Please help me out.

nznyc12

My mother came back home today with her results, in tears, and said they told her she has DCIS. I've tried the best I could to ask more questions so I can research a little more about it but I think shes still in a state of shock, as am I. But I want to prepare a list of questions for her doctor when she comes in for her MRI? She has two doctors right now, her doctor who did the evaluation said that she's very "lucky" and will most like need to do radiation treatment only, she did instruct my mom however to speak to her other doctor who actually performed the surgery. But apparently she said that her other doctor's diagnosis will most likely be the same.

 I'm very very confused. My mom went through two different surgeries. She went through a surgery two years ago for benyne and then three weeks ago to remove duct tissues? I know most of these questions I'll have to ask her doctor but if they took out suspicious tissues that came back DCIS, whats the next step, wouldnt they have already taken the pesky problem out? Again, most of these were explained thoughrougly I'm sure but my mom just came back with DCIS and Radiation in mind and nothing else stuck. 

How long is the "typical" radiation theraphy? What to expect? And how do I help my mom? Shes already really depressed just finding this out today after the preliminary result came back two weeks ago that said it wasn't cancerous but "more testing" was needed, and now it came back as DCIS and her worries are tenfold because its actually worse than she intially thought.  

Since she started having her breast issues two-three years ago, I've been trying to encourage her to have a strong mind and to be prepared for anything and everything and that I can only imagine the stress in your head when you're told you have even the "lucky" DCIS case. Is there anything I can do to help her emotionally and mentally through the process? My mom have had her share of bad lucks and over the years I've watched these types of scares get the best of her. And in the last two years alone worrying about the possibility of breast cancer have been eating her alive. Today she spent the last two hours crying, and as much as I try to console her I Cant even imagine what I could say to ease her mind.

All and any help and suggestions would be greatly appreciated.  

I will update her signature info on the 10th once I speak to her doctor when she goes in for her MRI 

SheChirple

The good news you can share with her, to help ease her mind, is that DCIS alone can be successfully removed with lumpectomy.  Then the radiation basically burns away the 'margin' of the remaining tissue, or the edges of the remaining tissue, to make sure every last cancer cell is gone.  She "can be" cancer free.

It is not pleasant, treatment in the form of radiation can be pain free, but I understand really takes the energy out of you for some time.  Successful treatment is an almost given. I don't want to down play it, as it is cancer, after all.  However, it is the most easily treated form, and the best survival rates.

Read as much as you can on this site, not just the discussion boards, but the actual information pages.  It can take hours, but will leave you well informed and give her much comfort.

I do see 1/1 nodes, which makes me suspect she needs an oncology consult to determine if chemotherapy is in the cards.

Keep in mind that the cancer, itself, rarely produces signs of serious illness until it is far advanced.  The treatment has seriously life impacting side effects. 

Assure her that you will be there for her.  Hugh her.  Do not be afraid to express your fears, and encourage her to express hers.  Go with her to all appointments.  She should NEVER go alone.  For reasons you have already seen.  She will NOT retain the information given to her.  Someone needs to go to take notes, yes, take notes.  Doctors expect it.  She needs you on her "team".  When you make a note, read it back to the doctor/nurse to make sure that your note is accurate before you leave.

This site is wonderful to come back to with questions "Dr. said XYZ, what does this mean?"...etc...

Information is power.

nznyc12

Thank you so much. I will update with the more accurate diagnosis when I get the actual information from her doctor. I could be wrong but she had a surgery a few weeks ago, which I'm going to assume was the lumpectomy? The term lumpectomy was not mention by the nurses, or maybe I missed it? Because now her doctor recommend that she goes through radiation treatment but I most of the information I've found here usually goes from lumpectomy to radiation. 

She just got her bloodwork done. I'm a bit frustrated that we ought to travel to different hospitals for different things and have to physically go get results from one hospital to be analyzed in a different hospital and back and forth. I'm trying to get her to move her MRI sooner than the 10th. She was still really down earlier and didn't want to go to her bloodwork but we got it done.

I'm trying to hold back as much as I can to show how scared I really am because I think it'll scare her even more. I'm going to do my best to keep reassuring her the positive side of things.

I lost my beloved aunt in breast cancer over ten years ago, It was the most painful thing to watch as a kid and I can't bear to watch my mom go through something like that. Its so frustrating to know that over ten years later, the research and treatment for this pesky disease barely evolved. Anywho I'm just angry at this entire situation but I can't vent to my family because everyone is just really scared at this point and I have to be strong for her.

I've  highlighted a lot of good topics here to ask her doctor. I will keep updating. And thank you again!

dlb823

nznyc ~ I agree with SheChirpie that both you and your Mother need more complete information to understand her diagnosis and be able to take control of any upcoming decisions regarding her treatment.  Asking for copies of any reports (biopsy pathology, surgical pathology, etc.) for a file of her own would be helpful.  Since she still needs an MRI, I'm guessing that her most recent "surgery" was an excisional biopsy, so if I've understood her situation, it sounds like she may still have a lumpectomy ahead of her.  

DCIS, as SheChirpie explained, is the earliest form of bc.  It doesn't, however, travel to lymph nodes, which the "1/1" in your diagnosis line indicates.  Often a bit of IDC (a more invasive bc) is found with DCIS, which could be the explanation if she does have a positive node.  It's important that your Mother understands her diagnosis because DCIS and IDC frequently require different treatment (tx).  If your Mother has some IDC, an Oncotype-DX test may be done on the lesion that's removed, to ascertain if chemo would benefit her.

Radiation is most often done for 35 very short sessions (just a few minutes each) each weekday.  What radiation basically does is sterlize the breast tissue so that bc cannot regrow in that area.  Very mild burning (like a sunburn) is a common reaction, but some women don't even get that.  Occasionally women do burn worse, but there are usually explanations as to why that happens, and it's usually with bc that requires much more aggressive tx than it appears your Mother is dealing with.  Fatigue is possible, but not a given.  I had just a bit of it, but I honestly think it was from the cumulative effect of two surgeries, chemo and then rads, plus all the emotional stuff that goes with that.  Many women report that exercising and eating well during radiation helped them avoid fatigue. 

I'm glad you've found BCO.  Let us know what other questions you might have.  And be sure to tell your Mother about BCO.  There are threads starting here each month for women going through all the various stages of treatment, and having the support of other women going through chemo or rads with you is very empowering.      Deanna 

cycle-path

nznyc -- good advice above. I thought I would mention, though, that it could be a good idea to get some sort of signed form from your mom that would allow the doctors to speak to you about her situation. Because of doctor-patient confidentiality laws, without her permission they won't tell you much unless she's present. But I believe a signed release will allow them to have open discussions with you.

If you decide to do this, check with the doctors' offices to find out exactly what they'll require. 

nznyc12

Thank you! 

nznyc12

I will be going with her on the 10th for her MRI so I will ask many questions for sure. We went in today for her bloodwork, unfortunately it was in different hospital so I couldn't ask the questions but I've been preparing my list. Thank you all again so much and I've been talking to my mom about a lot of what I have researched so far and all the kind words from you guys here and she seems a lot better today, emotionally, than she was yesterday. Thank you.

sweatyspice

I'm very, very confused because you're talking about DCIS while at the same time your signature line says there was cancer found in your mother's lymph node.  If it's true that her lymph nodes were involved, I doubt she has DCIS (ductal carcinoma in situ) and instead has IDC (invasive ductal carcinoma)  - and somehow there was confusion with the abbreviations.

Are you certain there was lymph node involvement?  Were any of your mom's lymph nodes removed and tested during surgery? 

I'm also not certain if the surgery your mom had was a biopsy (intended to investigate) or a lumpectomy (intended to be definitive, final surgery).  If it was a biopsy, she probably still has to undergo lumpectomy surgery.

Do you have your mother's pathology report, does SHE have it?  In my opinion, the first thing you need to do is figure out whether you're really dealing with DCIS (noninvasive cancer) or IDC (invasive cancer).

I'm also trying to figure out the cast of characters here.  Unfortunately, a breast cancer diagnosis usually means a team of doctors is going to be involved. 

BS - breast surgeon - cuts out the problem

RO - radiation oncologist (they do radiation therapy) - zaps the problem 

Radiologist - they interpret mammograms, ultrasounds, MRIs, etc. - is there a problem?

Pathologist - they interpret tissue samples (usually removed during surgery)  - if there is a problem, what sort of problem is it?

MO - medical oncologist (they do hormonal therapies [like tamoxifen & arimidex] and chemo) - slow down the problem through chemistry

I'm not sure who's involved now, it seems like you're talking about a breast surgeon, a radiologist and a pathologist.  Patients almost never get to speak to pathologists, and get to speak to radiologists only rarely....so when you talk about the Dr who did her evaluation, I really don't know what kind of doctor you're referring to.

If there was nodal involvement and you're really dealing with IDC (or another variety of invasive cancer), depending on the specific pathology (the characteristics of her cancer cells), she might take an oncotype test to help determine whether chemo would be worthwhile.  If she has DCIS, the disease is not advanced enough to warrant chemo. 

If her cancer cells were reactive to Estrogen or Progesterone (this should have been tested and should be in the pathology report), it will likely be recommended that she take an anti-hormone drug.  The Estrogen and/or Progesterone are the cancer's food source, and we want to starve the cancer.

The pathologist will also have checked to be sure that all the cancer was removed during the surgery.  They look at how far the last cancer cell is to the edge of the removed tissue....that distance is called a margin.  The larger the margin, the better. 

Whether radiation is recommended depends on they specific type of cancer, how aggressive it is (grade 1 is least, 2 is middle, 3 is worst), how large it was, whether there's only one spot or if there's more than one (multicentric, multifocal), her age, and how large the surgical margins were.

Radiation is designed to kill any stray cancer cells which may be left in the breast, undetected.  It treats the breast and only the breast. 

Hormonal drugs and chemo treat the entire body. 

Apparently there's a new test (mentioned on the board here: http://community.breastcancer.org/forum/68/topic/779146 ) which may help determine whether radiation would be helpful in specific DCIS patients. 

"Standard" radiation is 5 weeks, then an additional week of "boost."  Some women can do a 3 week protocol (I think this is called "Canadian fraction") where you get the same dose overall -but you get a higher dose every day than someone on the 5 week course.  There are some other kinds of radiation (brachytherapy - they implant radioactive material) etc - but it seems premature right now to get into a full discussion of every possible radiation type.

The side effects are different for everyone, and they say they can't predict who has what side effect.  The most common are that the radiated breast will swell (usually only a little), it will get tender over the course of treatment, it will get sunburned over the course of treatment, some people get sunburned enough to have skin issues (the most common place for that is the "inframmary fold" - the crease under the breast), some people feel more and more tired as the treatment goes on. You're still cooking for a week or two even after you finish treatment and that's when any side effects will be at their worst.  Healing usually happens fairly quckly after that.  They'll recommend that you apply moisturizer after each treatment to help reduce the skin side effects. Apply AFTER the treatment, not before.  Applying before can increase the intensity of the radiation somehow, and NOT in a good way.  That's all I can think of for now, and those are the most common side effects.  The other stuff can be discussed in a few weeks.

Oh, some places do rads with you lying on your stomach (newer idea) and some with you lying on your back (older & more standard idea).  I had mine while lying on my stomach, and Im fine with that.  The idea is to minimize scatter into lungs (& heart, if you're radiating the left side).

There's a ton to learn and it's a steep learning curve, but you'll get there.

Your screenname makes me think that you're in NYC.  If that's true, there's an organization called SHARE that might be a really good resource for you (http://www.sharecancersupport.org/).  Their helpline for breast cancer is 212 382 2111, their office is in Times Square.  They have lots of different support groups, and if your mother truly does have DCIS, they're the only place I've ever found which has a specific support group for women diagnosed with DCIS - because our situation and treatment is different from women with invasive cancer.   If it turns out that your mom does have invasive cancer, there are support groups (etc) for that, too.   There are support groups in (I think) all of the boroughs, but the DCIS specific one is at the Times Sq location.  You should be able to get all the info you need from their website, but I also have their calendar on my refrigerator.  Gilda's Club can also be a great resource, they're in the West Village.

I'm happy to help with any NYC-based questions you have (dr's, hospitals, support groups, etc)

You say that she's traveling from hospital to hospital to get care, if you are in NYC, is she willigng to consider changing hospitals - because there are several NCI designated cancer center hospitals where everything happens under one roof, and it's easier to get the files to the Drs.  Some people like that, some people prefer the a la carte approach.

You might also consider getting second opinions on all the important decisions (surgical, radiation, drug).  It's more doctors and annoyance, but it helps make the overall picture and your possible choices clearer, helps your questions get answered, and can generally make you feel more confident about your decisions. 

What else did you ask in your post - what's the next step - if the pathology report says there were good surgical margins, then the cancer will be considered to have been surgically removed.  If the report says the margins were not so good, she'll probably need more surgery before anything else.

You mention talking to your mother's Dr. when she goes in for the MRI.  I'm not sure you'll see the Dr at all that day, you'll probably just see the MRI nurses and techs, and maybe the radiologist who will interpret the MRI results - but the radiologist is not the Dr who will be coordinating your mother's care and is not really qualified to answer the questions you'll be asking.

You need to talk to her breast surgeon, who will probably refer her to a radiation oncologist (that's who you talk to about radiation) and a medical oncologist (who you talk to about any drugs which may be recommended).

The whole thing is an enormous pain in the ass, in addition to being crap for so many other reasons.