DCIS - dealing with emotions

anitav · February 2011

I am new to this group and so grateful to have found an outlet! I was diagnosed with DCIS on the day before Thanksgiving and had a lumpectomy on Jan 4th. I just completed the first week of radiation. I feel pretty good, except for the fact that I feel like an emotional wreck today. I have had wonderful doctors and the radiation techs are great. My family - especially husband - have been so supportive. So, what's the problem? I was thinking about going to a support group, but I feel like most of the women there have gone thru chemo and possibly had a mastectomy, so I really don't deserve to be there. I know it's irrational and if a girlfriend told me the same thing I'm saying now, I'd tell her she was crazy. But why can't I treat myself the same way?

When I was first diagnosed, when I would tell someone what was going on, I always felt compelled to say that "they caught it early, so it's really fine, it's not that serious," etc etc. I guess because so many people took it so hard (one of my friends was crying when I told her and I spent a haf hour consoling her) I spent a lot of energy downplaying my diagnosis.

Another reason is that I have an acquaintance who has been fighting colon cancer (that spread to her liver) and has been undergoing chemo for the past three years. I feel like this is so minimal compared to what she is going through. I guess this is all so surreal. i alsmost feel like I'm faking it, if that makes any sense.

So, I'm sorry for the long-winded post, but I'm just wondering, has anyone else felt this way?

Beesie · February 2011

How you are feeling is so normal. DCIS is a good diagnosis. It's not life-threatening. That's what you've been telling everyone else so that they calm them down. And it's true. But there's one other thing that's true. You've been diagnosed with breast cancer. No matter that it's a "good" diagnosis, it's cancer and it's scary and it plays with your emotions.

My situation was similar to yours in that I downplayed my diagnosis with everyone that I told. And in fact I told very few people that I was diagnosed because I didn't want people freaking out on me or looking at me with sad eyes. I wanted to be treated normally and thought of normally. But how I dealt with my diagnosis publicly didn't mean that I didn't feel it privately. So I gave myself permission to sometimes feel like crap. There were days when I was an emotional wreck, and that was okay. I knew that by allowing myself to feel that way, the next day, I'd feel better. Personally I think that burying feelings is only going to make those feelings more explosive by the time they finally are let out, and at some point they will have to be let out. Better to feel what you feel and then move on. So don't worry about feeling sad or upset or however you feel. You've been diagnosed with breast cancer. Even if it's a good breast cancer, it's still stinks and you're allowed to be scared and angry and upset and frustrated and ......

nmgal · February 2011

I too was recently diagnosed! Thanks for the input. Can you tell me what you decided to do in your situation. I am also feeling like anita

agada · February 2011

Dealing with emotions is a normal thing. Go ahead and at least try a survivors group as you are a survior yourself. There are different people out there with different stages of cancer. Who knows, you may find someone like yourself there and have someone else to talk to. You don't have to go back to the group if you dont want to.

Agada

River_Rat · February 2011

Some people like support groups, some don't. If you don't want to deal with a group, or try it but don't like it, but would like some support you might try the "Reach to Recovery" program. I found "my volunteer" to be very helpful in getting through the early, scary days. Here's a link:

http://www.cancer.org/Treatment/SupportProgramsServices/reach-to-recovery

KindOfScared · February 2011

I hear you. Lately I have been telling people I am more concerned with how I am going to deal with my emotions more so than whatever procedures I end up having done. I was told on Valentines Day that I have DCIS in my left breast. Will have an ultrasound this week and start BRAC test. After results are in I will have either lumpectomy and radiation or bilateral with reconstruction and also ovary removal. So, a bit anxious still with not yet knowing the plan of attack. I have everyone saying it is ok and good to "let it out" and I have also given myself permission to do so. It is ok for me to make it about me right now. It is ok to make it about you right now. We need to heal physically and emotionally. There is always someone in a different situation. Try to not compare. Just heal yourself and then perhaps you can help others to heal. Good luck!!

anitav · February 2011

I can't tell you how much it means to read all of your responses. Thank you. I already feel better. It probably also helped that I unloaded on my husband last night after the kids went to bed. Smile I realize that I just need to treat myself as well as I treat others. I'm normally the one taking care of others, so I just need to learn to accept help once in awhile. I received a goft card for a massage from my colleagues and I guess it's time to use it!

Thank you all for your support!

anitav · February 2011

Kindof Scared - I'm so glad you found this group! I wish I had been here earlier. Thank you for your advice and kind words. Please know that there are people here who are rooting for YOU and wishing you well. Sending you a hug from Chicago!

Barbie7 · February 2011

I agree whole heartedly with the others, what you are feeling is normal. Many of us have been in your shoes, and by the posts here, many are walking right beside you.

I too downplayed the diagnosis, and found myself consoling those that I told about my diagnosis. I think I was trying to convice myself too, that all would be ok.

Three years later, I wish I had been a little more open with my fears and my emotions. Some days I still struggle, but like Beesie and the others, I try to allow myself the down days. I'm glad you opened up to your husband, and that you recognize that it is time to care of you first.

Like the flight attendants say, put your mask on before assisting children or others around you. Now is the time to take care of both your physical and emotional needs. All else will follow.

Now, about support groups. I found one that I absolutely love. We were all signed up for a stress management class (all breast cancer patients/survivors). The class went for 10 weeks. That was close to THREE years ago, and we still meet weekly at a coffee shop we call "the clubhouse". Some live out of town and are only able to come a few times a year, but we keep in touch by email too. Once a year we do a three day retreat at a spa, and really get into some issues surrounding our cancer and treatment. It is wonderful. We have even supported each other through the loss (due to cancer) of two of our members. I know that support groups are not for everyone, and quite honestly, I didn't think I'd make it past the second meeting, but something inside me needed the time with others who understood. I too had a diagnosis of High Grade DCIS, and I didn't have chemo. Some in the group that have had chemo, others have not. We have never discussed the staging of our diagnoses. Like others have said, you can give it a try, and if you don't find it useful, you can choose not to return.

I don't know if you have this resource in your area, but we have a Gilda's Club here and there are some really wonderful resources there.

I wish you well. Barbie

helenap · February 2011

They can cut the cancer out of your body but it remains in your heart and in your mind.. It takes time. I have to reassure myself everyday that I am not going to die. I think mine was more related to the way the doctor told me. very much like the commercial.... where the woman said she woke up and the doctor said you have cancer and walked out of the room.. but 6 months later and a clean check up.. I still find the emotional side much harder than the physical one.

so give yourself a break.. cancer is a scarey word

anitav · February 2011

Thanks again for all the wonderful, supportive responses. I have to say that it has gotten better in the last few days. The venting helped tremendously!

1Athena1 · February 2011

anitva,

I did not have DCIS (actually, I had some, but as Beesie will tell you, that would not be my dx...) so I shouldn't really post here.

But I do want to say that suffering and a person's ability to cope is so relative! There is no absolute truth on the question of "what is a big deal" and what is not. So DCIS isn't stage IV. That doesn't make it good news, a welcome piece of information or something to brush off. It doesn't make it not worthy of crying or suffering or worrying over.

Never feel guilty. There is nothing to say that we have to suffer in accordance with a set of rules. It is one reason why I so deplore the over-emphasis on segregation by stage on this board.

We all come here as we are, with our past, our sufferings, hopes, triumphs, dreams, successes and disasters. Breast cancer does not strike in a void. It strikes at all of those experiences and we react based on how far we are beaten down by previous adversity or buoyed by self-confidence. No one can tell anyone, "well, given your stage, you have xxx right to suffer for xxx time."

Maybe the extremes are easy to generalize about, like stage IV being awful or a false positive being a relief. Other than that, never apologize for suffering.

CarylC · February 2011

Anita - I was so glad to read this! I kind of feel the same way. I am have a bi lateral mastectomy but without radiation or chemo, was feeling like this wasn't "real" cancer and I really didn't have a reason to feel sorry for myself or be sad. It is really nice to read that someone else had sort of the same types of feelings.

lbergara · February 2011

Oh my gosh Anita, I'm going thru the exact same thing! I did join a cancer survivor group and like you, everyone there is going thru soooooo much more than I am, that I too feel like I don't belong there. I was diagnosed with DCIS stage 0. Had a mastectomy and no chemo or radiation needed. I should be happy right? Well, I'm not! I'm sad and feel sorry for myself. When I'm asked how I'm doing, I say I'm great! I've down-played my diagnosis and prognosis so much, even my husband believes it was 'no big deal'!

Trying to stay positive though. I know God has a plan. I pray He show me how He wants to use me after experiencing what I've gone thru. I pray He shows you too.

anitav · February 2011

CarylC and lbergara - I hope it helps to know you're not alone. I've finally given myself permission to just BE. Posting the original message helped. Talking to my husband and telling him how I really felt helped. I also dragged myself out last week and went to a lecture with colleagues and had coffee afterwards. We talked for 2 hours about our work and everything BUT cancer. It was such a lovely escape!

So, I guess my message is that it can get better. Like so many others have said in their posts, if you need to cry, go ahead and cry. And talk. People won't know how you feel unless you tell them.

Boy, I sure am better at giving advice than I am at taking it!

PS - If any of you were in Chicago, I'd bake you a cake! Hugs to you all. Thank you for sharing your advice, your concern, and your own pain. I'm so grateful for this forum!

SuebeeBC · February 2011

I think we all feel a lot like this! I totally downplayed the smx I just went through...maybe self-preservation or that I couldnt stand to see how people were reacting to the DCIS? The trouble is, you have to call it cancer because no one knows what DCIS is and as soon as they hear cancer, their faces change. I had one friend start sobbing before I got 1/2 way through my sentence.

Anyway, now that I am one month out of my smx and getting out again, Im still hearing (ad-nauseum) how strong and brave I am. Of course, these are the friends that I dont call when I am having another bad day!!! My new response to them is that "its a LOT harder than I have been projecting".....that tells them that I am still human but hanging in there.

Keep your close friends close and dont worry so much about the rest!

suefly · February 2011

Its amazing to read all your thoughts! I was feeling somewhat confused myself just last night. I was diagnosed with DCIS in November, with the plan being lumpectomy, radiation and tamox. Like many of you I down played this, mostly because my sister had breast cancer 7 years ago and passed away from mets 18 months after being diagnosed at 43, my age now. Soooo my family was freaking out. I found myself being the "strong" one. But then I had two surgeries and they kept finding more..no clear margin, so I had to have mx, and after several other reasons, decided on the BMX and surgeon wanted to do the sentinal node too. Anyways, I have had soo much support from family and coworkers. They have been bringing meals every night, have donated sick time to me since I used it all up, and sent lots of other stuff. I just feel guilty accepting things, like I dont deserve it. I thinks its because I dont need chemo or radiation now ect..so it doesnt seem s serious. And I am "lucky", because I'm getting new boobs. The pathology came back good...and the healthy breast had two types of pre-cancer so thank God I did both! But suddenly it hit me that I HAVE CANCER..I think I was just going through the motions..never cried ect.. Its very weird., and I have a feeling I may be emotionally mixed up for a while.

gymnut · March 2011

hi all,

i haven't been on in a while, got kind of overwhelmed for a bit there. but reading this thread & all the posts here have been very helpful once again, and i can totally relate, maybe almost more than i wish i could (if that makes sense).

it's always been much easier to focus on and take care of other people than myself, and this time has been no exception, though i'm working really hard to change that. i've definitely underplayed the situation, diagnosis & my fears & emotions a lot, & felt a lot of what many of you described, almost as though i wasn't "entitled" to feel ...whatever i was feeling. of course i know rationally, intellectually (as i'm sure all of you do) that that's unfair, unreasonable & absurd, but emotions are not by their nature rational, so there you have it...i also haven't cried ...yet, though i do feel like i need to. there's a kind of irony with me because i am an extremely empathic person, so much so that i half-jokingly describe myself as "pathologically empathic", yet have much more difficulty allowing myself to "feel" for or empathize with myself.

anyway, i'm glad to read that most of you seem to be giving or to havegiven yourselves permission for whatever you need & i hope that continues. i'm going to continue working on that & also continue talking about it and asking for support & for what i need, which is really hard & scary for me. i figure mabe that's part of my "lesson" in all of this. ultimately i do know i'm going to be okay.

i'm freaking out a bit right now (again) because my planning session for radiation has just been scheduled for this friday. that means rads may start on or around mar. 21st. so now it feels a bit more "real" again, which is terrifying. but the good news is that my surgery 6 weeks ago went well, found no more cancer, got clean margins etc. and while i'm not looking forward to this and yes it does suck (!) i am looking forward to being done! (plus my b-day is in may & it would be great to be done before then!)

thanks to everyone who posts & shares here & good luck to everyone still going through this. give yourself permission to feel or do or need or want .... pretty much whatever... which mostly means giving yourself permission to be human & to to be who you are.

take care, all.

Thora · March 2011

When I told people I had cancer they were so concerned and said how sorry they were. I then jumped in and said,".Oh my cancer was non invasive, a small turmor and no chemo or radiation. I guess I was trying to be strong but in my heart I was hurt.I downplayed it but felt really overwhelmed just being diagnosed.I've never said WHY ME?? I just feel why anyone?? I have good and bad days.It has been different for me.I talk to survivors but all were diagnosed years ago.Some 16 years and some 18 years.So being so new it made me feel good people are living that long but still I have a long road ahead of me. think about that. I did attend a seminar.I was the diagnosed just a few months before.Everyone there was diagnosed years ago.So it was at times emotional when they would say."How long have you had cancer??? Only a few months. I participated in a Relay for Life.Some people who knew me came up and asked"Who are you walking for?" I said Me.They had no idea I had cancer.They grabbed me and hugged me. Asked me how long ago was I diagnosed.I said not even a year.So it was hard but getting involved with these cancer survivors helped.I will be participating again this year and they asked me to model at a Style Show they are having this year. Get involved with a group and do those Relay for Life walks.They are fun.

Thora

Lovegolf · March 2011

Boy oh Boy do know how you all feel. I had bital MX 5/1/09. I have not really dealt with the emotional side of it all yet. It jumps up and I tell myslef I have won beat cancer so move on. Only it will still jump up. I think I cried a total of 3 minutes driving down the interstate one day with car top down when Melissa Etheridge song I Run for Hope came on. I say I had cancer for two weeks but who am I kidding i have the effects for life yes I hope a long life but it still there.Went back yesterday to see therapist. I think it hit me hard the first time on 5/1/10 so I figure I better get ready for 5/1/11. No I did not have chemo or radiation but I did have cancer and I am living with that all the time.

I am involved with local Komen and help in other ways with women who have this. The local walk is 4/16. Last year I went. The night before they have an event for survivors. It was amazing to be there with so many of us in one place.

sweatyspice · March 2011

If you live near NYC, we're lucky enough to have a support group just for DCIS (through a nonprofit named SHARE).

I can totally relate to all those emotions. Especially now - I find that a year out, I'm starting to really downplay it. People ask me how I'm doing with that 'concerned' tone of voice, and it's usually too cumbersone to explain what DCIS is, so I give a brief overview (shockingly I find myself using the word precancer now, which I wouldn't have before - I wonder if that's my own defense mechanism kicking in?) and I try to explain that I'm just as healthy as anyone else - except that I have a higher risk of developing breast cancer in the future than other people (much higher, in my particular case).

When I'd just finished rads, I spent a weekend with one of my closest friends at her country house. She had recently been diagnosed with lymphoma, her prognosis was good. She said that she'd rather have lymphoma than breast cancer, that if someone had to do surgery on her breasts she'd freak out. I understood her statement, but wasn't sure I'd want to trade for lymphoma because that seemed way too life threatening.

Now she's stage 4 after 3 different chemos (in one year) failed to stop the progression. She's now looking into clinical trials, otherwise it's palliative/hospice. All of this really makes me go to the "I escaped, I didn't really have cancer" place - even though my sexuality is forever altered and I can't find a bra that fits anymore. And I'm looking at that high recurrence risk....

I don't know what my point is. I guess I just needed to vent my thoughts on the subject.

anitav · March 2011

WOW. Again, thank you all for your honest & heartfelt responses. I just made it past the haf-way point for radiation and a friend asked me why I didn't celebrate. It never occured to me that it was a reason to celebrate, still being in the midst of it. Maybe when it's over. Which leads me to an idea I've had. I am a certified Life-Cycle Celebrant, which means I create ceremonies for people. My works is almost all wedding ceremonies, which I LOVE. But, I was thinking it might make seense to create a ceremony for women going thru breast cancer treatment. Maybe some sort of ritual before starting or for after treatment. Any ideas or suggestions would be most welcome.

Thank you again for this group. It is such a relief to have you all to turn to for advice & support.

abreastofnews · March 2011

Thank you for posting the same feelings I have. I go in AM for the radiation form to be made and the ct scan...start treatments next week, tamoxifen after radiation. I was diagnosed by abnormalities on a screening mammogram, just imagine what would have happened without mammography! I'd like to become a friend to some of you following this same path, it would really help me. Thanks and good night.

Lovegolf · March 2011

As a symbol I did burn a bra....still not sure why.

ginger_mea · March 2011

After reading Anitiv's post I had to sign up. This is EXACTLY how I feel, and I am happy to just read that I am not crazy. I almost don't know the right way to feel, so reading all that you wrote spoke to me so much! I am thankful now to be able to come on here and feel somewhat normal.

suefly · March 2011

I barley shed a tear through this all, but now it seems like I'll see the commercial for the Avon 3 day walk and start getting kind of weepy!

Raven2011 · March 2011

Saw this thread and had to join. Reading this made me feel so much better. Scheduled for a biopsy on 01/14/11, results came back that I had DCIS, Stage 0. My surgeon made it sound pretty simple that DCIS meant that I had abnormal cells, pre-cancerous, that had to be removed.

The lumpectomy was preformed on 03/09/11. Had an awful experience with the wire localization, but other than that I was doing pretty well, I was more worried about the radiation I would have to have afterward. When I went for the wire localization the radiologist made a comment that I had a lot of calcifications. When I went back to see my surgeon for the pathology report he said he did not get clear margins and would have to a lumpectomy again, then I mentioned the comment the radiologist said and asked if it was anything I had to worry about. He looked at the report and no mention was made of the calcifications. He said he would follow up with another radiologist and find out.

They called me back for an appointment the next day - I was told I needed a mastectomy. I was floored! That was the last thing I was expecting. I am trying to look at all my options, to make sure the mastectomy is really what is needed. I have been in tears all week and finding it difficult to function. I feel very angry that this was never mentioned on any of my mammograms reports and that I had to ask about it. It is some conciliation to know that others are going through the same thing. Thanks for your posts

XmasDx · March 2011

@Raven2011 - the same thing happened to me (well, I didn't have the lumpectomy, but originally that is what was scheduled for me before I had an MRI), but the possibility of needing MX was broken a little more gently over a longer period of time, so I had a little more chance to get used to the idea. It sounds like you are having the procedure "mandated" to you when you hadn't considered the possibility yet. That is hard.

Take time to explore your options, obtain your pathology reports and make sure you really understand what they see in there that makes this necessary. Get a 2nd opinion if you need to.

The good news for me was after my MX, I do not need radiation, I am not taking Tamoxifen, and I did the DIEP reconstruction procedure on my left breast (kept my right healthy breast) and I am happy with my results (4 weeks out today!). I went in to my MX surgery like you, with a DCIS diagnosis (6cm estimated from MRI) and came out one of the 10-15% of women where IDC is found in the breast tissue after it is removed.

I'm glad you have found this site, these women are very helpful, supportive, and knowledgeable.

wan2bwell · March 2011

my lumpectomy did not get margins near the nipple and rather than opt for a nipple reconstruction and face the real possibility of reoccurance in the healthy breast, I had the double 1/17. I believe that my decision was correct for me, but I enourage you to get a second opinion.

Doubtless you are nervous and in shock and scared-you cannot unring a bell, make sure you do what is right for you and know that you have a great bunch of ladies right here to support your decision-

dolphins0412 · March 2011

I am very happy I stumbled onto this post. I really haven't been sure how to feel. I was diagnosed on the 21st of this month with DCIS. I will go for my MRI on the 1st. At this point all I want to do is be alone with my family. I have worked for years never taking time off for myself. I decided to take off the last two weeks just to be with my family as we digest this new hurdle. My Breast Center nurse made me feel like such a loser yesterday. She pretty much told me that I should be working and not allowing myself to dwell on having cancer since this is no big deal.

It is a big deal to me. My mother is a cancer survivor and has been for the last 11 years. I am trying not to dwell on having cancer but on reconnecting with my family. I have worked 12 hours a day for the last year I feel so out of touch. I just want to be near them and enjoy them.

I do understand at this point it isn't a death sentence. We were very blessed to have caught it early. I also think that perhaps I should stop and smell the roses and enjoy my life a little while I have a chance. I have been going to my church and praying. That brings me peace.

I have been told that we all deal with this in different ways. I still cry and I just want to slow down. After talking with that nurse I feel so selfish and hurt. I am even questioning my choice to stay home until after my surgery. I really didn't want to deal with 20 students and radiation but I may go back to work for that and my 12 hour day. I am so confused at this point.

Thanks for letting me vent.

XmasDx · March 2011

Dolphins, welcome to the club no one wants to join...

YOU are dealing with this news the way YOU need to deal with it, and shame on that nurse for making you feel like "you're doing it wrong!" Yell

I kept working full-on the minute I returned from meeting with my oncologist for the first time, and sometimes in hindsight realize that although it kept me going thru a busy time at work and home (the holidays) I didn't always take the time I needed to digest what was happening to me and my family. If you need the time, you have the time available, and you want the time - then TAKE the time!

Your story reminds me of a friend who was diagnosed with Hodgkins lymphoma (as opposed to the generaly riskier non-Hodgkins) - while 7 months pregnant no less. A nurse told her she was lucky it was "just Hodgkins". My friend, ever blunt, ripped into that nurse "DO I STILL NEED RADIATION? DO I STILL NEED CHEMO? THERE IS NO KIND OF 'JUST' CANCER!"

It may be "just" DCIS but you are still facing not only the wake-up of your own body betraying you (at least that is how I felt), but also procedures, surgeries, probably radiation (if you chose lumpectomy for sure), hormonal therapies like Tamoxifen possibly, and possibly chemo if MRI/surgery turns up something unexpected. The possibility of mastectomy or bilateral mastectomy may be put on the table for you, depending what the MRI shows.

If that nurse thinks that it's a good idea for you to be teaching 20 students when you are most likely not in a mental place to do that well (I had several emotional crying breakdowns at the office in the months between my dx and my surgery), then I think she's wrong. It is your choice, and I think she was wrong to make you feel like you are being selfish. Everyone handles the news in their own way, there is no "right" way to feel. I'm sorry that happened to you.

My friend reported that nurse to the higher ups at the doctor's office and was assured she wouldn't be treated that way again! The nurse learned a new lesson of what NOT to say to cancer patients too!

DCIS - dealing with emotions

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