Received DCIS Diagnosis - Comments Invited

Blair-

You are getting alot of information here, much of it will not apply to your wife because as other's have said, our situations are all different: age, location of malignancy, it's type, grade, size of breast, hormonal status - etc. Lumpectomy vs mastectomy? sentinal node biopsy? radiation and tamoxifen, we have all made very personal choices. I didn't share information with anyone other than my husband until I had a plan in place -eventhough I am usually a very sharing kind of person - too much usually, but not about this and mainly because my family and friends would have only been able to share their anxiety and panic - without any real information or advice applicable to my exact situation. Some family members and friends can be very stressful instead of helpful. With regards to telling your children. As you have said, you are regularly away from home due to your work, it is your wife, who is not ready to share with the children, who will have to cope with their fears and questions when you are away. 

At some point you asked about timing? you usually wait 4-6 weeks after lumpectomy before starting radiation to allow for healing and most doctors advise waiting til after radiation to start tamoxifen which is a generic drug and therefore not that expensive (another question you had). In your initial post you reviewed what you had learned so far about DCIS - you mentioned follow up with 6 month mammograms. There are other protocols which include MRIs (so every six month alternates an MRI with mammogram) and many women have had MRIs before their lumpectomy as MRIs are more sensitive than mammograms and might show up additional areas of concern which might sway your wife to consider mastectomy or might show nothing else which might make a lumpectomy a very viable choice. 

 You are a good man,

take care

Julei E

This beginning phase that you and your wife are in really is the hardest part mentally -- the scheduling of appointments and waiting for test results can really take a lot of a person, but truthfully, once all of the information about your wife's specific medical situation is understood, things will oddly become easier, because she'll be moving forward with a plan of attack. This board was such a help to me, as I am sure it will be for you ... and perhaps someday your wife, too.

As the previous poster wrote, the lumpectomy was not a difficult thing -- and for me, I also didn't find the rad treatments dififcult physically. But I'm only able to say that now that I'm nearly two years out from diagnosis, because one's life does change with such news and the emotional part is exhausting and scary. The physical was suprisingly OK and I pretty much look the same, just have a small scar that I consider a right of passage.

My original diagnosis was grade 2 dcis, no lump felt, just a suspicion when a cluster of micro-calcifications appeared on my annual routine mammogram in my 40s and confirmed with a stereo. biopsy. I had a lumpectomy (actually mine was termed a partial mastectomy but that's just terminology really) and received the surprising new that a micro-invasion was detected in the lumpectomy final pathology analysis.

Please reassure yourself and your wife that if she does have a micro-invasion as suspected, it may not alter her treatment from just having dcis. I did have a second surgery to check my lymphnodes -- termed a sentinel node biopsy (SNB) -- and because no further problem was uncovered, I moved right into rad. treatments. I was given the option to take or not take tamoxifen, and I have opted to not take it.

We told our children a similar story to the previous poster, and did limit the people outside of our family that we told.

Wishing you the very best. 

Blair, you seem to be getting some very good advice here. I didn't read every word of all the posts so please forgive me if I'm being redundant.

1) I think your wife stole my pathology report -- mine was very very similar. I was diagnosed in mid December so I'm just about 9 months ahead of you. Long enough to give some perspective but short enough to remember it all quite well.

2) Most cancer patients and/or their family members go through the stages of grief.  Grief is most closely associated with death, but it occurs with all sorts of loss or life disturbances. Sometimes we pass very quickly through the other stages and sometimes we go back and forth among a couple of them. Your wife is dealing with the depression stage, while you've moved on to the acceptance phase. Since most of us here are in Acceptance, our words are comforting to you, but we might not be so comforting to someone in Depression. And while I am slightly loathe to get into too much armchair psychology, the fact that you're in two different phases is probably upsetting to her.

3) The term "cancer" is, in a way, not unlike the term "Chinese language." Most non-Chinese believe that there are one or two versions of the Chinese language, but in fact "Chinese language" is an umbrella term that's used to describe a vast number of languages that are not mutually intelligible. Cancer is the same way -- it's an umbrella term used to describe a bunch of things that are related in some rather insignificant ways.

The reason that fact is important to understand is that some cancers are very life-threatening and some are hardly life threatening at all. Non-melanoma skin cancer, for example, is hardly life-threatening. DCIS, while more serious than non-melanoma skin cancers, is also not very life-threatening.

So, as I often say on the boards, your wife is Not On the Titanic. It's important to understand this and I think it makes considerable difference if one can wrap one's head around it. DCIS, even with a microinvasion, is a very treatable form of breast cancer, and one that very few women die from -- especially if they get the proper treatment within a reasonable period of time.

I'll continue this in a separate post. 

Hi Blair-

It's been 7 years since my DCIS was found from a mammogram. I had no family history and didn't feel any lumps but since it was found in 3 areas, I was told I needed a mastectomy. I remember the fear I felt at the time. I know what you and your wife are going thru right now.

Since my surgery, I have done lots or research and it is my opinion that DCIS is often overtreated. I know that my mindset is very different than most of the others on this board. I have come to believe that breast cancer inc is big business and that the conventional treatment has many downsides. Lymphdema and depression being some of the side effects. 

I know that when someone is told that they have breast cancer, it isn't information that one can easily put on a shelf. But I am able to reflect on what happened to me in a different frame of mind now than I had at the time that it was happening. While I believe I was given the standard treatment, I can honestly say that I wish I would have gone with alternative treatments. I am no longer a believer in conventional medicine but I used to be. It is a personal choice.

There is a book called "Overdiagnosed: Making People Sick in the Pursuit of Health" which you might want to read. You are a researcher and you might be interested in a different view point.

I wish you and your wife the best.

Hi Blair,



I want to add my 2cents, for what they are worth. I was diagnosed with grade 2 DCIS, cribiform with necrosis and ER/PR positive. My DH and I have one darling little boy who is 6 and just started the first grade. I was VERY sick with n unknown illness that caused me to have angioedema and anaphylaxis, which basically means my face would swell up so much it caused my throat to close. I was hospitalized a total of a month between Oct through Dec of last year. I had horrible breast pain that accompanied the swelling, and when I told the doctors, they just told me to get a mammogram when I was better. I never really got better, and was ultimately diagnosed April 14 of this year. Initially I had a lumpectomy and was going to go the usual route of radiation and tamoxifen, until my medical oncologist told me under no circumstances could I take it with the history of angioedema. So, for me, the only choice was surgical. I underwent bilateral mastectomy with immediate reonstrudtion Aug 2. I will also have a oopherectomy and hysterectomy in late October. I have to stress what the other ladies here have said, everyone's situation is different, so please keep that in mind. Some people think the course I took was extreme, but I needed the assurance my baby would not grow up without a mother. I also had melanoma when I was 17, which is rare, so I needed to reduce my risk a lot to make myself have a little peace of mind.



When your wife is ready, there are some amazing books written for children that explain what breast cancer is. I shared them with my son, and it made a big difference. I felt I had to tell I'm ASAP, because I had been so sick last year, and I wanted him to understand I wasnt going to be gone as long as I was then. I also wanted him to know I was going to be OK. I think that is the most important thing for kids-- they want to know their parent will be OK, and that they will be OK, too!



I'm so sorry you have to be on this board at all, it but you are an amazing man to do so. Some husbands can't deal with it and hide their heads in the sand when their wives are diagnosed. The good news is if it is indeed DCIS, it is the "best" type of breast cancer to have (at least that's what my breast surgeon told me!). Be well, and above all, take care of yourself. You know how when you are on a plane, they tell you to get your oxygen going before helping others? The same is true in the cancer game. The caretaker, you, have to take care of yourself so you can help her.



Hope that helps just a little!

BlairK,

Like your wife, I was 52 last spring when I was diagnosed with DCIS.  Our kids are adults, and the hardest part was having to tell them over the phone instead of in person.  I was able to work through all of my treatments.  The only days off were the 2 excisional biopsy (lumpectomy) days.  I did work 1/2 days during radiation but it was mostly due to the time of the appointment and my commute.  I left early every day for my treatment and it wasn't worth driving back to work, so I worked from home in the afternoons.  I was quite fortunate and didn't have any fatigue and relatively minor skin issues during radiation.  I started Tamoxifen on 8/28 and so far so good.  I've heard side effects may not come for a couple of weeks.

I did the same research you are doing for your wife.  I remember sitting at the computer and "googling" every term I didn't understand.  I felt it helped me before my appointment with the doctors to be able to have questions written down and prepared so I didn't forget to ask them.

My husband came with me to all of my early appointments.  He also came for my radiation set up and my first treatment and I told him I was really OK.  I felt bad because it took so much of his time.  The actual radiation procedure was less than 10 minutes, it look longer to get there every day.

It is wonderful that you are gathering this information while you are away so you will be able to understand what's going on and help your wife deal with this. 

 There is a lot of wonderful information on this board and many very supportive people.

Cindy 

BlairK

Even if your wife isn't ready to join the message board, she can view the topics and discussions.  I didn't join for several months either, but I still learned a lot. 

Cindy

Blair,

I am sorry you and your family have to go through this. No one wants cancer, but the earlier it's caught, the better the outcome.

I had DCIS, grade 3, with comedo necrosis, diagnosed in my left breast in 2008, and had a lumpectomy that December. I had worked in cancer centers for years, but it still came as a blow to my husband and me when I received the diagnosis. My breast surgeon felt strongly that there might be a microinvasion, so she did a sentinel node biopsy at the time of the lumpectomy. The good news after surgery was that the 2 nodes removed were negative--the bad news was that the margins were not clear. That meant I needed either a 2nd lumpectomy and radiation, or a mastectomy. After talking to my surgeon for a long time, and asking her what her intuition told her and what she would choose, I decided to have a unilateral mastectomy. She told me a second lumpectomy and radiation would likely leave me with a deformed breast.

As others may have said, a microinvasion changes the diagnosis from DCIS, which is stage 0, to another stage and possibly even another type of breast cancer.

I did tons of research, including on this site, and finally chose to go to New Orleans (Center for Reconstructive Breast Surgery) for both the mastectomy and immediate DIEP flap reconstruction. Though I did not have a microinvasion, another cluster of DCIS was found far from the original cluster. As you may know, that is called multifocal disease, and is best treated by a mastectomy. Some women in my position would choose a bilateral mastectomy, since a DIEP flap can only be done once.

Before going through this, I always thought if I had breast cancer, I would have a lumpectomy and radiation and be fine.  DCIS can sometimes call for mastectomy, though, and it's definitely NOT the end of the world. I am fine now, and I like my new breast and my lift on the other side. I take tamoxifen (the only drug really recommended through extensive studies for  DCIS, if that's what your wife's diagnosis turns out to be), and I have no real side effects. 

I would strongly recommend that your wife go to a comprehensive cancer center if there is one nearby.  Find a team of doctors she is very comfortable with, and ask every question that enters your or her head--take a list. She will start with a breast surgeon (research him or her!), then a radiation oncologist if she has radiation, and finally a medical oncologist, her doctor for life.If there is an oncology social worker there, she or he can help with many things, even helping you tell the children.

This site was a great comfort to me when I went through my ordeal, and it's where I learned about the surgeons in New Orleans, for which I am eternally grateful.  However, we writers are expressing our opinions and our experiences. There is no replacement for physicians you trust.

BlairK,

You said:

"Out of the multitude of questions, I also wondered if lifestyle plays a role in the development of breast cancer. My wife ate too much meat and for years I asked her to cut out meat and eat more fruits and vegetables. Does diet play a role in the development of breast cancer?" 

Maybe, but that isn't a very helpful question for a couple of reasons:

1.  She already has cancer, so knowing what did (or didn't) help develop it doesn't address the current situation.  And even asking someone w/ BC can be heard (by that someone) as "its your own fault."  It may not be what you intend, but it's often what is heard, and the emotional impact is hard to anticipate, so it may be best to avoid. 

2.  The current state of research suggests many statistical associations with breast cancer.  Various drugs, foods, environments, genetic predispositions, etc.  But you'll find women on these boards who did "everything" right, and still have cancer.  And they know women who did everything "wrong" who don't have it. (To use your specific, there are vegetarians & vegans w/ cancer!)   

3.  When someone asks a person w/ cancer if it was the "_________" (fill in the blank) that caused (or participated in causing) the cancer, it's often a way of saying "it's your fault you have BC" which isn't helpful to the person w/ cancer.  Assigning blame to the patient lets others "off the hook" emotionally, and sometimes helps people w/out cancer (who don't do--or have--or are exposed to "________") feel less at risk themselves.

But if you're looking for healthier things you can do now, the book "Anticancer, A New Way of Life" by David Servan-Schreiber, MD, PhD has been well reviewed & well received.  Ask your wife's medical oncologist (when she sees one) what he thinks of that program.  He was a doctor w/ brain cancer who lived well (I understand) nearly 20 years after diagnosis.  It's available from Amazon on Kindle (or a Kindle app for one of your other devices) if you want to read it while you're traveling (if you get it, make sure you get the newest edition--there seem to be several).  He died in July of 2011, and there is a posthumous volume "Not the Last Goodbye: On Life, Death, Healing, and Cancer" due out in late November.

HTH,

LisaAlissa 

LissaAlissa, I see great minds were thinking alike, at almost the same time!

Blair -- one other comment I forgot to make earlier. One of my issues early on, and one of the things that may be concerning your wife, was uneasiness about disfigurement. I had foot surgery about 5 months before my diagnosis, and the result was that my "great" toe on one foot is a little shorter than the one on the other foot. I've always thought my feet were very nicely shaped and am pretty vain about them. I was still mourning the length of the toe when I got my BC diagnosis.

Needless to say, the toe issue kinda went out of my mind.

However, I'm pleased to tell you, and anyone else who will listen, that I've had no disfigurement whatsoever. 8 months after surgery I still have a visible scar on the side of my breast, but the size and shape are so little changed as to be unnoticable. I'm sure that's not the case for every woman, but my point is that BC surgery isn't necessarily at all disfiguring.

Even for people who are bothered by having one big toe that's shorter than the other.