Calling all TNs
Comments
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Gosh, ya'll are talking about all my concerns. My onco does not believe in scans unless I have a lingering problem lasting more than 2 weeks. Other the flip side my rad onco has me doing mammo on my cancer boob every 3 months and the other every 6 months. I have only hada bone scan, before chemo as my back was hurting me more than it had for quite some tim. I go tthe all clear on that. I forget who mentioned that their lumpectomy area is all bumpy- mine is too. I also knwo I have many hard spots from rads and lymphedema. This makes it even more difficult to check myself.
I often wonder why my onco never ordered a PET scan? He said he just does not beleive in running tests unless something warrants it? I guess the blood work every 4 months will suffice.
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Yep that's about the size of the whole ordeal. Only if it warrants. My onco may change his mind after my completion of the tests at the end of Sept. Fine with me
Less stress of getting all worked up!!Pinky you sound like me. I have a very high tolerance and HATE HATE HATE to take any kind of meds including aleeve for pain so I put it in front of me and dare me to take it!! Usually put it right back in the bottle by the end of the day. I also brush off signs of things/pains aches telling me it is all in my head. My biggest downfall.
You know what Lynn that was a good idea to change your jobs. You don't need a daily reminder of things. You need to move on and you took your first important step. Again Congrats YOU ARE A TROOPER AND A SURVIVOR!! YOU GO GIRL. There will come a time when you will want to share and unfortunately I feel it will be when someone needs you to understand their fears and then you will gladly share
Lory the kind of blood test they give is enough, if they pick it up in that, which they will that's when they will move forward. All these machines and scans doesn't seem to be doing us any more good. I pray the day when they don't have to use them anymore. Just a pill or a shot will do it!! haha BETTER YET A FLIPPIN' CURE!! ALL IN?
PRAYERS
Karen
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Yep that's about the size of the whole ordeal. Only if it warrants. My onco may change his mind after my completion of the tests at the end of Sept. Fine with me
Less stress of getting all worked up!!Pinky you sound like me. I have a very high tolerance and HATE HATE HATE to take any kind of meds including aleeve for pain so I put it in front of me and dare me to take it!! Usually put it right back in the bottle by the end of the day. I also brush off signs of things/pains aches telling me it is all in my head. My biggest downfall.
You know what Lynn that was a good idea to change your jobs. You don't need a daily reminder of things. You need to move on and you took your first important step. Again Congrats YOU ARE A TROOPER AND A SURVIVOR!! YOU GO GIRL. There will come a time when you will want to share and unfortunately I feel it will be when someone needs you to understand their fears and then you will gladly share
Lory the kind of blood test they give is enough, if they pick it up in that, which they will that's when they will move forward. All these machines and scans doesn't seem to be doing us any more good. I pray the day when they don't have to use them anymore. Just a pill or a shot will do it!! haha BETTER YET A FLIPPIN' CURE!! ALL IN?
PRAYERS
Karen
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Kareybeth: Just noticed you live in SC. We vacation to Isle of Palms every April with our kids and my parents. My brother use to live in Mt. Plesant but has moved back to Indiana (GO COLTS!!!). We are Canadian but my bro went to Indy on a volleyball scholarship for University. I LOVE SC!!!!
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Today is my one year cancerversary, the day I received that blablabla phone call last year! I had to edit my "signature line" a few times lately. I am recovering from my BMXw/TE's.
All my TN sisters, thank you for keeping this wonderful site going. I come here and read, pray, laugh, cry...we are all doing our best at kicking this F@#*! cancer off the face of this earth!
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Horray for you Sandlake...one yr is awesome!
Maggie
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Hi Sandlake - congrats on one year! A question for you, why did you have a mastecomy one year after the lumpectomy? Did they find another tumor, or did you respond to the BRCA results? If this is to personal of a question, I understand....
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My doctors don't do any scans either. I get an annual mammogram and a quarterly "feel up" (aka clinical breast exam) alternating between my GP and my MO. Had my mammogram on Monday of last week and got a benign report. Whew!
Hope everyone is doing well. Hope and Inmate, thinking of you!
I'm gearing up for the CIBC Run for the Cure next Sunday here in Mississauga. The charity is the Canadian Breast Cancer Foundation and they are doing really good work advocating mammograms for women under 50 and have made some strides in terms of research for TNBC.
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Congrats to the anniversaries!
I just want to mention that if any of you has concerns and would feel better getting scanned or more blood tests as follow-up, you should bring that up to your doctor. If you request a scan and your doctor denies you, then your doctor is liable should something show up later. This came up when I had hodgkins. My original doctor laid out a plan for me which included a scan at the end of treatment to be sure the tumers had shrunk and then a follow-up scan three months later to confirm no changes. I had to move midway through treatment. My new doctor did not want to do the follow up scans. I had no symptoms, but I had to know nothing else was growing inside of me. Eventually, he agreed to the scans. I was fine and more importantly, I had peace of mind. Most doctors won't take chances and deny a request. If you have genuine concerns, don't hesitate to voice them. You are your own best advocate.
@borntosurvive - What's the metformin trial? I take that for pcos and have been taking it through my treatments. Is the drug also in a breast cancer trial?
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Hello EnglishRose,
I was glad to know that my post was encouraging to you. I have now gone 7years,3months and 3days.
I am based in Exmouth, Devon.
Keep looking forward.
Best Wishes,
Sylvia.
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My MO doesn't believe in scan unless there is a lingering symptom, then he calls for one right away. I can't stand the anxiety of scans, and have to be careful not to ignore symptoms but I have had some weird things come and go. Since they "went", I assume they weren't cancer. One of the strangest has been a burning spot in my scalp. It was present for months but also began a few months after starting the tamoxifen I take for the 5-10% ER they found after chemo/surgery. I rarely feel it now. I have also had rib pain on both sides that has lasted for several weeks then abated. I've been walking for several months now and cycling some, even up to 15 mile rides on a hybrid bike, but yesterday I cut brush everywhere away from the house as someone tried to break into our privacy fence. I was so worn out! I think it just takes a very long time to recover from chemo and the surgery. Every time I use a new muscle group, I am very sore and fatigued and sometimes get new pains.
My MO does take blood every three months for tumor markers, though.
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Congrats to everyone on their anniversaries and progress!!
borntosurvive Most of my life has been here in SC except for the 2 years in Florida and then I missed it!! would have never known I would be that way growing up and not waiting to get out of SC. LoL
Prayers
Karen
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Hello to everyone. Seems there are many new names on this thread over the past few days. Welcome to all. As I read the signature lines, appears that i am now and "Oldie".
I wanted to chime in regarding scans. My last PET scan was 12 months ago due to lingering hip pain....turns out that it is degenerative hip disease. My Onc offered another PET at my 6 mo appt in April and I declined because i was/am feeling good. My next 6 mo check up is next month and I am sure she will again offer a PET scan but as of now, I will be declining. I just don't want to subject myself to the radiation exposure, if I do not have any sympotoms to warrant the scan. PLUS, the anxiety of waiting for results is HORRIBLE! I turn into a real emotional mess for the days it takes to find out what is going on. I know much of my confidence is due to the fact that i am over 3 years out. That doesn't mean that i am not vigilant with paying attention to my body's messages and I do keep all of my follow-up appointments. I think about cancer everyday.....just not as many hours or minutes a day as I used to.
I totally agree that it takes the mind and body a long time to recover from all the surgeries/procedures and chemo that is needed to treat this crap. I know that it was a full year PFC that I even started to feel normal again. So you newbies.....hang on and keep plugging along, you'll get there.
Love to all of you.......Especially Inmate and Hope!
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Thanks for the communication Navymom. You are truly an inspiration....
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JazzyJ~ i don't mind the questions...After my chemo treatment was over in April, I had the genetic testing done. I didn't qualify before for the test, but since the guidelines changed to include TNBC I opted for the test. I am BRCA2 positive. So for peace of mind for me I decided to have a hysterectomy/oopherectomy (Aug 20th) and my BMX (Sept 10th).
NavyMom~ your words are very encouraging, thank you!
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Navymom - thanks for the encouragement! I hope one day to be an "oldie."
It is somewhat comforting to know that others are in the same situation I'm in regarding scans. Sounds like some of our MOs went to the same school. I have a few additional comments about scans. First, I'm not asking for a scan at any regular interval. I'd just like to have one...sort of a baseline that tells me/us, "right now, we see NED." Second, taking one characteristic of BC at a time does not warrant a scan. However, taking them all together (BRCA1+, TN, lymph node involvement that was extracapsular and a poorly differentiated tumor) IMO warrants a scan. Third, peace of mind goes a long way in the healing process. Fourth, what if there are no detectable symptoms and yet cells are multiplying?
Enough said. I have an appt with my MO next month. This will certainly be something we discuss.
On a brighter note - I hope to have exchange surgery in November! Time for these uncomfortable TEs to come out.
Hugs and love to all
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Welcome to the new ladies! Navy..if you are an oldie what does that make ME?
Re..scans..nope never had one...ever...after I was done with treatment discussed with onc and he said if you want one you can have one..anytime but remember that scans show EVERYTHING and and may create alot of stress for you...I felt like I had been through enough stress at the time and the thought of adding to it just wasn't for me...either the chemo worked or it didnt...
Yes...I am very vigilant on symptoms...I like the two week rule myself...if I feel like something is going on I think..ok..lets give it two weeks and if not better I will call the onc...usually the "symptom" is gone within a couple of days and I forget about it..
Things I watch for are shortness of breath, headaches, fatigue, weight loss/lack of appetite, and just apathy about life in general...before I was diagnosed I lost alot of weight, my hair looked like crap, and I really had alot of apathy towards life..just didnt feel right...so I watch for this kind of stuff...
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Titan - I've seen your photos, particularly one's from your daughter's wedding and you are the vision of health!
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Titan, that makes you about 2 months "older" than me!
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Found this on another thread and thought I'd post it here:
Some really exciting news for us triple negs reported yesterday in USA Today here regarding mapping all BC gene mutations among other things:
Sounds promising!
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Thanks for great article, Journey. Interesting that they may be looking at the PARP meds again. Also sounds like Avastin may have a comeback for TNs.
I understand that BRCA 1 positive usually goes along with the recommendation of oopherectmy....Now since they are seeing such similarities between TN ovarian CA and TN BC, I just have to wonder if oopherectomy will be recommended for BRCA negatives, too. I will be asking about that at my next Onc appt.
Thinking of you Hope and Inmate.
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Congratulations on your cancerversary Sandlake. I had a lumpectomy last year but will be having genetic testing next month. If positive I will be looking at a bit more surgery.
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Happy Monday to everyone!
Would love to hear from Hope and Inmate, but I know the both of you are probably pretty tired, (an understatement I am sure). We miss you!
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Titan~ Great post you started! Love how supportive everyone is.
Heather~ The genetic testing changed my life, and will help my family members be proactive.
Journey~ Thanks for sharing the article......great progress!!!!
NavyMom~ Being BRCA2 I was recommended by obgyn/onc for a hysterectomy/oopherectomy. Good question about including BRCA negatives with the new findings!
bak94~ Happy Monday to you..it is a beautiful sunny day here, I enjoyed a nice walk this morning with husband and friends
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NavyMom - I hope to have an ooph in a month or so when I have my exchange surgery.
Heather - I pray your genetic tests will be negative! Mom tested BRCA1+ and sister was negative. Why did they decide to have you tested now?
Sending inmate and hope strength for healing!
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I just finished making 22 fascinators for my team of amazing friends and family for the Run for the Cure on Sunday. Going to sport my pink tutu that I made for my last chemo and we'll all be decked out. I'll post a pic if I ever learn how to.
Congrats on everyone's anniversary dates. Celebrate, dance, sing......we're all greatful.
I get my results tomorrow from my genetic counseling that I had done in February. Should be interesting to hear. I have no family history but because of my age at diagnosis and TN they tested me. Fingers crossed it comes back fine. Sending warm hugs and positive thoughts to everyone xo
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born - crossing my fingers and toes for you!
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Hi Everyone,
My Oncologist sees me every 3 months. From what I have read on bc.org most women with TNBC are getting Oncologist check-ups every 3 months for the first 2-3 years or even up to 5 years. I'm scheduled for 90 day check-ups for the first 5 years.
My profile is: Stage 1 / 0 nodes / BMX / 4 Rounds CT / Reconstruction / Saline Implants Naturelle by Allergan
Best wishes to all of you for a great week!
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Congratulations to all who are celebrating anniversaries - that is so wonderful for you!
(((Inmate))) and (((Hope))) - sending strength and love to both of you.
I had my follow-up visit at Dana Farber last Friday, and they tested my tumor markers and CEA. So first, I'm doing fine with the clinical trial drug - if this is as bad as chemo got, no one would ever turn it down. I'm not noticing any problems at all, so far. it's been just over three weeks and I'm hoping that it continues to be a gentle treatment. Now, about those tumor markers and CEA - they seem to be in conflict with each other. My CA27.29 went from 89 to 101, not a big jump but not down either. It's probably too early to know for sure if the drug is working so maybe this just becomes another baseline measurement. The CEA, on the other hand, came back at 0.8 with normal being below 2.5. If this test is valid, I wonder if it's showing the "cancer stem cells (or embryonic cells) are dying out. I don't have a prior CEA to compare, so there's no context for me. Some people with mets have a CEA above 2000, so it could be good news that mine is normal. Or it's possible that my cancer is not expressing the protein that the CEA test measures. If anyone has any history with a CEA test, I'd love to hear about it. (I'm going to post this on the Stage IV forum, too.) I think this test is more widely used for colon cancer, but everything I read says it's also valid for breast cancer. I have a CAT scan on 10/5 so I guess that will be the decision-maker.
I am thrilled about the MD Anderson "moonshot" program. It's very interesting to know that TN ovarian and TNBC are very similar. I think we may see some clinical trials with a focus on chemo treatment for TNBC that matches ovarian cancer treatments.
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Luv, so glad the trials are going easy on you...pray it stays that way. Wish I could help on the numbers, but I have never had bloodwork done, or if they did they didn't tell me. It will be one of the first questions I ask my mo at my 6 month visit in November.
I too, am sending positive thoughts for hope and inmate miss your posts
Born..thinking good thoughts for you too, crossing all my fingers and toes, arms and legs too!!!!!0
