Newly diagnosed DCIS and very concerned

LisaDCIS

hi. I’m 40 years old (and a newlywed as of May) and went for my 1st mammogram. Well, a biopsy and MRI later, I have DCIS. It seems to be 1 small spot and very hormone positive. I’ve been to 3 surgeons, 3 radiation therapists, an oncologist, a plastic surgeon, and a partridge in a pair tree. I’ve very small chested- 34A. Just thin in general. And my DCIS is located in a very noticeable place— they call it 11 o’clock. So if I had cleavage it would be there, on the inside top part of my left breast.

My concerns: 2/3 surgeons said I would have dimpling from a lumpectomy as I have little tissue to work with. And they, and the radiation folks, said that my dimple would get worse with radiation. The plastic surgeon said that fat grafting probably wouldn’t work on me since fat grafting after radiation makes it hard to keep the fat in place. Also if I opted for a mastectomy plastics said the smallest implant they have would still show the outer part of the implant through my skin. So needless to say I left today very upset.

Has anyone who’s petite and small chested had a lumpectomy? Did you have dimpling? Has it been fixed?

Can anyone tell me king term effects they’ve had from radiation? Esp if small chested bc apparently we are a rare breed and have problems since there is such little tissue to begin with.

I’m also trying to decide between whole breast radiation of 15 rounds (3 weeks) of radiation- 2.66Gr daily and partial breast external radiation at 5 rounds (every other day spread over 9 days) of 5Gr each of those 5 days. Anyone have knowledge of comparing permanent side effects of those? I know the latter is not well known as most are twice a day rounds for 5 straight days.

Thank you

ctmbsikia

Oh Lisa so sorry about your dilemma, but nice work on the humor (partridge in a pair tree-LOL) and congrats on your recent marriage. Heck of a way to start things out right? I trust he is a wonderful support for you and you will be done with this DCIS before you know it.

Only suggestion I have is to ask the breast surgeon if the plastic surgeon could close the incision if that hasn't already been mentioned. You may get a better cosmetic out come that way.

11:00 is not a great spot. That's where my tumor was. I have larger breasts (38C) and a tumor on the larger side and it does dimple when I lean over/forward. BS said she did a lot of work in there to pull the remaining tissue up into the spot where the tumor was removed.. Either way it sucks! It will be your decision and what you think is best for you. I wasn't prepared for cancer and I was in no way prepared to undergo a drastic surgery such as the MX so I did the partial. Regarding radiation the key is self care of your skin. While radiation will kill any stray cancer cells, it will also kill your skin cells. By the time I was done that treatment, my skin had peeled, I used Aquaphor everyday 2x's a day and when new skin grew back, you cannot see my surgical scars at all. One good thing! I have no SEs from having radiation.

Good luck to you, please let us know how you're doing. I do hope it works out as well as it can for you.

edj3

LisaDCIS, I don't know that I have advice for you either. My tumor was more at 3 o'clock on the left breast but a bit behind my nipple. I'm a 30 DD so not large anywhere. I'm still swollen from rads, too, so I can't answer your question about how much things will shrink although my radiation oncologist said things will shrink and that it's a good thing to have swelling now because that may mean I end up with fairly balanced breasts. No idea right now, though, I'm clearly and visibly not there yet.

I'll echo taking good care of your skin during radiation--start on day 1, don't wait. I used Miaderm which is pricey but it worked really well for me and kept things soothed. I have a hard time using sticky lotions like Aquafor or Eucerin, but the Miaderm isn't sticky and the scent is barely noticeable and also pleasant.

MBPooch

LisaDCIS - are you sold on lumpectomy? My situation was a little different because I had implants due to being very small chested so opted to go that route again. Selfishly I was really hoping for a good cosmetic outcome, I was 45 when diagnosed. I also wanted to make sure there was nothing else lurking or not seen. With BMX there was no need for radiation or hormonal drugs which I also wanted to stay away from. Because I had implants I was able to do direct to implant on the same day as my BMX but if I hadn't been able to do that I would have gone the expander route. Just wanted to throw my experience out there. Best of luck in whatever you choose, it will be in your rearview mirror in no time!

Ingerp

I came at this from a slightly different angle--just not that concerned about the cosmetic results of the surgeries. We tend to wear our scars proudly in my family. I never considered any kind of PS/reconstruction. You absolutely can't tell on my right side that I had surgery. The left side has what my BS called a "shark bite" out of it, but it's on the outside, below the midline where I really don't see it unless I look in a mirror. I was told nobody would be able to tell when I had clothes on so I figured why bother? We're all asymmetrical anyway, right?

Re: permanent effects of rads, I haven't noticed any, although I understand there are some--just not enough for me to notice. Also--Miaderm is mostly calendula cream. You can order that on its own, and it's a lot cheaper. I used a variety of calendula cream, Aquaphor, Eucerin, Desitin, . . . . I don't think it matters so much what you use--more that you slather something on several times a day. I'd just grab whatever was closest and put some on.

AliceBastable

I used a combination of Aquaphor and pure aloe, and had minimal - and temporary- skin damage. Several months later, my only problem is drier skin on that breast, so I use Eucerin when I think about it.

Is your RO really offering you a buffet of treatments from which to select? How very odd. Mine mentioned the possibility of 22 treatments before the surgery. Once the pathology came back, and the RO did the set-up, it turned into 33 sessions based on my specific combination of pathology, breast structure, and whatever else is considered.

JLall

Hi Lisa, I'm petite and a 34A as well. I was diagnosed at 46. My DCIS was behind the nipple, a bit to the left. Cosmetically the first lumpectomy went really well for me but I didn't have clean margins. The second lumpectomy left my nipple sunken in, and just a tad off-kilter (she's throwing a side eye now). I was pretty upset by that at first. I had just barely gotten used to it when radiation started. So far so good, though my nipple is not psyched to endure more and is dark as a storm cloud.

My hubbie has been super loving and that has helped me deal with the cosmetic changes. I asked him what I would do if my nipple didn't come back out and he said, "Don't worry, I will coax it out." Hopefully you will have good results and some of that newlywed loving energy can go right to your little boob.

I also found that the initial shock wears off: at first it felt like not "my" body, but as I get used to it, it becomes my body and the differences seem less significant - smaller - than they did at first. I hope the same will be true after radiation. (I'm 13/20 today.)

I don't know the answer to your radiation question, but I do know that they have me lying on my back, hands over my head for rads because of my small boob. It's totally awkward but fast.

Sending you good thoughts!!

Nursepatient35

First off, I'm sorry you have to deal with this. Simply stated, it completely sucks. I was diagnosed in the beginning of 2018 and had 32/34 AA's. I'm not a super petite person, just inherited my boob size from my dad I guess. Anyways, I opted for a double mastectomy because it gave me the most peace of mind to not worry about breast cancer anymore. My PS placed my tissue expanders and then implants under my pectoral muscles so that I would have enough coverage over them to not show any dimplings, etc. They turned out very well, I have no residual pain and start to finish, I was completely done with the process in a little over 3 months. From reading on this board, seems like most go on top the pecs but in my case, this worked well. I'm guessing it was more painful this way but I didn't know any different. Good luck to you in whatever decision you choose and feel free to ask me any other questions.

LisaDCIS

hi may I ask what cup size you ended up with? I asked 2 plastic surgeons. 1 said the smallest I could end up with was a C and the other said large B if I had a double.

Nursepatient35

I've never really been fitted after my mastectomy to see what size I am. My PS said every bra is different so sizes are all over the place. I'm probably a BB or small C maybe? Honestly, I don't even have to wear a bra anymore. I opted not to do nipple sparing because that left a 2% of recurrence. I pretty much wear any medium or large sports bra now a days just because it feels better.

Rah2464

Lisa so sorry you are having to go through this ugh. I was also small chested (my PS laughingly called me an A+ cup size). I was a little more advanced at diagnosis, IDC stage 1, and opted to do a nipple sparing BMX. I am very thin, thinner now than I was at diagnosis due to the antihormonal meds. My PS determined my implant size based on how much tissue I had available as I went direct to implant. She did increase my size a smidge to a full B at my request so I think you can go smaller than a B or C if you want that. Keep pushing to get the results you want. Some PS think bigger is always better but it is your body and how you feel is the most important. Hugs to you

1LifetoLive

Hi Lisa, sorry you're going through this too. My biopsy came back with ADH and my surgeon recommended I have a lumpectomy to reduce my chance of breast cancer in the future. So, I had a lumpectomy done on the left. My lump was around the 2-3 o'clock position. Unfortunately not only was it ADH, I was diagnosed with DCIS. I'm small chest too (34A) and almost 5 weeks post surgery. I don't have any swelling anymore. My incision has healed great without any dimpling or abnormal shape. Maybe I'm lucky! I start radiation in a week. I'll have 20 sessions. We'll see how things look then. Good luck!

LisaDCIS

that’s great news for you that you are healing well! Are you having whole breast radiation?

1LifetoLive

Yes to the whole breast radiation. I go for the simulation on Aug. 21 and then will receive 20 sessions. After that will the MO recommends Tamoxifen.