Emotional side of DCIS/mastectomy

Loni, if I'm not mistaken, the surgery provides the tumour that can then be tested for the receptors. Isn't the HER part of that? The Onco testing doesn't work for some combination of the ER/PR. Someone will come along and correct me soon. 

Robby, Very long posting, I DIDN'T MISS A WORD, I see my surgeon 3/9 for final decision on elected surgery, I am electing bi-mx I thank everyone for sharing their experiences to help me make my decision. I am a male, and while very different from a female, I share soooo many of your emotions. There is less than 1% male DCIS and I have turned to female DCIS for support. Thank all of you and pat yourself on the back.

I found it difficult to find a local support group as well, I went to the local hospital bc support group but they really were not very supportive when I "ONLY had DCIS".. I understand that many of them are facing a "bigger" thing than DCIS but to minimize it is a horrible experience.. I never went back!  This is where I found the most support!

Sirfin1:  So good to hear a man's voice, not good that you are dx'd with bc only good to hear from someone with DCIS who is male.. It means to me that even men can be caught in their early stages!  That's incredibly important to me and my family as my father had Stage II breast cancer when first dx'd  and it was approx 12 years before he was dx again with mets..  I have a son, daughter and brothers and sisters who all fall into "high risk" because of my father's dx.  Best of luck with the surgeon  and your decisions!  Best

Update:

I was called with my final path report today and I did have some more cancer and they took 18 nodes. She said they got it all and the nodes are clean!! I will not need rads or chemo!

I am so greatful and happy. Good luck to all the ladies going through this and God Bless!

hi ive posted twice already cant find my posts am i cracking up here,,,,,,,,haha anyhow same situation chrissy ca ............almost like w/out chemo rad, its so forgotten not as important, not real to some,,,,,,,,,,,,,,,,,,,,,,,this week is my 1 year mammo for the other breast, my surg was 922/08 so im nearing my 6 month mark,,,,,,,,,have to start tamoxifen write when anyone can id love to converse,,,,,,,thanks

Today I was diagnosed with DCIS and IDC.  80% positive I am going for Bilat Mast followed by reconstruction.  Any advice to immediate reconstruction vs. later??  Also how bad is recovery time?  I am a nurse of 15 yrs.............soooooo different when I am in the bed instead of on the side of it

Thanks

Jen. 

I to had DCIS and thankfully, thankfully, thankfully avoided chemo, radiation and tamoxifen.  I did endure a lumpectomy and now a bilateral MX with reconstruction.   I had a choice and chose the bilateral MX with reconstruction.   To me, I would do whatever it takes to take me as far away as possible from this monster and keep me as close as possible to my dear ones.   Even though I "dodged" the bullet and have avoided some very unpleasant things, I still have fought the battle and have the scars to prove it and so do you.   It is hard to come to grips with the diagnosis and what follows.   It stinks!   However, I am a believer we are survivors and things will get better.  If you choose to go with the TEs or not, that is your personal choice.   Don't ever diminish your fight with BC!   Whether you have Stage 0 or Stage 5 - you are still in the fight.  

Shane, this is an interesting thread!  I went back to page one to see what I wrote 4 years ago and for the most part, I still agree with it. But I have 4 years more perspective on this, and 4 years more experience being on this board. So I'll copy and paste my original post here, and then add my new perspective to it.

My original post, from February 2009:

If someone lost their arm to bone cancer, but didn't require chemo, would anyone dare say that they didn't really have cancer?  And if they choose to wear the most realistic prosthesis possible, to help make their life more normal, would anyone question that?  Or if they choose surgery that replaces their bone with an artificial or donor bone, would someone say that they were too vain?  So why is it any different for someone who has DCIS and who's had a mastectomy?

Because DCIS is a non-invasive cancer it's sometimes questioned as to whether it's really cancer.  It's only Stage 0, after all, and some doctors call it pre-cancer. But there are other types of cancer that also are non-invasive in their earliest stage and there doesn't seem to be any question that these cancers are cancer.  So why is it different for DCIS?  The fact that we are made to question whether DCIS is really cancer is, frankly, absurd.  And just because we don't need chemo doesn't mean that we didn't have cancer.  We tend to think of chemo as being the norm for anyone who has cancer, but the fact is that many people who have cancer - many different types of cancer - don't require chemo.  Including myself, 4 members of my immediate family have had various cancers (breast, thyroid, prostate, melanoma).  None of us required chemo. 

As for the mastectomy, it is an amputation, and it is traumatic.  Because breasts for some reason aren't considered to be a "necessary" body part after one is finished with child-bearing, there seems to be a belief that it's easy to lose one's breasts. I see that written often even here on this discussion board.  Frankly, as far as I'm concerned, that's bulls***.  I certainly never considered my breasts to be unnecessary - for me they were a very important part of my sexuality and therefore, and a very important part of my life.   The fact that I had to lose one of my breasts to cancer pisses me off, even now more than 3 years later.  

And reconstruction isn't easy.  Whenever someone has the choice of a lumpectomy or a mastectomy, or a mastectomy or a bilateral, particularly if they are planning to have reconstruction I always warn them to be prepared for what lies ahead and I always tell them that they should be 100% certain that this is what they want to do.  You can have a lumpectomy and then choose to have a mastectomy.  But if you have a mastectomy, you can't go back.  Too many women go into their mastectomies & reconstruction thinking that it will be a quick easy process and they'll end up with perfect, better-than-ever perky breasts.  For a few lucky women, that's what happens but for most of us, reconstruction is the gift that keeps on giving, with changes that affect us for the rest of our lives.  And while those who have mastectomies without reconstruction don't face all the same issues, obviously here too the changes are ones that you will have to live with for the rest of your life.  This is no small deal.  It's a big thing. 

As far as I'm concerned, anyone who tells you that you shouldn't grieve or that you should consider yourself lucky that it was only DCIS and you "got away" with needing only a mastectomy, is a fool.  Yes, I know that I am lucky that my breast cancer was found early, but I am not lucky that I had breast cancer.  And I am certainly not lucky that I had to have a mastectomy.  Period.  End of discussion.

So in the end we each have to deal with this in whatever way is best for us.  Grieve the loss, because it is a real loss.  Accept that it might take a long time to "get over" this, and in fact, you may never really get over it.  You may simply learn to live with it.  For me, reconstruction was a must because I wanted to feel normal.  Even with reconstruction, every day when I get dressed and undressed I am reminded that I had breast cancer, but at least I can go through the day without feeling like I have "breast cancer" stamped on my forehead (or my chest).  That helps me feel normal.  It in no way denies the fact that I had breast cancer, but it helps me live a normal life without always feeling the shadow of breast cancer.  That works for me because personally I have no interest in being the poster child for breast cancer.  But that's me.  And my only interest is in doing what's best for me, both physically and psychologically.  I couldn't care less about what anyone else thinks of my cancer, my treatment, my decisions, and how I deal with it.   If someone thinks that I got away easy with only needing a mastectomy, it doesn't bother me and it doesn't cause me to question my feelings because I know that they are wrong. 

And my additional thoughts today:

The only paragraph that I might rewrite is the one about being lucky. Maybe I wouldn't rewrite it - I still agree with what I said 4 years ago - but I would add some perspective. Over the past 4 years I have moved further and further away from my diagnosis. When I'm not on this board, and when my reconstructed breast isn't bothering me, I don't think about it at all. My breast cancer experience is in the distant past. I had a single MX and I still go for screenings for my other breast. They don't bother me at all. No anxiety, no fear; if anything, I worry less about my screenings now because I have the experience of having successfully made it through a breast cancer diagnosis.

But the other thing that has gone on over these past four years is that I've seen so many of my peers - women diagnosed with breast cancer at the same time that I was - who've not had the same good experience. So many have moved on to Stage IV and too many have died... but no one who had DCIS or DCIS-Mi (my diagnosis). I don't think any of my DCIS / DCIS-Mi peers are here anymore. They are all off living their lives. But too many of my peers who were diagnosed with invasive cancer are still here, because they need to be. So I've come face-to-face with the difference between DCIS / DCIS-Mi and other diagnoses. It's not just the need for chemo or Herceptin or hormone therapy even after a BMX, although I am grateful that I didn't need those treatments. It's the fact that I can move on with a much higher level of certainty and comfort that my treatments worked and I'll be okay. And that's huge.

That doesn't take away from the fact that being diagnosed with breast cancer, even DCIS, is awful. It sets us on an emotional rollercoaster. It confronts us with our mortality. It also doesn't take away from the fact that the treatment for DCIS, a mastectomy or rads or hormone therapy, can be difficult - just as difficult as it is for anyone else. All of that is true and no one should deny anyone with DCIS the right to feel the pain, both physical and emotional, of that experience.  

But I do think it's important for anyone diagnosed with DCIS (or DCIS-Mi) to also realize that the prognosis could be so much scarier and the treatments could be so much worse. And for this reason, I don't think we should get upset when those with more advanced diagnoses comment about our "luck" or downplay a DCIS diagnosis. Just as we want to be able to express the anger or fear or frustration that we are feeling, they have the right to express what they are feeling. How can I say that in their shoes, I wouldn't feel the same way? I know that someone who hasn't had BC can't understand what I've gone through so why would I expect that someone who's had chemo or who faces a high risk of mets would feel that I've had the same breast cancer experience that they've had? If I'd had to go through a grueling round of chemo and if I faced an uncertain future, might I be frustrated by the complaints of someone with DCIS? I might not like myself for feeling that way, but yes, maybe I would feel that way.

The answer? For me, I don't equate my situation to anyone else's. If I'm talking to someone with a more advanced diagnosis, I don't deny or downplay my experience, but I also acknowledge the differences between us.  Share what's similar, acknowledge what's different.   

This is a great thread -- thanks for reviving it!  I have received such different reactions from the medical professionals I have dealt with, that it's been really hard to guage how I SHOULD feel about DCIS.  My BS and radiologist treated DCIS as cancer which should be dealt with quickly, but the two medical oncologists I've seen told me that they don't consider DCIS to be cancer and don't even think I need to be monitored more frequently than annually.  This disparity really confused me at first and I didn't know how seriously to take the diagnosis or how worried I should be.  I was terrified when I realized that lumpectomy would be inadequate to remove the DCIS and that MX would be needed.  I'm over 7 months out from my MX and am at a much more peaceful place with it.  There is great peace with knowing you have done all you can.  After seeing the recurrence rate from lumpectomy and radiation, I felt a lot better about my treatment.  It does take some time!  I'm still vacillating among the first four stages of grief, but I feel closer to getting to acceptance.  

I do feel lucky.  "Lucky" is a hard word to hear from someone who has never gone through a BC diagnosis, but it is a good reminder from someone who has dealt with a more advanced cancer.  Beesie's own observations of the association between our BS stage and our survival rate remind us why we are lucky.  

I am glad to have found this community of women to discuss these issues with!  I think it would be much harder to process through this all without knowing how so many women feel the same way.  I also journal, and it has helped me a lot in moving through all the feelings and fears.  I had also been in a I'm-so-over-breast-cancer-and-surgical-recovery funk this fall.  I'm finally getting back to the gym regularly and getting outside for hikes, and it has been so wonderful for my mindset and energy level.  I'm starting to feel strong again after a long year.  It gives me a lot of hope for a great future.  

Great post Beesie.

All of us who have been through the testing process have lived the absolute terror and fear of a diagnosis which takes a long time to get over and move forward again.

I do feel incredibily lucky from how my journey started out (long story with a big benign tumor), but I think that is purely down to the fact that it took 2 months from start to finish, and I now know they originally thought I was at quite a late stage - so to end up with intermediate grade, small amount of DCIS I feel like I have hit the jackpot.

I have even hit the jackpot amongst my DCIS peers, in as much that I got away with lumpectomy only so I really should just put it behind me now, but I can't.  I can't shake off the feeling that it's in the shadows waiting to come back and bite me on the bum again.  I suppose that is what is takes from us once we've been though it, whatever the outcome

I understand how you feel ShaneOak xxx

Wow...just wow. Profound thread and makes me feel as though I have not even scratched the surface of what lies ahead for me in terms of emotions, decisions etc. I have just been diagnosed and have not a clue what my tx will be. I see the BS on Tuesday for the consult about tx and I am told most likely lumpectomy/rads/AI's cause I am er+/pr+ but I still am not sure about MX and that option. I am just worried about what they will find after the lumpectomy. Margins, IDC hiding inside the DCIS - these are the things I have been thinking about for the last several days pretty much 24/7.

If I have to check off a box that says I had cancer on any form, you can bet that I am saying that I had cancer and not a "pre-cancer" as that is the one thing I am clear on. If I am treated for cancer then that is what I have. I am glad it is early. Definitely happy about that. But, I am still terrified of what lies ahead.

Thanks for some clarity and for sharing.

Thank you LAstar. From your lips to God's ears. That sounds heavenly to me. I suspect I won't sever ties with the community all that quickly since there will be so many frightened newbies like me who will have questions. I am in social services so my nature is to help those. Also, I am a "pay it forward" type and this community has really helped me!

I can't even IMAGINE getting the diagnosis of DCIS or any BC without having done research on this forum and reading lots of posts here. I would have been terrified x 100 instead of x10. The community has been so important in educating me on so many things. I now know waaaaay too much about BC in terms of others. My doctors were impressed actually. They asked me if I had a "medical background" and I laughed and said "nope, just a lot of angels who are educating me with their experiences and pointing me in the direction of articles that are relevant and not a bunch of hooey" and they said "Sounds like a good place to get knowledge cause your information is dead on so far" HA! You guys rock!

GardenGirl, I had the same scenario with the MRI after the lumpectomy.  For me, the writing was on the wall but I chose a re-excision before MX.  I wanted to know that I did everything I could to avoid MX.  When my path report showed 3 of 4 margins were involved in the re-excision, it made it a lot easier to accept that MX would have to happen.  My BS said that this happens maybe once a year in his practice, but the vast majority of re-excisions are successful.  One interesting aspect of my re-excision was that my BS took a much larger area the second time based on info from the MRI.  One of the margins that was clear in my lumpectomy was involved in the re-excision, which is a bit frightening.  The re-excision was fairly simple and I recovered very quickly, so I had no regrets with trying it.  In my case, the DCIS was very widespread in my left breast.  Since it moves through the ducts, it is not surprising that my two areas were really connected by a lot of DCIS.  You can send your MRI and path reports to another surgeon for a second opinion.  When do you need to decide?  What grade is your DCIS?

Today I am coming to terms with being diagnosed with dcis, and possibly having a mx.

I been putting questions thru my head for my doctor, need to writ them down.

Like; why is the nipple removed? Does the breast still have sensation? What are my percentages of recurrent cancer if I only have a lumpectomy?

This time last week I was so against having a mx, now I see that it may be my best choice. Pondering doing a preventive mx on right side? It seems a bit premature to remove right breast when it is clear.

However my dcis was detected a year after a normal mammogram.

Hormone treatments? What and how will that help my odds on right side?

For me there has been a huge emotional side to a diagnosis of DCIS and a UMX. I sometimes wonder was I over treated, was this something my body would have destroyed had it been given time? I ask, was a MX really the only option? I had about 2 months from diagnosis until my MX so I had time to process, but I still have days where I can't believe I had to make this choice. Even did I make the right choice.

I know deep in my heart I made the best decision I could and now I just have to deal with what comes with that decision. My reconstruction has had it's ups and downs but I am starting to heal from my exchange surgery and I will get through this.

There is just so much to process with a BC diagnosis. DCIS may be an early cancer and as Drs told me "the best kind to have" it still changes who you are. But this to shall pass.