Topic: Guilty for "just DCIS?"

You are such a sweetie....and you are not unusual in how you feel.

When I was first dx with ILC, I sobbed and cried and couldn't sleep with fear....

then I had a plan.  I still sit here and "hope and pray" that my plan is the right one (as we all know, cancer is a crap shoot and who knows what will happen with any of us), but I said to my DH the other day that I felt guilty that "all" I had to do was lose my boobs and take tamoxifen when so many other gals require chemo or more....and take months and up to a year with this monster disease.

You see, there is always a gradation of pain and suffering.

My twin sister said the same thing...why me and not her.....sadly, we don't get to pick what and how much we get.

Consider yourself blessed and do NOT punish yourself mentally.

NONE of us here would elect to be here.

Dottie, Wally, and everyone who is going to chime in.  DCIS is cancer and we don't have to apologize for having the "good" cancer...which is what my BS called it.  But she did say it is cancer...just has not gone beyond the milk ducts.  So that's how I look at it.  Yes... we are lucky as it's not spread.  But we all live with the chance it might.  I've read so many threads about DCIS being cancer, pre-cancer...even cancer "lite" and my guess is that this will always be a question until the medical community can really decide where it fits. 

I had a rt. mast in November... pathology confirmed extensive DCIS...mutifocal, grade 3.  I also had a SNB which my BS explained could only be done when you still have a breast.  If it's removed and they find invasive...even a teeny tiny amount...they would have to go back in and take out a lot of lymph nodes.  I opted to have it checked before-hand ...only had one node taken and it was clear. Yep...I have a chance of getting lymphadema..but it is fairly remote. 

Now, I have to worry about cancer cropping up in my "good" breast. I found that once I got my positive diagnosis (no rads...no chemo, started reconstruction with few problems), it was then that I ended up bursting into tears...at work, at home, etc and for no reason.  My doc says it's kinda like post-partum syndrome so I've been on Effexor for awhile and it's really helped.  I have a mammo next month and am very scared...even though my chance of having DCIS or Invasive is low...it's still a lot higher now that I've been diagnosed with BC.

So...don't feel guilty about your feelings.  I think most of the girls here know it is not a contest. And yes, many have it much much worse and yes, I do appreciate that I am lucky.  But we are all trying to deal with this journey as best we can.  Hope you all are doing well.  Woops...sorry for being so long-winded, but we need to concentrate on getting better and feeling better and not justifying if we have a bad or good cancer.   Phyllis

My situation is very similar to Phyllis'.  I too had DCIS grade 3.  I had a  mastectomy,SNB, and several nodes removed.  Those were clear so I did not have to take chemo or rad.  I too went through the crying time.  I would cry for no reason at all.  My son was home from college and was teasing me about something and I was laughing and the next thing I knew I was crying.  He asked if he had hurt my feelings and I told him no, I just didn't know why I was crying.  I would cry over nothing at work, home, church, in town, or anywhere.  I have finally moved through that part.  I had my one year mammo a couple of weeks ago.  I have a fibroidnoma(??) in my good breast.  I think that is what they called it.  The radiologist says it needs to come out, but she doesn't think it is cancer.  So I am expecting a call from my surgeons office this week to set up an appointment.  I experienced that same anxiety before my mammo.  I was so anxious to hear good news and that I could go out and do what I want for another 6 months.  I was devastated.  Even though this is probably not cancer, it is another surgery to go through.  Not what I was looking for.   If this surgery happens it will be my 6th surgery in the last year and a half. I am not looking forward to this.  Thanks for letting me share.

We each have our own situation to deal with. I too feel thankful that I did not have to go through chemo or radiation.  I truly believe God was watching over me and can and will bring about good through this situation.

J

Hi Dottie....

What a well-written post.  I can certainly relate to your feelings, and I'm here to tell ya, they're completely normal!   Yes, DCIS is the "good cancer" as many call it, compared to other cancers.  But it's STILL CANCER, and it changes your life forever.  Us DCIS girls are put in a tough spot because there aren't many DCIS support groups around, and if you go to a breast cancer support group, chances are you'll find women with much more advanced cancer than us, and then YES, I would feel guilty!   But at the same time, we need to be supported as well, as we've been through A LOT, and can't just blow off our own diagnosis because someone else's was worse.   These boards have become my own support group.  And you've come to the right place for support!

I had a bilateral mastectomy with reconstruction, and have run into women who when I tell them that, compare it to a regular boob job!   That really infuriates me.   It's not the same thing!  Medically, it may be a similar procedure, but the emotional drain is nothing to be compared. 

It is certainly normal to feel "guilty" when someone else has it much worse.   That's really true of anything in life.   Before DCIS, I felt guilty for being healthy when someone else was diagnosed with something.    I try now to look at it as being extremely grateful that mine was caught so early.

I wasn't the brightest bulb - once I found out that it was DCIS in the biopsy it never crossed my mind that it might not turn out that way. When I got the final results of it's all DCIS it was like -- oh.

I was mad about having DCIS and having to have a mastectomy.  It seemed unfair - I was supposed to just have a lumpectomy. To this day I'm still angry that women with a supposed "non-cancer" have to have mastectomies.  

Still. I'm grateful that's all it was. My husband has a cancer that is not curable and has come back several times now so I don't need anybody to tell me how lucky I am.  Sometimes I even remember it myself. 

Dottie, thanks for starting this thread, I feel very much like you, and Barbie's comment sums it up for me. Always reassuring the others and myself that it isn't anything bad and it isn't life threathening. But when somebody treats it as something bad I must say that I am appreciative.I am in the middle of rads and my lovely sister in law has organized meals for me for next few weeks. She knows that the tx are intense, some others keep checking in, other women who have had BC have more concerns because of their understanding of tx.

I of course was relieved when I found out I only had dcis, strangely not as much as I thought I would be... I still have to do all the tx and there is the future which may bring more cancer... Our live are changed for ever the second we get the dx and that we can never reverse, time will probably help for many of us.

Rose, so sorry to hear about your husband, wishing you both strength to go through this.

Rose, you hit the nail on the head about being mad for having to have a mastectomy. That's exactly how I feel.

When I was diagnosed in Feb 2007, I was told I could have a lumpectomy because the tumor was small and that would be followed by rads. I wanted to save my breast and also have the least invasive surgery, so I chose this course of treatment.

Well, one of the unknowns in medicine is how someone will react to treatment. I finished rads last May and celebrated because I was done (with the exception of Tamox for 5 years). Unfortunately I never healed from rads and my tissue just kept getting worse. The only way to heal it was to remove the tissue so I had a right mast with ped tram flap recon on 4/2. I'm healing and every day gets a little better, but there's a part of me that is still angry I've been through over a year of treatment and surgeries (with still more to go) for "just DCIS."

Yes, I am thankful I did not have to endure chemo, but I don't think I will ever feel guilty for my DCIS diagnosis. It is cancer, it has stolen over a year of my life and the possibility of recurrance is always hanging around.

I understand what some of you are saying about not having it as bad as others, but like someone said earlier, it's not a contest and I think most who have had it worse are happy to hear of a sister who had an early diagnosis and minimal treatment.

Rose, prayers going out to you and your husband.

Hugs to you all as we go through this journey. Isn't it great that we can support each other through this site.

Yes, I agree with you all.  I realized soon after my DCIS dx that I should try to be tolerant of friends' responses to the news.  I came to this conclusion after becoming aware that I didn't even know how to think about DCIS myself.  If someone seemed upset about my dx, I found myself minimizing it and comforting them.  If someone took it lightly and talked about how lucky I was, I would find myself feeling quietly indignant.

Dottie--thanks for bringing up this subject.  I too am feeling the same way.  No, I do not cry.  Yes, I feel the need to comfort and down play this to everyone to not make them worry.  At night, when I am having "alone" time, I try to remind myself that I am thankful for having the the "good kind" of cancer, but it is still cancer.  You brought up valid points.  I am sure in time, we all come to deal with this in our own ways. 

Do you think we could all bond together and convince people NOT to tell us that "at least you get new boobs out of this"?  Don't people realize that this is not a way to get insurance to pay for a boob job but it is CANCER we are dealing with?  My skin crawls(and not from the radiation) whenever I hear this remark!

Ellie

Thank you so much Dottie - for starting this thread. I can relate so well to everyones posts that I could have written many of them.

When I was firtst told that I would have to have surgery in Feb, 2007, my immediate reaction was that the doctor was just being overly cautious. I told my dh and my sister and made it sound as though it was nothing. When my surgeon explained things in more detail, I did have a bit of a meltdown that night but from then until about a month after my last surgery (had lumpectomy which showed extensive DCIS, grades 2&3 so had a mastectomy with snb) I was upbeat and reassuring everyone. My emotions were contradictory and all over the place. I kept saying how lucky I was while at the same time I felt as though I was dreaming, I couldn't sleep and I couldn't talk to anyone (how I wish I had known about this forum then!). My support group only had one other woman with DCIS in it and she told me that she felt guilty and that she felt reticent to open up and say what she was feeling to the others who had more serious bc.

Some weeks after my mastectomy I went though a very scary time, worrying that they might have missed a microinvasion. This did pass and I don't really worry much about a recurrence any more. However, the mastectomy seemed to throw me into instant menopause with hot flushes, mood swings, lethargy, weight gain and low energy - and I'm not on Tamoxifen.

I am left with an ugly scar and lymphedema - which I was so sure that I wouldn't get - I only had 2 nodes removed and no radiation. Part of me feels guilty for complaining, the other half thinks I am silly to feel guilty! I am one mixed up woman!

Hugs to all of you dear women and thank you so much for letting me vent!

gb 

Hi Ladies,

I don't think that anyone should ever feel guilt. To me guilt is a useless emotion and a waste of energy. I know that it is hard but try and push guilt out of your life. I try as best as I can. None of us should ever feel guilty about having DCIS. It is still CANCER.

"At least you get new boobs out of this". I would like to tell all my friends that if they think the new boob job is great then they can change places with me anytime!!!!! I would gladly give up my seat on this crazy rollercoaster, and have my own boobs and nipples and sensation back again, and not have to worry about the future and reconstruction and more surgeries. So if anyone wants  my "new boobs" then they can have them. Just let me know.

Geebung,   Yes, I also have mood swings, lethary, weight gain,and low energy and also am not on Tamoxifen. I think that it is just part of the whole BC thing. I just cannot get my act together. My list of things to do keeps getting longer and I may have to go back to work soon. Don't know how I am going to add work again to my schedule.

I wish that none of us had this horrible disease.

Take Care,

Kerry

Hey Gurls, thank you, thank you, thank you.

I was dx with dcis in both breasts in March and was originally told that it would require a lumpectomy. My surgeon, however, recommended a bilat mastectomy which was a total shock to me. Since then I have been living in some weird twilight zone. The only person Ive told is my husband because I dont want to be a drama queen so I go to work every day, smile and laugh and listen to peoples troubles but inside I am numb. I dont cry or get sad or get angry (but I panic if Im around other people who are angry.) Its feels like such odd behavior so its been great to read these threads and realize that so many of you are experiencing the same emotions (or the lack thereof.)

Rose, I agree with you, its been hard to get my head round having to loose my breasts for something so microscopicly small.( My heart goes out to you and your husband.)

All your words are helping me stay strong. Thank you.

I had 6 months from diagnosis to my double mastectomy for DCIS.  I didn't cry through that whole time, read this board religiously, and felt I totally had my head wrapped around this thing.  After the surgery I was a basket case--cried every day for 3 weeks, and didn't know why.  It was strange.  Just remember that this is a major surgery that does a number on you physcially, not to mention what it does to your hormones.  Be gentle with yourself. 

I'm glad to find out there are some other annoyed DCIS ladies out there!

It wasn't any of our fault, I think the guilt thing needs to go. Better to be mad than sad.

I have my own spin on "just DCIS." I was diagnosed with IDC in March of 2007. I had a Mastectomy, followed by DD AC and Taxol. In January of this year I had TRAM flap surgery that failed. In March of this year I was diagnosed with DCIS. Last Tuesday I had my second Mastectomy. I saw my surgeon yesterday and was given part of my pathology report. This new primary Cancer was also fast growing and aggressive. Next Monday I see my Oncologist to go over my final pathology report. I am hoping and praying that I will not need chemo. "Just DCIS?" There's no such thing in my world. I've done chemo once and I do not want to do it again. Believe me. I don't feel guilty for having this...

Linda