Emotional side of DCIS/mastectomy

Gardengirl, what a beautifully written, descriptive post about your feelings.

You echo the sentiments of so many, who have gone before you. It's really just the fear of the unknown that takes over.

If it is any help, I don't believe it is ever as bad as we think it will be. I was so surprised at the way I felt when the surgery was over, and I know that so many others here will say the same. Such overwhelming relief that this part was now in the past, and so it goes with each part of the process. Feeling that there is more control makes so much difference. 

I have to say, don't beat yourself up about the chocolate. You have so much to deal with right now that weight loss can be a project for the future when you are feeling so much better, that you'll actually enjoy it! 

Be gentle with yourself, accept the love from those around you, and let us know how you are doing.

We'll be with you every step of the way.

You are so welcome Gardengirl!

It won't be long till you are giving advice and comfort to the new ones who come here.

I think most of us are stubborn and tough, so it is hard to accept that we need help, but as you say, these are qualities that we need to get through this.

(((((((((Hugs))))))))))))

Gardengirl...you are so very welcome.  I'm glad that my words had some meaning for you.  I agree with Ariom.  I think my fear of the unknown was much worse than the reality of the recovery.  I won't diminish the pain and discomfort.  But, for me....it was kind of like childbirth.  I just don't remember the worst of it now that I am nearly 2 yrs. out.  Honestly, I was more worried about how my cancer would affect my husband and son than I was about the pain and the fear of it being something more.  The hardest moment for me was telling my son.  He was not a kid.  He was grown, but newly engaged and I just hated to have him worry about me.  He is our only child and so we are close.  I know it was much harder on him than he ever let on.  I down played my diagnosis.  It was easy to do with it only being DCIS.  But, he is a smart young man and I am sure he was googeling like crazy.  

Anyway...I'm glad that you are getting some comfort from us and like Ariom said, maybe someday you will be the one who is passing on words of encouragement and hope.

Hi Ladies, just wanted to share my experience.

I have found the biggest emotional part of DCIS and Bilat mast was accepting the new implants. My doc did not inform me of the degree if swelling and distortion post op, and that it would take a few months for breasts to take shape. I became depressed and emotional, I felt ungrateful for not liking my new look. Some friends don't quite get the ongoing emotional impact of a forever changed body (especially if your not happy with new look). I feel I can't expresses my anxious feelings as people seem to think "your lucky, you don't have to have chemo, be happy n move on".

Having DCIS/mast means I don't have to fight for my life. Thank God! But it is not to minimise the massive emotional impact of having yours breast amputated, and accepting the new reality.

Feel a bit lonely at times as don't want to whinge to anyone. I have allergan 410 MX implants, v v firm, no jiggle, bit flat out front, still trying my best to love/like them. I keep telling myself, in a couple of years I won't even be bothered by them.

V

Thx shellshine, it is nice to be understood. I had one breast removed prophactically. After an MRI they found another lesion that was undetected on mamo. Didn't make me feel safe about annual mamos on an at risk healthy breast.

Doc agreed, he thought they would come out further. If i feel strongly, I can have a revision to help stretch muscle. Would like to have the full benefit of the implant dimentions if I have to have them indefinitely.



I do wish my doc had prepared me better as it would have decreased much of my anxiety. I seriously thought I was going to live with the chest of a female Russian wrestler!

I also felt I couldn't talk freely to ladies with invasive cancer or to the breast care nurse. They talked more about chemo issues etc. My focus fell to cosmetic and restoring body image, I didn't want to sound shallow!

I think reality is still catching up with me.

I like most of us, couldn't wait to get rid of the TEs and was so excited about the implants, and naively thought I would wake with nice round soft boozies.

But ur right, far better than cancer boobs. It is a bonus to go with a bra at times and to have a neater top half in clothes.

V, sorry for the angst this is. I was chatting with someone the other day and we wished we fully understood the reconstruction process beforehand. When we get diagnosed we just want this thing out! We hear mastectomy, tissue expanded and implants and thing ok we can do this and be happy ever after after the exchange surgery. Well i am hearing more folks talk about revisions after the exchange than expected. I had a single mx and haven't found many that have. my exchange and reduction/lift are in mid May and of course I am worried how the PS will really get symmetry! Will i need yet more surgery After?

Another thing I didn't expect was others treating this exchange surgery like it is so minimal! This is major surgery Again!

Of course ever the optimist i am, each day will be better and enjoy every day. Stupid cancer is also my new excuse for everything. Can't lose wright, can't exercise to lose the weight, and any other little thing I can blame on it :-)

I had a tram flap for my DCIS on both breast now I look at myself and don't feel attractive as I did before. I have lost weight and from the outside I look fine. But with my clothes off. Idk I just don't like what I see. I too don't feel like a BC survivor. I felt really bad when I had my breast reduction as if my life was being sucked out of me. Then I find out I had breast cancer and the doctor first told me it was stage 3 then I find out its DCIS I sometimes wonder if I didn't do anything if I would be ok. I shy away from sex with my husband and my body to me is an issue. He says he loves me and that the scars I have are part of me and a reminder that I was strong enough to do what's best for me in the long run. I admire him so much butnow my breast are flat and I want to get them plummet again with the revision of the breast. I just don't feel like a survivor even though I had a long family history of breast cancer in my family. I'm alive.

Hello Bettylovestrees! Welcome!

So sorry you had to join us, but very glad you found us.

Please don't stress about saying the wrong thing. Everyone is very supportive here, and we know, and understand what you are feeling.

This is the place to vent and tell others who have been there, just how we feel, good or bad.

I felt the same way you did, "get it off!" I don't have any time for the controversy over what DCIS is. Mine was Intermediate, and High Grade, so I am assuming it wasn't going to go into reverse any time soon. If someone else chooses to "wait and see", that is their choice.

I chose a Mx too, and SNB, over lumpectomy and rads. I was very fortunate that my final pathology was the same as my origional biopsy, just a bit larger.

I'll look forward to your posts, if you don't mind me asking, did you reconstruct?  

Hello Ariom, thank you for welcoming me...I feel at ease already. I have not had a reconstruction and I am not really sure I will get one anytime soon. My reason for this being that I have read a few comments from ladies that had a really hard time with pain after reconstruction and they just didn't seem happy with the outcome. I did however ask my SB if she would consider removing my other breast and she said yes. I had on many occasions voiced my aggravation about feeling out of balance with just one breast especially since I'm a double dd cup. In the end I chickened out about the second operation.

 I just cannot imagine that a prothetic will be all that comfortable...afcourse I could totally be wrong. At this point in time I'm just wearing a padded bra but it limits what I wear as it just doesn't look right and it rides up . I'm hoping that if I hang around here for long enough I might just be able to get a lot more constructive information and then I can make a decision from there.

  It would be so nice to feel a bit more balanced.

So pleased you feel comfortable here bettylovestrees!

I am a Uni too, but although it is early days for me, my surgery was at Christmas, I have no problem with having the other "D" cup. I really don't have any desire to "lose" the other side. In saying that, I guess that could change over time.

My Mother had a Mx in '94, so i was used to seeing her without reconstruction, she paved the way for me. I checked out many photos and especially Breastfree.org, which was started by one of our members, and am very comfortable with myself.

I too, had heard so many negative stories from others who had reconstructed, and had seen some terrible shots of botched jobs, that scared me.

I have become very comfortable with my prosthetics, I have several, and like them all.  I couldn't wait to get fitted for a prosthesis and good bras. Some of my "Foobs" are full silicone, and others are weighted softer ones, I even have microbead hand made ones that I wear with an Ahh Bra. I also really like to wear a fitted cami or tank. I have found some shapewear tanks that are quite firm, that hold the other side, which I have often described as like having a "puppy up my shirt!" The firmness of the tank feels good, and I am happy to go without a "Foob" when I wear this.

There are other threads here that are for either Uni's like us, or for others who have had Bmx, and no recon.

Let me know if I can help with any info on Prosthesis, I have been madly researching since my surgery! LOL

Ariom,

          my bc nurse told me about a place where i can go and get fitted for my prosthesis. I have to say that I am leaning towards getting fitted for one soon...I just have to take the leap and travel the long distance to the specialist shop. You have warmed me up considerable to the idea. Thanks again.

Dear ChrissyCA,

                         I just need to tell you how sorry I am that I posted here without even considering your feelings. You have every right to feel the way you do about your diagnosis. We are all individuals after all. To be totally honest, I would love to feel the way you do about my DCIS....to believe that it is not cancer. I mean if I live to be 90 which is possible for any of us,  I'm going to look back and wish I hadn't struggled so damn much ...worrying about cancer 24/7. Your outlook seems a healthy one to me because you can still be health conscious enough to get your mammos regularly and be aware of your breast health without the tormenting fear of cancer. You deserve as much support as everyone else here.

Don't know where to post this so here goes.  I just found this forum and it has helped to read of all your experiences.  I am newly diagnosed DCIS, comedo type- still in shock.  When my BS called to tell me that I had cancer, he told me that it was good news.  It doesn't feel like good news to me.  I have feared this all my adult life.  Mom dx at age 46, died at 51(she was adopted, so i don't know my family history).  Have been getting yearly mammograms since age 28.  Now 60 years old, thought I had dodged the bullet, but here it is.  Everything is moving so fast.  My emotions are all over the place- fear, anger, devastation, worry about bad outcomes, worry about finances, worry about daughter and granddaughters, and much more.  Yet several medical personel have told me I am lucky or that my diagnosis is good news.  The nurse who was getting me ready for needle localization (which I very obviously was distressed by) prior to my surgery said in a very peppy tone of voice, "You're not nervous are you?"  I wanted to beat her in the face.  Instead i just evenly said, "STOP TALKING."  Then she mercifully shut her mouth.  I am not a support group type of person and will not be going to sit in a room full of folding chairs, but somehow I feel safe here.  I was told not to worry because i only had a 10% chance of it being cancer.  What are the odds, right?  I was clinging to that and it all went to hell,  After lumpectomy had an MRI which showed enlarged node on that side.  Had needle biopsy on that last Wednesday, waiting on results.  If there's something there, i know that's a game changer.  Tomorrow I see radiology oncologist.  Monday scheduled for genetic testing.  Current plan is another lumpectomy next month because margins were not clear and SAVI radiation shortly thereafter.  I do not want to take tamoxiten.  Had PMS for many years and then menopause from hell,  finally got through all that and don't want to go back.  I'm ER+ /PR+, so i know that discussion is going to come up.  Mostly I am just totally stressed out.  All this has been going on since early March when i went in for a yearly screening mammogram and got bad news. Got my diagnosis in April a week before the anniversary of the death of one of my children.  Have spent the last five years 24/7 caring for a family member with Alzheimer's, so dear to me and she passed away one year ago.  I was just beginning to get to a place where i could relax a little and start enjoying myself and now this.  I find myself daydreaming about packing a suitcase and just driving away from the situation, but i know this is not going to go away.  Even though this is BY FAR not the worst thing that has happened to me, IT REALLY SUCKS!! I'm scared and mad.  Thanks for listening.  I feel better just getting some of this out.

dymphna-I too have been following posts in this forum yet never posted here.  I have had those same emotions and feelings through out this journey.  I was dx in Dec 2012 and then in Feb had double lumpectomy.  Through all that time it was a rollercoaster.  The "why me" haven't I had enough to deal with kept ringing in my mind.  I too have many family issues biggest is the care of DH who had a stroke 7 yrs ago and is in renal failure.  I do his home hemodialysis 5 days a week.  I support the family of 4 teens/20s as well full-time as a nurse.  This dx pushed me over the edge!  Besides the fact no one could decide if the cancer was IDC or DCIS.  Pathology reports conflicted between the biopsy and the lumpectomy and even again after bmx in March.  The moral here is to take each day at a time and try try try not to think ahead too much, although we all do.  It is hard and this site is so helpful and safe to come to for advise, moaning, groaning and celebrations...You are in the anxiety phase, once a treatment plan is decided you will be more impowered to move on.  I really feel for where you are at as we all have been there.  Even when it moves quickly it can't be with any less anxiety, but the longer it drags on it drags you down with it, so hang in there. Here are some vitual (((HUGS!!!)) 

dymphna...I'm so sorry that you have had to join our little support group.  You are right.  This is a safe place to learn, to scream, to cry, to support others when you are ready and to just feel connected to other women who have walked a similar path.  It sounds like you have had a lot on your plate and now this....

Right now you are in the whirlwind stage of diagnosis, doctors' visits, doctor's groping, etc.......  Most of us find this to be the hardest time emotionally.  So many questions and fears.  For me, and for countless other's who post here, once you have a plan in place and know what is coming next, you can start to do what you need to do prepare.  I found I felt more in control and calmer when I reached that point.

Probably the best advice I can give you now is to try not to get ahead of yourself.  Stay away from Dr. Google.  This is a good site to get information...not only from the discussion boards but from the educational articles on this site.  You might want to check out some of Beesie's posts about DCIS. She is a wealth of information and her posts are so very helpful and can help you think through your options.  Make sure you have someone with you when you visit with the various doctors to ask questions, take notes etc.  I also used a small tape recorder to record my visits so that I could go back and listen from home.  I was amazed at the things that I missed at the face to face visits.   One of the things about a DCIS dx. is that you have time to really research and make a decision that you are comfortable with.  I was dx. at the end of April and I did not have my UMX until the middle of June.  

Try to keep busy during this time.  Do something that brings you joy....gardening, crafts, music, grandkids......and when your heart starts to race and you feel like your stomach is up in your throat, close your eyes and take some long, deep, slow breathes.  Our breath can pull up back into the moment.  And right now, it is hard, but important, to stay in the moment and not allow your mind to tumble out of control toward the what ifs.  Someone on this site told me that if I allowed my mind to imagine the worst, that IF the worst occurred, I would have to live through it twice.  

Please know that I am sending warm hugs and peaceful, calming energy your way as I write this.  You will get through this.  One moment, one hour, one day at a time.

Take care.