Fatigue, Depression, Guilt about DCIS - Help!

Lilyluv, I totally understand that feeling of not feeling like you fit with cancer survivors. I also have only had DCIS, the only women I knew that had gone through breast cancer had much more serious diagnosis, I did not feel right talking with them about my feelings of depression and fatigue. Compared to them I was "lucky", although I did not feel lucky.

 I think our medical teams can make a difference in how we feel about it.. When waiting for my first lumpectomy surgery, that was going to be followed by 25 radiation treatments, I was feeling down enough on my own. Then the anesthesiologist came in to do the pre-surgery talk, the morning of my surgery. The first thing she said while looking at my chart, "you don't have breast cancer!" and she sounded angry (obviously she does not believe DCIS is cancer)  I didn't respond as I was kind of shocked and knew I was relying on her to keep me from becoming nauseous from the anesthesia. But it made me feel worse. In my head I was thinking, "well, great then get me my clothes and get me out of here before someone removes part of my breast and fries me with radiation".  In the recovery room afterward, the nurse just seemed too busy and rude. She sent my husband down to the pharmacy, then came to my bedside, without pulling the curtain around the bed,  pulled out the neckline of my hospital gown to look at my breast, this was in a room filled with other recovering patients and their families. She then told me I could get dressed and go, dumped the bag with my clothes on the bed, pulled the curtain part way and left. She never asked if I needed assistance.  I shouldn't have let it effect me, but it did, can you tell that  4 1/2 years later it still bugs me that they would treat a patient that way : ) .  It left me with the feeling that what I was experiencing was insignificant and it did make me less likely to talk about it.

Thank goodness for this site. There are so many supportive, caring, informative women here and so many topics of discussion, makes it easier to find others with similar dx or experiences.

((((Sunone))) O.M.G.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I would have been so upset! I cannot believe that you were treated so shabbily by both the anethesiologist and the nurse! After I was well enough, I would have complained BIG TIME! It is not too late you know. Even if it was a long time ago, you still can write a letter to the director of that hospital and tell them what happened and explain how it made you feel at a very vulnerable time in your life. Shame on them!

Hoping that you find some peace about all of it someday.

As for DCIS and the "cancer" v "not cancer" thing, my BS said "You have cancer. It is not invasive, but make no mistake. Those cells in there are BC cells and if you just leave them and do not remove them, there is a VERY good chance they could kill you one day. So, as far as I am concerned, I am a BC survivor and after going through rads and this little pill I take every day which makes me feel 90 years old, I am wearing that badge without hesitiation.  Word!

And Part II, the "Is DCIS a cancer or a pre-cancer" question:

It
used to bother me a lot when someone would suggest that DCIS is not
cancer. It's that very same cell that is a DCIS cell one day, and then
the next day, after it breaks through the duct, it becomes an invasive
cancer cell. (Yes, there is one final biological change that allows
this cell to break through the duct and survive but that cell is over
90% of the way to being a full blown cancer cell when it's still DCIS.)
If I'd had 7cm+ of high grade DCIS with comedonecrosis but didn't have
that 1mm of invasive cancer, would my diagnosis, treatment and prognosis
have been a whole lot different? No. Was my diagnosis less
threatening than if I'd had just a small non-aggressive Stage I T1a
tumor? No, since my DCIS was so wide-spread and so aggressive, it was
possibly more threatening. So, of course DCIS is cancer.

Or it
is? Here too my perspective has changed. First I'm come to appreciate
that for medical and scientific purists, DCIS cannot be considered
cancer because DCIS does not have the ability to metastasize. Many
definitions of cancer include "the ability to metastasize" as a
criteria, and based on that criteria, DCIS is not cancer. Other
definitions simply say that cancers cells must have "the ability to
spread" and since DCIS can spread wildly within the ductal system of the
breast, DCIS does fit that definition of cancer. But I understand the
technical reason why some people say that DCIS isn't cancer.

Separate
from that, there are the treatment and psychological implications of
calling DCIS cancer. From being on this board, I've come to appreciate
how much a diagnosis of DCIS can vary. And therein lies the problem. A
diagnosis of a tiny amount of low grade DCIS in a single focus probably
presents a risk that is not much greater than the risk associated with
ADH, and in some cases perhaps should be treated the same way. On the
other hand a diagnosis of a large amount of high grade DCIS with
necrosis presents a high risk; that type of diagnosis is almost certain
to develop into invasive cancer or an invasive recurrence if not
adequately treated. The problem we have today is that both these
diagnoses are grouped together. When we call them both cancer, we have
some women who have extremely low risk diagnoses of DCIS opting to have a
BMX, even when they have no other risk factors. When we call them both
a pre-cancer, we have some women who have very high risk diagnoses of
DCIS wanting to pass on surgery and "watch and wait" instead.

I
don't know the answer. What I do know is that with the perspective that
time has given me, I now see both sides of the argument. I don't get
angry anymore when I hear DCIS being called a pre-cancer. In some
cases, I think that probably is the better way to describe it. But
still, I worry more about under-treatment than about over-treatment. So I
get frustrated when I read about DCIS being called a pre-cancer,
without an accompanying explanation that all DCIS is not alike and some
DCIS really does needs all the big guns of treatment.

End of my ramblings.

Edited for typos only.

This thread is very interesting to me.  I have a fairly new diagnosis of DCIS.  They all tell me I'll be fine, but I have to have surgery, radiation, and tamoxifen.  That sounds serious to me!!! But I, too, am grateful that it's this, even though I am confused.  A stereotactic biopsy came back positive.  An MRI showed more weird places, one in each breast.  Ultrasound showed nothing, so right now I am waiting for an MRI biopsy on both breasts.  This will be the final test, I guess, and decisions can be made.  Don't know what I'll end up with at this point, but I'm not a fan of "breast mounds" that the plastic surgeon talked about in case of a mastectomy.  I am trying not to think about it too much until I know more, but it is hard.  Thank you all so much for sharing your experiences.  I'm grateful.

Lilyluv, I am waiting right now for the appointment.  I love my dr.  Results come quickly.  But setting up appointments takes at least a week.  It drives me crazy.  I want this done yesterday. 

Lois

Lilyluv - I think that is were I am having a hard time accepting all that has happened. I had multifocal low grade DCIS and that was it, nothing else, but yet I was told a MX was my best option. So when I hear people say DCIS isn't cancer it's precancerous cells I cringe. I sometimes wonder was I over treated for something that wouldn't have killed me. So are they trying to say I went through all of the stress and pain of reconstruction surgery to try and feel normal for nothing? I am 1 year and 5 months out from my MX and still processing all I have been through. I hope one day I can just let it all go and just live my life without tripping all the time on this whole BC nightmare.

Thank you, Beesie. 

Hi Lililuv.  Just wanted to tell you that I also had the crushing fatigue.  It DOES resolve, but it takes awhile.  Exercise (and hopefully some sunshine and Vitamin D) helps a lot.  I pushed through the fatigue and continued to work and exercise.

I am very thankful that I all had was DCIS.  I had a large amount of high grade DCIS with necrosis, although no microinvasion.  I did have three lumpectomies to get clear margins, but eventually got them.  Due to lots of prior surgery on that breast and then three lumpectomies, it neither looks nor feels like what it used to.  In fact, on ultrasound they say "severe architectural distortion."  I don't regret doing what I have done thus far, which is lumpectomy and radiation.  I am not taking hormonals, due to health issues and concerns about side effects.  I have grown to accept that decision and feel good about it.

I think about DCIS as "pre" cancer, but with the high grade, etc., it was a high risk pre-cancerous situation.

As I grow older and move away from the diagnosis (it'll be two years in August), I am just thankful it's behind me.  I am prepared for the possibility of more biopsies (had one since dx, on other breast), but I really don't assume that I'll get a recurrence.  I'm sure that I have risks for other diseases and conditions which are equal to or greater than the risk for bc.

I dealt with the "public", which includes a couple of close colleagues at work (in a medical setting), by leaving the whole diagnosis thing as kind of vague.  So, while they know it was "bc", they may assume it was early stage IDC rather than DCIS.  I chose not to clarify the situation.  In that way, I was "allowed" to have the fatigue and miss grand rounds, etc. while recovering from surgery and radiation.  Now, very few people ask "how are you?" in that piercing way.

I am glad that our primary problem is angst about the diagnosis and treatment, and not fear of metastatic recurrence, as might be the fear of those with IDC, ILC, or certainly IBC.  My dance teacher had IBC and IDC, and her fears are much different from mine (and she's brca1 positive).

So, for most of us, life goes on.  Is it possible to get a recurrence or new occurrence?  Yes.  you can most definitely see it on the boards here.  Is it likely? no.

Just want to second what Beesie said about the microinvasion providing more clarity about the diagnosis and need for treatment, as I feel the same way.  Especially since my area of DCIS was so tiny (grain of rice was how they described it), knowing that it was already becoming invasive made me feel better about treating it aggressively.    I suspect without that, I might be second-guessing myself.

And like Ballet12, I don't usually tell people my exact diagnosis unless it's someone very familiar with BC who would know what I'm talking about.   Usually I just say "breast cancer but they caught it VERY early" and leave it at that, which seems to satisfy any questions.

Yes, Annette, I would feel differently with a microinvasion.  I think with no microinvasion, it was truly "caught in time."  With a microinvasion, a tiny amount escaped and you are on the precipice.  It's a different scenario.  I take more liberties in my situation, such as foregoing hormonal treatment. I think my body somehow protected me, because it prevented that genetic change leading to bc.  Back when I had the ADH diagnosis, it could have been something else entirely, but it was only a high risk condition. So, after many years, I progressed to another higher risk condition, and it was stopped at that point.

Despite the lack of a microinvasion, I still don't question the treatment, but I keep mum about the details, to others.

If I were completely moving on, I wouldn't be posting here (lol!)

Mayanne, 

It was actually the positive margins after my excisional biopsy that pointed to the fact that I had more DCIS in my breast - I didn't need to have the MX to find that out.  I had two separate areas of calcifications that showed up on my mammo, and both areas where fully removed during the excisional biopsy.  I don't think there was a single clear margin on any side around either of those areas of DCIS.  So there was no doubt that there was more DCIS left in my breast, and possibly a lot more.  Then I had an MRI, and the MRI did in fact show the full extent of the DCIS.  

For me the microinvasion was helpful because without it, I might have opted for a re-excision lumpectomy rather than a MX.  But there was no question that I needed more surgery.  My first surgeon presented a MX as my only choice; my second surgeon told me that a MX was probably necessary but knowing that I didn't want to go that route, he was willing to attempt a re-excision to see if he could get clear margins.  Without that microinvasion, there's a good chance I would have taken him up on that. And who knows, maybe there would have been clear margins - although probably only very small clear margins.  In that case, I would have had rads but I no doubt would have been left with a very high recurrence risk, given how wide spread and aggressive my DCIS was.  Of course it's more likely that the lumpectomy would have resulted in positive margins, and I would have ended up with the MX anyway.  

The MX was a hard decision for me to make, but I accepted it in part because I knew that my DCIS was so aggressive - the microinvasion was proof of that for me.  I quite possibly would have ended up with the MX even if I didn't have the microinvasion, but I'd probably have spent a lot of time wondering if it was really necessary, if my DCIS was ever going to break through or not. 

Having said that, with what I know today (after 8 years reading up on DCIS and seeing women with DCIS come through this board), I would always choose to remove DCIS.  Depending on the nature of the DCIS - the grade, size, focality - I might not opt for any other treatment, but I would always have the surgery and ensure that I had clear margins.  The simple fact is that until all the DCIS is removed, you don't know that it really is all DCIS.  The risk of finding some invasive cancer hidden in there with the DCIS is higher for those of us who have large amounts of high grade DCIS, but over the years I've seen enough examples of women with intermediate and even low grade DCIS who've been found to have microinvasions, or sometimes even something more.  And while it's believed that it might take years for low grade DCIS to evolve to become invasive cancer, and in many cases that might never happen at all, the truth is that we have no way of knowing which cases will evolve and which won't.  Even worse, we have no effective way of monitoring the progression while the DCIS is in the breast.  I didn't know any of that 8 years ago; if I had, I wouldn't have needed that microinvasion to convince me that my DCIS really was aggressive and really did all need to come out.  

mrenee, what I just said in my last paragraph is what I would say to you about your situation and your uncertainty. From your doctor's recommendation, a MX was the only way to ensure that all your DCIS was removed. And there was no way to know if it really was all DCIS until it was removed. That's why your MX was not over-treatment.  Maybe in 10 years or 20 years when we have better screening and when someone can tell you with certainty that your DCIS is all DCIS and it isn't about to become IDC anytime in the foreseeable future, then maybe you could get away with not having the MX and not removing all the DCIS.  But you made the decision you had to make based on the best knowledge and abilities that we have today.

Hi Lilyluv, I know what you mean about the biopsy!  The core biopsies, seem to me, to be more aggressive to the tissue than surgery.  I had one on the other breast after all the treatment was done on the breast with DCIS.  I really didn't want to do that biopsy.  The problem is that they have a high degree of suspicion with us, once we are diagnosed. The radiologist was on the fence, but the surgeon said "what if it's this?  what if it's that?" so I just didn't feel I could go against her.  Thankfully, it was benign (I knew it would be.) I certainly hope you don't have to do any more of those biopsies, but the odds are pretty good that you will have to.  I, basically, expect to do one every few years.  That's been the pattern for me for the past 19 years.

Hi, Beesie!... and thanks to Lilyluv who started the post, and everybody else participating.  This is indeed a great thread, especially for us who have been diagnosed with DCIS and referred to as "the luckiest ones to have cancer."  Yep!  That was all I heard when I was first diagnosed with DCIS late last year, Thanksgiving week to be exact.  Not that I wanted to pity myself; but, really, how can anyone be lucky knowing that she has cancer cells lurking in her body.  Even if mine was Stage 0, and 4mm only, to me my pre-cancer cells have been activated and that's scary!    

Thanks to the support of friends, old and new (I have no close family here where I live, except for my husband and kids), who have helped me along the way.  This site is wonderful.  I was actually just referred to this site by a friend of a new friend in Zumba, who shared with me selflessly her own journey and told me that "had she known about this site earlier, she would have educated herself more."

Lilyluv, I, too, had tremendous guilt before, especially as I went through my earlier journey almost very smoothly.  Yes, I was overwhelmed with all the information at first; but, based on readings and sharing of wonderful people and strangers, I thought it best to have double mastectomy.  For others, it may be an aggressive treatment, considering the size of my cancer (4mm or .4cms),  but I thought I should just do it all the way.  Besides, since there is reconstruction that can follow, I'd rather do that on both my breasts, too; rather than feel lopsided somehow.  Except for a little hump 2 days prior my double mastectomy, I was called in for a second lab due to my low blood cell counts and possibly irregular ECG.  But, all got cleared, and "all went well as planned," as my doctor said when he checked on me right after my surgery.  And so my first question to him was, "Do I have my nipples?"   He smiled and said, "Yes, you have!"  I was discharged the following day-- no swelling, no nausea or vomitting, no unmanageable pain with the drains; so I didn't really have to take vicodin, except for the first day at home (just trying to follow my doctor's notes to the letter). Meanwhile, the tissues taken out from me is in pathology and I will know the results in a week.

And it was after knowing my report did I confirm to myself that the cancer size doesn't really matter; big or small, the fact remains-- it is cancer!

My path report, unfortunately, showed positive margins and a bigger cancer size of 4cms (almost 2 inches) as opposed to the .4cms that the mammogram initially captured.  Reason:  the rest of the cancerous tissues did not have calcifications.  So, even if I had MRI prior to surgery, it wouldn't have mattered; the MRI simply confirmed that the markings of the initially-tested malignant .4cms cancer cells were still the same and intact.  So, yes-- those didn't grow or got out of the duct, but there were more tissues involved.  Solution?  My breast surgeon has to go in again and shave off more skin to ensure clear margins.  Of course, I was distraught!  A lot of things started to go in my head, esp. with the planned reconstruction in-waiting.  What if there are still cancer cells in my body?  What about the expanders now in my chest?  I couldn't proceed with reconstruction if I will do radiation... or even chemo.  At least, everything has to be delayed.

After seeing my oncologist that same week, I was enlightened (but only a little bit more).  The good news is that-- it is still same location-- R breast, non-invasive DCIS, Stage 0.  The extent of the cancerous tissues extended to the interior, hence the nipples and areola were not touched.  So, no radiation and no chemo... not even oral medication.  In fact, it was really good that I did double mastectomy, because my L breast showed benign tumor already.  And since all the breast tissues have been taken out, and there is nothing to protect; so, these post-op treatments might even harm me in the long run.  The solution remains:  Go in again and take out more skin.  And she said, she agrees with my breast surgeon to wait for 3-4 months (just about the time that my expanders will be swapped with implants) to give my body time to heal more, including the skin that she will be working on. The waiting time will even give her more leeway in shaving off more skin as may be needed.

But, the question remains: Are there cancer cells that are left on my spared skin?  And the answer is:  We don't know.  

So, yes, this is where I am right now.  It's been 3 weeks since; my drains are now out.  I am still restrained to do chores, driving, exercises, and lifting or pulling with my arms; but, it's okay.  At least, I am able to sleep better (being able to move from side-to-side makes a difference)... stretch my arms at least... do more computer work... or just be a little bit more productive.  Next week, I go back to my reconstructive surgeon; hopefully, he will allow me to do more activities.  In 3 weeks, I go back to work, and most everything should be normal.  I can't wait to Zumba!

But the question still remains:  Are there cancer cells that are left on my spared skin?  

Quite frankly, I don't want to think of the answer anymore.  Prior to my surgery, I vowed to be of help to other cancer patients in my own little way-- whether I have encountered them physically or not.  I know, for a while, knowing that I am not yet cancer-free, I got de-focused and started looking at myself again.  But, I can't let myself wallow in self-pity.  There surely is more to life than that.  There are more people needing attention than myself.  Every time I feel down, I think of my husband and my kids and realize how much they need me strong and going.... I remember my friends who check up on me every now and then and realize how much they await me to go back to my normal activities and hang out with them again.... I think of work, my colleagues, my supervisor, and my boss who all have been very supportive all this time and realize that they have believed in me so much that I should really go back to work healthy and able.... I remember the strangers who have touched base with me from Adam just to share with me their own stories so I may learn from their mistakes or just be able to share and compare notes and realize that they need me to listen to them also and even pray for them.... and, of course, I remember this site so I can go back to the reality that I am not alone in this journey and I should feel responsible to share my story and all my learnings throughout my journey the best way I could so those who may find use for it, use it-- that is, in their decision-making, discussion with their doctors, or even just sharing with friends and family.

Don't feel down, Lilyluv...  And everybody else feeling alone at any one moment--  just come back here...we understand.-- (:  Cheers to all of us in our journey!     

There are so many different scenarios.  I am one of the women here, as Beesie has observed, who had mostly low and some intermediate grade DCIS with no necrosis; not the place you'd necessarily expect a microinvasion, but, indeed, I had one.  Mine was in the middle of the DCIS, so had very good margins (for the micro) and was the very lowest Stage 1, lowest Grade 1 it could be.  As distant recurrence is (not quite, but almost) not much of a concern in a case like this, I am more concerned about recurrence based on the DCIS, not the micro.  The HMO paths said it was 4 mm of DCIS, an outside path (DCIS expert) said it was scattered over 30 mm, though agreed it was non-necrotic and low grade and did not need re-excision even with clean but narrow margins.  Everyone agreed on the rads, thank goodness, so the decision was taken out of my hands.  Though once the micro was discovered (upon reevaluation) I would have done the rads.  I am not doing the hormonals, as my recurrence risk is assessed as small by all the docs, though they disagree substantially on the exact (or close to exact) percentage.  I give up trying to get any help from my HMO about a personalized recurrence % estimate; they are just not interested in narrowing it down.  I'm not 100% OK with not taking them, but I'm getting that I may not be 100% OK with any of the choices involved in this whole thing.  I do not want to live with the homonals SEs with a low recurrence chance, and I don't think I'm taking a very big risk.  That's it.  Will be exercising (my RO says it is proven to lower recurrence by 30%, and I have read that quite a bit) like it is my job in life, forever.  So.  After checking on me every day, being great after surgery, taking me to and seeing me in my gown at the rads center, and being appalled and "So sorry, Mom" after seeing my rads-burnt breast, when I told him I was glad treatment was over and I felt I'd handled my BC experience well, my son said today "You did not have BREAST CANCER, really".  Like not the REAL breast cancer.  I said "Actually, I did.  It was small, early, and it's gone, but we aren't really going to be in denial that it happened, are we?"  He just said he was changing the subject.  He's a bit of a tough-love person, and probably doesn't want me to identify with the BC too much (I'm not), also probably would rather choose to forget about it himself, but, seriously.  I didn't have it?

Beesie- thank you for all of your support sometimes it is hard to stop second guessing myself. I do know that I made the right decision in regards to my treatment, I guess I am still working on accepting all the change that has come with it. I feel like I have been knocked to the ground so much in the past few years that it makes it hard to keep getting up. It takes me a long time to get over losses in my life and I think this loss is a doozy.  6 months before my diagnosis I lost my dog to cancer and now my other dog has cancer and will only be around for a few more months. Life has been coming at me fast and hard, so I don't feel like I have had time to process one thing before the next thing happens.

I also want to thank everyone else for sharing your thoughts, feels, and journeys with us. It makes for a less lonely feeling. I have a very small support system at home and you all give me the extra support that I need to keep moving forward in my life. I really can't thank you enough.