So sorry to hear your news. I had the same diagnosis back in 2007. I opted for a lumpectomy with radiation, but they couldn’t not get clear margins so I ended up having the mastectomy after all. But at least as a result, I didn’t have to have the radiation. I agree with the previous advice, make sure to take someone with you to your doctor appointments. It helps to have another set of ears and someone else to ask questions. Make sure to write down your questions ahead of time and take notes during your visits.
@Toledo, I’m so sorry you’re dealing with this. I’ll echo the advice to get more information before you act. I’ve dealt with breast cancer twice and had a lumpectomy, chemo and rads the first time, a BMX the second. I don’t usually recommend that people look at information on line as much of it isn’t well researched or is just plain scary, but the one exception is breast.cancer.org. It has some really helpful and scientifically sound information and the discussion boards offer support from women who have been where you are. http://www.breastcancer.org
Huge hugs. I actually recommend staying off the disease-specific “support” forums. Everyone’s cancer is different, and there is way too much info on the web that can be very depressing yet may not be applicable to your own case. If I were you, I would FIRE any PCP who would give me treatment advice in the areas where they have no expertise. Their job is to provide referrals to specialists and coordinate your records. Hugs again.
So much good advice here! So scary, even to have the least bad diagnosis. Get those specialist second opinions on treatment and be thankful you got an early stage diagnosis!
Over a decade ago I, a physician, got a stage 2 melanoma diagnosis- a cut and cure. But, despite knowing it was curable with only surgery needed it was devastating. So much fear, worry, why me… It takes time to get over the shock of even the least bad situation. You get the advice and take things step by step. You regain control of your life when you know what you will do.
None of us here can tell you what works best for YOU, but so many are telling you to seek out local experts. This means not researching to the nth degree and going to the “top/best” specialist in the country. It means a trip to an oncologist in your area who can go over the pros and cons of treatments, their risks, benefits, side effects… The job of the primary physician is to punt to experts. btw- !@#$ insurance plans often dictate which professionals are in your plan.
Learning about the disease is useful but there is so much junk out there, especially in forums. Best wishes.
My experience was almost identical to sax’s (post #15).
From what I have read, a small DCIS, stage 0, is barely considered cancer these days. I had one, and it was removed via surgical biopsy, followed by radiation. Some doctors actually do not prescribe radiation for DCIS any more. In my case, the radiation kicked off a bout with shingles. (Which maybe could have been prevented if I had had the shingles vaccine.)
Do get more than one opinion. Tamoxifen was suggested to me too, but I decided against it. My mammograms have been perfectly clean in the intervening two and a half years.
Thanks, everyone. It’s shocking how common breast cancer has become. I am going to meet with a local oncologist and then will probably get my second opinion from the Cleveland Clinic.
Contemporary practice is to identify and to label as “cancer” a much broader range of conditions than was the case when we were young. That means that far more women than in past generations are treated for breast cancer, and view themselves as survivors of breast cancer, without there actually being a meaningful increase in the rate of malignant breast cancer.
Sending hugs. So glad that you are close enough to get a 2nd opinion from Cleveland Clinic. My cousin’s daughter had a lumpectomy with reconstructive surgery on Tues. for DCIS stage 1. She was advised and will have radiation and Tamofixen. Keeping you in my thoughts!
@toledo I am sorry for your news. I was diagnosed 6 years ago at the age of 40. Very early stage and I had a double mastectomy. You do not want to fool with this, but just my 2 cents! Good luck and feel free to message me if I can help in any way.
Please make sure everyone (including here) is not conflating DCIS with ductal carcinoma (not in situ). They are very different things. Like @NJTheatreMOM I had DCIS (stage 1) and only had local disease so only had surgery/reconstruction. No radiation and no tamoxifen. My H is a radiologist and breast imaging specialist. Mastectomy will likely be based on how the DCIS looks (localized v multiple sites) but that, radiation and true chemo (not tamoxifen which is slightly different) seems like a lot for DCIS stage 0 and is not necessarily a given. A lot of DCIS gets just surgery +/- radiation and tomoxifen but not ‘real’ chemo. Good that you’re seeing a second opinion. All cases are different.
@toledo , I hope you don’t have to wait long for either appointment and that you walk out armed with good information and a better handle on what is best for you and your body. One step at a time!
Exactly as @jaylynn says. Only invasive gets chemo. DCIS is often found with IDC, but IDC is the diagnosis and is staged from there.
breastcancer.org is the only site I’d look at. The DCIS community there helped me a lot when I was going through it. My doctor recommended it. The medical information is spot on.
While it can be over treated, it is not to be taken lightly and every affected woman, along with her medical team, should assess her risk individually.
As a stage IIIa BC survivor, one thing is to separate out the ‘noise’ and what information applies to your specific medical condition. I listened very closely to my MDs, asked them for web site sources of info, and asked questions as I was digesting the diagnosis and treatment path.
I have kept a ‘medical time line’ with lined paper, each line is a event - doc visit, lab draw, treatment, etc. It is now up to page 7 after starting 8/7/09. Keeping copies of test reports, labs, etc - sometimes helping coordinate my care with info brought along. Docs not all linked electronically. When they ask questions, it helps with correct information.
There is a FREE annual publication “AACR Cancer Progress Report 2016” American Association for Cancer Research. Go to www.cancerprogressreport.org I get it every year. Lots of info.
I belong to two cancer support groups (one is breast cancer).
Cancer is one of the things that has affected my life in a pretty major way.
Toledo, I haven’t had BC, but I’m a long-term leukemia survivor. Sending you love and strength for whatever you and your doctors decide is the best course. I found it helpful to have a list of questions/issues and to have someone with me at the early appointments so that we’d cover everything we wanted to know and what the docs had to say. The appointments can be so emotionally overwhelming that we may not be able to think on our feet as well on our feet as usual. (I STILL take a list of questions to my appointments, because otherwise I forget to ask about something or other…)
Agree about how some medical information during emotional time, and just feeling this helplessness - almost a shut down kind of feeling where you just are so overwhelmed. In addition to a medical time line (every test, appt, procedure on a line with the date and brief description) I wrote notes from each MD appt during critical times. You just don’t remember things, and I would write everything on a separate sheet of paper, date and doc name on top of sheet. That way, you can review when you are ready to have your brain process information, and formulate your questions and re-activate your decision making process.
Key things to cover in a MD appt - always good to write them down.
OP here with an update. First I’d like to thank everyone for responding. Breast cancer seems way to common.
I met with local doctors and then decided to go to Cleveland Clinic for a second opinion. I was not impressed with Cleveland Clinic. It was a total waste of time. Clinic is too big and impersonal and they couldn’t offer anything I couldn’t get locally. They also wanted to do all their own testing, despite asking me to hand-carry all my films, specimens.
I’m waiting for genetic testing to come back. If I’ve got one of “the genes”, I’ll go with a mastectomy. Otherwise, a local surgeon will do a lumpectomy. Radiation and Tamoxifen are the recommended follow-up for lumpectomies.
Having a second set of ears has been very helpful. My husband is a saint.
If anyone is dealing with breast cancer in the NJ area, I talked to a wonderful surgeon who was highly recommended for her new techniques. Her name is Dr. Laura Klein and a friend says her breasts look better after surgery than before surgery.