Emotional side of DCIS/mastectomy
Comments
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I've appreciated this thread. My sister in law and I have discussed this many times as we were diagnosed with dcis within a year of each and both chose bmx. We both work in oncology (she with adults and me with children). Our jobs have given us more information and perspective than anyone would want but both of us have noted how odd it is to incorporate cancer into our personal lives. There is a process of figuring out how this event fits in our lives and what it means to us. That meaning changes over time as we change. What it means for our future changes as well.
I do count myself lucky because I know what cancer can do. I am lucky because I was able to avoid chemo and radiation. Others might feel luckier to keep their breast and be able to monitor it closely. We all have different values and choices but the treatments are just as aversive no matter what type of breast cancer it is. No one wants to be in this club and I'm happy to share and educate others if it saves a life. However, breast cancer and a bmx happened to me but it's only a part of who I am. Above all else I am a mother, a wife, a daughter, and sister. I am lucky! -
Hello all,
I would like to thank everyone for sharing their experiences. I have been lurking on these boards since diagnosis and have learned so much. I have been able to make some very hard decisions based on information here.
I struggle with feeling like a cancer patient imposter. Thankful that rad/chemo was not necessary but am selective about what I share with others as I have had some rude and insensitive things said about DCIS not being serious.
Every time I fill in an insurance claim form or ANOTHER medical history, I wonder if the cancer police are going to show up and arrest me for fraud. Many in my support network just don't understand my anger or sadness ( which is still a daily struggle). So the next person who tells me that I had the " good kind of cancer" is going to be shown my still raw mastectomy scars and weirdly misshapen tissue expanded chest . And then I'm going to punch them in the nose! -
Hi all- I've also been a "lurker" on the board since I was diagnosed with diffuse DCIS on November 16. It was an "easy" decision to have a BMX plus reconstruction, which I did on Jan 7. (mom died of DC when i was 8, lost best friend to melanoma 8 years ago) I have had a pretty easy recovery and I'm having my exchange surgery March 19. And no further treatment. That said, I still feel like something very surreal has happened to me because of the nature of diffuse DCIS. I never "had cancer" but nonetheless I lost all of my breast tissue and my pectoral muscles will spend the rest of their days on top of a silicone implant instead of the chest wall. So its not trivial but at the same time the relief of knowing that its behind me is incredible!!
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Hi Anna and Windy City!
Welcome to the forum, so glad you decided to come "out" and join us, but so sorry that you have to be here! You know what I mean!
Isn't it weird, we have all lost body parts, yet there are people who choose to infer that what we had wasn't serious. I am incredibly grateful that I was diagnosed with DCIS and not invasive cancer, but when people insinuate that it wasn't a big deal, I do show them the scars, and I didn't reconstruct! LOL
We three were all diagnosed at around the same time, so it is all new ground for us, and we all have to get used to the "New Normal". I have found that I really have had a shift in my reality. I appreciate the small stuff so much more now.
My surgery was a few days before Christmas, it feels like a lifetime ago now. I am finding it gets easier every day.
Try not to get caught up in the nonsense re DCIS, we know what it was!
I wish you both all the very best, and hope you'll come back here and chat. It is a nice place with plenty of support if you need it!
Take care!
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Hi, Anna. I agree - I am going to deck the next person that tells me I have the "best kind of cancer" and aren't I lucky to have "just a lumpectomy". I know I am very lucky my cancer was caught early and I require a lot less treatment than many women here. But the fear and pain and disfigurement and uncertainty about the rest of my life is still there and right in the forefront of my mind. I am trying to feel gratitude but am just not quite there yet.
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My take on the "You have the good cancer" comment is to tell them "Would you like to be told that YOUR cancer is a good kind if you are ever diagnosed by someone who does not know what it is like to go through ANY of this?" They have just stared at me or apologized up and down for their insensitive comment.
I chose lumpectomy with rads and an AI as my BC was 5 mm and I was able to choose that without worry in my mind. I would have had a mastectomy in a heartbeat if I thought I had no choice for either my piece of mind or because I had a larger area of DCIS which would leave my small breast a mess anyway.
Will I always be worried I made the wrong choice down the road? No. I made peace with my decision to go with lumpectomy v mastectomy. I have to have a re-excision this Monday for a pesky margin that ended up being too small (< 1 mm) but other than that, I can't wait to get started with rads and get this done! Am I afraid of radiation, particularly since it is my left breast and close to my heart? Yes! But, my doctors have assured me that they can avoid hitting the heart and can bend the rays to miss it. That is good enough for me since I am at one of the top BC centers (Yale) in the country. If I don't feel my tx is excellent, I am less than 3 hours from Dana Farber and less than 2 hours from Sloan-Kettering which are both in the top 5.
Make no mistake about this. We have cancer. It just has not morphed into the next stage where it becomes invasive. I don't call it a pre-cancer. People with pre-cancer don't have radiation, mx or partial mx unless they WANT to (ADH, ALH) so I know darn well the tx for DCIS is the same as having IDC for the most part with the exception of being able to for-go chemo (and some IDC with low oncotype scores don't have chemo either)
I have no problem saying that I have cancer. I am not happy that I do, just know that it is serious enough to warrant the tx protocol that we must endure so not shy about saying that I have BC in the least.
Hugs to us all. We are the "gray area" in terms of those who feel we "got lucky" but it is all relative imho.
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Hello ladies.. I also feel the DCIS diagnosis puts us in a category that is hard for some people to understand the fear & necessary surgeries to remove our "cancer". Ariom- I also agree with the fact that I also share that new shift in reality is one the good things that has come out of this journey. The past 4 months have been a mixture of incredible fear & new changes. But I'm looking forward to new beginnings with a wary eye on the past.
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It used to be hard for me to feel any kind of gratitude for having the "good kind" of cancer.......until I went to 3 funerals for women friends I knew this past year, all within 6months, all who died from stage 4 breast cancer. I dont really care what people think about my dx......and yea, I live with a certain amount of fear too......but I feel pretty grateful today.
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I believe any kind of cancer puts us all in the same club. We have all had to endure treatments and fear for our futures. For a long time, I felt the fact that I did not need rads and chemo made me less of a "cancer survivor". I think that was pure denial and my coping strategy. When I think back on the last 2 years, I realize all that I have been through and continue to go through is what matters. We are all here to support each other through this scary process.
April- I am from CT as well. Crazy storm this week but looking forward to some sunshine this weekend! -
April485 and all my other sisters, you have said it soooooooo well. We choose different paths because it is our PERSONAL CHOICE, and I deeply respect and appreciate hearing your perspectives. This is probably the safest place I know of to do this.
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I haven't been on this site for several months, but as I approach the second anniversary of my diagnosis, I felt compelled to check in. I, too, at times have felt almost guilty that I had it so "easy" compared to others who's cancer was already invasive at diagnosis. But there is no doubt in my mind that I had cancer and I and those who love me all have been changed forever. Cancer does that to people. Luckily, we can chose how we react to the fear, the uncertainty, and the inevitable change in the way we see our world and our place in it. I try very hard to see the positive effects of my diagnosis. And, yes, there are many. But, I never try to diminish or neglect the importance of the painful and negative ramifications of this disease either. One can learn a lot from being open to learning something from both sides of the journey.
Now that I am almost two years out I can go days or sometimes weeks without giving breast cancer much thought. Then, something will hurt, or I'll be sad and angry because I can no longer use my pellet hormone therapy that made me feel so wonderfully energetic and alive, or I'll feel my foob race for my armpit when I flex my arm and it all comes back full force. But, the fear has subsided. My intellectual self knows that my chances of having a recurrence or a new cancer dx. are next to nothing, but still....every now and again..... the fear will come up again. And that is OK. It is there for a reason. I try to use it to remind myself to take good care of myself, take my tamoxifen everyday and stay on schedule with my check ups.
This site has been a wonderful source of support, education and friendship. I am so grateful for women who are willing to reach across the screen to educate and comfort other women who are walking a similar path.
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Thank you sisters for your honesty about DCIS and it's effects on our minds and our bodies. I took radical steps for something that will forever change me. I am lucky but will not minimize the seriousness of being ok one day and having breast cancer the next. Wow! Support from you, family, and understanding friends will help me to heal. (((HUGS)))
Kathi -
I feel very fortunate, and do believe that I dodged the bullet. Even going from Stage 0 to Stage 1 is a very big jump. The chance of treated DCIS recurring as metastatic disease is miniscule. I won't say impossible. We ARE worrying about reoccurrence, but not in the same way as someone in Stage 1.
I have to say that I agree with Shayne, not because I went to funerals, but one of my close friends survived inflammatory breast cancer in one breast and triple negative in the other, as well as a bone marrow transplant (they used to use this treatment for late stage bc). She is also brca positive, so has worries about ovarian, colon cancer, etc. etc. She lives daily with many life-long side serious effects of her diseases and treatments (e.g. vision loss from organ failure). Her mother had stage 1 and ultimately died of bc. My mother had locally advanced bc and has survived.
Maybe I feel the effects less, also, because I didn't do an mx or a bmx. I was in the "borderline" situation of having about 5cm plus of DCIS, and had three lumpectomies. My breast has some cosmetic deformity (I have had six surgeries on that breast), but it's still there, and I still have the other one. If I had done mastectomy, I think that would have been harder for me, so I realize the treatment is more difficult or extensive for some than others. As Beesie has said, mastectomies do generate plenty of side effects. The radiation has had a temporary effect of fatigue (still happening) but that will be over.
I believe that DCIS diagnosis and treatment creates an enormous amount of anxiety, and because we often have choices to some extent, that adds to it. I wouldn't be obsessing as much about doing hormonal treatment if I were Stage 1, I'd just close my eyes and endure it. We are always worrying if we are doing too little or too much (while in the decision-making phase).
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I know this is not really relevent, but I don't remember hearing anyone ever saying, "oh, I am so glad you got the "Good Prostate Cancer!", You know, the one that is confined to the organ!"
The only stigma I have ever noticed about this form of cancer is, if you could call it that, is the Macho call "Nobody's putting a finger up my wazoo!"
"Well excuuuuuse me!............ How would you like to be naked from the waist up having sensitive parts clamped in a vice?" "Need I even mention stirrups and a speculum?"
I have only ever heard about someone being diagnosed with Prostate cancer, sometimes it has broken out and is in the lymph system, but very often you hear that, "It was just confined to the Prostate!"
Is is not a similar thing, or am I just looking for something to throw back at the nay sayers?
Please don't think I am minimising Prostate cancer, that is not my intention, just making an observation.
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I know what you are saying, although the analogy doesn't exactly fit, because cancer confined to the prostate could be analogous to cancer confined to the breast that hasn't spread in the lymph system (stage 1 and 2, no lymph nodes or LVI). Maybe there is "prostate cancer in situ". There is cervical cancer "in situ" for sure, and most likely others. Our situation stands out because the measures to treat it are draconian (the unilateral or bilateral mx).
I'm just careful about what I say to people. It's a confusing situation. I have received a lot of support. Generally, I just say "early stage", without going into details.
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I remember when my MO said "It's like having rust in your pipes" I felt like saying: "Well, would you feel okay if you were told you have rust in your epididymis?" I PROMISE you I really thought that!!
My primary care doc called me in January to say "your stereotactic biopsy show early breast cancer," I get on a waiting list to see MO, have a double mastectomy, and when I finally get my appointment the expert says it's only rust? I didn't seriously cry until after that visit, and it went on for days.
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"Rust in your pipes"....really? Interesting analogy. How often does one have to destroy their entire house because one has rust in a pipe or two?
My DCIS was multi focal, multi centric, grade three with lots of comedo necrosis. I knew mine was multifocal from my mammogram. I did not learn about the other areas in different quadrants until the post mastectomy pathology report came back. Hopefully, if I would have decided to try a breast conserving surgery followed by radiation, the radiation would have zapped those unknown areas before they became invasive. But, who knows for sure? I really don't understand why some MOs try to down play this diagnosis. I'm not stupid and I know just how fortunate I am that we discovered my cancer before it had the chance to become the big nasty invasive kind. But, I had to amputate my breast. I really loved my breast....even if she was floppy and droopy. So, when someone minimizes what I or other women with DCIS have gone through I get a little miffed.
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Coming from a family where prostate cancer is a very big concern, I can tell you that yes, there is "good" prostate cancer. And then let's talk about treatment. Many women diagnosed with DCIS have the option of a lumpectomy. Rads isn't fun but as ballet12 said, the side effects are usually temporary. As we are gaining a better understanding of the risks associated with different diagnoses of DCIS, more and more women who have a lumpectomy are now choosing to pass on rads. Certainly it's true that many women who could have a lumpectomy choose to do more - a MX or a BMX - but that's a choice. With prostate cancer, even for those diagnosed with the "good" prostate cancer, the treatment is draconian and can be pretty devastating physically and emotionally. With prostate cancer, as with DCIS, there also are all the same dicussions about whether there is over-diagnosis of early stage prostate cancer and whether or not the early stage disease should even be called "cancer".
When Is "Cancer" Not Cancer? In the latest effort by researchers to distinguish invasive cancer from related, possibly precancerous conditions often diagnosed as "stage 0," a National Institutes of Health (NIH) panel in December 2011 recommended that the word "cancer" be removed from the diagnosis of early, low-risk prostate cancers.
So DCIS is not as unique as we make it out to be.
I completely understand the emotional roller-coaster that comes with a diagnosis of DCIS. There is a cold, numbing-to-the-bones fear that comes with any diagnosis of breast cancer, even one that is early stage. No one should suggest that someone with DCIS shouldn't have or doesn't have a right to those feelings. But everyone with DCIS should also appreciate that to some extent, they have dodged a bullet. Or maybe it's more accurate to say that with DCIS, they were only lightly grazed by the bullet. A surface wound, and nothing more.
I recall a statement that someone very wise on this board once said: "The worst thing that ever happened to you is the worst thing that ever happened to you". So if DCIS is the worst thing that's ever happened to you, then for you it is the worst thing ever. But looked at in the bigger scheme of things, it's important to realize that it's really not. If you think about it another way, we should all be so lucky that DCIS is the worst thing that ever happens to us.
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Amen, Beesie. My sentiments exactly.
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Yep, you nailed it Beesie.
As I said before.....Ive never heard those comments from another BC survivor......only from people who've never had the big c.
I just wanna say......thank god for this site! Its the only place I have to talk about this disease with women who actually understand. We come from all walks, from all over the world.......yet we come together in our fears, anxiety and our hope for our futures. Its a very special thing we have here..... -
Well.....actually......my recent mastectomies are not surface wounds.
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Good morning ladies! It's a balmy 50 here in Vermilion OH
A lot of thoughts going through my head this morning.
My mx is scheduled one week from Monday.
So I read these posts, I laugh, I nod my head, I disagree, I get tears in my eyes. BUT:
I am only at the starting line.
This is what I know, my dx, dcis "stage 0" 5.6 x 6 cm. I had two biopsy sites. Also a MRI that showed that the breast tissue included in this 5.6 x 6 cm area may be invasive or may be becoming invasive.
Possibly changing my "stage 0" to "stage 1" pathology will show after mx.
There has been no discussion of radiation or chemo, the answer lyes in the sentinel node biopsy.
Emotionally? Lets see...numb? Is that a feeling. I think it is. I don't know what to feel.. Sadness? Anger? I am nervous, not for surgery but for recovery. I tell myself it won't be too bad. Then I tell myself it's going to be rough, don't sugar coat it.
I can read what everyone has to say, it's painful, it was tough, it wasn't too bad, it's was hell. Only time will tell.....
What bothers me more right now is my weight gain! It's been a long depressing 3 months. I kept telling myself eat healthy, feel better. Only to find chocolate jumping at me in the checkout lanes. Boxes of CHEEZ ITS calling to me. I joke, because it hurts. I don't want to hurt so I put on a poker face.
Truth is it all hurts, my dx, the removal of my breast, the scars, the fear of more cancer than what tests show weight gain ha!, least of my worries right?
I feel I need to be brave! So many friends and family are worried for me, going out of their way for me. Treating me like a celebrity! I feel guilty! I want my friends to treat me like they did before I was dx. I do NOT do well asking for help, this is gonna be tough....
I cry right now as I type, cause I know everyone loves me and will be there for me, I cry because I'm suppose to be the strong one!
Guess its time to lose the poker face let the "scared me" come out. -
So many wise women here. The fact is there are many well meaning but uninformed people in our lives, and somedays we just don't have the patience for it! I try to put myself in their shoes on my better days. Even my surgical oncologist has said things that drove my husband nuts. I reminded him that for once the dr got to tell someone relatively good news as he has probably seen at least 5 other women that day who were going to die from bc. Perspective comes with experience and time, but it is a process. I remind myself that if I can't eventually find the positive in this experience then bc has truly gotten the best of me. (And the best of me is reserved for my sweet little boy!) Hugs to all as you each make your own journey!
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Gardengirl, I'm sorry it's been so rough. It's hard to be strong all the time. I would also cry when others showed love and support. It's scary but know there are many women here who have been through it too and we will listen and support you too. Big hugs and will be thinking of you during your surgery.
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Thanks Cindy!
My husband is great, but he's not a lady. Like me this is all new to him. The best he does is hug me and say we'll get through this.
Having girlfriends to talk to definitely helps. Having women like yourself and others here is a super help! I've been hit with pms for a week now! Breasts hurt! Crabby, irritable, weepy, just what I need right now. Ugh!
I am glad I won't have my period during recovery,
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Gardengirl - I hear ya on the eating/weight gain. I had just lost 12lbs from WW when i was dx - its all back on now. Its been a bit of a rollercoaster emotionally - and the food helped. Hey, it couldve been drugs or something destructive. The weight will come off. Part of the new healthy regime....
As far as whats ahead.....I think I had to let go of wanting control, of knowing. I found strength within me I never knew I had.....you will survive, and get thru this and just deal. There isnt any other way but THROUGH. Come here, talk, complain, whine....whatever......these ladies are here for you. At least your husband is there for you. Some husbands leave.....or worst, check out and stay. They dont know what youre going thru its true, but we will never know what its like for them, to stand by and watch the woman they love go thru the hardest time of their life, and feel helpless. Cut him some slack and just hang on to eachother.
keep us posted on your recovery -
I agree. It's hard to know what the husbands go thru. We just have to have patience with them and ourselves. Everything you're feeling is pretty normal Gardengirl! Maybe a nice walk today will help...it's feeling like spring down here in Columbus! :-)
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Gardengirl-Im righr behind you having surgery on Tues the 19Th. Dito to all your feelings. I think we are coming up on our worst week on the rollercoaster ride. My dh is diabled and cant understand or help me. I worry about him while I recover, but my 4 Kids (29Yo-14Yo) will have to help us now. My coworkers are great support and care so much, but still dont really know what this is like, especially the WAITING! I am a planner and action person and slightly impatient, so this is the worst. Check out the March surgery thread for those of us facing surgery this month. Great group lots of support. Many virtual ((HUGS)).
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gardengirl....you are definitely at the right place. I only lurked when I was where you are now. I did not officially log on and contribute/participate in the discussions until I was way into my recovery. But the comfort, education and support I received from the women on this site was invaluable to me.
One thing I know for sure is that it is important to feel what you feel. Believe me... I understand the desire to be strong and not worry those whom we love. Many of your words could have been mine nearly two years ago. The unknowns are so scary. But this experience will reveal much about you, your friends and your loved ones. You will figure out what and who are really important to you. I found that it helped to just take one day at a time....some days I was only able to look ahead to the next hour. Again, give yourself permission to feel what you feel.
Best of luck to you as you move through this. I'm sending lots of positive energy and healthy thoughts your way.
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1 openheart, I use to be an employee for WW couple years back. I was with them 5yrs. Some changes in staffing etc. plus planning my wedding lead me to resign.
So I maintained my weight for 5 yrs! Then I've was dx with depression, anxiety. Weight has been creeping on, and even worse now.
I agree food is my comfort, it's not the best choice. It's the choice now....after surgery I need to get up brush the dust off and start moving again.
Actually I think while I am at recovering I wil eat better! I won't have easy access to jumpin in the car at lunch and driving thru for a meal. I plan on cutting up all my veggies and having lean cuisines handy , my wonderful husband will surely " crockpot" dinners too. Love him! I cried to him today and he hugged and held me, I said I was sorry for being so bitchy. I'm feeling the stress of the upcoming event. He said he understood, that's why he doesn't get angry, he know pms is hell, and especially worse at this time.
On a positive note! We celebrate our 2nd wedding anniversary Tuesday! Love him!
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