Calling all TNs
Comments
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Tasia,
You mentioned your mother has the BRCA 1 mutation? I just got done reading a very lengthy article, which was about the significance on whether there is correlating data on whether BRCA mutations have a better prognosis than non-mutatations. But in this article, ironically, in regarding what your treatment is consisting of, they mentioned the treatment of FEC - they also mentioned a treatment called FAC. And this article, indicated a very signficant difference in prognosis for those with the BRCA mutation who received chemotherapy. Your Oncologist sounds like he is on top of things. I would actually tend to worry if too many of us get the same thing all the time, as each one of us is so uniquely different. (Although at the end of the article, it mentioned that today's testing with new methodologies, that the data supported other studies that showed no difference in mutation carriers, and that future studies were needed to determine if BRCA is a prognostic indicator). But anyways, the main point here is that in the journal I read, it specifically mentioned FEC as one of the treatment protocols used in this small cohort of patients (only 77 patients were the subject of this one journal.)
Remember that as we compare ourselves to others on here, some might not be BRCA 1+ or might not have any mutation in their family tree, so of course their treatment protocol might be different. But if there's a risk for you to have the same mutation as your mother, perhaps your Oncologist is going ahead with the thought of "leaving no stone unturned." I think he sounds like he has his finger on the pulse. We can all compare notes, but we only show the basics on our signature line on here. These signature lines of ours sometimes don't mention our family history, our genetic testing status, and other factors that might influence a doctor's protocol. So while we all do our best to help each other, I do firmly believe in placing a lot of trust in your doctor, and using our experiences as a way to uncover more and ask the right questions to your doctor. You can ask your doctor for data to support his treatment plan for you, especially if he talks about things like "better response rate" or "better results were indicated in a particular trial", you can ask him to show that supporting data to you. That might help reassure you on his recommendations, or provide you with another opportunity to ask him some more questions to help ease your mind. Wishing you all the best!
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KeKe, I can feel your relief and positive outlook in your words. You brought a smile to my face. Regarding your hair, I did exactly the same thing. Had long blonde hair and had the lady that has been cutting my hair for 25 years cut it into a cute Bob. And I ended up really liking it! But it was only a few weeks and it was gone. Once my hair started to come out by the handfuls, I had DH shave my head whlie we outside on the deck. The wind took most of it away. Chosing to cut it and then shave it gave me a tiny bit of control during a time when nothing else that was happening did.On congrats on getting those damn drains out. Hated those things.
Inspired: I am BRCA 1 and 2 negative. No family history either. Curious about this other genetic testing, tho.
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Keke...I'm so glad for you that you have a wonderful PS. It really makes a difference working with a doctor who actually listens to you! I cut my hair short at first too, then had to completely shave it the following week. You finally get tired of all the little hairs everywhere and say off with you! I wasn't sad when I shaved mine and my hair was my signature. I just told my DH this morning that its kinda exciting because now I can try out all these fun hair styles while its growing out. One of the positives about this journey.
Have a great day ladies!!0 -
Navy Mom,
What the rearrangement sequence is (BART), the genetic counselor told me it is like baking a cake and dumping the ingredients in the wrong order. So if you add flour after it's done, or stir in the frosting, you have an issue. They look at the whole strand. The additional testing (if it were not to be covered) runs $750 at the lab.
It's now been added to the NCCN guidelines. It's called Large Rearrangement Test. I bet you could get it done now and approved. They have found as many as 6% - 10% of hereditary breast and ovarian cancers have this type of mutation!
BC before age 50 qualifies, per this chart - or there are other qualifying methods as well.
Here is the link:http://www.myriad.com/lib/brac/BART%20one%20sheet.pdf
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OBXK-thanks for the lovely compliment.
Just want to chime in on getting tatooed. I recently got tatooed across my breast and they look AMAZING. Caution though I felt everything and I thought we were suppose to be numb. Also when my cycle starts I get those shooting pain across my breast as well. Not painful but noticeable. After getting on the web and researching as time goes on our nerves will regenerate, but never to the point pre-surgery of course.
So if you are getting tatoo work done don't wait too far out...you maybe in for a surprise. Also Vinnie Myers work is amazing and is staff is so professional.
Thinking of you ladies often.
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Hi everyone. I got the results of my scans. No mets! I had my right side mx and rt axillary node dissection on Tuesday. I'm feeling good and have not needed pain meds today.
The MOs at the breast center at MDA will discuss my case and I will find out on 3/27 what the treatment will be.
I will come back later and try to catch up on everyone, but I'm too sleepy now.
Phyllis0 -
phgraham ~
Wonderful news! So happy to hear there's no mets found!0 -
phgraham - congrats, what a relief
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Great news PHG!!!
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Hi Everyone,
I know I haven't been posting but I have been lurking to try and keep up. I had to stay away for awhile to try and not be so focused on BC and try to get back to the new normal.
So much for that idea.
I went to an oncology visit at DF in Sept. and brought up some concerns. They decided to do tumor markers. (I found this humorous, because when I had asked about these earlier in my treatment they told me the "were unreliable and not in their standard of care"). They came back normal, so they felt scans weren't necessary.
In January I went to my rad onc. Brought the same concerns up. She felt all was fine. She was NOT happy when I told her my primary had CAT scans ordered for the next day
It has taken some time to get answers on the CAT. (I brought all my previous CATS in, but the radiologist didn't bother to look at them and compare. You can do everything right, and sloppy people don't do what is standard medical care.)
I had an appt with my primary this week ( he initially thought the findings were not new). After some discussion, he put a call into the radiologist to pull out the original CATS and do a comparison.
I have a 1 cm mass in my R high axilla in the pectoral muscle that IS new. (One of my original tumors was deep in the R pectoral muscle)
His new advice is get thee ass to DF and get it out if they can (it's location, depth and small size may make it hard to biopsy). Plus remembering their theory of leaving tumors in during treatment is giving me the willies today.
I have a routine appt already booked for 4/3 (I also have a new onc. because mine is leaving)
What will be, will be. But I can tell you one thing, the next doctor that tells me that (especially when it comes to follow up scans and breast MRI's) that it's not "their standard of care" best be ready to eat their words lightly sautéed! If this is the beast back, it's hopefully been caught at a small size because I ignored them and have a great primary!
Best wishes to all. I've especially missed your humor in face of this.0 -
Kathrynn ~
Girl, I hear ya!!! If you've been keeping up over the last few days, I am dealing with a bit of "God Complex" among my MO as well! I am having to take a lot of action on my own and with what these people have been paid on my behalf, it is completely unacceptable and will be dealth with once I get my own scare dealt with and behind me.
Good luck to you and keep us posted!
Blessings...
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Phyllis - This is awesome news, congrats!
Kathyrnn - Kudos to you for continuing to get the answers and the protocol of care that you deserve! It just reminds us all that we must be vigilante. I'm so glad you went with your intuition and insisted on follow through. I too had my GP close the gap on some additional things I felt were necessary for my follow-up care, such as a chest x-ray and testing of vitamin D levels.
Here's my update: I had my exhange surgery last week (2nd one), and I had been going round and round with the medical team on this piece of scar tissue. MRI showed it as non-malignant, but still given a birads3. So my PS agreed to remove that, and other tissue, resculpt me, and give me new implants. He agreed that with my overall piece of mind, it was important to remove that piece of scar tissue.
I saw him today, and the tissue removed came back from the lab as normal! And, I found out yesterday I'm BRCA negative.
I know what you mean about leaving the boards for a while to try and balance normalcy in life with moving forward, and trying to move away from this bc. I've done the same thing as well.
I'm also learning not to peruse the interent late at night. It's always then that I come across something, that I wasn't looking for, that I wish I hadn't read.
Have a nice evening everyone!
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Debra, I'm so happy to hear your good news! I hope your celebrating and feeling good from your exchange surgery. Nice to hear about good things.
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Thank you - it's been a long process to get to this point, 15 months!
How are you doing, are you at the halfway mark with your chemo regime?0 -
Debra - glad you got good news!!!
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Finally got caught back up.
Titan - thanks for the uplifting message, made my heart lighter today.
Phgrahm - congrats on the clear scans
Placid -thanks for that link. I've saved for when I have more info.
Debra - congrats on the good results and I'm glad you have a doctor who listens.
Lady Miz - Please forgive me for chuckling. PET scans? That's another "not our standard of care" at DF. I urge you to call your primary, if they don't address your neurological symptoms. He can probably rush the process to get you seen by a neurologist. Once neuro hears your symptoms and diagnosis, your butt will fly into the MRI.
Luv - you can always make me smile. LOVE the picture!!!!0 -
Thank you Luv! And I want to say you all are so supportive. I can't even keep up with all the daily postings, and yet you all seem to be right there listening. It's nice to have a place to come to when I have a question, (or an answer).
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Titan -- congrats on being 4 years out. You are such an inspiration to us all. I'm so glad you are still posting here, helping us all out.
Yea, Phyllis -- I know that gives you a wonderful feeling.
Lady_Miz -- Welcome. What you are going through sounds really scary and I don't understand the wait either. I hope you get your answers really soon. I would definitely take the response you got from John Hopkins to him and if he seems offended, then you should look for someone else.
Argynnis -- Do a search on this site and the internet for the Z0011 trials and you should find articles from the 2011 San Antonio Breat Cancer Smposiusm which states that removal of additional nodes is not usually necessary. When I had my lumpectomy in October, they removed the sentinel node and had it checked while I was still in surgery. It came back negative, so the doctor did not take any more nodes. A week later the path report came back that there was a 5mm metastisis deeper in the node. The surgeon said he needed to go back in and remove the remaining nodes. I really was not ready for another surgery. The hospital nurse advocate was there when he told me and she told me she would talk to my RO about it. My RO had atteneded the symposium where this study was presented and she called my surgeon and told him removal of the additional nodes were not necessary since chemo and rads would take care of anything left. She brought my case up to the local tumor board and they all agreed that additional surgery would not be necessary.
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5thSib ~
Thank you for the welcome! I'm starting to get pretty ticked and I will not stop until I get some answers, be they positive or negative. No one, and I mean no one can understand the hesitation to at least biopsy these nodes! Add on top the neuro SX I'm having and it's absolutely foolish!
Someone at work in whom I confided about this asked me this question - "Would you accept these delays if it were one of your sons we were talking about?" - and that was the turning point!0 -
kathyrnn ~
You have no idea what I had to do to even get the PETs ordered. One way or another, I will be on the path to answers next week!0 -
Hey girls! I had my power port placed today...I'm not really sure how I feel about it yet.. ..to start off I was shocked that they used general anesthesia and the tube down my throat...everything I read, said they sedate you but your still awake and jut not feeling anything..I HATE waking up from the anesthesia! And I'm not going to say It hurts right now, but I'm def sore...which I guess isn't a bad thing bc it took the soreness off of my chest! Haha so I guess it wasn't bad... The worst part was being put under and the sore throat ill have for a few days! But im still alive and kicking, so i guess i shouldn't complain bc theres woman losing their lives to Brest cancer right now! Im just lucky to be alive and given the chance to get rid of this cancer bullshit! So yup, ports in and im ready to start chemo monday and push till the end!
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I had recurrence just had rads again second time same breast.
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Netty that is amazing. I was told you couldn't have rads again on the same breast. How did that happen.
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Keke - I had to have general with my first port - because I kept try to leave the table under sedation. They thought I'd be less stressed getting it out -tried local, I tried to assist with the surgery
I hope you have a speedy recovery. 0 -
OBXK, oh my goodness, that's hilarious! They told me I had twilight sedation. Because I'm always so nervous and shaking beforehand, they always start my sedation while I'm waiting to go back, so I've been completely under with no memory of anything. Even after I get home, I'm so groggy that I will go straight to sleep. I will have a pre-arranged food order placed with my DH, he will wake me up, I'll have my very special meal that I was looking forward to, then I'll go back to sleep. A few hours later I'll wake up and ask him "when are you going to get the food?" LOL Oh, and I also like to call my doctor's offices, while I'm heavily sedated and tell them all how much I love them. Then I realize what I've done and I call back a few hours later (still groggy) to apologize for the previous 'drunk' phone call.
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Obxk!!! Hahaha that seriously made me laugh out loud!! I wish I had some awesome story as to why they keep wanting to put me to sleep...but, I don't! Haha Nurse said its just my doctors way if doing it! Ugh I'd rather be awake and go without the horrible anesthesia wake up..oh and knowing they shove breathing tubes down my throat while I'm sleeping..but hey, she's the doctor so if that's how she does it, that's what I go with...thank god I only have one more surgery and that will be a while down the road to have my expanders out and implants in!
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Keke- that is too funny!
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Debra that's a riot!
Ladies - I need some advise...I am on tx #5 of 6 and my feet hurt so bad it's getting hard for me to walk. I'm 33 and chasing after 2 kids all day so I try to push through it but this morning they just hurt. I am assuming it's bc of the chemo but besides meds is there anything i can do to reduce the pain. It hurts the most at the ball of my feet.
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Jenjenl... Is it a pain or numbness and tingling like. Cause I know the taxotere can cause neuropathy which is tingling and numbness. My mo told me to take b6 to try to prevent or minimize the neuropathy and it seemed to help but I took it throughout the treatment. See what your mo says. Maybe try to soak them in Epsom salt or get a foot massage :-). I always had my husband do that when they started hurting but for me I didn't get it if I did til the end of the day. Hope you get some relief.
Melissa0 -
Keke..will be thinking of you tomorrow as you start chemo!
Jenjen..My feet hurt bad when I was on Taxol. I soaked them in lavender Epsom salts at night...wore tennis shoes all the time and had DH rub them! They are so much better now! Just have numb toes!
Is it normal to be 12 weeks Post chemo and still have pains here and there? Same pains I had right after taxol!0
