2nd Mastectomy after Mammo Scare

HeyJude

2nd Mastectomy after Mammo Scare

HeyJude

Two years ago I had a mastecomy: ER positive, stage 2b, DCIS and a fairly large IDC tumor in the same breast; 4 months dense chemo and full reconstruction. TWO DAYS after the anniversary of this event I had a mammo that scared the sh** out of me. The mammo turned up "something suspicious" so my doctors rallied and got me in for immediate biopsies the same day. I have not felt that kind of fear and grief in such a long time -   it took my breath away. The idea that I might be once again be held prisoner by this disease was beyond heartbreaking. But at that moment I decided to have a mastectomy, regardless of the pathology report. I cannot go through this agony for the rest of my life. My breast, that I tried so hard to hang on to when a bi-lateral was "suggested" two years ago, is no longer important to me. I am whole without it and I need to remove it so I can have peace of mind and hope of a longer life. I scheduled my surgery for two weeks from now and am preparing myself for another year of struggling with the aftermath of surgery and reconstruction ....but it is short-term pain for long-term gain. I dread the process but cannot fathom another experience like the one I had two years ago. My prayers and love go out to everyone and I'm hoping you can respond if you've been in a similar situation. I don't really have anyone else to talk to about this decision who can personally understand the rationale.

HeyJude

twink

HeyJude,

I held my breath as I read your post.  I can so empathize with you and you've confirmed my decision was the right one for me.  I hope your pathology report is good news and I wish you the easiest of recoveries from your surgery and reconstruction.

Hugs.

t

smithlme

HeyJude,

I received a call today to go have another mammo because the one I had last week needed to be redone. It was my first post Mastectomy mammo. Friday will be my one year Cancerversary. I cried my way into a 10:15 appointment tomorrow morning. If this mammo shows anything suspicious, I will have my breast removed as soon as possible. I can't imagine another year like the one I just went through.

I've had a rip-roaring headache all day and feel like I'm moving on auto-pilot. My stress level is over the top so I plan to walk on my treadmill, take a shower and take something to knock myself out. I just want to live without this constant fear...

Linda

Member_of_the_Club

I was in the same position and came to a different conclusion. I had stage IIb IDC as well, three years ago -- lumpectomy, chemo, rads. This past Fall I had a lump that was biopsied, some calcifications that showed up on a mammogram and were biopsied and the grande finale, a birads 5 (highly likely to be malignant) finding on an MRI that was biopsied. These were three different spots, two on one breast, one on the other. And ultimately they were all b9.



Of course I was anxious but when it was all over I was thrilled to still have my breasts. I made it through my cancer with my breasts and I wanted to hang onto them. They aren't much, but they are mine.



Everyone is different. Do whats best for you.

HeyJude

Linda, I am thinking good thoughts for you. It seems pretty cruel to have to endure this more than once in your lifetime so I'm hoping that you will hear all is b9.  I am feeling much better about my decision and getting my head wrapped around the idea. My boyfriend is being a prince and work and family are all supportive.  I just wish in my heart of hearts that I could skip to the end and bypass all the pain and drains and physical therapy....but then again, it beats the alternative of constant fear.  Be well and let us know how your mammo turns out. And breathe.

Jude

smithlme

Hi Jude,

I had my mammo today and there's a 2mm calcification that the doctor isn't comfortable with. With my history, she's having me have a biopsy on Thursday. I am numb, scared and terrified. Thursday can't come soon enough...

Linda

jerseymaria

i just want to offer my hugs, prayers and support to all of you.  so many of us are going through a living hell that sometimes i know i don't know what to make of it.  you're right, once is enough to go through this but sadly that is not always the case.  my prayers are -for those waiting for biopsy results - a b9 result and those awaiting surgery, a speedy and easy recovery.

lvtwoqlt

Hey Jude, I had 2 previous abnormal mammos which resulted in biopsies (once in each side) over an 18 month period and after the 2nd one my surgeon suggested bilat mast and put me on tamox. (I have family history of OC in aunt at age 37 and BC in mom at age 58) He told me to let him know my decision at my next appt. Well I went for my 6 month mammo and what do you know, it is abnormal again in the right side. When I went in to see him after the mammo, I told him there and then I want these ticking time boobs off. We did the biopsy the next week and it was DCIS. I had my bilat surgery on June 1 last year and am nearly finished with recon. I am grateful that I did not need chemo or rads but I was glad to get rid of the ticking time boobs.

Linda I am hoping for b-9 results on your biopsy Thursday.

Sheila

lemonpie

HeyJude... I can very much relate to your situation. I completed all my treatment for Stage 3C, IDC in Dec... went for my first follow-up and the mammogram showed a suspicious area in my remaining breast. Needless to say I am petrified at the thought of having cancer again.  I am scheduled for a biospy Apr 1 and I'm praying its nothing, but regardless of the outcome... that "good" breast is history....  I'll be thinking of you and hoping for B9 results on your biopsy......

FYI.... HeyJude was the first song I danced to when I was a kid!!! 

kcq

I must have been in shock!!!---I was dx 5/1/07 with ILC in left breast.  I lost my mother to bc ten years ago.  I started chemo in June and am currently doing Herceptin.  In September (my mast and recon was in November) I had an MRI that showed an abnormalty in my other breast.  My brain shut down-I was in denial.  I went ahead with my unilateral mast.  There was no way I was going to lose both breast at the same time.  Plus, my onc told me that if it were cancer and it lived through the treatment he had already given me, then I would have to go through a stronger treatment process.  So, I decided to wait the six months for another MRI.  I had that MRI done a few weeks ago and I am very, very fortunated.  Everything was normal.  I dont know if I was in shock when they first told me that the MRI showed something in the other breast or my faith was high-----either way, I am glad that it worked out for the best and I pray that I will not  have a recurrence.

HeyJude

thank you all for your input and kind words. I am feeling firm in my decision now but praying for a day when we won't have to amputate parts of our bodies to prevent the spread of disease.

Linda - how did your mammo go today? You must be so exhausted from the roller coaster you've been on...

HeyJude 

HeyJude

Hi everyone. Had the right mastectomy about seven hours ago. Sitting in my hospital bed at 2am trying to sleep but I am kind of distracted by all the wacky noises. But I am thrilled to have it behind me! As my partner said today, "it's all about recovery now and you know how to do this." He's right. Sadly I do.....but I have a real feeling of peace now that I did't have before. Love and hugs. HeyJude

Addisyn

I was diagnosed with Stage 1 BC at the age of 48.  At that time I opted to undergo a lumpectomy, had chemo and rads.  Every year I went through a battery of tests mammogram, ultra sounds, bone scans, CT scans, and more recently PET scans. 

About a year ago I had a suspicious lump on my right breast.  My initial cancer was in my left breast.  I was called back for another mammo and an ultra sound.  I was then sent to have a biopsy of the lump.  I am on the table in the exam room and the physician comes in reads the ultra sound.  She says I don't know why you are here and says I don't need a biopsy and sends me on my way.  Well to say the least I was a bit taken aback.

I went back to my PCP for a follow-up and he scheduled a mammo in six months.  So I had a lot of time to worry and think.  Could I go through this again was always in my mind.

My history sucks.  No other way to put it.  All maternal and fraternal aunts had breast cancer, my maternal grandmother and probably a few I don't know about. 

Finally back for the next mammo and it is suggested I undergo genetic counseling.  So I watch the film and decide to have the BRAC testing done.  The way I figure it is a diagnostic tool and I am taking advantage of it.  I have a 23 year old daughter, a sister and two nieces.  The rest of the females in my family with the exception of my mother's youngest sister have all died of cancer in one form or another.

The mammo comes back inclusive as well as the second ultra sound.  My BRAC results are "suspicious" which leaves me with a very bad taste in my mouth.  I remember going home after discussing my BRAC results with a geneticist and basically howling at the moon for 24 hours.

When I had done the genetic counseling it had stuck in my mind the option of a bilateral Prophylactic mastectomy.  I first discussed this with my sister.  Well she was of no help whatsoever.  She prefers the "if it happens to me" then I will worry course.  Well it did happen to me and I was beyond terrified it would happen again.

Well going through my annual tests I told my oncologist I was considering a bilateral mastectomy.  He was very supportive and checked with the surgeon who had done my lumpectomy 11 years ago.  He was in network with my insurance plan so I set up an appt. the next week to see him. 

I think I had made the decision already to have the procedure done because when I saw my surgeon he said I was a candidate and to let him know.  That day I scheduled my surgery for the following week.  I am now about a month out from having the surgery.

The one thing I found out this had to be my decision and my decision alone.  You might wonder why I say that.  It is really quite simple.  Now I am dealing with some of the emotions in the aftermath and I know I made the right choice for myself.  When it gets hard I remember my statistics.  I had a 85% chance of recurring BC and now it is 2%.  For me that is enough but perhaps for others the idea of cutting off a part of your body is intolerable.

I did not have reconstruction at the same time and am now thinking about that option.  I will have time to think because my next step is a Prophylactic hysterectomy.  I have had 8 precancerous tumors removed from my colon and if I could have that out I would.  My mother died of colon cancer 5 years ago.  She never knew she had it until she fell ill.  They opened her up and 3 weeks later she was gone.

Well as you can probably tell I need to tell my story.  The emotions for me are running fairly high at the moment.  My husband is the strong silent type who can't or won't discuss emotions.  When I was initially diagnosed with BC he was the one that fell off the chair.  I make my own health care decisions and unfortunately have no receptive family to talk with. 

I was diagnosed after my BC with severe clinical depression and this just adds to the situation.  I have always been a strong person due to necessity but quite honestly right now I need some support.  It is hard for me to reach out because I am usually the one giving, not getting.

I have two therapists.  They listen which is fine and good, but I want feedback from those who are in the know.

I remember when I was around 16 my fraternal aunt was diagnosed with BC.  She was a nurse and opted to have no treatment.  I was at that crossroads.  It reminds of the poem by Robert Frost, The Road Not Taken.  I know I have taken the rigth path for me.  I guess I just need a few walking partners.

Addisyn

HeyJude you are so right about the peace that having this procedure has brought.  I wish you well.  If you have any questions along the way I hope I can be of some support. 

HeyJude

Addisyn,

Wow...your story was a tough one to read...having lost so many family members. That is overwhelming in and of itself.  But after reading your history and decision process, I am glad you are moving ahead with taking control of your personal survival rate. The heck with the statistics, you need to feel safer in your own body; period.

I got home from the hospital this morning and I am bruised and flying on pain killers, but I'm in my own bed and on the other side of this for now. I understand what you mean when you say its hard to find people in your life you can really relate to your situation, which whether we like to admit it or not, is pretty difficult. Always come back here to bc.org to chat but you should maybe also try to get into a volunteer organization where you can meet other survivors. I did the Komen Walk last year and met several terrific women that I'm still in touch with and can talk about these terribly intimate decisions.

I wish you some peace; and people in your life who will listen and be there for you. Thank you for sharing your story and keep us posted on how things go. Here for U!!

HeyJude

Addisyn

HeyJude,

Isn't it nice to be home.  They take wonderful care of you in the hospital, pumping you full of pain killers, and the like but there really is no place like home.  I was so doped up at one point I started to call my husband on my cell and woke up, I don't know how much later, with the phone in my hand and four numbers pressed.  One was wrong.  

Take it easy and let your body heal at its own pace.  There is no right or wrong amount of time.  I tried to do too much too early and just tired myself out.

It was the most obvious things that got me into trouble.  Thinking I could pick up a heavy bottle of laundry detergent.  Reaching up to open the shower curtain.  It is amazing how many chest muscles are involved in those simple tasks.  I think you take it all in stride until you feel that twinge telling you don't go there.

Rest easy and thank you for your kind words. 

Addisyn