Anyone have an answer for this one?

elainsdaughter · May 2010

My mom went for her annual mamogram. There was a small speck on mamogram. they did a biopsy, then a lumpectomy, then went in for needle localization. They said they got it. She went in for post op check up and they told her she has Breast Cancer.5 weeks later. So we all went in to talk to Surgeon he said she had intraductal instu. I asked what stage? answer 0. I asked why he waited so long to tell us? he said he left 2 urgent messages. We found 1 message and it was a how are you? message not urgent. While in the office he tells us there is no cancer present now, they got the small lump but was urging her to get mastectomy or do 6 weeks radiation No history of Breast Cancer in family Mom is terrified Does this sound right to anyone? Thank you for listening

mnmom · May 2010

Sorry you are distressed. It does not sound right not to make the contact immediately.

Mom being terrified is understandable. She is lucky to have a caring daughter to help her through this. I had no recent family history either. Mine included dcis + other, I opted for a single mast, did chemo & 33 rads. Keep strong it is a long road.

Hugs to you & your mom

Texas357 · May 2010

The reason for the advice on the mastectomy or radiation is that they want to make sure they get any microscopic cancer cells that might be there. My advice would be to ask a lot of questions, do your research on treatment options, and take lots of notes. When I first met with my breast surgeon, he actually tape recorded the session knowing that we would only absorb part of the information the first time around.

thenewme · May 2010

Hi Elainsdaughter, sorry about your mom's diagnosis! It sounds as if your mom had DCIS stage 0 that was completely resected (removed) with lumpectomy.

It sounds like the doctor is a terrible communicator, and I'd be upset if mine waited 5 weeks to contact me. Can your mom go for a second opinion somewhere else? If nothing else, you should make sure she gets a lot more explanation about their recommendations. Whatever the recommendation (in this case mastectomy or rads), the patient should always understand the risks, benefits, and alternatives so they can make informed decisions.

One thing to keep in mind, breast cancer is not usually an emergency situation, so you can take some time to gather more information, seek a second opinion, and weigh the options. It's not unheard of to have mastectomy or radiation with DCIS, but your mom should be given plenty of explanation and information to make that choice (or not).

Best of luck! She's lucky to have you with her to help sort this all out. It can be so overwhelming and confusing! Keep a notebook with questions you think of so you'll remember to ask when you see her doctor.

Hang in there - she likely has a very good prognosis, and after the initial shock, things really do settle down significantly!

elainsdaughter · May 2010

Ty for reply did you have cancer when they did mastectomy. They are saying she has no sign of it at this time and removed it all. We are just weirded out that they want to do such a radical procedure with none present and what they took out was stage 0. Confused!?!?

elainsdaughter · May 2010

Ty for reply. I neglected to mention in 99' she had a stroke that paralyzed her right side and she can understand but it needs to be explained slowly and in simple terms, and they left out quite a few of things we are finding out But yes today I postponed surgery to investigate more options and we are getting a second opinion. Thank You for your insight good luck and prayers to all of you you are very helpful and brave. TY

mom3band1g · May 2010

If they removed all the DCIS with the lumpectomy a mastectomy is not needed. Depending on the grade, radiation is standard treatment after a lumpectomy. Some women opt for a mastectomy because of fear and some women have a mastectomy to gain clear margins. Hope this help a little. Good luck.

sweatyspice · May 2010

Get a copy of your mom's pathology report from the biopsy & lumpectomy (and whatever else there may have been). It should tell you exactly what kinds of cancer cells they found, whether they were aggressive or not so aggressive, whether the cells are sensitive to estrogen and/or progesterone hormones, and whether the surgeon removed a "margin" of cancer-free tissue in the lumpectomy (and if so, how big the margin was).

Those are probably the most important bits of information she'll need to make a decision about further surgery, radiation, or drugs.

It's complicated, she'll need someone to explain it all to her. It takes a little while to learn, but it's certainly not impossible. DEFINITELY get a second opinion, and try to get the second opinion Dr. to fully explain what it all means.

Have her get the pathology report from the Dr. who did the surgery, along with the slides of her tissue from the pathology department of the hospital where she had the surgery (you might have to pay a small fee for the slides), and copies of her mammograms, ultrasounds, MRIs - any other imaging tests she's had - bring all of it to the second opinion Dr.

From what you posted, a mastectomy doesn't make a whole lot of sense and you didn't post enough info to know if radiation is necessary - BUT - there may be other factors you didn't write about that could change that.

Whatever you do, assuming all she had was a small area of DCIS, remember you have time to learn about this and decide what to do. It's not life threatening, don't let anyone push her into treatment before she really understands what she's dealing with and what she wants to do about it.

ladyod · May 2010

It sounds to me like they identified the cancer via mammogram (dcis calcifications---the specks), confirmed via biopsy, and have already performed the surgery to remove it. Many times, the information we receive from doctors is misconstrued. I am an eye doctor and I have had people come in telling me they have cataracts when there are none, using eye drops for dry eye that turns out to be for glaucoma, or who are legally blind and still driving. Sometimes, doctors make the mistake of using medical terminology and the patient doesn't understand what is going on. We are taught in professional school to try to have a family member in the room when going over health problems because the patients will often focus on one part of the presentation and not hear the rest. Especially if they have difficulty understanding secondary to other problems such as a stroke, hearing problems, or demensia (Not saying this about your mom, just giving examples) You might want to sign a privacy disclosure so that from now on you will have access to all of her information whenvever you want it: HIPAA laws have made it impossible to get information on others without one. If your mom permits you to have access to her charts, you will be able to call and speak to someone about her case over the phone if you are unable to be there in person. And maybe the doctor was just a jerk and assumed it would be a waste of time to explain the procedures, but most doctors will not do this since most procedures need the patients consent to be done. (At least in the USA) Whatever the reason, I am sorry that the doctor did not explain things to her better. The good news is that her cancer was DCIS: it is non life threatening when found early and treated appropriately. Radiation following lumpectomy is usually recommended as others have noted, although age of the patient and grade of tumor does make a difference as well. Hope this helps!

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