Recurrence of ILC Stage 2A

hollander

I am wondering if anyone out there has had a similar situation to mine.  I was dx with ILC Stage 2A in Feb. 2007.  Had a BMX in March 2007.  Tumor was Grade 2. Size 2.7cm, ER/PR+, HER2-, 0 node involvement (removed 17).  Followed with 3 rounds FEC, 3 rounds Taxotere and 5 years of Femara-- finished on 10/31/12.  Had a PET scan in 10/2007 which was clear.  All labs have been normal since completion of treatment.  I was supposed to have my final routine 6 month check on 1/17/13.....  

I had a sharp pain in upper left abdominal area at beginning of January, which I thought might be a kidney stone.  Had it checked, abdominal CT was negative, but showed some very small (2mm-8mm) subpleural nodules at base of my left lung.  Had a chest CT, then a PET scan.  The only "glowing" was these tiny nodules-- nothing anywhere else.  My onco said it did not look like breast cancer, and my tumor marker on 1/17 was normal. Had a lung biopsy of the 8mm nodule.  Surprise, surprise... it's breast cancer.  

After 6 years of being aggressive with initial treatment and having no issues at all, I am now facing treatment of some kind for the rest of my life.  Onco is running more tests to check hormone receptors, etc., so we can begin the appropriate treatment (looks like Faslodex injections for now).  Throughout my 6 mo. follow ups, I had asked if any screening beyond blood work was needed (when there were no other symptoms), and the answer was always no.  We were aggressive, my health was good, labs were fine.  I don't want to scare anyone who's trying to decide on treatment, but it's really discouraging to have to face this again after nothing but good news for all these years.  I guess the bottom line is that every cancer case is as unique as each patient is, and even with all of the advances, there's still no perfect solution for everyone.  Thanks in advance for your thoughts and suggestions!

Momine

I am really sorry about your recurrence. At the moment there is quite a bit of research going on about extending letrozole use past the usual 5 years. For what it's worth my PT told me she had a couple of patients who got recurrence almost as soon as they went off letrozole.

hollander

Thanks for your response!!  I was wondering about that, with the timing of everything.  My onco said there's no way to pinpoint when it started, so wants me to be on something different (for now...).

Momine

Yes, makes sense, and I do realize what I posted is purely anecdotal. I hope you kick the bastard good.

pupmom

I'm so sorry about your recurrence.  But it sounds like you have a very good and aggressive MO who will hopefully kick cancer to the curb.

Do you know if you were highly ER/PR+?

Anonymous

I'm sorry too.  As I was dx with ILC and positive nodes, I wonder if there would be anything you'd do differently, looking back.  Would you have insisted on different testing, etc.?  I'm 1.5 years out from dx and 10 from chemo and am curious.  I'll see my MO next month for my 4th follow up since ending chemo in March 2012.  You will beat this bastard!

Hugs

Claire

hollander

The biopsy is being rechecked to get the exact HR details-- I'll post when I hear next week.  Ugh-- hate that waiting!!!

BettyBoo

So sorry, too, to hear about your situation. I hope you have lots of support and a new treatment plan in place very soon. I have no formal follow up, which in light of your situation is very concerning. Although, if symptoms are apparent, specialists and testing can be accessed via a referral from your primary care physician. My specialist team locally works on the premise that patients will seek medical advice when symptomtomatic and tests can be initiated, routine follow up screening won't result in overall improval of outcomes if recurrence is detected.

hollander

Thanks, Claire.  Trying not to beat myself up for not insisting on other testing, knowing what I know now.  I guess a CT at some point might have helped... but since we don't know when this started, that scan might have been clear, and I'd still be in the same boat with my "January surprise".  I'm lucky that we caught it when we did.  I think the advice about "know your own body" is true-- get anything unusual checked out sooner rather than later.  Time to get back out there and kick some cancer a**!!!!

pupmom

Beat, I actually meant do you know how strongly ER/PR+ positive you were when first diagnosed.

toomuch

Beat_it2013 - It sounds like you did everything in your power to remain NED and that your MO followed NCCN guidelines in not doing routine scans while you were asymptomatic. As you said, if you had an earlier CT it may not have shown anything so don't beat yourself up. I'm sorry that you're fighting this again! Best of luck beating it in 2013!

Moderators

Just look forward, and take it easy on yourself! (p.s. and beat it in 2013 )

hollander

Yorkiemom, I don't remember from my original dx.  Will see if I can find it in the file.

Thanks for all of the kind words and encouragement, everyone-- so glad to have you all on my team!!

Racy

So sorry to hear this after you did everything you were advised to do.



I have read about ogliometastasis, which I believe is one met. This may apply to you and can have good prognosis.



Do a search here and ask a question for advice from those who are familiar with oglio.



I hope you get back to NED very soon.

Gitane

Hi beat_it2013,  Everybody would love to know exactly what "to do", but nobody knows.   You are getting good care, that's what is important.  Hoping the Faslodex works wonders. Big Hugs,  G.

bluepearl

What location was your tumor beat-it2013? If they are in the lower inner corner, they are especially prone to intermammary lymph nodes which are hardly ever tested. Medial tumors were also suspect but very much less so. I am wondering if they missed this with you.....while you would think chemo would get them, not always so. I am hoping good things follow you now; you desereve it!!! (((HUGS)))

hollander

My tumor was in the left breast, lower outside area (between 3 and 6:00 as you face it).  It was closer to the surface than deep inside, and the margins were clear.

Butterflylady2012

beatit...I like the above statement kick the bastard good!  Kick it's butt!! We are ILC sisters and my healing thoughts are with you everyday!  I must say I am reading your story worries me though because I was diagnosed ILC stage 2A last April.  I had Rt. Mastectomy with TE, as well as 5 weeks of radiation. My nodes were negative and they removed only 4.  One of the reasons they did radiation is the size of my tumor 3 cm and the fact that even though the margin was clear, it was a smaller margin then they say they regularly like.  They still did not push Chemo for me and I did not chose Chemo.  I am seeing my Onc every 3 months now and will have just regular yearly bloodwork.  

Butterflylady (Sharon)

hollander

Thanks, Butterflylady!  Best of luck with your treatment.  The lesson I have just learned is there is no sure thing about this disease.  My onc had considered me cured with NED for years.  So even with the best docs, the best facilities, best drugs and cutting-edge everything, it can still find its way back.  But I beat it once, and I'll be doing it again (and as many times as it takes)!!!!!  And you will, too!!

Nanka

Hi Beat_it...was your initial tumor vascular? I am so sorry that this is happening to you. My dx was sooo similar to yours and and really felt "lucky" to have such a dx. Now...not so much. Thanks for sharing your story.

hollander

Hi Nanka--  My initial tumor was not vascular.  I felt like I was lucky with my original diagnosis, too.  I hope your luck holds out better than mine!!   The odd thing about these nodules is that they don't look like breast cancer.  Just glad we caught them early. I'm starting Faslodex later today, and hoping for a good result with that.  Thanks for your support!  

Nanka

That's just not right! This thing is such a mystery. Is there a reason why you didn't do Tamoxifen? Were you strongly Er/Pr+? I am 7/10 and 8/10 for my Er/Pr.