Calling all TNs
Comments
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Nettie, I'm the exact same way! I have a meltdown every damn day thinking this beast will get me! It seems like when I relax is when something pops up! I'm still having issues with my "period" and my doctor is like it's not going to be normal coming out of chemopause. But how in the heck do I know when to push for an ultrasound!? I'm thinking all kinds of things like vulva, vaginal, ovarian or uterine mets! I am BRCA negative but that still doesn't make me feel at ease. I still get hung up on having surgery before chemo because I have no idea if the chemo even worked. I wish I would have been more level headed at diagnosis instead of panicky wanting the tumor out ASAP because now I keep thinking if I had chemo first we would've known if it worked by shrinking the tumor. But I can't go back and change things so I have to just hope and pray I made the right choice! Aargh!!!
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Brooke,
Not sure what it means for your treatment but emotionally, it's a downer...feels like chemo was for nothing. I'm sorry.
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Luvmydobies, I had surgery first also, so I'm in the same boat. Just sucks not knowing.
Plus all these dang pains that I'm told is from treatment. How do they
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My MO said she is going to check my tumor markers every three months. I also am trying toget on a clinical trial. I also heard it's all about your immunity so I am starting to eat most vegetarian with no sugars or dairy. Thay's going to be hard, but i would rather eat toliv and enjoy livd than live to eat and cut life short. If that doesn't help then at least I know I did all that I can. I have a 4 year old daughter, so I need to stick around for her. It is a total bummer emotionally, but I'm a planner so I feel better having a plan going forward.
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I know what you mean Nettie! Sometimes I wish they'd scan then sometimes I'm like no I'll be scared if the scan shows anything. They say there can be false negatives and false positives on scans.
Brooke, I wish you the best and please keep us posted. XOXO!!
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That's right Luvmydobies! But with all the dang hurting, it would be nice to know, but I'm told that is "something" shows and it's not definitive, it can lead to a lot of unnecessary testing and stress! It's one of those "dang if you do, dang if you don't"! And the learning to live with the fear!0 -
do you think a bone density scan would show cancer? Or at least say a possible issue due to low density?
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Hello everyone. I am a 2 year triple negative survivor. The last month I have had breast pain in my opposite breast right behind my nipple. My PCP and I both haven't felt anything but I am still scared. I am set up for a mammo tomorrow morning. My question is, did anyone else have breast pain when they found their cancer. That's how I found it the first time but there was a lump then.
Thanks everyone!
Lisa
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PET scan this past Friday ordered by new Onc. Results back. ALL CLEAR!!!! Praise God!
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AL-that's awesome so happy for you guys.
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AL - fantastic news!
I have sort of a silly question. I finished chemo in July and had a BMX with TE's 7 weeks ago. Just in the last week I've been having pressure/slight pain exactly where my tumor used to be. I had a complete response to chemo, so there was no cancer found at BMX. I also just had a clear abdomen/pelvis/chest CT a couple weeks ago. I'm trying to be rational here, and truthfully I don't think it's anything to be concerned about, but the fact that these weird sensations are right where my tumor was is a little unsettling. Do you think this is just a coincidence and it's simply healing from the BMX? Or should I put a call into my BS? I've called with quite a few pains lately, so I really hate to call again with something like this. Any thoughts are appreciated, thanks.
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The brain MRI and body CT scan came back normal and all my blood work is still normal. Anybody have any idea why my shin bones are hot and the neuropathy burns and I'm tired beyond tired for the last 10 months? Many doctors later and there's still no diagnosis.
How much longer can I sit on the sofa and wonder what's making me feel so bad? !!!!
I read something about an auto immune response the body initiates to eliminate cancer cells. Possibility?
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newbie here. Overwhelmed by the reading. First thing I need to do is check with my MO at next infusion to clarify stage, etc
I had a lumpectomy 9/6. BS planned to place balloon for 5 rads. But, one lymph node was positive
Doing 4 rounds of chemo then radiation. Interesting, I just don't let my mind go to "what if it comes back?"
Maybe just stupid listening to docs say, margins clear, "got it all". Prognosis good
I had quadruple bypass in 2012, ruling out the adriamyacin (sp) chemo as it is toxic to heart. Prior to this in July had laproscopic hysterectomy ......very very beginning of endometrial cancer. Had not penetrated wall, ovaries, tubes, etc. all taken out and clear. Am I not asking the right questions? Is this cancer way way worse than the others?
Confused and now scared
Second infusion 17th. Getting wig styled Saturday. I am 53, married, mom of fraternal twins in college
Hugs
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Allydp my wife, to this day, speaks of weird sensations and sometimes "shooting pains" in her breast(s) on occasion. She has asked both the surgeon who did her mastectomy and the plastic surgeon who did her reconstruction about it. Both said she may have this forever. Earlier on, she was told it's "nerves coming back online after surgery". They're less frequent now and certainly tolerable for her, but she still gets occasional "sensations" here and there.
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Toby,
Please don't panic! There are certain aspects of triple negative bc that do make it worse than others, but it's not all bad (well, any cancer is bad.)
Triple neg bc is a tricky little devil that enjoys migrating and recurring a little more than other cancers in the first 5 years or so. Studies are showing other bc to be worrisome for 10 years. Also, since trip neg has no hormone receptors, you don't need to worry about female hormone therapies etc. Encouraging it to come back!
Mostly, it's like any other illness...it's in your attitude. I figure, as long as I go for my regular doc visits and let them know about any PERSISTENT abnormal pain, I'm not worrying about cancer coming back!
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hi!!!!!
Was out of touch for sometime and so happy to read all the posts.
Last year Oct I got my surgery done, so while I complete 1 year post surgery..there is a new problem which has come up.
On and off I get a very very very mild headache at certain points and it goes away on its own. Doesnot look sinusitis but if it persists for 2 more weeks then maybe a CT Scan will be asked for.
Anybody heard of a similar problem.
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tnbcRuth,I feel you! Even though you are further out than me, I have the same issues!! But I'm not even being diagnosed with Neuropathy! Just get this pain in my legs from my knees down!
Also, for me, my thyroid is an issue but can't find a local doctor to take me serious about needing more in depth testing, I've been on 100 mcg of Synthroid for 10 years or more!!! After chemo, I'm sure this needs to be adjusted but as of today, haven't found a doctor to listen! Anyway, thyroid issues can make you tired and make your bones hurt!
I take Claritin daily because of allergies and there are a lot of women on these boards that say it helps with bone pain! If you aren't taking it, maybe you could ask if it would be ok to try!
Also, although I haven't had scans since treatment ended, all scans during treatment were clear and bloodwork is still good, but after a day at work, most days I head straight home for a nap! And I take Multi Vit, Vit D3, Calcium, and Garlic!
Hoping you find answers soon!
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BanR, welcome back! I've always had headaches off and on for as long as I can remember. Many many things can cause them such as allergies, weather changes, stress/tension, anxiety, dental issues, ear issues, hormone changes, too much or too little caffeine, not enough water, medications, etc. I've heard as long as they don't persist or get progressively worse then it's probably just an ordinary headache. The weird thing for me was during chemo I never had a headache, but a few weeks after they started again. I drank a lot of water during treatment then backed off a little and started drinking cokes again. I have to have a small one in the morning or I'll get a horrible headache. Then I drink mostly water the rest of the day. Anyway try not to worry and keep us posted.
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BanR- For the past week I've had a headache every single day. It just started happening this past Monday. My DH thinks I'm going through withdrawal or its a symptom from the chemo. My last chemo was on 9/23. I am monitoring the situation. I drink plenty of water per day (64oz) and its still there. I started taking Ibuprofen (2 tabs) a day and that gets rid of the headache. In fact it feels like a tension headache. I'm trying not to worry about it. I will mention it to my ONC on Monday to see if he has any suggestions and then monitor it from there. I also meet with my MO on Thursday. So, if it still persist I will push for some sort of testing/scan whatever.0 -
Ally, I have a spot on my affected side exactly where the first biopsy was, it is my sore spot. And like you, BMX and complete response to chemo. I have wondered about why it is sore there, but I do not believe it is a recurrance. Hope that helps.
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Brookezine, I am sorry you are going thru this. Cancer sucks. Are you going to have another round of chemo? What does your Onc say is next for you?
Eating healthy and a positive mind can help so much in our fight, so keep it up. I hope you get in a clinical trial, keep us posted. Meadow
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Results in from Pet Scan.........thankful and happy but a little scared still. There is nothing in the lungs.....yay (thank you Lord) there is some uptake in both sides of the neck lymph nodes. Right now we are thinking infection or inflammation since it is in both sides. I finally convinced them to give me an antibiotic. I sure hope that is all it is and I will repeat the scan in 3 months. If I don't start feeling better with this antibiotic, then I am to call her and we will proceed from there. I am still not breathing well.......would appreciate you keeping those prayers coming. Thank you all and God Bless!!!
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Stupidboob, so glad your lungs are clear! Have you tried any type of inhaler to maybe help you breathe easier? My asthma acts up sometimes during this time of the year. It's also time for all the respiratory ailments like colds to kick up. My hubby had a bad chest cold last week and still hasn't completely recovered. They gave him antibiotics, hydrocodone cough medicine and prednizone but most of these things are viral so they tend to linger. Hoping you're just dealing with something like that or allergies. Prayers and HUGS for you! Praise God for the clear lungs! I love your username by the way!
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thank you Radical!!!
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thank you Nettie ! I will try the claritin and post it's effectiveness.
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Luvmydobies thank you so much...........:)
I have an inhaler but I am a major medicine phob so I have not tried it yet. I know stupid. I will though........when they nurse (NP) prescribed it for me she did not tell me how to use it, so I had to read the pamphlet and I read about the bronchial spasm (I think that is what it was) and it could be deadly.....well it stopped me in my tracks and I have to work my way up.....I hate being this way, but been this way for years. You would think after all the chemo and crap, I would not fear any meds............but I STILL DO........:( The NP thinks I have allergic asthma but the oncologist did not agree and so we waited until after the scan...now we have to figure it out. My primary is out on maternity leave and I will be so glad when she gets back. I do think though that I might just go see a pulmonary specialist though since so many lung issues are in my family.
I hope your hubby is better soon.
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thanks for the reply redheel.. even i am increasing my water intake
also luvmy, stupidboobs..in my case too, the possibility of congestion/cold or allergy is strong. In your scan stupidboob, the inflammation could be because of that.
hugs and prayers for all..
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I find that I hesitate to tell my story because I don't want to cause anyone more fear. But, I suppose it's better to err on the side of education than not. My TN cancer initially presented with pain in September last year. I went to the doctor in early October and she did a physical all the while telling me that breast cancer doesn't first present with pain. She couldn't feel anything and told me to get my regular mammogram. By the time of the mammogram ín late November my tumor was 5cm. I get that this stuff grows fast, but geez. My tumor was almost directly behind the nipple and deep. On the other hand, I still have uncomfortable pain that feels similar to that original tumor pain in both reconstructed sides and my doctor just assured me at my 3 month check up that all was fine. I guess the reality is that any pain could be a problem cropping up, but I chose to think of pain as my friend now, a warning that I need to pay attention, but not a reason to panic.
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I find that I hesitate to tell my story because I don't want to cause anyone more fear. But, I suppose it's better to err on the side of education than not. My TN cancer initially presented with pain in September last year. I went to the doctor in early October and she did a physical all the while telling me that breast cancer doesn't first present with pain. She couldn't feel anything and told me to get my regular mammogram. By the time of the mammogram ín late November my tumor was 5cm. I get that this stuff grows fast, but geez. My tumor was almost directly behind the nipple and deep. On the other hand, I still have uncomfortable pain that feels similar to that original tumor pain in both reconstructed sides and my doctor just assured me at my 3 month check up that all was fine. I guess the reality is that any pain could be a problem cropping up, but I chose to think of pain as my friend now, a warning that I need to pay attention, but not a reason to panic.
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Im lying here having a middle of the night anxiety attack. Ive just had my 3 month check up and I'm so frustrated I could scream. I have minor neuropathy in my fingers and toes. I deal with money at work and I can't handle the cash well, but my oncologist thinks it's carpel tunnel that just coincidentally started during chemo and affected my toes too????. I have pain on my ribs still, but he says it's still just surgical stuff from January mastectomies. I have pain similar to the initial tumor pain on both sides. Every headache scares me, but I've always had headaches, so how dumb is that? .. I'm questioning the fact that they only tested the sentinel node, which was negative, but they didn't look any further, just in case. I am BRCA 1 positive, so Im absolutely positive I did the right thing with the double mastectomies. At the 3 month checkup the doctor just checked my lymph nodes and the scars. Its very very difficult to find that they won't do blood work or scans or something else to look for tumors. I worked on ambulances for several years so I have a bit of medical experience and I should be able to get my head around this, but my sanity still feels a bit shaky at times.
Before this cancer I considered myself a thoughtful, intelligent, sane person. I was not an alarmist by any means nor did i tolerate drama in my life. I was concerned about others who appeared to be hypochondriacs. Just when I thought I'd be shaking off the last year of pain surgery and chemo, I find myself doubting everything and feeling like the doctor isn't giving me all the facts. So, maybe there is even a touch of paranoia, I think this must be some sort of psychological phase, maybe a sense of traveling the road alone, now that I'm not talking to docs and nurses every week. At least the hair is growing back and I'm not so darn cold at night. ...sigh. My only daughter just went in for her genetic test, age 26, and I'm nervous about the results. My 24 year old son won't go get tested and he has kids of his own already. Why doesn't he get that the genetics are so important to his family? Oh yes, and three weeks before the cancer diagnosis I was diagnosed with celiac spru. The very worst part of this psychological experience has to do with the experience i had caring for my mother as she died from beast cancer just 3 years ago. It was her second round of beast cancer but no one tested her for BRCA i think because of her age. If only I'd known then what i know now. Thanks for listening.
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