Feel alone. Anyone with mastectomy for DCIS?

DinaM~

WELCOME!!  I am a unilat. myself having had to make these same decisions back in July.  My doctor gave me these options: re-excision w/rads or a MX w/ immediate reconst.  My DH (dear husband) & I went home overwhelmed needless to say.  We did do our research & took into what my surgeon did explain about the reoccurance of the DCIS in the future w/ another lump/rads or do a MX which has <1% of it reoccuring.  I also was told that to reconstruct a radiated breast is difficult & that I was a good candidate for the immed. recons. w/implant.  I am 49 w/ 2 young boys (9 & 13).  After my single MX my surgeon was extremely happy that I had made this decision to have the MX.  I am too.  Looking back I don't think I had time to have anxiety.  It was like a roller coaster to me last summer...how easily we forget...a good thing.  Now that I have been there & done that I am at peace with myself & my future with my wonderful family that I have supporting me all the way!  If you decide on the immediate reonst. method...it is awesome what can be done  w/ plastic surgery.  I have implants in both breasts now.  My healthy side was augmented to balance out the two "girls".  They look wonderful!  I am so happy that everything I went through month ago is just a small memory now.

Whatever you decide...we are here for you!!!  You are not alone!!!  I, also, went to the Susan Komen Foundation website & watched/listened to some great discussions by doctors regarding DCIS.  It helped to make me feel confident that I made the right decision.  Having young children made me feel that a mastectomy was not an "overkill".  It has given me a new outlook on my future with my beautiful boys & awesome husband!

When you do have the surgery & decide on immediate reonst. join us at the Exchange City thread under the forum Breast Reconstruction.  Wonderful advice,information, & encouragement to be found there!!!  See you there someday!

God bless you!

NAE

beaglesmom~

Yes...I am on Tamoxifin for the next 5 years.  The side effects are less & less now...not as many hot flashes as initially.

NAE

Nae and beaglesmom,

 Thank you so much for  replying!  It's amazing how supported one can feel through this site.

When you were diagnosed, did you ever consider just doing a wide local excision, no radiation, and then change your diet/lifestyle?  I've been reading about alternative treatments in Suzanne Somer's book "Knockout.  I thought that since my tumor was small, low grade, "cribiform," --I thought it might be a safe option to do that.  But my oncologist/surgeon at City of Hope said the recurrence rates are still high. I brought up Dr. Silverstein's research about doing just excisions for low grade DCIS but she said that the results he had had not been replicated since.  I'm still confused, but I'm going to try to make a decision soon and then not have any regrets.  

Thanks again, and I'll try to get on the Exchange City thread.

Like NAE, my DCIS was in several quadrants of the breast.  I could have opted for the lumpectomy but was told radiation would be required at that point.  There was no way they could guarantee getting it all without removing the whole thing.  I wanted it gone with the least impact on my body and the best results that I could hope for.  It's been tough, but you'll find the right path for you.  I don't look back and regret anything.  I look back and think "I can't believe I've been through this" and do cry for the loss but also cry for the blessings I've had as well. 

Hey Ladies,

I am new to this and just wanted to add a posts...I have had surgery in Dec 2009 opted to have my right breast removed and had lymph nodes removed.  I was diagnosed with breast cancer a week before the surgery so everything after that was a blurr..

I remember the first time the I met the specialists and he looked at my film with my mammogram and ultasound scan.  And said to me after looking at you films I can tell you have cancer...That was the first time reality had kicked in...That was a kick in the face, and I ended up crying as I wasn't ready to be taken from this world...

It is now february 2010, and the world seems a lot different then it was before my diagnoses.  I have amazed myself how much you can accept and change.  I mean to say, surgery to have my right breast removed never seemed like I could live with that or even stand to look at my chest after my breast was removed.  The first couple of days I didn't stare at my chest, also found the hemovac bag annoying and eventually that seemed normal in my crazy world.

I guess eventually you get use to the things or objects hanging from your body.  And in your own time you will look at breast, and realise to yourself that this is my reality and this is my life I still own it...This only first stage of your treatments, but your journey is a long road.  Just have positive people around you and get some counselling if you need it.  Ask for help if you need it, and mostly take care yourself.

My next stage is chemo I will have 6 months then, this will happen next month...will be put on to tamoxifen after chemo.  But will have to wait for results from other tests at the moment have other issues that hve shown in CT scan.

But still remain positive on my outlook on life, as I have met many other women with similar diagnoses.  And feel lifted wen we are sharing our stories, as they understand how I feel and makes me feel free to be more expressive...And finding this website has been great and now I have a community of women who share the same fears.  But continue to support each other with their experiences and stories.

Hugs and kisses

Anne

I had a bilateral MX on January 12.  I have a few small numb spots, but most of the feeling has returned.  I do have a feeling of having a rope under my arms, and the worst the chest incision felt like was a rope burn across my chest.  However, I'm not having reconstruction, and that seems to be the source of most people's pain.  I occasionally have nerve pain, like a quick zap (no worse than a bad static shock).  The nipples gone is a bit disconcerting, but it's not that bad - I cut some T-shirts down the front so I could wear them when I couldn't move my arms freely.  Since they hang open some, I took the opportunity to get used to the sight of my chest.  That helped my partner, too.  Nipple sensation was never a big deal for me, which helps.  If you're a candidate for unilateral and nipple sensation is important to you, you have to decide whether it is worth the extra percentage of possibility of recurrence.

My decision was based on family history, lack of tumor, breast size, grade 3 lobular.  My mother had the same cancer as mine and she had a recurrence at 4 years - she died of it, so I decided to be extra conservative - went straight to B-lat MX instead of lumpectomy.  The bottom line is that we don't get to go back to our previous "normal" so we have to decide what we can stand for our new "normal."  At this point, my normal is sore underams, a slightly sore incision, slight loss of arm movement (do your stretches!), some fatigue that hits me suddenly and fear of lymphodema.  I have less fear of recurrence, at least.

Survivor guilt is such an odd place to be.  We've worked with a cancer diagnosis, yet we realize that our journey could have been more complicated....yet we still have worked with a cancer diagnosis, regardless.  For me, it all happened so quickly that I'm still trying to work things out in my mind.  My dx was at Thanksgiving, a bmx with diep Jan 19.  So, I'm looking "normal" but feeling very different than my body looks.  Thankful not to have done radiation or chemo, but feeling like I got off "easy".....but this isn't exactly easy, any way you look at it.

kcshreve~

I think many of us go through this "survivor guilt" stage especially when being diagnosed with a low stage BC such as DCIS.  I am thankful as well not to have had further treatment such as rads/chemo.  I would have to agree...DCIS is BC no matter how you look at it...we are fortunate that it was discovered as early as it did. 

NAE

My diagnosis was multi-focal DCIS on one side (3 spots) I had 3 separate biopsies.  1. Stereotactic core needle biopsy, 9:00 position, result medium grade DCIS 1mm ER + 2. Following an MRI showing 2 more areas of enhancement an ultrasound guided needle biopsy 12:00 position, result medium grade DCIS <1mm  3. MRI guided needle biopsy in the 3:00 position, result meduim grade DCIS (not sure of the size of that one....  the enhancement area was so big my ONC thought it was going to be like 5mm and she thought it was going to be invasive.. so did the radiologist.  I was BRCA1/2 negative (even though my family is of Ashkanaski  (sp?) Jewish descent.  I had a paternal aunt and her daughter both deceased from invasive breast cancer that was treated with lumpectomies and unilateral mastectomies which recurred and eventually   metastisized to other organs and killed them.  I had another paternal cousin who went untreated and without mammograms until she found something visible on her breast .. by that time it was invasive and in the lymph system and although she put up a fight for 8 years, lost her battle.  And I found out my maternal aunt had it too... single mastectomy then it showed up on the other side and again, metastized.

I had no problem after 3 biopsies and the threat of all that making a decision to have a bilateral mastectomy.  I am still in reconstruction.  I had an LD flap surgery, but was fortunate to have a surgeon who can do it without any back scars.  He worked with my ONC breast surgeon and she spared all the skin she could (still taking the nipple and areola) but this way my plastic surgeon was able to have enough skin to bring the lat muscle around and attach to the pectoral muscle and make a pocket for the Tissue Expander.

It has not been an easy surgery for me.  I am not comfortable and the TEs hurt and my range of motion is limited and my shoulder capsules are frozen because I have been over-protective of myself....ie I shot myself in my own foot!   But the end result will be great.  The scar is healing well... but I am lucky that way.  You can hardly even see my 23 year old C section scar ... I think my breast scar will fade pretty good in the years to come.  

I do have any love loss for my breasts either. I just can't wait to be more comfortable.  To be able to roll over in bed without discomfort.  

But again, through these boards and through friends and acquaintances I have met many who have far worse diagnosis and although we are the "lucky" ones, not having had to endure any chemo or radiation ... our diagnosis and surgeries are still huge and affect us in a big way.

As far as follow up goes.. I have not considered it.  My ONC surgeon has not contacted me at all since I left the hospital.  The last thing she told me was how lucky I was.... and how I am done with mammograms for the rest of my life!  (that was great news)....   In theory DCIS ...if it was really DCIS can't jump the tracks and if they took all the breast tissue, should not recur.... but I have already proved to my ONC doctor that her MRI she was 90% sure was invasive wasn't.....so maybe someday something will come back.  I hope not.  In the mean time I plan on just living my life to it's fullest.