BRCA1 Gene Mutation and Neoadjuvant Chemotherapy

Wade,

Deb-

I've been meaning to tell you what an amazing inspiration you've been to me.  If you caught some of my posts you know how I felt about my change in treatment after having my mind set on surgery first.  Reading your tremendous success story gives me this hugely warm surge of hope gilded with faith.

This chemo sequencing study means nothing when you've acheived what YOU HAVE!  I'm thrilled beyond words your tumor shrunk down leaving only the tumor marker.  Awesome, simply awesome Deb!  I feel like your personal cheerleader (sans the pom poms)  though mean it with my whole heart.

So now you have a  follower.  Lucky Girl.   I'll be upfront about looking for your posts.  I hope that doesn't sound stalker-like creepy.

Seriously, you've been so helpful as I begin this path.  I have months to go, taking it a day at a time.  I love your posts and I'm majorly happy FOR YOU.  Never be concerned your posts are too long.  I know I love reading every word and I'm sure I speak for many others here.   Keep posting when you're in the mood, my dear.  And,  know you've made the day of a woman miles away more than a few times by being here and sharing...

Hope you're having a good day- Wishing you MUCH continued success!  -- Mindy

Wade, 

Blair, Thanks so much for your thoughtful response. 

I just edited this to give the right measurements.. after looking at my reports. El-duh   I had a needle biopsy with 4 tissue samples as the first true diagnostic.  I'm now confused where my original measurement came from.  I had 3 subsequent tests including MRI, CT & Pet Scans.

I expected the tumor to grow prior to chemo.  I had a Ki-67 of 99% if that's even relevant.. it seems it did come into play as a growth proliferation rate, though some docs don't pay much attention to the Ki-67.  They DO put it in every report at MDA.   (Mine too seems to be growing downward though it's lower following the rim of my breast near my ribs.)  What I wasn't expecting was growth after the chemo started.  It took my local oncologist back, too. She whipped out her measuring tape just shaking her head.  Comforting. NOT.   When I told her it now hurt a lot (off and on) she said that was a good sign.  There was so much to cover, I don't remember her explanation why the pain was a positive.

What started as a 1.88 or 1.9 cm tumor when I was first diagnosed, then hopped up while I was hunting surgeons in the state and waiting on second opinions.  At MD Anderson it was a 2.6 x 1.8 x 2.6 cm.  Not bad considering, and most of that growth was at the beginning after diagnoses.

When I began mega doses of broccoli sprout extract in gel filled pill form it only grew 1 cm in 5 weeks.  I found that significant.  I'm NOT suggesting anyone should take mega doses of this extract!  Consult an expert.

The 2.6 cm was from my ultrasound at MDA.   I think I read usually ultrasounds render a smaller than actual size measurement.

Now it seems to be taking off in the wrong direction.   I think your three points have a lot of merit as to why the tumor "appears" larger.   Since chemo started  I've kept my hands off it for the most part, unlike earlier days when I felt around a lot.

Anyway...

I'm due for an ultrasound on the every 3 week schedule.  Gosh, I hope we're not talking major growth.

I truly enjoy your posts too, Blair.  Hope you are feeling well and thanks for sharing all that you do!
 

Edited by mindy555 - Oct 20 2011 at 5:14pm

Mindy,

Thanks so much for the very kind words and your good wishes! I am fairly new to posting things here but have followed along silently for months since I was diagnosed. This is such an amazing group of people and the amount of shared knowledge is incredible. I have learned such an unbelievable amount here and I really think knowledge makes us better advocates for ourselves.

I am all for sharing information that might ease somebody's mind or make the road a little easier for the women behind us! What is most comforting of all is that everyone here 'gets it' and understands the freak out nature of not only do I have cancer, but I have TNBC. Very few of my friends get that but we can come here and not have to explain.

I had to smile at your comment that you are leaving the tumor alone because that was so me too! At first I was at it all the time because it seemed to get bigger by the day! Once I started treatment, I had chemo on Friday and would see the onc first, so Friday was my day that I would allow myself to weigh myself and check the tumor. More than that probably would have driven me bonkers, and it is a short drive these days!

I'm with you- just taking this whole thing one step at a time, one day at a time,a nd living my life the best I can! Here's hoping that your nasty ol' tumor starts the disappearing act soon!

Hi Wade,

I am so glad to hear that your wife did well with her surgery!

I see that you are in SE MI and said the surgeon is a she...just wondered if you were willing to share who it is? I am in Illinois but travelling to Ann Arbor next week for my surgery (Tuesday) with Dr. Newman. We liked her tremendously when we met her, very compassionate and thorough and also seems to be highly regarded from the few people that we talked to.

I guess here we are all stalkers to some extent , but what a great group from which to learn! Maybe as your wife gets further out from the shock of this whole business, she will feel comfortable enough to join the site and feel welcomed into the family as well! Wishing her a speedy recovery...

Deb

Hi Deb and Susan,

Thank you, and I'm happy to share whatever I can that might be helpful.

Kerri's surgeon is Dr. Cheryl Wesen, with Michigan Breast Specialists. She has been great, and was referred to us by another surgical oncologist, whose son played hockey with my brother's daughter, Dr. Bob Morris, whose specialty is ovarian cancer. Crazy how these little networks work.

I have heard of Dr. Newman, and it was all good. As I'm guessing you already know, she has a special interest in TNBC, and I've heard some interviews of her that I found on this website, I think.
Some friends of my mother-in-law have been to Dr. Newman as well, and liked her.

The U of M facility is first rate, from everything I hear. This reminds me of the line from JFK's speech at the University of Michigan when he referred to Harvard as the "Michigan of the east". Obviously, he was playing to his audience, but still, it is a point of pride...I may be a bit biased as my two oldest daughters graduated from Michigan, but hey, at least I'm up front about it!

Good luck to you both!

Wade
 

Hi Mindy,

I'm glad to hear that you're going to see MDA again, though it's a bummer you have to. Good luck and know that we'll be thinking of you. We want that tumor to start shrinking!

Wade

Hello Mindy555, Wade & Kerri, Blair, debB, Tina, Suze35,

I am so glad for this site. Just reading the interaction between all of you with similar and totally opposite situations is what it is all about.

Wade, there are, or have been many men on this site advocating for their wives, mothers or loved ones. Steve, is one of our biggest advocates, helping women who post here who really need a helping hand. All of us who have husbands who supported us in the beginning of this journey and still do today. How Wonderful.

Blair, I too "shut down" during my treatment. Not to the extent that you did, but I am glad you are back-up and headed in the right direction. I needed my props kicked askew so that I could learn to 'receive care' from others, instead of always having to be in control. It has been a humbling journey. I enjoy your posts.

Mindy, It sounds as though you are having to relinquish control also. It is hard, but we don't always know what we need; especially at a time like this. I'm praying that whatever happens next will kick 'the stuffings' out of your tumor.

debB, Tina and Suze35, Thank you for sharing. Taking it one day at a time, deciding to jump in and share your stories, all that you say can be just what someone else needs to hear. Anyway, Thank You.

As a 5 year survivor, please let me be an encourager to all of you.

God Bless,
Lillie

Blair- Because I believe so strongly in the power of prayer, I can't think of anything more profound than being in yours.

Something's gotta give.  My husband said at my last oncologists visit she said not to expect shrinkage until shortly after the 3rd Taxol treatment.  I don't remember that AT ALL, which means nothing.  That's why I take another pair of ears and a tape recorder.. except for this last time.  I could have sworn it was in context with losing hair.. not the tumor shrinking.  They used to give higher doses of Taxol-- every third week I believe at the weekly dose x 3.  Then research found the every week @ smaller dose regimen was better. (For many, I guess). 

It's been a bummer day here.   I'm just discouraged.  It seems nothing has gone right since I first discovered  this evil ever-growing bugger.   I do have good Dr's in my favor... but they can only do so much.  Just like they both said after their many optimistic comments... "no guarantees".  Yes, I know there's no warranty that says chemo will work the way it should.. or that I will remain disease free.   While the docs aren't living w/ this, you know they have to be frustrated when it comes to treating patients w/ TN.

After all this waiting to be treated I was hoping to see progress, but at least they promised a close monitor.  I have to believe that's exactly the course they're following or my vocal chords will be exercised in a yet more aggressive fashion.  I'm quite good at that.  I know the doc at MDA was a little worn down after all my devil's advocate questions on my second visit... and now some of those "what ifs"  are coming to fruition.   This proves to me both oncologists are communicating though.  I hadn't contacted her, so my onc here must have had some concerns regardless of what she said..  It had been a while since I'd seen her, and I know just by feel it's alarming.  Plus, changes after 3 weeks doesn't include growth while waiting.. obviously not a good sign.. though again we're going by feel and measuring.  The ultrasound should give us some more definitive answers.  If the purpose of neo is to measure how well the chemo is working, they'll need more in their arsenal to move this in the right direction.  Can I ramble or what?  Rhetorical - we already know THAT answer.  ;)