What should I expect to REALLY happen?

arbojenn

Diagnosed with recurrent breast cancer in the mastectomy side that I had reconstructed after 10 years.  I am waiting to hear the results of a biopsy of a lymph node on the OTHER side to see if that is a spread or a new, or maybe even nothing at all.

I am on preadjuvant endocrine therapy and the Femara is working after only a month!  The plan now is to have the reconstruction removed, radiation, the other breast removed, and continuation with endocrine therapy or chemo.  (I don't think I will need chemo if the AIs are working.)

Anyway, is taking surgery off the table a possibility since the Femara is visibily shrinking the tumors?  IF they go away all together, should I still do the surgery and rads to be sure?  I just want to get this over with and get back to my life.

 Thank you!  I would appreciate those of you with recurrent cancer sharing your stories of how you go to the other side of this and got your life back.

pitanga

Arbojenn,

First of all let me say how wonderful it is to hear that the Femara is being so effective for you after so little time! One woman´s victory is a ray of hope for the rest of us!

About whether you will have surgery or not, I will share my experience but our cases are probably not too comparable. I had a local recurrence after 9 years and mastectomy was first on my doctors' plan of action. But my original surgery was a lumpectomy, so  there was still breast tissue to be removed.  Whereas you had a mastectomy already, so no breast tissue left to remove. Where is your tumor? this makes a difference. I have a met to the cervical spine that because of the location is not operable so the strategy is just rads and AIs.

I can sure relate to your desire to get back to real life. My recurrence dx came in February, followed by zillions of tests for mets and mets dx at the end of May. That plus mastectomy, reconstruction and adjuvant therapy my life has made my life a morass of cancer treatment. I still have surgery to do on the other side --a lift to attempt to bring it up to the unbelievable, gravity-defying height of the implant, LOL -- and still have rads and AIs looming on the horizon. Like you I can´t wait to get my life back and in the meantime am gritting my teeth and praying for this to be over as soon as possible.

Lisa

arbojenn

WOW!  You have been through the wringer!  I am so sorry you have mets to the spine.  How did you discover that?  Mine is limited to the tissue surrounding my reconstruction--might have spread to the other side.  Do they have you on AIs yet?  I hope they will work for you, too.  Have you had your mastectomy yet?  Are you going to do reconstruction at the same time?  I originally had my mastectomy first, then chemo, then started the endocrine therapy with tamoxifen, but had reconstruction about sixth months later.  Kept on with the tamoxifen for five years, then switched ot Femara for about a year.  But my bones starting thinning, so I quit.  You think after five years you are home safe.  Guess I should have kept up with the Femara longer.  I hope we BOTH get back our lives soon!

lovinmomma

Well my story is a bit different, but I had a great response to chemo and my lumps shrank to feeling nothing, nothing being seen on scans. When I had the surgery the right breast still had residual cancer and my nodes were still positive. It was good that they were gone.

arbojenn

Whoa, lovinmomma.  That gives me cause to think I SHOULD have the surgery and rads.  Better be safe than sorry.  How are you feeling now?  Are you doing okay?  Are you still getting AIs or tamoxifen?  I see that you are quite young for a bc patient.  I hope you are doing great.

pitanga

Arbojenn, after I got the local recurrence dx they sent me for a bone scan then an MRI and it all unraveled from there.

When, after 5 years they started saying I was cured, I was dubious. But after six I started to breathe a little easier..more so after seven, then eight..when I hit 9 I was sure that bc was in my past so I wasnt even fazed when my mammo came back with suspicious calcifications and they sent me for a biopsy. When I got the results I was absolutely stunned but they said not to worry, it is just a local recurrence so you´ll have a mastectomy and that´s the end of it. I believed them... Then came the mets dx. The whole sequence of events has made me pretty cynical I must say.

I am no dr. but tend to agree with lovinmomma, surgery is more of a sure thing than shrinkage. The various therapies can shrink things till they dont show up anymore but the imaging techniques to verify this have limits. there might still be microscopic stuff they cant see. I sure wish I could have surgery on this metastasis. but on the other hand, I had clean margins after my lumpectomy, then chemo and rads, and then after 9 years the recurrence was located right next to the lumpectomy area. Just goes to show, they just have not got this beast figured out.

Editing to say--I forgot to mention that I was on tamoxifen for 4 years but finally quit because of SEs. Sometimes I feel guilty about that but also I am not really convinced it was helping me. My first tumor was only "moderately" responsive to estrogen, same thing for my recurrence.  to me that suggests that my cancer responds only "moderately" to estrogen-blocking therapies...

pitanga

Hi Arbojenn, I´m just checking in to see if you´ve gotten your biopsy results.

arbojenn

Thank you, Pitanga!

The biopsy from the other side came back as "reactive only."  Big sigh of relief!  So I only have to get rid of the chest wall recurrence on the reconstructed side.  But I am going to get the other one taken off as preventive and just "be free."

How are YOU doing?

pitanga

I dont know what "reactive only" means but it must be good if it made you heave a sigh of relief. If you´ve decided to get rid of the other side I guess that means you´ve also decided on mx for the cancer side? oh, the decisions we face.

Me, I am still trying to understand if estrogen blockers will be as effective for me as chemo. my onc had no good answers so i posted a question on the stage IV forum.

arbojenn

I am having wonderful results from the estrogen blocker I am on.  Since  most of my tumors on my reconstructed side--I had a skin sparing mastecomy ten years ago--are visible, I can actually SEE it working!  I have the same hormone signature as do you.  Mine is highly sensitive to estrogen so the Femara is a charm.  Is there a test or something they can do to see how sensitive your recurrent cancer is to estrogens?  Are they going to do PET scans to determine your responsiveness?  Are they considering doing both since you were only moderately sensitive to estrogens?   I think there is a difference between pre and post menopause, too. You are very young.  Did the chemo hurl you into chemically induced menopause?  I continue to pray for you and hold you in my thoughts.