Just diagnosed and confused over many decisions

Hi Suzanne,

Sorry you find yourself in this situation. You should have plenty of time to decide which route you want to go though, so don't let them pressure you into a decision.

How big is the dcis? They can take out quite a large lump with surprisingly little impact. I had an 8cm lumpectomy, with really a pleasing result, but unfortunately was one of the unlucky ones you mentioned who didn't get clean margins so had to go back for a mastectomy.

It's all ok though. It seems a lot when you are going through it, but it's amazing how time goes by and you get through it.

What are your fears for radiation? It's really not a big deal for most women, to be honest. With my pathology I had to have that as well!, but its just a few weeks of inconvenience more than anything. I have no real after effects, although my recent reconstruction on that side was a little slow to heal.

Are you type 1 or type 2 diabetic? Is your hypertension reasonably controlled? The cholesterol really is no big deal. You don't sound like a walking time bomb to me.

Take a deep breath, then take your time to decide what you want to do, and I think you'll do just fine. xxx

I am T2 on insulin pump. I had BMX, no recon. Did have rads. Too. During all most all of chemo, I just cruised on my basal. Same for day of surgery, and day after. No problems there. Rads gets to be a PITA, only because it's every. day. for. so. long.

I chose no recon because I didn't want any more surgery. It's nobody's choice but yours. I'm ok being flat, if your DH or anybody else has a problem, they need to deal with it, not you!

Check to see if your breast center has a nurse navigator. She can put you in touch with various support and help.

And somebody is always around here too

Dear Suzanne,

I'm glad to hear that your diabetes and hypertension are controlled. That makes things easier. I also have hypertension, high cholesterol, but not diabetes (yet anyway). My conditions are also under control. I am well over 60 so we have that in common. I'm carrying too much weight, hope that's not the case with you. I'm just saying this to say that we might be similar.

I've had two lumpectomies and a mastectomy, all on the right side, over the last 15 years. I really can't say that there was much difference to me between the lumpectomy and the mastectomy with regard to pain, range of motion, recovery etc. I didn't find any of the surgeries painful or recovery hard, but I think I have a high pain tolerance. Obviously, there's a big difference in cosmetic results. I've had radiation after the first lumpectomy. Nothing much to it, except driving there every day. I've had chemo twice and if given a choice between chemo and radiation, I'd take radiation any day. In your case, with DCIS, chemo is not one of your options, so you don't have to make that choice. Just wanted you to know that I though radiation was a breeze.

I didn't have any reconstruction after my mastectomy for more than two years. After two years, I decided that yes, I wanted reconstruction, so after a year of tissue expanding (which also never hurt), I got the implant (which also didn't hurt). Outpatient surgery, in fact. I'm still not symmetrical because they couldn't expand my radiated side enough, but it's a lot better than it was, and I was prepared for that outcome.

I feel like the surgery queen. In addition to the above breast surgeries, I've had major colon surgery due to perforated bowel and another major surgery to close the colostomy. Now, those surgeries were hard. Breast surgery is a breeze in comparison.

Ok, ladies, correct me if I am wrong here, but a mx doesn't guarantee you won't get cancer? You just won't get it in your breast because you have no tissue.

I am curious. Since your weight loss, have your bp and cholesterol been checked? I am guessing if you keep on the diet, you could really turn those and the diabetes around.

debiann, I had chemo, mastectomy, and finishing rads boosts, 4 more to go. The tumor was close to the chest wall so no option other than refusal for the radiation. And the skin burns are very real. They say it heals quickly. Take Care!

Approximately 20-25% of lumpectomies require re-excision.  A re-excision is not exactly another lumpectomy, as usually a smaller amount of tissue is removed.  When surgeons remove the tissue for a lumpectomy they ink each side of the sample and label it - an example would be yellow ink for the anterior, red ink for the left side, etc.  When the pathologist examines the tissue they note the margins for each inked area.  If the margin is too close, meaning not a large enough margin of healthy tissue, they will indicate the need for a re-excision.  Because of the inking they know which area needs additional removal. 

If you are postmenopausal and have a large enough breast there are several possibilities for radiation if you were to choose a lumpectomy.  Some centers have access to IORT radiation - which is a one time radiation directly to the tumor site, in the operating room during the lumpectomy.  There is also brachytherapy, which is done several different ways, but often involved an internal catheter or balloon at the lumpectomy site which is radiated daily for a week.  There is regular external beam radiation daily for 5-6 weeks, and the shorter Canadian protocol, which is basically the same number of grays for daily for three weeks.

Mastectomy cannot possibly remove 100% of breast tissue - that is why there is not a 100% guarantee that you will not have a local recurrence.  Approximately 1-2% of breast tissue remains after mastectomy - and potentially more depending on the skill of the surgeon.  For those with pure DCIS, there is less risk than for those with invasive cancer because the cells are contained within the ducts, which are removed in total.  This does not mean zero risk of recurrence, but another factor in recurrence risk for DCIS is the size and/or grade, margin size, and the presence of comedo necrosis.  The more aggressive the cells the greater the risk of recurrence.  There have been some studies using the Van Nuys Prognostic Index that correlate to recurrence risk.  Here are some links:

http://breast-cancer.ca/staging/van-nuys-prognostic-index-vnpi.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2459183/

http://www.ncbi.nlm.nih.gov/pubmed/20956828

Suzannecarole--My experienced breast surgeon recommended lumpectomy + radiation (+ sentinel node biopsy) rather than mastectomy for several reasons--shorter surgery time, less invasiveness, easier recovery. He also said that he would take enough tissue surrounding the tumor to give me clean, wide margins, which my surgical pathology report said he had done. And as he promised, the surgery time was short: they wheeled me into the OR at 11:15 and he dictated his report at 12:01, 46 minutes later (that includes his scrub time and my prepping time). No need for re-excision, no more surgery, finished, done! So if you are as fearful of surgery as you say, the shorter, simpler and effective procedure would seem to be the way to go, especially since as we age, the less anesthesia we get, the better off we are. Traditional external radiation was no big deal either--at 71, I had no adverse reactions at all, not even fatigue (but I work out at the gym regularly and walk every day, including during rads). Radiation did cause me to rearrange my schedule a bit, but only on weekdays for 7 weeks--that translates to 35 days out of one year, or less than 10% of a year, no big deal. I tell you all this because not all lumpectomies lead to re-excisions or the need for mastectomy (which, as others have pointed out, is not a silver bullet that aways totally eliminates the need for radiation). In fact, of all the women I know in my area who have had lumpectomies, only one needed a re-excision for one margin (and her tumor presented unusually, as it was tethered to her skin and the surgeon couldn't use a wire to guide him).

If you do seek a second opinion, do be sure to ask the surgeon how many lumpectomies he/she does each year, because experience is very important (more important than whether you like or dislike his/her recommended action). And if you don't know how many the first surgeon you saw does a year, give him/her a call and ask! Good luck in the days ahead, and don't feel pressured into immediate action!