Calling all TNs
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English: I am totally like you - defensive pessimism is my calling card. But as you go through treatment and get past each milestone, you will find your optimism building. I make vacation plans now for 6-12 months out, and I look at my retirement savings as needing to last til I'm 95! Don't be too hard on yourself - it's early going for you, and it gets better.
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Ladies, I still have to read all the posts which I missed since the 18th. I have a headache now every morning, I think it is coming from my eyes, I hope so! My tumor markers came out perfect, saw my Oncologist yesterday. The one who is leaving. I am so heartbroken. He introducted me to a new doctor, very young lady. I can't tell yet, but she seems to be very pleasant. My wonderful doctor gave me a hug and I hugged him so tight, told him that he is a big part of my journey, he will always be a part of me now till my end. I have cried so much since I heard he is leaving. I guess it is all part of our emotions of this horrible journey. Anyway, he told me that the tumor markers 27-29 and the other two, which I get all the time, is only checked for breast tumors. It does not tell us about a tumor in the brain or thyroid nodule. It was a little disappointing to hear that. So now I seriously have to figure out where this headache is coming from, is it from my eye condition or what. Additionally, I still have to continuously get that thyroid nodule checked with a biopsy, the next one is in October. So many health challenges, ladies. Just wanted to give you an update. Thanks to all of you who asked about my results. The tumor markers are really down, such at 6.9, 9.9, and 5.4, for the three which I do every 3 months. They had never really risen, except for right after chemo, but was still within the normal range. While this is all positive, I still don't trust this horrible, creepy, ugly disease. It is very very creepy.
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*Great TNBC News - Announced This Morning**
The University of Texas MD Anderson Cancer Center in Houston spending $3 Billion to launch a massive effort against 8 particular types of cancer, and among one of those targeted by their research group is Triple Negative Breast Cancer. The team that is targeting TNBC is also jointly targeting a deadly form of Ovarian Cancer as well.
Here's the article so you can read more.
www.huffingtonpost.com/2012/09...
May this bring hope and light to everyone's future and to targeted therapies for TNBC.
Praying for all of my BC Sisters on BreastCancer.org today.
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*Great TNBC News - Announced This Morning**
The University of Texas MD Anderson Cancer Center in Houston spending $3 Billion to launch a massive effort against 8 particular types of cancer, and among one of those targeted by their research group is Triple Negative Breast Cancer. The team that is targeting TNBC is also jointly targeting a deadly form of Ovarian Cancer as well.
Here's the article so you can read more.
www.huffingtonpost.com/2012/09...
May this bring hope and light to everyone's future and to targeted therapies for TNBC.
Praying for all of my BC Sisters on BreastCancer.org today.
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I just saw this report on CNN. This is HUGE. I have to admit, when I saw breast cancer on the list I was not surprised but when i saw that they were going to be studying Triple Negative in particular, I was brought to tears.....Surprised myself by how emotional it was to see that somebody out there cares about what is happening to us.
Thinking of you all today.
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Another great piece of news: Bernie Price posted this on the TN FB page.
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thanks for that wrenwood, was going to post on here as wellbut I forgot.
Hope everyone has a good and safe weekend.
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Hope you ladies are enjoying the last day of summer! It's a beautiful day here in NC.
I have a PET scan next Thursday. Can't wait to get good news so that I can move forward. I feel like I've been living in a holding pattern, waiting for the other shoe to drop. Totally of my own doing, so I asked for a PET/CT for my peace of mind. While it's a lot of radiation exposure, I'm thinking it's worth it!
Waiting to exhale...0 -
Karen You & Me Both but mine next Thursday is bones & CT and of course mammo on Oct 1 and oncologist on 3rd. Me I wish they would do it the same day. But I will have to take a course on how to exhale. POSITIVE all the way though. My sister told me to get my inner "B" back!! haha
Praying we ALL get to breath real soon.
Prayers
Karen
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Karen You & Me Both but mine next Thursday is bones & CT and of course mammo on Oct 1 and oncologist on 3rd. Me I wish they would do it the same day. But I will have to take a course on how to exhale. POSITIVE all the way though. My sister told me to get my inner "B" back!! haha
Praying we ALL get to breath real soon.
Prayers
Karen
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This is Great New for ALL. I thought Triple Negative at first meant a death sentence because it can't be kept away with anything but chemo's/
For example, one project will jointly target a deadly type of ovarian cancer and "triple-negative breast cancer" - breast tumors whose growth is not fueled by estrogen, progesterone or the gene that the drug Herceptin targets. The cancers share some striking similarities at the genetic and molecular level and treatments for them are converging, MD Anderson scientists say.
OMG and Ovarian Cancer. Geeze Progress PLEASE for all types of cancer.
Gonna get off my wagon Now!!
Thanks for sharing Ya'LL
God Bless
Karen
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I heard the MD Anderson news today, too. I am beyond thrilled that TNBC is on their targeted list. I fully intend to outlive this disease, and today's news gives me so much hope!
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I heard the MD Anderson news today, too. I am beyond thrilled that TNBC is on their targeted list. I fully intend to outlive this disease, and today's news gives me so much hope!
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Love the news from MD Anderson!
Now, I'm off to find some cannabis...
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Love the news from MD Anderson!
Now, I'm off to find some cannabis...
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Love the news from MD Anderson!
Now, I'm off to find some cannabis...
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Karen & Kareybeth: I hear ya! I have been in a holding pattern too since I finished my treatment of chemo and radiation on June 28. I saw my MO and BS but the only follow-up besides a CA27-29 blood test is a mammo next month and a breast MRI next year. I just don't feel comfortable with that. With small, dense breasts, a mammo is worthless IMO and that is all they are offering after a year of treatments! Plus, my BS scared the heck out of me when I asked what signs that I should look for and he pretty much told me that if it spreads, it is terminal, but if it was to spread, I should hope it is to the bones as that is most treatable.
So here I sit not knowing if the treatments even worked. I keep feeling the lumpectomy area and it feels all bumpy. I had a huge hematoma after surgery, so that has made a huge concave area too. I keep feeling like the other shoe will drop too. So, I have decided to go to a different BS that is about 1.5 hours away (N of Atlanta) to get a second opinion on follow-up care. A friend recommended her after she saw me in a spontanious breakdown of crying and saying I don't know if I have beat this thing. I go next week on Wednesday. I hope I find some peace of mind and hope you do too. Please let me know if your scans gave you some comfort as I have been wondering if I should ask for a PET or CT so I can move on from this spot I am stuck in.
Inmate and Hope - thinking of you both and sending loving ((((((hugs))))) with the rest of the family here that treatments are kicking FC A*****.
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I walked today - 3 miles - feel nearly normal. I am on day 12 after round 3 of 4 rounds . . so 75% done . . and praising God that my sideeffects have been minimal as compared to what I have read on all these threads. . . . HOPEFULLY, this means that I am a strong woman, and blessed - and NOT that the chemotheraphy is having no effect to lower my percentage of recurrence.
Tell me - what do I expect that oncologist will say about how we FOLLOW after the chemotherapy is done? I already have CT scans for a heart condition - every 9 months . . can I "piggy back" on to that for scanning for cancer? Is there blood work, or what? How do I know? I have no breast tissue left, so if "IT" comes back, how will I know?
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Hey Guys, Isn't it so weird that the doctors don't offer anything up, up front!! On this site they have questions to ask but by the time you are finished with the whole year of waiting, worrying and treatments up front YOU ALREADY KNOW ALL THE CRAP that they do!!
At first I was just told it was not HORMONAL- They never said negative or triple negative. My sister had hormone treatments for recurring LARGE cists that weren't cancerous and they gave her HORMONE treatments. SOoooo she said that it was Great I was positive. I sat with that comforting idea until I was told by the nurse navigator that it is NOT good. They would prefer me to have hormone treatments because now they have to basically shoot in the dark with when and where and if the cancer will return since I do not get anything to keep it away.....insert BIG BOO HOO FEST!! I cried for days. AND at that time she did not say or my onc say I AM TRIPLE NEGATIVE. Insert CUSS WORDS!!
Good thing I talk to God all day long!! I think is the only one that hears or listens to me.
My take CatWhispurrer & FernMF is THEY DON'T EVEN KNOW!! My sister is going with me on October and of course all my tests and she is going to ask her questions because she thinks I just don't listen and I really don't know what is happening or is going to happen. I would bet her money if I would ever have any that when she is finished she will know a lot less than me because I am the cancer survivor!!
It would be great if they did have resources that we can use or go to so we can know the full scoop but they don't.
I will have Labs(blood taken) every 4 months for the next year and of course at end of year ALL THE TESTS bone, Ct & mammo and mid ways a mammo on my right breasts since it is where I have the lumpectomy. So in between the four months I will just PRAY AND BEG GOD TO GIVE ME STRENGTH AND STAY WITH ME AND HOLD MY HAND
Fern ASK YOUR DOCTOR, no matter what TELL HIM you want to know how proactive he is going to be and outline his plan for follow up!! I would!!
With my treatments, even during chemo I had blood works done before every treatment, and every other week labs from the oncologists. After Chemo I have been scheduled for the tests and every 4 months I have Labs with my visit. As far as I know that will continue so I have been told. I'll have to find out myself?????
Prayers for both of you and PLEASE keep in touch. I would love to know your progress ONWARD & UPWARD. Let's prove em all wrong.
Karen
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Its great to hear someone else talking about not knowing...and the MO's follow-up care plan! Because of the aggressiveness of TNBC, we have to be hyper-vigilant. Why is it so difficult to convince doctors that "protocol" and "the literature" do nothing to ease our fears?!
My MO believes in bloodwork only until there's a symptom to warrant a scan of any kind! No scan since dx, no scan after surgery, chemo and rads. I want to know whether it all worked! Is that too much to ask?
Frustrates the hell out of me.
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Journey4Life
I don't know why ALL the doctors are so different when we all sound alike. haha I can only assume it is in the way the doctors think and have learned to decided how much more they can do for each patient ~aka~ the team of doctors. I don't know but after everything is positive for an ALL CLEAR for me I am pretty sure it will be every 4 months for labs and twice a year for mammo and the yearly test scans. PLEASE ask your doctor to explain his plan for you. I sure as heck would!!
BASICALLY they are saying they can't do anything else with TN until IF or WHEN it should return. PRAYERS for all of us it doesn't & won't!!
Just out of curiosity has it been a full year since dx? Mine will be 3 months after treatments then a year as I was told and every 4 mths until a clean full year. But when you go to your onc/radiologists they also check you don't they? I go to them every 6 months and the surgeon twice then a year. MAKE THEM GIVE YOU A PLAN OR SCHEDULE or ask someone to find a source that will!!
I guess what I am trying to say is they should tell you something about the progress. Dang!! I would call the nurse navigator or one of the nurses and ask her set that all up for you
PLEASE KEEP ME & OTHERS INFORMED. WE HAVE TO TRAIN ONE ANOTHER!!
Prayers
Karen
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My MO didn't t even ask for blood work, and no scans. Only if a symptom seems to last longer than a couple weeks. I only see her every six months. I went in April and will go back again in November. Should I be asking for blood work, I try not to think of the worst. I look to this site to provided me information and support and I am very thankful for this site and all the support I find here. Should I be asking for more?
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I'm going to share something.... My Oncologist does not order scans for early stages and insurance often fights it. After my Chemo is done, I will feel aches in several places and he will order the scans...... I am not an advocate of lying, but this little white lie won't hurt anyone and could save my life. We do what we have to do..
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My MO says no scans etc unless there is a reason to (ie: symptom). I am part of the metformin trial though so I will have blood work (extensive) every 6 months. And between my MO, surgeon and family doctor; one of them sees me every 3 months for a check up. I have a mammo on Nov. 5th and will have them yearly. But as for MRI, CT or PET.....no. I do need to have a bone density scan every year though because of a medication I was on as a child that can cause bone density to decrease. So I was having that anyway and will continue. I always have a yearly pap etc so I'll continue that too.
I am also feeling really good but that makes me scared to think that the shoe will drop. It's hard to try and walk forward when you feel like there's little eyes staring you down and something just waiting to pounce. I see the counselor at the hosptial every 2 weeks and that helps me to normalize my feelings. She only sees the BC people so she can tell me that what I am feeling is very normal. I'm coming up to the 1 year mark in November and it's scary. I'm back to work on October 1st after being off since my surgery on November 22/11.
Some days are easier then others but yes I live in fear of recurrence and I am also hoping that shoe NEVER drops (even if it's a designer shoe.....I'm not interested!!)
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My MO says no scans etc unless there is a reason to (ie: symptom). I am part of the metformin trial though so I will have blood work (extensive) every 6 months. And between my MO, surgeon and family doctor; one of them sees me every 3 months for a check up. I have a mammo on Nov. 5th and will have them yearly. But as for MRI, CT or PET.....no. I do need to have a bone density scan every year though because of a medication I was on as a child that can cause bone density to decrease. So I was having that anyway and will continue. I always have a yearly pap etc so I'll continue that too.
I am also feeling really good but that makes me scared to think that the shoe will drop. It's hard to try and walk forward when you feel like there's little eyes staring you down and something just waiting to pounce. I see the counselor at the hosptial every 2 weeks and that helps me to normalize my feelings. She only sees the BC people so she can tell me that what I am feeling is very normal. I'm coming up to the 1 year mark in November and it's scary. I'm back to work on October 1st after being off since my surgery on November 22/11.
Some days are easier then others but yes I live in fear of recurrence and I am also hoping that shoe NEVER drops (even if it's a designer shoe.....I'm not interested!!)
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Lynn I think that is the individual doctors call on how they are going to handle their patients. I didn't even know that about me until after my visit after my radiation. I've noticed some in here have had mastectomies either one or both. I just had a lumpectomy. Maybe that has something to do with it I don't know. If you feel you should, I would. But you never know if you are not healthwise thru their eyes showing you need all the tests. Scans aren't suppose not to be that good for you. They cause cancer too, remember?
I seriously think it is how the doctors are trained and what they think they should do for you, BUT if you disagree let them know about it. I don't know enough myself and every time I ask a question I regret asking
Then my BOO FEST begins. My take, I am going to let go once they get me through these tests, beg for my port to be removed and not look back until and only IF OR WHEN it taps me on the shoulder. My escape plan to to haul hiney and not look back and maybe it will forget where to find me I plan on taking a stand and not let it control or consume me!! Prayers to US ALL!!
Karen
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borntosurvie
Congrats on coming up on your one year. I know in the back of my mind it will always be there. I just have to not let it consume me and I am sure once you get back to work that will help you out tremendously because you will get back to your normal path of living. It just very well may be in their mental markers what they think is best for each individual. I would LOVE to find a decent primary but that too shall come one day. I do also have several doctors in between that watch out. My primary well errrrrr a different situation all together. Working on that on.
Prayers
Karen
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borntosurvie
Congrats on coming up on your one year. I know in the back of my mind it will always be there. I just have to not let it consume me and I am sure once you get back to work that will help you out tremendously because you will get back to your normal path of living. It just very well may be in their mental markers what they think is best for each individual. I would LOVE to find a decent primary but that too shall come one day. I do also have several doctors in between that watch out. My primary well errrrrr a different situation all together. Working on that on.
Prayers
Karen
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Kareybeth, thanks. I hit my one year since dx in Aug. I went back to work in Feb, I missed everyone, and was glad to be back. However, daily someone would ask me how I would feel, and that always seemed to conjuror up memories. I changed jobs this past Aug and chose not to tell anyone about my cancer. Although I have my own daily reminder, since no recon, I manage to go on and at times even forget it. I might tell them but will wait awhile. It seems to help my psyche. I only completed 7 of 8 tx, and no rads. I had open heart surgery for a clot after my 7th tx and mo didn't think I needed last tx. That is hanging over me, and like "born" waiting for recurrence, but until them..living for today!
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To scan vs not to scan dilemma! My MO said up front that he does not believe in scans unless there is a reason for it because he feels it affects our quality of life. And, at first I thought well, you can say that because you're not in my chair but, after reading the stress everyone goes through leading up to a scan and then waiting for the results, I am inclined to agree with him -- and that is precisely what he meant. Now, I am still early in the game, so-to-speak, and maybe I will change my mind but, I am trying to be aware of what is going on in my body and have started a spreadsheet of the little aches and pains I might have. I have a very high tolerance for pain and am concerned that I might just fluff something important off but, keeping track of myself on a daily basis is helpful for me to get to know myself and also helpful in case there is something that is more than an ache or pain in daily routine living.
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