused the staph, but she really didn't know. All I know is that I'm uncomfortable and not feeling great.

Has anyone had a post-op staph infection? How long did it take before it got better and you got back to feeling normal?

Kat

Me too. Hope everything went smoothly!

Leaf-

Thanks so much for all the information and links. Everytime I begin to feel alone or lost, I post here and someone like you shines a light and suddenly I feel found. I cannot thank you enough. I know that there's still vast quantities of uncertainty, but it is really nice to have some information and good links to go through.

I think I've been most frustrated by my inability to control the situation, so researching and trying to understand more has been my small way of trying to regain control of my universe. It's slow, but it's definitely helping.

Thanks again, really.

Kat

alizb12

I'm 24 and I just had an excisional biopsy (and removal of the associated quadrant of tissue) for a lump that we've been watching for about a year and a half. It is scary to find one and at this age, it's tough to know what to do. The statistics of malignancy are so low (especially with no family history), that you really have to talk it out with your doctor.

My surgeon asked me what I wanted to do. She said I could have a biopsy or we could watch a wait for a few months and then decide. I knew that I would get no rest without the biopsy, so I had a sterotactic biopsy in December of 2006 which came back as fibrocystic tissue, which is really normal in women our age. Most of my lump was removed by the original biopsy, and she scheduled me for normal checkups post biopsy for 3, 6 and 12 months. Everything was going fine for me and the decision to do the excisional one was only made after the tissue regrew to about twice its original size in a 6 month time period (noticed at the 12 month check up). Even after we saw the regrow, we waited 3 more months before we actually committed to the quandratectomy.

It was because we were watching it that we were able to make the decision to remove it when it became abnormal, but there was definitely a time of watching and waiting before we needed to go in and do anything more invasive. Mine turned out to be fibrocystic tissue like before, as well as ductal hyperplasia and atypical ductal hyperplasia, so it was good that we removed it, but even with the abnormalities, there wasn't an immediate rush, so don't be put off too much if they suggest that you wait and watch for a little while.

What I'm trying to say is, talk to your surgeon, express your feelings, but also know that statistics are with you and most likely, it's benign. I know that those statistics don't take away the fear, but hopefully it's of a little comfort. Do what's best for you, your surgeon should be willing to work with you.

Good luck,

Kat

Thanks Leaf. My Fiance (who is in medical school) looked at me like I had 3 heads when I said I was worried about the fact that we've never done an u/s on the left breast. I think this has more to do with him being a man than anything else.

I appreciate the clarification on the risk also. I am glad to know that my relative risk is still low, I just wish it wasn't something I'd have to think about at all. I have been trying to find statistics on people with ADH under the age of 25, but I haven't gotten far.

Thanks again for answering the question and for the information. I guess I'll keep on reading.

One other question for anyone who might be reading. I still have a few stitches in from my surgery (I guess technically called a quadrantectomy), and it is still rather painful, arguably more painful than it was last week right after. I've never had stitches before (staples, but not stitches), is it going to feel better once the stitches are removed, because it's still fairly uncomfortable and I'd like to be able to return to "normal" as long as possible.

Thanks,
Kat

Thanks to everyone, I am thrilled to be cancer-free, but a little overwhelmed at how much my lifetime risk just increased. I'm sure I'll come to terms with it in time.

The doctor didn't offer any medication to mediate the risk. She's just scheduling me for semiannual ultrasounds indefinitely (my breasts are far too dense for mammograms, and I'm only 24). I'm going back on Tuesday to have the last few stitches removed, so I'll ask then if there's any medical management that we should be considering (and about the BRCA tests). Is there a way to know if tamoxifen would work? I feel like you'd have to know whether the ADH was hormone driven or not, or perhaps I'm misunderstanding the way it works.

Thanks again for the support and the suggestions.

-Kat

I met with the doctor for the post-op and pathology report. They removed an entire quarter (quadrant, apparently I wasn't being too literal) of my right breast (which was an A cup to begin with!) and within the tissue found:

-A simple cyst on the surface (benign)
-Fibrocystic changes (benign breast disease)
-Ductal Hyperplasia
-Atypical Ductal Hyperplasia

The good news, (besides the obvious fact that none of it is malignant) is that the areas of DH and ADH were not near the margins of the excision, so no further surgery is needed.

The not so great news is that apparently the ADH increases my lifetime BC risk 5x that of the normal rate, and I have to be monitored every 6 months for literally the rest of my life (I'm only 24).

I am celebrating, but definitely not as enthusiastically as I would've liked. I know it's good news and I'm so thankful for that, I am just a little overwhelmed with what I learned. I still have a lot of reading to do before I think I'll have my head wrapped fully around this.

Thanks so much for all the prayers and support. I'm not sure what happens next.

Kat