Feel alone. Anyone with mastectomy for DCIS?

darmj

I am 39 years old. I have three kids age 12, 10, and 7 . I have a dx of dcis about 14cm in left breast and 1 in right. tomorrow I will go for bilateral mastectomy. I am feeling scared and sad and hopeful at the same time and I cannot decide which to settle on..  I feel alone as I don't know anyone who has gone through this. I have lots of people praying and visiting and calling but still feel like loosing the "girls" is loosing a huge part of me.and that I am the only one who sees that side of things. Everyone says at least it will be gone and you can live a long happy life.. This I know is true. but the other truth is this is life changing!! I am having reconstruction but I still don't know how I am going to feel with these strange boobs in 6 months? I appreciate the information and the sharing that I have read on this site. God bless all of you who have already made it to the other side of healthy!! I can't wait to be there..

Nedeza

Darmj ~

First of all....WELCOME!!!!  Second of all...YOU ARE NOT ALONE!!  I was dx'd w/ DCIS last July & had my single MX w/ immediate reconst. in August.  I had my exchange (implants) in November.  I still have further surgeries pending..a lift on my healthy side & a nipple recon. on my MX side this year.  This is a journey I never imagined to take 6 mos. ago.  I do know that without my wonderful "sisters" here I could not have pulled through my roller coaster of emotions.  I did not join until midway through my expansions in October.  I was totally lost!  Totally scared!  Totally life changing!  I have learned a lot through the support & encouragement I received through these forums.  It is nice having support through family & friends...I had plenty...but it is not the same as talking to someone who actually has been there & done that!  This is what you will find here!   Having mixed emotions are normal.  Feeling scared...feeling relieved...feeling angry...wanting to vent....all are welcome here...all are normal!  I thought the same about having implants & how I would feel.  I am 8 wks. post op now with my new "girls" & they feel marvelous!  It did feel strange at first but I am finally able to accept my new self.  May God bless you too & pray that you continue to join us as we go through this journey together!!!!

Hugs,

NAE

robinlbe

darmj - I am 2 weeks out of my bilateral mastectomy (no reconstruction)....I, too, had DCIS, and I also have three kids, although mine are 18, 17, and 12. 

I struggled with the "new body" issue before surgery, too.....even more than the cancer issue.  It would bug me when people would say, "I'd just cut them off and get rid of the cancer'...yeah, that's what I said too, when it wasn't me....and when it wasn't days before my surgery - when reality wasn't real. Now, that I'm two weeks, I'm not going to say it's any easier.....and some ladies tell me that even after two years they still miss their old bodies....

but at least it's done, and I can start healing physically and emotionally now.   Cry all you want now AND later...

if you haven't already, be sure and hook up with us on the January Mastectomy forum, too....it's all of us who have had or will have our mastectomies this January.

Blessings...Robin

neversurrender

Welcome Darmj - My BMX is scheduled for Monday (25th). I also have DCIS and have three kids, girls age 13, 11, 7.

I am struggling a little with the 'body' issues also.  I was very weepy yesterday when I finished all of my pre op testing.  It wasn't fear or anxiety, it was more of "this SUCKS!".  I have a flabby belly and droopy breasts, but they are MINE.  I would prefer to keep them, thank you very much.  But, after I had my cry, I pulled myself up and today is a new day.  I am anxious for Monday, I want it done so that I can begin the healing.

Robin---It makes my crazy when someone says something like that!  Like they are talking about getting a hair cut or clipping their nails. " Oh, yes, I would just cut them both off..la dee da...."  UGH!  Although, I must admit, I felt that way also....before it was me!

darmj...good luck tomorrow, I will send prayers and positive thoughts your way.

cimiche

Hi AmyD - I am exactly in your boat, and just started another post with similar concerns.  Has anything happened since?  I have not read all of your replies to this thread yet.  I feel guilty, too.  And a little 'out there'.  I am having DIEP in April (bmx 1/7), and even had one person tell me that I am so lucky and she wishes she could get a mx/tummy tuck so she could have a better figure! 

robinlbe

LUCKY?!?!?!?    oh, my goodness....people say the stupidest (I know that isn't a word) things!!!!

toni67

I'm scheduled for a mx in Feb. debating whether of not to get a bi-lat mx or just a uni-lat...one of the toughest decision I have to make, but need to make it soon.

Nedeza

Toni~

How did your healthy side look diagnosically?  My doctors said there was no reason to remove the other side.  I, too, had DCIS but low grade & less than 1 cm.  I had my single MX last August & exchange w/ augmentation on my healthy side in November.  I am very happy w/ my decision.  Everyone is different.  If I had ANY indication of ANY suspicions on my healthy side from my doctors...of course I would have done both.

Good Luck!  I will be praying for you...it IS a difficult decision to make but our thoughts are w/ you!

NAE

toni67

nothing wrong with the healthy breast. It's unremarkable actually. I'm keeping my healthy breast and will go with reduction for symmetry.

Nedeza

Toni ~

That's great!  I had a silicone placed in my MX & an adjustable saline in my healthy breast.  The adjustable saline has a port to add or remove saline to change the volume for a better match to my MX side.  At first I thought this is a strange approach but it is working out.  I will need a lift since my healthy aug. breast decided to drop.  All is good though...I saw my onc. yesterday & she convinced me there is nothing to be afraid of especially with my decisions to have what I had done.

NAe

darmj

Well I am 3 days after my bilat mx.. I must say I am still very emotional. This is the hardest thing I have ever had to deal with. Although relieved to have the cancer gone , It took a part of me with  it.  The pain still here. I am trying hard to keep a pos outlook on things. I have a great family for support and tons of food brought by my church family and friends. there are lots of well wishes but at the end of the day I still have lots of work to do on my own. Ugh!! wishing it was over.....

darmj

neversurrender.. God bless you and be with you on monday!!

toni67

I'm scheduled for a uni-MX for Monday (Feb. 8). I'm hoping for a speedy recovery.

robinlbe

Good luck, toni67.....we'll be thinking of you....have you joined the february thread yet??

My BMX was Jan. 6th, and I'm on the January thread...it was really helpful to be on there with other gals who were going through mastectomies the same time....

blessings...

Nedeza

toni~

Thoughts & prayers for you on Monday!  Are they putting a pain pump??  If you are not familiar...it is called "On-Que" pain pump.  It is a device w/ a tube  that is attached to your incision site which then delivers pain meds in small increments around the clock.  It lasts for 4-5 days but it was HEAVEN in controlling the initial pain.  Ask you surgeon if he does this?  Not all doctors use this.  It is worth asking for though!!

Take care,

NAE

neversurrender

I also had an "ON-Que" pump.  I would advise requesting on also.  After my diep, I had no pain in my abdominal incision at all, thanks to the pump. 

toni67

I will ask about the "on-que" pump. I hate pain.

Nedeza

toni~

I hope you do get the pain pump....but be sure to have some GOOD painkillers on hand when the pump runs out.  I took Vicodin round the clock for about another week.  The pain pump is awesome but as soon as it runs out...a few hours later you will realize how helpful this pump was!  Not to scare you but as I emphasized...have some goods meds.  Also, don't forget the "prunes" or stool softeners!  When taking narcotic painkillers it "backs you up" so be careful & eat a lot of prunes...they work better than just the juice.

Keep us posted!

NAE

Anonymous

colace and senekot work wonders for the constipation (that comes from the pain meds)---and drinking plenty of fluids helps too.

Anne

Nedeza

So true...PLENTY of water!!

NAE

beaglesmom

Good luck to you Toni on Monday.  I did have the on-que pump and it was amazing.  I kept thinking why does my belly not hurt at all and then realized after about a day that I had this thing hooked up to me.  I am 8 weeks out, back at work and functioning pretty normal. I cannot wait for stage II.   Something else that I found worked great for those nasty side effects of pain meds is a juice called Plum Smart.  It actually tastes pretty good too. 

TAMARA-H

I'm not sure if this is the right forum, but I need some advice. I am a 35 year old  dx with high grade comedo dcis in my left breast. I had a lumpectomy with clear margins. There was suspicion over some calcification in the right breast. MRI guided biopsy showed atypical cells. So, I had a lumpectomy on the right breast. Right breast turned out to be normal, no cancer cells. My oncologist is telling me that if I have radiation and take tamoxifin since I'm so young that my chance of reoccurance is higher, maybe closer to 20%??? She said I could choose mastectomy or radiation. I'm not sure what to do. I'm petrified. Am i jumping the gun by choosing a mastectomy? or is radiation enough?

sweatyspice

In my opinion, the question is can you live with a 20% chance of re-occurance in order to keep your breast?

I had a similar choice / recurrance rate.  I was not emotionally ready to lose the breast, so I took the gamble.  The way I'm choosing to look at it, I've got bonus time with my breasts even if I have to lose them in the future. Of course, I might feel differently if/when I get bad news in the future.

Other women wouldn't be able to live with the anxiety and fear of recurrance.  It's a very personal choice between 2 awful options.

Petrified and having a hard time with the decision is normal.

redsox

Tamara--

You have clear margins, albeit with some atypical cells.  You can take some time to decide.  Go to see a radiation oncologist and, if you have doubts, a surgeon and plastic surgeon and explore all of your options. There is no right answer.  Keep at it but don't feel you have to decide asap.

JAT

Tamara-- Because of your young age, I assume your doctors have recommended genetic testing. If you do test postive for the BRCA mutation, that might sway you towards a mastectomy.  Definitely get a second opinion as you make your final decision. Like Sweaytspice said, only you can determie how much risk you can live with. I'm a  constant worrier so I did the bilateral (I was so small breasted that a lumpectomy would have left me with so little, that a mastectomy with immediate reconstruction was my choice after meeting with 2 breast surgeons and a plastic surgeon). Good luck with your decision.-- Julie

Nedeza

Tamara~

I agree with Sweatyspice...it is a matter of if you can live with that kind of percentage.  Everyone is different.  I was given the same facts regarding choice & reoccurance.  Once diagnosed & given options for re-excision w/ radiation or a MX...my husband & I researched the odds of reoccurance after another lumpectomy w/ rads & decided on the MX.  It was a choice I made & am happy with my decision.  I also was told that it would be more difficult to reconstruct a radiated breast thus I had an immediate reconstruction.  As Redsox pointed out...there is no right answer.  Since you are so young...did you have genetic testing as JAT questioned?  This would effect my decision if I fell under the higher risk catagory.

Whatever you decide...God bless you & all goes well.

NAE

dmorgan2

Tamara-H, I decided to have a MX and I haven't regretted that decision. That was almost 3 months ago and I'm glad I did. I "only" had DCIS in the left breast. I had had  a lumpectomy first with clear margins. The reason I decided to go the mx route is because I personally didn't want radiation -especially on the left side- and I didn't want to worry about recurrence. But it was a HARD decision. I agree with everyone else's comments--it's a personal decision and varies for everyone. I think you're going through the hardest time right now with the decision-making process. But continue to ask opinions and read whatever you can. I did all that and prayed and prayed. I'll pray for you that you'll know the right thing to do for you and that you'll have a peace. God bless.

bookart

I was dx Dec 11 with DCIS left breast, and like JAT knew that with my small breasts it didn't make much sense to do a lumpectomy.  Since I was 4th generation with BC, I elected to do bilateral, which my surgeon agreed was the best choice.  At a fairly healthy 48, I felt like I could benefit more from not having to worry so much. My partner and I also decided it was fine for me to be an Amazon warrior princess and not reconstruct.    Had surgery on January 12, had very little pain in hospital but tend to push myself physically and have had more pain at home.  Mostly, I feel like I have a rope under both armpits, and a bit of a rope burn across my chest, although that is fading.  I hope that the "rope" feeling will fade with time and exercise, too.  I have had great support from my community and I feel kind of weird about it - I did this big surgery over a tiny little bit of cancer.  I KNOW why I did it, and I'm so lucky that I don't have any follow-up needed.  I feel some survivor guilt - I got off so easy compared to most people.  I don't want to guilt myself into a recurrence, I don't want to talk about it a gazillion times, I just want to go on with my life.  And yet it deserves some of my time and attention, obviously.  So, I'm feeling weird.

beaglesmom

I am 44 and was diagnosed in Sept with multiple areas of DCIS in my left breast.  I could have chosen to have a disfiguring lumpectomy followed by radiation and then reconstruction.  After alot of thoughts and prayers, my husband and I decided together to have a mx of my left breast and to leave my healthy breast in tact.  My genetics test results coming back negative and a clean MRI of the right breast played a huge part in this decision. 

I had a mx and DIEP stage I on Dec. 11 and do not regret this for a minute.  I have a fantastic group of doctors who counseled me through the decision.  God bless them all!  Like many other members have said, it is completely personal.  Some women don't want to lose the breast for anything and others say take them both.  I wasn't ready to give up both. 

Bookart -- I have also had the rope feeling. It does get better. Hang in there.  Physical therapy has done wonders for me.  I also completely understand the "survivor guilt" .  I know that I AM a survivor, but for so many out there to be struggling with so much worse, I feel sometimes like I don't deserve to say I am a survivor. My husband and friends remind me all the time that I still have scars, both physical and mental and, through it all, I am a survivor.  Does that make sense?

Nedeza

beaglesmom~

It makes sense!   I totally agree with your feelings of being a survivor but yet have that "survivor guilt" because we did not go through extensive treatment or were not as advanced as some women with BC.  I wasn't ready to give up both either.  My DCIS was multifocal...in different areas of my Rt. breast.  My Lt. side did not show any signs of BC. 

We are SURVIVORS...we were blessed to have been diagnosed as early as it was!

Hugs,

NAE