August 2013 Surgeries

wrenn

Karen, I wish you didn't have to be so strong but it sure has served you well. Keep trusting your gut. You're an amazing person. Knowing you will come out ahead of this.

coffeelatte

So glad to hear you are through the surgery Karen.  Now it is on to the next leg of the treatment and rest, rest, and more rest for you.  Soon all this darn snow should melt away and the warmer winds of spring will be blowing in some fresh air for you to take some nice walks and build your strength back up. You are young Karen, it helps so much because you have the ability to get strong quickly.  In your pocket for good luck.

Lisa

aviva5675

Glad you are thru the surgery and know what comes next. You are strong and will get thru the chemo and then up wards and onwards in life. You know your friends here are behind you all the way.

KBeee

I appreciate all of the support ladies. It has been an emotionally trying week. Wednesday night I was told that the "node" they took was positive. Though I hate the thought of chemo, my gut feeling has been from the start of this recurrence that chemo was needed or I'd be stage IV in 2 years...not a doubt in my mind...and my gut feeling has never in my life been wrong. So the positive node was actually a good thing in that it was my ticket to getting the treatment I know I need. Late Wednesday night, I sent a message to my MO and told him not to send out the Oncotype because my node was positive. Thursday night I got a message back from him saying they don' t know if it was a node, or residual tumor and they're sending it up to Mayo for testing. Residual is crap...my tumor was by my reconstructed nipple. The node/tumor/whateverthehellitis was high up in my axilla...over 6 inches away. So...MO did send initial tumor out for oncotype testing. Surgeon called Friday night to tell me that the other 13 nodes taken were all negative. He said no sentinel node was identified based on the injections, so he felt around and when he felt a hard area, he got it out. It was in the area of the nodes, but when tested, they could not find lymph tissue. So here I am almost a week later. I do not know if I have a positive node, a second tumor, what the ER/PR/HER2 is of this other thing, and no treatment plan.

I see BS tomorrow and have 12 questions (so far) on my list, including whether or not the margins are clear, whether or not the area between the tumors needs to be tested for microscopic areas of tumor (which is suggested based on my research), and whether or not there could be other areas. This new cancerous thing did not appear on ultrasound, MRI, CT, or PET...yet there it was. I can't help but wonder what else is lurking in there. I then see MO on Friday. I have been compiling research on Progesterone loss in local recurrence (means poor prognosis without aggressive care) as well as in multicentric tumors, which also indicate a more aggressive situation. Hopefully, I will be able to make my case for more aggressive care. Please pray my MO is on the same page as me. I am hoping to have the decision made even before the 2-3 week wait for the oncotype results.

wrenn

i can't imagine your MO not taking you seriously since you do the research and are not frivolous. I would think he would be grateful to come across a patient like you. You assert yourself without being pushy. People listen to that.

I still wish you didn't have to but you are such a good advocate for yourself. I am going to assume it will go smoothly with good outcome....you deserve it.

coffeelatte

Karen, I'm with you, treat progesterone negative with chemo and nothing less.  Just like us who are ER-/PR- or triple negative; it is chemo to the rescue because nothing else is effective.  You do sound so strong for going through so much this past month.  You are an inspiration to me for sure.

babs6287

Hi Karen

You need to be your own best advocate-as I know you are! I know how frustrating this all is. Just hang tough!!!! We're all there with you,

Babs

KBeee

DH will go with me on Friday. It always helps when you have someone else there who will advocate with you. I just have to get him to advocate with me. He does NOT educate himself at all on it, so he will often just agree with the doc. I told him pretty firmly this time that I need him on my side unless he wants to be a single parent when I was dead. I think he got the message!

Oh well. Hoping maybe SOME of the path results will be in tomorrow. It's been a week since the surgery. How long does it take to see if something is a node or breast tissue??? These are pathologists, not 6th grade science dissections. Can you tell my patience is waning???!!!

Any my stupid drain is stiil at 50 cc, so it'll be hanging around a little longer, I'm afraid. Oh well. Better than a seroma, and glad it's winter so I can pin it in my sweatshirt and forget about it.

coffeelatte

Good luck today KBeee.

KBeee

Thanks all. My appointments went really, really well. I met RO in the morning and he's a really good fit fo rme personality wise, and he also wanted to hit it very aggressively. MO appointment went equally well. I was so afraid he was not going to agree to chemo. I did not even have to ask. He had already cancelled the oncotype because he said the second tumor was a game changer, and we were 100% doing chemo. I will start between March 30 and April 1 sometime. ACX4 then Taxol X 12. He is just such an awesome doc...he repeated over nad over how horrible he felt that I had to do chemo again. I said, no, you have no idea how happy I am that you are lettign me do chemo to kick it to the curb for good this time!

Feeling so relieved to have an aggressive plan.

wrenn

Ah, good news...if any of this can be good. I am so relieved for you that you are fully dressed in your combat gear and ready to go. You will show it who's boss. I hope your body says "Oh you again. Ok, I get what you need me to do" when the infusions starts. Take good care.

coffeelatte

KBeee, so happy to hear you have a great team in place and an aggressive plan that you know you need.  Do you need to do anything more before chemo starts or can you rest up a bit to get ready?

babs6287

Kbee

So happy all the drs are being aggressive for you!!!! It's time to kick cancers butt once and for all!!

Babs

katcar0001

Karen, What a big relief! I am so glad that your doctors needed no heavy convincing, and they were ready to do what is needed. Great outcome!

aviva5675

glad to hear it! Never saw anyone so happy to have their chemo scheduled! Keep us posted.

KBeee

Thanks for the support ladies! Coffee, I have an echo this week and I have to get a port put in during the next few weeks sometime. I also am taking a class that I've been waiting 5 years to take. It is Monday through Friday all day for the 2 weeks before I begin. It will be a good distraction, but of course means that I will get nothing done around the house. I also am hoping to finally get my drain out this week

coffeelatte

Oh my gosh KBeee, I did not even consider you still have a drain in place.  Oh my, that was such a huge misery to me and you just take it in stride.  I hope the port placement goes well and the Echo is uneventful.  All forward moving to get you to chemo!

Jo6202

Karen,

So glad you have your answers and are ready to fight again. Will keep you in my thoughts and prayers. Kick butt!!

Jo

KBeee

Thanks Jo! I had my port in and first AC both on Tuesday. So far, so good. I am feeling really good, and will take any and all good days I can get

babs6287

Hi Kbee

I knew you'd do great!!! You're tough!

I started the Ibrance/letrazole a little over 2 weeks ago. (It took a few weeks to get the ins company to cover the Ibrance). I hope it's working. Tomorrow I meet with the radiation oncologist at MSKCC to see if they want to try radiation. I'm hoping they decide that I'm not a candidate for it because I had so much before but whatever they say, I'll try!

I ended up not being able to go into the Impact Assay study (genome study) because they couldn't get enough malignant tissue from the core biopsy they did-my malignancy wasn't big enough- a good news/bad news situation.

Please keep me posted on how you're doing,

Babs

KBeee

Babs, I am so glad you can start the Ibrance. One of my Sept chemo gals was on the research study for it and had great results. Keep me posted on how you're doing!

babs6287

Yahoo!!! No radiation!!!! They said they could/would use radiation down the road if need be. They want to see how the Ibrance/Letrazole works first

Babs

jbdayton

Babs prayers for the Ibrance/Letrozole combo doing its job.

jbdayton

Karen, I hope today finds you still doing good. You are a real trooper and I know you will get through this. Praying for a complete response this time around.

Have a great Easter everyone.

KBeee

Great news Babs!!!!

Thanks Jeannine! I am still doing well. I almost feel guilty! Who knows how long the good days will lasy, but I will take each one I can get! So far, I have done really well, and have even picked up a coule on call shifts at work!

babs6287

Thanks Karen & Jeannine!

I should have some indication of how the Ibrance/Letrazole combo is working in about 2 months when I do another PET/CT scan. My fingers are crossed!

Happy Passover and Ester to everyone!

sas-schatzi

Hi folks trying to track down lil1964, she dropped off the radar without notice. Does anyone know anything?  Thanks Sassy Please Pm with reply.............

babs6287

Still not sure if Ibrance/letrozole is working. My blood cancer markers kept going up and my scan in June showed some new areas of activity on my spine-nothing definitive!! Finally at the last blood test my markers went down. Hoping the Ned's have kicked in. We'll see in September when I do more scans. More blood tests in about 10 days and hoping the markers went down again. This BC stuff never ends!!!

Babs

KBeee

Crossing fingers and toes and saying prayers that your blood tests and scans show improvement. I've been thinking about you!

babs6287

Thanks Karen!!! I see my MO this Thursday!

Babs