Fatigue, Depression, Guilt about DCIS - Help!

Lilyluv, we want to recommend the section about Fatigue from the main Breastcancer.org site, as a good source of information about a part of what you're experiencing, and a place with many tips for managing fatigue too. 

As the section says:

"Fatigue is the most common side effect of breast cancer treatment. Some
doctors estimate that 9 out of 10 people experience some fatigue during
treatment. Fatigue from treatment can appear suddenly and can be
overwhelming. Rest doesn't ease fatigue and it can last for months after
treatment ends."

Best wishes,

• The Mods

Oh my Dear - I feel the same way sometimes.  I had a low-grade DCIS, granted with a microinvasion, but that doesn't change my prognosis a lot.  It was very humbling to sit with the higher-staged ladies at the rads center.  So.  Of course we are lucky not to be a higher stage.  But what we have had is REAL.  It can come back.  It can come back higher.  We could lose a breast later, as we've done rads.  Etc., etc.  Not to scare you; these things don't generally happen.  But, yes, we don't get "cancer respect", but, still, we are changed, and we are, at first, frightened.  Now, I have both all the usual risks (known and unknown) that life brings, but also this other one.  Do not, please, feel depressed, unworthy, or like an imposter.  This is a real concern, and if it isn't likely to kill you, it is still a real concern, above what most others have.  PM me if you would like; I have a lot of feelings about this.  Still; though not wanting to be a Pollyanna, we ARE lucky.  Not  to have had this at all, but to have had it at this stage.  Love - P.

Lilyluv - I understand how you feel and have some of the same thoughts at times. When I tell people that I have breast cancer and they gasp and tell me how sorry they are, I follow with explaining that my prognosis is good and that I do not need chemo. It is not that I don't feel I deserve their sympathy, but I feel I need to qualify my cancer and reassure them that my life is not in any immediate danger. What follows is a sigh of relief and they tell me, "you are so lucky" and "you are going to be just fine." But I don't feel fine and while I do feel lucky to only be stage 1, I don't feel lucky about having had three lumpectomies and now a mastectomy next month. I don't tell them that I cry almost everyday and I am scared. This all still feels unreal to me at times and I can't believe I am really going to lose my breast. A common response I get from people downplays the seriousness of having surgery. As if it is no big deal. I cut out and now I'm all better - how simple. But it is not that simple. My body feels beat up from all the procedures and I am tired most of the time. Outside of this discussion board, I do feel alienated and distant from the people around me. Try as they might, no one can really understand what I am going through.

Just wanted to add that I also have had no chemo, and therefore kept my hair. I had a low Oncotype score, which, even having 2 nodes with micromets, saved me from getting chemo. I had a very non-aggressive tumor, which obviously went unnoticed for far too long, but still resulted in me having a 97% chance of survival over the next 20 years. Am I lucky because of that? Maybe, but maybe it is just all a crap shoot. I could drop dead of a heart attack or get hit by a bus tomorrow.

Lilyluv I understand what you are saying. Where do we fit, should we count ourselves lucky, are we the only ones feeling this way? I do know this, we all went through the fear as we waited for test results, fear as we listened to our Drs. telling us "you have cancer". Then going though making choices from a list of crappy choices. The surgeries, the Drs. appointments, the pain, the endless bouts of crying. I could go on and on, but you know all of this.

This is how I am trying to look at it..... I am grateful that my cancer was caught so very early, lucky not so much. I never wanted a MX but that was the only option to remove my cancer. I am grateful for my awesome PS who did a phenomenal job with what he had to work with. There were many bumps in the road for me with five surgeries in a years time. I got my 3D tattoo in January and it is looking nice, Renee in Florida did an awesome job! At this point the worst of my journey is done. I still have a few stops along my road to my new normal, my Drs. still want to see me every 6 months. I can't say that everyday is happy, I still fight with my mind wanting to hash over things that happened or even why this had to happen. Have I totally accepted this, probably not, I hope that one day it will be okay. For now I know I did what I needed to do and I can't compare my struggles with anyone else's struggles. We all have our own cancer journey and one is not necessarily easier than another. It just is what it is for each of us.

I hope that all of us can keep moving forward and continue creating our new "normal". Please take care and know you are not alone. Take it one day at a time. Take care!

There is a term used, "Survivor Guilt", to describe persons who have survived, say a serious accident, when others were not so fortunate.  It really describes what a lot of women here are experiencing.  We feel that we should be so thankful for our situation (compared to what it could have been) and therefore feel guilty when we experience all the emotions of loss and grief.  It is possible to accept that others' have it so much more difficult, yet at the same time, accept our feelings as valid and in need of support and confirmation.  That is what these wonderful women here can provide and I am so happy that we have each other.  It is definitely very difficult to find a support group in the community that can address the huge differences in needs amongst persons dx with bc.

Lily,

I'm so sorry about the loss of your ferret!  Pets are part of the family and it's so hard to lose them. Life seems altered when we lose them. 

This has been such an interesting and important thread - so like a support group for those of us with DCIS.  The feelings you expressed are what I have felt, yet have had trouble putting words to.  Sometimes, when I'm having one of those "down" days, it's probably that I'd subconsciously been feeling what you wrote about - but couldn't sort it out!  I think you've given voice to what goes through our minds. 

I also think that the bedside manner of the medical staff is SO important to our feelings of well being - emotional and physical.  My RO is the opposite of yours - each week he wants to know exactly how I'm feeling and wants to see how my skin is doing.  I feel that he doesn't think my case is less important than more advanced cases. 

I do have those moments of confusion and they bring to mind how WE (with DCIS) are different.  One day I was leaving and the nurse came to give me a big hug.  She said that it was her last day - she was moving on to another job - and I was one of the people she was going to miss - she'd miss my smiling face in the morning.  I sort of bristled as I walked away - I thought it was so unfair to the others who were too sick or worried to smile.  I wondered if I shouldn't be smiling so much there.  I don't know how to act or what to say to those others who seem to be sick or frail.  It's as if we've been granted the time machine trip to go back to the beginning and find what they would wish they could have found - and now we can be as aware and vigilant as is possible now in medical history.  I can't be glad that others - like my sister - didn't have this for themselves.   

hi Lilyluv,

I'm sorry about your ferret, too. It doesn't help when you lose your furry babies. I have my first treatment a week from Monday. You put in to words so eloquently what I was feeling. Do I have the "right" to feel so down? Why am I so sad, if my prognosis is so good? And so on. I started feeling emotionally better once I got my good report after surgery. No invasion and acceptable margins. And then I had the rads simulation, walking in there all brave, walking out shaky and sad...but I had a good week last week. I felt like myself for the first time since this all happened. I think in the midst of all this crap, we have to find a way to feel like the way we did before we learned about dcis. To return to our selves. I wish you all well. I can't tell you how much comfort I have found in just reading the words of others on these boards every step of the way.

Yes, thank you Lily and others. This thread has been very helpful to me as well. This is the one place where I feel anything I say will be understood and reading others thoughts helps put words to my feelings, which then helps me work through them.

Looking for advice? Recently had surgery to remove tumor very small 12mm grade 3 with no lymph nodes removed, My DCIS is non hormonal waiting to see oncologist about treatment but surgeon would recommend chemo so confused looking at all the posts {still learning} pleae help .

ladyness, I read through some of your other posts and notice that there has been discussion by your doctor (the surgeon?) about the possibility that some cells might have escaped.  DCIS cells are completely contained within the milk ducts of the breast, and for that reason, DCIS cannot move beyond the breast - it can't escape.  So, as cdelv66 explained, this means that chemo is never required for DCIS.  Chemo is a systemic treatment; it's used to address the risk that some breast cancer cells might have moved beyond the breast.  The role of chemo is to track down those cells, wherever they might be in the body, and hopefully successfully kill them off.  So since DCIS can't move beyond the breast, chemo isn't needed for DCIS.

If chemo is being considered for you, then it's most likely that in addition to DCIS, you also had some invasive cancer.  DCIS and invasive ductal carcinoma (IDC) are often found together; when that happens, the diagnosis and staging and treatment plan is based on the IDC, since that is the more serious condition.  This means that someone who has DCIS and IDC is considered to have IDC.  The DCIS becomes incidental to the diagnosis and it will be effectively treated by whatever is done to treat the IDC.

Posting at the same time Beesie! Glad you were here to clarify!

ladyness, 

Chemo is too harsh a treatment to be given as a precaution for someone who has only DCIS.  Even women with low risk invasive cancers don't get chemo.  

What you need to find out is if your 30% risk of the cancer coming back is localized (i.e. a local recurrence in the breast) or distant (i.e. a return of the cancer outside the breast), or a combination of both.  With DCIS you do have a risk of a local recurrence, and normally after a lumpectomy, radiation is used to reduce this risk.  On average, rads reduces local recurrence risk by about 50% which means it could take a 30% risk down to about 15%.  With pure DCIS you do not have any risk of a distant recurrence - there is no risk that any cells might have escaped.  By definition, that doesn't happen with DCIS.  If there is any risk that cells might have escaped, then the diagnosis is not DCIS.

You're right that a medical oncologist is the right doctor to be talking to about this.  But any surgeon with even the slightest bit of experience with breast cancer would know that chemo is not used to treat pure DCIS.   Do you have a copy of your pathology reports from your biopsies and surgery?  What words are used to describe the cancer? 

ladyness, as Beesie and others have said, DCIS NEVER requires chemo, even if you are young at diagnosis. Systemic treatments don't work because there is no chance it has gone anywhere but your ducts and chemo only works on the system.  I am thinking he may mean that you will need tamoxifen or an AI which perhaps some docs call "chemo" even though it is "hormonal" therapy. Otherwise, I am just stumped as to why your BS would say you need chemo for pure DCIS? Hoping you get some answers soon. Unless you have IDC and were not informed about that diagnosis yet? Hope it is just a misunderstanding and that you do only have DCIS!

As for this thread, I can relate big time. But, in my heart, I know that I am both lucky and not lucky (cause hey, cancer is not exactly winning the lottery even if it is the earliest stage) and I am just now coming to terms with my survivor guilt issues. I lost a good friend to BC many years ago and when I heard the word "malignant" from my biopsy, terror is an understatement for what I felt. Now that I have been here for almost two years (BCO or Boobs are Us...lol) and know so much more than I ever wanted to about this disease, I am much calmer for sure.

Hoping everything turns out well for you ladyness!

Lily~ I was diagnosed with DCIS, High Grade at the end of January and the original plan was to have lumpectomy, rads & tamoxifen.  We've done 2 lumpectomies and are still unable to clear the margins, so after careful consideration, we decided mastectomy was the next step.