Calling all TNs
Comments
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Maggie - good luck tomorrow
Hope, I am so sorry. Please don't stay away. especially when you need support and comfort the most. I will be praying for you.0 -
Kathrnn, no rads for me, both BS and onc feel my pathology was so good no need.
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Hope60 - I am so very sorry you are going through this. I can only imagine how frightened you feel and that wouldn't be enough. After all that you have been through and now this. Don't ever stay away for fear of upsetting us, we are all here for each other. I am hoping and praying that your MO is wrong. Sending you my hand to hold tomorrow so you won't be alone. I will be thinking of you all day and hoping things are ok for you. Sending lots and lots of huge big warm hugs. Annie
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Hope: We will all be here for you. Giving you strength for todays appt.
You too, Babs. Sending good vibes your way.
I hate this freeking disease.
Trying to learn something new here....some are mentioning Oncotype numbers. I thought that when tumor was TN an oncotype was not done/needed/useful. Anyone who can shed some light please help me understand.
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My understanding is that the Oncotype number may be used for cases with ER Positive, not TN. It would be interesting to learn more this was not part of my report either... I also never had a PET scan. I'm asking my Onc about both on Tuesday.
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I had an oncotype test because my initial pathology indicated I was ER+ at 8% and my sentinel node biopsy was all clear. The Oncotype came back high because it showed 6.2% ER+ which fell below their cutoff of 6.5%. Subsequent biopsies have all come back TN. Generally speaking, oncotype testing isn't performed on TN tumors. It's an expensive test, about $3500, and there is just one lab that performs it (at least that was the case two years ago).
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Hope60: Thinking of you and sending positive thoughts and wrapping you in white light. Keep us posted and don't feel you need to stay away. We're all in this together and we're all here for each other. Holding your hand as you meet with your MO. Try to breathe and remember that it could be lots of other things. xoxox
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Naan1004 - I hesitated in making this post, but I hope you will realize it is just my humble opinion and comes from concern. I may be wrong, (others will chime in soon and straighten me out if I am) but radiation after LX is almost standard in all cases. The way my BS explained it to me was, that even though my margins were clean, that was no guarantee that there weren't small cancerous cells left elsewhere in the breast.
Your MO has gone from "you need more chemo" to now everything is fine and you don't need radiation.
I would suggest you ask them what specifically it was about your pathology report, that led them to believe you didn't need radiation. You've also had such conflicting answers, that I would really suggest getting a second opinion (from a MO not affiliated with them)
If you really don't need rads, I'm thrilled for you. I just don't want you to hear a couple years down the road, "gee, maybe we should have". What I'm trying to say is that I don't want you to have to live with regrets, and maybe a second opinion is the best way to get both peace of mind with their recommendation, and avoid the "what if I hads"
Hope my post doesn't offend you and again it's just my humble opinion.
Hope and Mags - I'm praying for you both this morning.0 -
JazzyJ: I had the oncotype because my initial path report showed ER- but PR positive at 3%. The oncotype came back with ER of
.7 (positive would have been 6.4) amd PR- at 4.4 (positive would have been 5.5). If your initial path report was ER and PR -, your ONC would not have ordered the oncotype. I hope that helps. 
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I am new to your exclusive club. I just found out today that I am TN. And to be honest I am more scared now than when I first found out I had BC. I am trying to keep the positives in mind but today that just ins't working.
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Tookybum - Remember, while TNBC is more aggressive, it usually responds better/quicker to chemo than other types. I understand your fear and once you have more information and time to digest it, your fears will calm some. I was stage IIIa and am over a year a half out of chemo. I can honestly say that I'm in better shape physically than I was when I was diagnosed. Just take it one day at a time, and know that you're entitled to all of the feelings you're having. And trust me, we all understand the ups and downs that come with a breast cancer diagnosis.
Hugs,
Kathy
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Kathrynn, not offended at all and understand your concern, perhaps my onc wanted me to have more chemo because I didn't qualify for rads for the same reasons u gave. I'll take what u said into consideration, since I do plan to find a new onc.
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Tookybum--welcome to our family. I had a major panic attack when I realized that TN was "so Horrible". My family calmed me down and helped me get control of myself. I did push for basically what was an immediate BMX because mine was also metaplastic and i wanted the factory off of me. Now with the TX behind me looking I am getting on with my life. You will feel so much better when you get the plan of attack in place an know what is coming next. TN is VERY treatable as you can see from this thread. You have come to the right place. Ask anything of these fine ladies and they will be along quickly with an answer
My 3 month follow up went AWESOME-- No circulating tumor cells in my body!! YES YES YES happy dancing. I hate the anxiety that comes along with an appt to the doc now. She did not at a spot on my bakc that she thinks may be pre-cancerous. Fantastic..but have an appt for next week to have it looked at by a dermatologist.
Hope --I am thinking of you and pray for you. Keep us posted as best you can. We will be here waiting to check on your healing.
Maggie
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Tookybum, I totally agree with KSteve. Any cancer is scary, especially the type we have. I'm 70 years young, also in better shape than when diagnosed a year and a half ago. You will come to a point of acceptance, and then you'll put one foot in front of the other. Somedays the steps may feel like stopping or going backwards. But this journey keeps going and soon you'll be an ol' pro like many of us. We survive, find a new normal, and live a good life. The women on here should give you comfort and support like no others can. We can all have fun with jokes, stories, and banter. It gives me proof that we survivors are just as vital as ever. Keep checking in here ---several times a day, if you can. You are now part of our family and we care very much for you. Jan
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Hope, So sorry you are living everyone's nightmare. You are in my thoughts and prayers. I sincerely hope that all this worry was for something far more benign. Whatever you have to face, we are here for you to support, listen, and comfort. Please keep us informed. We care.
The best things this week so far, and it's only Wednesday, DH's leukemia is stable, come back in 6 months; I don't need a hysterectomy (!); and I'm spending the day with my nearly 12 year old granddaughter. PB&J for lunch. Life is good.
Thanks Bernie and Annie for keeping our spirits up. Laughter and happy tears = good medicine.
Annie, do you take your work with you to the lodge? I hope you can just kick-back and be lazy.
So many posts, but I read them all. Blessings for a carefree day to all. Jan
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Annie,
The pre-radiation CT scan is done so that your Radiation Oncologist can map out your specific radiation plan. They make precise measurements of your chest and underarm, the surgical area involved, and also your internal organs in the field of radiation. All this info is fed into the computer that runs the radiation machine. The tatoos are used to mark the radiation field and to help the techs line up the field exactly each time. You will receive radiation to this field exactly the same way each time, until the last week when you get your "boosts". For the boosts, the techs will again get you lined up, but this time they will attach a template to the machine head that has been fashioned in the shape of your unique incision/scar area. The template keeps the radiation focused in the scar area, only.
You will see that your "suntan" is a rectangular area that deepens in color, each time, because there is no wandering off from this programmed field. You have to raise both arms above your head during radiation, and when you look at the suntan in the mirror, you will have to do the same, in order to see the rectangular shape.
During radiation, you lay on the machine's table, and the machine arm/head moves around you. It is programed to 'shoot' you from different angles, so that the beam areas overlap and give complete coverage. I was 'shot' from the left side above, the right side below and then overhead above my chest. Since you had a mastectomy (me, too), they will be radiating your chest wall. Our lumpectomy sisters will have their breast radiated, and the pattern may be slightly different. Also, the table that you lay on will move, to help position you. The techs will talk to you from another room, and they monitor you by way of a camera and microphone/speaker. You will be alone while the radiation beam is activated, but they will come in and change things on the machine for each position. After the first few sessions, you will pick up on the pattern, and know pretty much how long each one is. You need to stay still, so that the field isn't shifted. In fact, when I first layed on the table, they told me not to move, and they got me situated by moving me with the sheet that was under me on the table. You really don't do anything, but lay there! And don't plan on a nap!!! Each radiation beam shot is a minute, or so, with the whole process maybe 10 mins. It took me longer to drive there and back (I live about 10-12 mins away), than the actual treatment took. Of course, you have to factor in waiting time, and undressing and dressing time. You will disrobe from the waist up, and be given a gown or something to cover you. They gave me a towel to coverup - I was shocked at first ,but then it was no big deal! It is only the techs and you in the room. You don't even have to take your shoes off.
Don't be shocked by the first session...they may draw on your chest and take a photo. This is to have a picture of the radiation field on file, and it also helps the techs to explain and show you what's going on. I accused my tech of being a graffiti artist at heart!!!
As to those tatoos, they are just little black dots. They are permanent, but do fade in time. Mine have changed to blue in color. Ick! They first looked like blackheads to me. I told the tech I was going to get a flower tatoo to hide them. He thought that was funny, but told me "seriously" not to cover them up, in case I ever needed radiation again. You can't be radiated in the same area again, and the dots show the borders of the field, so future techs can be aware of that. He said to make the dot the center of a flower, so that they could be easily found.
Here's an idea for you artists out there...come up with a tatoo design that is pleasing to look at, but that is appropriate for radiation guidance!
And make sure to treat your skin gently, keep moisturising, and keep hydrated.
I guess what I had originally planned to say way back at the beginning of this post was...don't be waiting nervously about your CT scan results. Depending on how busy your RO is, it may take a while for them to get your plan made, and there are no results to give to YOU, anyways.
~ Shar (finished rads 3.5 mos ago)
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I saw this on Facebook today and thought it might be helpful for anyone in treatment. It's so important to stay hydrated and here are the top ten foods to help:
I ate my weight in watermelon last summer during chemo!
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Oh Hope,
Praying that your MO's "thoughts" turn out to be wrong. Those brain MRI pics can look pretty crazy to anyone other than a radiologist, especially a neuroradiologist.
You are a BC Warrior, and we are all here to support you through whatever BC tries to throw at you next. Take good care of yourself, stay strong, and keep in touch.
Thinking of you ~ Shar
P.S. Continue to pm me anytime, Friend - to rant, cry or just chat.
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Tookybum(Great screen name-would love to know the story "behind" it!) So very glad you stopped in. Freaking out is normal. Things will get better as a plan is put in order and you get a better understanding of what is going on. That being said, Please, Please be careful where you do your research. BCO is a great place to start and of course your Onc. BUT stay away from most of the internet. Most of the data is old and no longer accurate for todays diagnosis of TN. And it can scare the crap out of you. And although we are not oncologists here on this TN thread, the women here are very knowledgeable and willing to help in anyway they can. Ask a question and someone will be along with advise or a similar experience that you can relate to.
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Michelle and LM50 - Thanks for the education. I still wonder about the PET scan though... Both the Surgeon and my Onc said they didn't think it was necessary, nor do they do markers. Hmmmmm, gonna ask more question!
Mags - Yeah!! Can I ask how they know if there are circulating blood cells? Is it a blood test that I will have after treatment (17 from now :-().
Naan - How confusing.... I hope you get solid answers soon!
Newbies - You've come to the right place. I found security in this forum last month and cherish everything on here to such a deep degree. A totally phenominal TEAM of women!
Funny story to share with you all. We have a continuous round of storms that come through our area. My Hubby was preparing dinner and went down to the dock to fire up his 2 week old grill only to find it was gone!! Of course we assumed the worst and accused some poor stranger of stealing it. As he stood there in wonder, something shiny was in the water. The wind had thrown his 100# grill right off the dock so now it's at the bottom of the lake with fish swimming around it! Not sure how we are going to get to out yet, but that's a boys job ;-). Anyway, we had oven baked chicken instead.
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Jazzy - how close you are followed depends a whole lot on your staging. I'm stage IV, I'll probably have PET/CT scans every 3 months for the rest of my life, unless something miraculous happens. And my tumor markers (CA27.29) will get checked after every couple of chemo cycles. If you are early stage, you won't be followed nearly as closely. And that is funny about the grill. I could see that happening here - we are also on a lake.
Hang in there, Hope...sending more positive thoughts your way.
Tookybum - we are here for you! Rant, vent, cry, get mad! Don't hold it in!
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JAN69 - Missed your "Life is good" paragraph. Glad to hear your DH is stable and thT you don't need a hysterectomy and LOVE PBJ's! My Hubby will only let me eat Organis peanut butter, but I sneak his Jiff Xtra crunchy more than I should :-)
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Makes sense about the Staging, but I still wonder how they know that therE isn't something elsewhere. I struggle to understand how they know it started in my breast, and how can we be confident it's nowhere else. Several months ago I started having pain in the ball of my foot, then about 4 months ago my elbow started hurting and I blamed that on the keyboard, about a month ago an odd bump grew in the palm of my hand...... I am not usually freaky like this, but I can't stop wondering if it really started there. Normal or weirdo?
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tooky! It sucks to have breast cancer...sucks..that is a given...but this "triple negative' is horrible stuff drives me nuts...I hear it everywhere...my good friend found out she is tn (she's on her second chemo)...and she really didn't start to freak until she found out she was TN...I asked her to stay away from other websites than this one...I asked her to talk to her onc to see what he/she thinks...ask your onc about survival rates...reocurrence rates..try to ease your mind a little...there are still alot of us still around..including some stage 4 ladies....its alot to take in..any cancer diagnosis is..but please realize odds are..you will probably be ok...hang on to this..
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Jazzy- Everything you are feeling is normal. We all worry about every little ache and pain. My MO says that if I have any pain or feel anything "out of the ordinary" that lasts longer than 2 weeks- get it checked out! My MO asked for me to have a PET before I started chemo, but my insurance denied it saying stage 1 did not need a PET. I wish even us stage 1 and 2 gals got scans every now and then!
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TifJ - Doesn't feel normal, but I get where you are coming from.....still freaky!
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I just mean freaking out about things is normal!!
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Titan,
Thanks. That was very reassuring. I was freaking out a bit last week. Saw my onco on Monday and asked him what he thought about recurrence. He said he thinks I've done everything I could and that they will be keeping an close eye on me and that I should be OK. You are right about reading other sites. The info is pretty scary and makes you freak out and question everything. Statistics are really only predicting the probability of one outcome or another. I have decided that I'm healed and the rest is in Gods hands. I will exercise and eat healthfully (as I did prior to dx) and pray for the best. When it comes down to it, I don't want to live my life in fear, I want to be healthy and happy and successful. I am certain that all of us want health and happiness. We can't let cancer define us or dominate our lives. Cancer is not who we are, it's only an obstacle we will overcome.
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Bernie Ellen, where are you? We could use some comic relief.
Hope, I've been thinking about you all day. You're in my prayers.
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Naan1004 - glad I didn't offend you.
Mags - wonderful news!
Tookybum - welcome to the family, (and it is family here). I remember when I was first dx'd, all I kept hearing was how "aggressive" it was and thinking "well sh*t, I'm gonna die". I am so thankful I found this thread, because this is where I really learned about TN. (not from my doctors). Yes, your life will suck for awhile with chemo, surgery and possibly rads, but it is all doable. Please, as you have questions, come back, and the group will do there best to answer them. Take it one day at a time right now and try not to overwhelm yourself.
Hope60 - Praying for you and looking for an up date.
Wish me luck ladies - first Mammo tomorrow! And after my appt, I have a great treat in store!0
