Is anyone ever confortable with their treatment choice?

horse-n-around

How comfortable were you when you made your treatment decisions? 

I am current set to have a BMX on Feb 16, which in my mind is overkill, but my gut is telling me to just get it done and have everything over with (yes I am aware there are no guarentees but the likelyhood is extremely low of get BC again). 

  My gut says something is hiding in the left, I met with the Onc and he tells me that  no tests (Mamo, US, MRI) are super accurate at finding DCIS and that the calcifications are the biggest key.  The calcifications are what led to my journey here.

  I already know my right side needs to get addressed (see dx below).  My right side also has Atypical Ductal Hyperplasia, which has me a bit confused. I did some reading up on it and it appears to be a pre-cancer

I just keep flip flopping on what I want to do,  so many "what ifs" and "could happens".

the waiting is just making my mind go crazy - rethinking decisions and keep wondering if its the right decsions

Deirdre1

Horse-n-around:  I remember being exactly where you are and it is so overwhelming!  I flipped/ flopped sometimes several times in a hour let alone a day!  There are some women who have stated that they are very happy with their decisions.. for me it was like you described above all the way up to the surgery and then my surgery went bad so even after I had my concerns. To this day I wished I had not taken off the unaffected breast.  I'm more than 3 years out now and it is only in this past 6 months or so that I am becoming more comfortable with the new me...  I still flip flop, but my mind has gotten use to seeing the new breasts and I think that does help - if I had had a nipple sparing mastectomy I think that would have helped even more.  What I also believe very strongly is that if we were all encouraged to have a therapist on the list of our specialists it would be so much easier to hear our own voices since that is their job..preferably a therapist who has experience with cancer and even bettter one who has had experience with individuals going through breast cancer.  What ever you finally decide I hope all goes well and that you come to terms with it after the fact very quickly..  Best, Deirdre

azul115817

Horse-n-around,

I had a small area of DCIS according to scans, and my surgeon encouraged me to have a lumpectomy.  Intellectually this made sense to me, but emotionally it left me feeling very uneasy.  I worried about the higher recurrence rate, taking tamoxifen, and having YEARS of breast scans in my future (I'm 44).  

Despite my worries, I opted for a lumpectomy.  It turned out 2 of my margins were not wide enough, so then I had the choice of reexision vs. mastectomy.  When I chose to have the mastectomy (bmx), I felt immediate relief and knew I had made the right decision for me.  Many would consider a bmx overkill, but since my surgery in October, I've never once second guessed that decision.

Cancer is so unpredicable that there is no one right decision, and there are so many variables to consider.  Good luck with whatever you decide.

Heidi

FireKracker

DID YOU GO FOR A SECOND OPINION?

Mandy1313

I second what Granny Duke says---get a second or even a third opinion. You need to be comfortable with your decision BEFORE the surgery.  Once it is done, you can un-do it.

Sending hugs to you.

Mandy

FireKracker

I had a very big dr.make quite a mistake on me.please dont rush into anything.it took 3 drs to fix me up.do your homework.And when/if you go for 2-3 opinions bring a tape recorder.The sistas told me that.They know everything.Ill be prayin for you.Breathe.

Anonymous

I also had DCIS and the one (and only) good thing about it is you have time on your side- time to research all of your treatment and reconstruction options, get second opinions and find the best surgeons for you.  Find out the pros and cons for every decision so you're prepared.  But I think it does ultimately come down to following your gut.  I was also given the choice of lumpectomy/radiation or MX.  I agonized over my decision for months but something kept telling me to go with the BMX.  My final pathology report showed multiple areas of DCIS that had never shown up on any mammogram, US or MRI.  I was almost relieved because I stopped second guessing my decision once I heard that.  Educate your brain and then listen to your heart.  I am going to second what Deidre said, though, and urge you to find a good therapist to help you navigate all of this. Good luck to you.  

rianne2580

horse n around

I am in your shoes right now. I have dragged my feet to see a BS. I did not like the one I thought I would like from Loyola. He was abrupt and rude to my husband who wanted to know why I survived 17 yrs with DCIS and no invasive cancer. Rather than say this is a gray area and we're not sure, he gruffed " if this were my wife she'd be in surgery." 

 My next appt. is tomorrow with a female BS, excellent reviews from those who have seen her. I have no idea where I am going with this. The issues I feel I face are:

1. Mastectomy may avoid radiation and tamoxifen. I have the name of an excellent plastic surgeon at Univ of Michigan Med Center. I will lose my breast forever, no going back.
2. Lumpectomy and radiation...I get to keep my breast, provided no further cancer or DCIS is found. If it is found, back to mastectomy.

1. Neither guarantees freedom from cancer. Recurrence is always possible.

It is that simple. I fear the drugs, the radiation and anything I have to take by mouth long term. I feel the side effects can be way worse than the benefit. So that leads me to the surgery, but I don't want to lose my breast. I have read and talked to many women who found it more devastasting than they anticipated. Maybe I will shoot for another 17 yrs, just the way I am.

I totally understand your predicament and will post the final decision I make.

Rianne

 

horse-n-around

I bascially have had a second opinion, kinda sort of.    The BS gave me all the options along with some of the side effect concerns (IE: radiation can scatter due to having existing implants, along with radiation causing capsular contraction over 50% of the time). She suggested I would need hormone blockers.  I then met with the PS. He confirmed my radiation concerns with already having implants, and damage done to the tissue from it.  I met with the Onc, he confirmed that to do nothing was very dangerous in my situation.  Would recommend the hormone blockers if I did a lumpectomy or MX on the right side, he did say it was optional but recommended it.  We talked alot about re-occurance and so forth.  So I know I have to do either a BMX or UMX.  That is really my choice.  Both the BS & the Onc said without actually saying it that the BMX wasn't really necessary, but it was a pretty good choice if I wanted to avoid tomox and lots of future monitering.  The PS said if I was his wife (who is my age) he would recommend highly staying away from radiation.

ladyod

I am one year out---bilateral mx was on 1/25/10.  Similar circumstances:  dcis confirmed in right breast, multifocal so had to have mx.  I chose to do a bilateral and I am so glad that I did.  I wavered in my decision before the surgery, just as you are.  But I can tell you that I do not regret it one bit!  I look symmetrical now after my reconstruction and I think my shape is beautiful.  And they found aplastic pre cancer cells on the left non cancerous side!!!  My surgeon told me I would have had to go through it all again, perhaps with something even more serious had I not done both when I did.  No one can tell me it was that I was wrong to do so, although I had some try before the surgery.  Ultimately it is your decision and you have to live with it.  For me it was a no brainer.....no more worrying for me!   PS  A year makes a world of difference!  Life does return to normal and I am so happy now.   Good Luck and God Bless!

PSK07

I am three years out from my dx and treatment and haven't regretted any of my choices.

I had a partial mastectomy/lumpectomy in my right breast for DCIS, and followed it up with 6 weeks of radiation. I got my dx at the beginning of August and finished rads on 12/31/07. In the middle were biopsies, mammograms, MRIs, consults, and 2nd opinions (for rads).

A year later I was DX with LCIS and ALH and and more surgery (there was a lesion which the radiologist and my surgeon both felt should be removed).  I'd had a miserable consult with an oncologist earlier, so wanted to find someone who would be interested in me and my risks...no chemo required (duh) no blood tests etc. I did some searching and found a really good onc who counseled me on my case, risks, and what could do to minimize risk over the long term. I've been on Tamoxifen for 2 years now and have had minimal SEs.  I see the onc every 6 months and have mammos and MRIs yearly.

I wouldn't go back and change anything. But - and this bears repeating - it worked for me and my case. The most important thing a rad onc said to me is to not save something for "the next time". We don't want next times - we want things resolved the first time. Your first time is the best time to get rid of the monster. Whether that means MX or lumpectomy, rads or not, tamoxifen or not is totally dependent on you and your risk tolerence coupled with your pathology.

I hope you get your questions and concerns answered and resolved and go on to have the right and best treatment for you!

take care. 

CTMOM1234

Agree with what Pam wrote. I had a lumpectomy (aka partial mast.) and 6 weeks of rads. Was given this option or mastectomy.

None of us has a perfect "Get out of jail free" card, but I am at peace that I made the best decision for me with the information available. No regrets.

IronJawedBCAngel

It will be six years for me since diagnosis in April.  I have no regrets, and have never questioned my choices in regards to my lumpectomy, rads and tamoxifen.  I am very happy with my physical appearance, do not worry much about recurrence, and lead a pretty happy, good quality of life. I did the best to educate myself, and made the best choice for me. There are no guarantees in life, and I have absolutely no control over whether I recur or not, so why worry about something over which I have no control. I could also get hit by a bus tomorrow.  I just try to enjoy each day and the fact that on this day, I do not have cancer.  Life is really pretty darn good!

Halah

Even though my BS said I didn't need to get my good breast removed, I was bound and determined for a BMX no recon because I did not want a recurrence, and also I was concerned with having one large boob left (a DD). As it turned out, post-op the 'good breast" (actually both breasts) had atypical lobular hyperplasia which was not found by any tests prior to surgery.

If I had it all to do again, I'd do the same thing. I never look back. No regrets.

I hope you can find that sureness in your search for what is right for you.

Mindy xxx

martiparty

I was diagnosed with DCIS in the left breast as well as "atypical" cells in the same breast.  The type of cancer was very aggressive though.  I had an excisional "surgical" biopsy b/c the calcifications were too close to the chest wall.  Then I had three more needle biopsies (one in the left & 2 in the right)  By then, I was through with it all.  My doctor told me to make the choice for myself that would help me to take this "book", put it on the shelf, and go on with my life.  I chose bilateral mastectomies with reconstruction.  I am still happy with my choice.  I had the surgery on Dec. 20th and have tissue expanders in.  These will be exchanged for implants in the future.  I have had family members & friends who had lumpectomies, tamoxifen, radiation and yet still had mastectomies.  I just did not want to take the chance of going through all that if I didn't need to.  I also have a friend who had the lumpectomy about 10 yrs. ago and is still cancer free.  Yet, I am very satisfied with my choice.  My doc had told me that if I chose the lumpectomy & radiation, that I would definately have more biopsies in the future.  She said I "light up" under the MRI.  So, I am glad to not have to go through that anymore.