Recurrence- How to comprehend it to be able to win

Christine_Brown

Hello Fellow Warriors,

I am currently told that I have a !.5 cm diseased axillary mass on the opposite side to my previous IBC occurence of three years ago.  The fact that it is also her2 neu indicates it is a recurrence I am told. Has anyone had this experience and how do you frame or understand your experience so that you can remain optimistic? 

Thanks in advance for any help offered .

Christine

Squeaker

Hi Christine - Exactly one year ago this month, it was confirmed that I had my first recurrence. My original IBC dx was Nov 04. I guess I'd always expected it, being a trip neg ... but when reality hit, I was more in a state of disbelief than anything. I also went to an estrogen + status, but still HER neg. A rarity according to my team. Anyway, I spent 6 mos on carbo,taxotere & zometa since we agreed as a team to hit it hard and I was feeling good at the time. It was a long haul, but I crossed the finish line the end of this past February ... vertically!!  :-) 

You fought hard your first time and you can do it again. For me, it really came home to roost when I realized I'd done it once already and I knew the basics so therefore, it was up to me to push forward again! There was great comfort in knowing what to expect in general. The hardest thing maybe is being upped to a Stg 4, just by the recurrence alone. I chose not to dwell on that. I'm lucky enough to feel pretty good and am able to maintain a good quality of life. Remember, with all the drugs out there now, we are in control of how we choose to lead our lives. My wish for you is simple. Nothing will change the hard reality of having to fight once again, but we are IBCers and we know how crucial every fight is. Hang in there, you can do it! 

Squeaker

Faith316

Squeaker -- Just curious, was your recurrence in the same breast as the original dx or the other one?  I also have IBC (after having IDC last year with a lumpectomy) and am now in the midst of contemplating a unilateral or a bilateral mx.  All of my oncologists tell me that I am no more likely to have a recurrence in the good breast than any place else in my body and they think from a medical/oncological standpoint, there is no reason to have a bilateral mx.  Wondering how many other IBC ladies on this forum have had recurrence in their other breast.  Maybe I should start a thread asking that question.  Wondering about you.

 Thanks.

Christine_Brown

Hi,

I was told the same thing -that the likelihood of a recurrence on the opposite side was low and that getting it in an organ was much higher. That is why I opted against a mastectomy on the opposite side. Now they're suggesting breast conserving surgery as the mass is in the axilla . They're going to remove all my lymph nodes. They think that because it's hormone negative like the last time it is connected to the IBC of before and consider it a recurrence. 

 I think it a good idea if you start a thread about recurrence on the opposite side. I'm keen to see what people respond with.

Thanks for your suggestion.

Christine

Squeaker

Hey Ladies - My recurrence actually happened in 3 supraclavicular nodes at the base of my neck on my GOOD side. I'd had a bilat in 05 and the 'best opinions' I was given by both my onc & breast surgeon at the time tuned out to be so true. No guarantees ... any recurrence could basically be most anywhere. Cells travel where they will. No one ever mentioned these nodes to me, so I was in TOTAL disbelief but felt better when my surgeon told me last year what a good early catch this was. I'm ever so grateful!  I'm on Femara now, but I honestly feel we must be smart fighters and never take anything for granted in this IBC fight. There's a gal on another IBC site now who's had a recurrence after 7 yrs on Tamoxifen & Femara! Go figure that!

Squeaker

I'm pretty much by the book ... v. 2004 ... AC/Taxol, bilat, rads. The rads went deep to secure my chest wall, so sc nodes on my bad side are toast but were left alone on my good side. There was a ? of getting rads to these nodes after I finished chemo in Feb, but after a few consults we all decided it would potentially limit future tx to upper chest area, so we scratched that. I'm on monthly Zometa too, along w/the Femara.

There IS currently a standard tx protocol for IBC presented by a Stanford research MD a year or so ago. The details escape me currently (NIH driven or someone else?), but it's the first time IBC has been noted as seperate and specifically different from other LABC. It's nothing we all don't know already, but it is a major foot in the door and hopefully of value to those in the medical community who do not have experience w/this devil.