Calling all TNs
Comments
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Luv...I'm hoping you are ok. I still have soreness to the touch every now and then, but I'm fine.Because i suffer from constipation when I strain a bit it gets very sore and tender in the rib area...stays like that for a few days and then the pain goes away. If it lasts for longer than two weeks, it has been suggested to call your oncologist and let them know.
Simple...such great news. We seem like we took this journey on the same date...well at least I had the mastectomy done on 8/1/13. I'm hoping for the 3 year mark too.
Arlene....hope you are in a good place mentally today
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Cel, I had chemo first, too, and it shrank my tumor dramatically. One way to look at it is that you're getting the worst part of treatment over with first! In March I was sitting where you are today, and the end of treatment seemed very far away -- but today Is my LAST radiation session. Woot! Hang in there all of you who are starting or in the middle of treatment, you can do this!!0
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Good afternoon . . .
We are hoping to interview twenty women who have been diagnosed with Breast Cancer, and who are TRIPLE NEGATIVE.This interview will last for no more than ninety minutes; we are pleased to offer to you an honorarium of $300, as a thank-you for taking the time to participate. (There will also be a short pre-interview assignment that we will ask you to complete--about 25 minutes long, and we'll offer to you an additional $50 for that!)
Of course, I promise that this is not a sales presentation, of any sort--strictly opinion research.
I can be reached, anytime, at 212.289.0087. Please call me so that we can set up an interview with you. Or, if you prefer, please send me a contact number, and convenient time to call, and I will be pleased to follow up with you.
Thanks, so much.
David Leonard
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David Leonard
Director
pfc Opinion Research
New York, NY
Tel: 212.289.0087
Fax: 347.438.32110 -
Lisa...so happy for you. Go out and celebrate
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Oh thank you so much! It's so nice to be welcomed to this group. I really appreciate the warm welcome. Im so happy that you are 4 years out and doing well! Big big hugs!!!
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Oh thank you so much! It's so nice to be welcomed to this group. I really appreciate the warm welcome. Im so happy that you are 4 years out Cocker and doing well! Big big hugs to all of you!
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Simple - awesome news!!
Cel - so sorry you're joining us, but welcome. I had chemo first as well and was able to feel my tumor shrinking. I ended up having no cancer cells left at the time of surgery, so it was nice to know chemo kicked butt.
Luv - as I'm sure you know I have had rib pain since chemo. Still have it today. Some days are worse than others and can feel it just lifting my arms, but my ribs in certain areas are always tender to the touch. I'll never know why, but chemo is obviously to blame since that's when mine started. I have so many other weird things like this too. For example, I have a nerve on my right outer thigh that burns and then goes numb when I lie down once in a while. This is probably some sort of minor nerve damage from my hysterectomy. And then there's the pressure in my breast where my tumor used to be. Just all sorts of aches and pains now. My new normal (that most days I'm grateful for, but some days really annoys me). I know it's hard not to worry, but our bodies have been through a lot and I bet it's just one of these sorts of weird random pains!
Lisa - wohoo!!! Hope you're doing something to celebrate!
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Thank you Bluedog! Your story is so encouraging. Glad to know that this is the correct path to take . Hugs!
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Simple, happy for you! Julie, (((Hugs to you!)))
Bluedog, Celebrating with you! Cel, Welcome to the best group anywhere!
Luvie, I am glad Ally shared her rib pain situation, I was thinking of her as Iread your post. She is right about the new normal...we all have to get used to it and I am betting that is whats happening with you now.
Shorfi and Cocker and anyone I missed, like Julie said, hoping everyone has a great day.
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Congrats Bluedog!!!
Thanks for the prayers and encouragement. I first noticed the pain below the ribs in the front when I was putting lotion on my stomach Friday morning, so now I keep rubbing there to see if it's still tender and of course it is. Ugh! The area makes me worry about liver mets. I've heard it's extremely rare for TN to spread to the bones , so my brain is saying it must be the liver and it's inflamed! Sorry, just letting it all out since my hubby is tired of hearing me whine about it! Anyway hope everyone is having a good Monday. I was at the Doberman rescue all day so that was a nice distraction! Thanks again! Love you gals
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Thank you all for the warm welcome! I start chemo this Wednesday . Yay!!! A month after diagnosis , I can start kicking this !
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Yes it is that attitude that will do it Hulagirl!
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luvmydobies - I totally understand what you are going through with all the aches and pains. Like Ally, I also get odd and unusual pain and aches all over my body e.g. my rib cage is always tender (from radiation), my joints hurt on occasion, my head often hurts and my bones ache. I always think the cancer has spread - so I am constantly having to remind myself to take deep breaths in and out and to relax more into life instead of always jumping to conclusions. It is 3 years since the beginning of my chemo treatments and thank God I am well in general, and my oncologist says there is no evidence of disease - what more can I ask for? I have graduated to 6 month appointments instead of 3 - so that is an encouraging move.
Wishing everyone comforting days and good sleeps at night.
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Hello, new here. Dx'd on Oct 14th TNBC at age 53 based on Breast Lump Biopsy. My Grandmother and her Sister had Ovarian Cancer so my BRCA test is expected to be POS. My 9 month old German Shepherd/Rottie pup found my tumor in late Aug of 2015 and he hasn't left it alone since.
I'm still getting all the tests results in or waiting on more tests this week. Friday I had a triple punch lymph node biopsy (Axillary), today I had my Echocardiogram. Waiting on CT Scan, MRI with Dye Scan, Bone Scan and Chemo Blood Work Up.
I meet my MO on Nov 23 for my Chemo Consult. I've already met with my BS who tells me that I'm going to need to go the route of Neoadjuvant Therapy based on my tumor size and rate of growth. I'm fairly sure the Lymph biopsy is coming back pos as the Radiologist who did my Mammo and US told me the Lymph node was nodular.
I wish I had more answers right now because it's really difficult to know what to think about the future. I also have Collagen Vascular Disease (MCTD).
My whole ride to this point has been off center. Initially after I found the lump I also received a post card in the mail from our insurance company (Military) that they no longer covered my remote location and that I would have to find a new Primary Care doctor. Oh wonderful. So my husband and I did the weeks of calling around trying to find a doctor who takes new patients and who takes our insurance. Finally after a ton of rejection we found a practice that had a new Physician being added but I couldn't see him until Nov 9th.
Panic set in. So my husband pleads with this doctors office and our insurance company for 10 straight days to find some way to get me seen by someone. The Doctors Office and the Insurance Company said go to the E.R. The E.R. said we still need a Physicians referral for a diagnostic Mammogram/Ultrasound. More waiting. Our local rural hospital advertised Oct Breast Awareness Month with low cost Mammograms and I was able to schedule for Oct 10 (more waiting). When scheduling I specifically told them I had a lump. Get there on the 10th and they said they can't do a diagnostic..... Need a Radiologist available and that he only comes once a week. Suffice to say I finally get an appt for Oct 14th and he gave me the news that I definitely had cancer in the left breast and a large suspicious mass in the right. Schedule for biopsy which he said he would be doing.
Get to biopsy and a Surgeon is present, no Radiologist. The biopsy is done in each breast (3 core biopsy per breast). Next day the Dr. Office for my new Primary Care calls and said the new Doctor wants to see me immediately and he'd received the Mammo. Drive 57 miles to see him at end of day. He said he's already referred me to a specific Breast Surgeon at Cancer Centers North West, so expect a call from them to schedule and appt. I tell him my right breast is bleeding and he looks and sends me to the E.R. Radiology immediately which turns out I had 3 massive hematoma's and my whole breast was filled with blood. Had to pack my breast with ice for 24 hours.
Surgeon who did Biopsy calls that my results are in and to meet with him in 3 days. I do and he tells me some disturbing things especially that since I'm older I wouldn't be a candidate for targeted therapy..... I tell him that my Primary Care Doc has referred me to CCNW and he got very sullen and slammed out of the room saying "well good luck with that". Leaving me feeling really upset and confused.
I wait for the call from the BS, nothing, a week goes by, then starting on week 2. I check my insurance company site for my referral approval and the Surgeon who had done my biopsy has canceled my referral to CCNW. So now many more calls and again the wait for a call from CCNW scheduling. The BS was out of town but my records were faxed to her. Scheduler calls again, she can see me on Nov 16th. Scheduler calls again later in the day, no she wants me in on the 10th and will squeeze me in at 5 pm for a 2 hour consult! I get in and she tells me we have to works fast and that I should have been on Chemo in Sept after I first felt the lump in late Aug. What took so long to get me in is that the Surgeon who did my biopsy besides canceling my referral also refused to release my pathology report. The BS said it took some political wrangling but once the pathology was faxed she knew I needed a consult fast.
So here I am, still confused a bit depressed and only have a few bits and pieces of where we are going from here. On Nov 23rd I hope to have my treatment plan in place. The BS feels the cancer has most likely Metastasized.
During all this my husband was "Involuntarily Separated" from the Army while he was deployed in Iraq, a year from retirement. We lost our retirement and benefits. I get 6 months of coverage so a of Nov 1st we have to really take advantage of getting on the ball with this treatment plan. Luckily enough my husband was immediately hired by a very family friendly company that takes good care of Vets so we should have new insurance coverage by March (new enrollment period). We are both kind of a mess from stress.....
As for me, I began to feel very fatigued in late spring, by mid summer I needed daily naps to function. I figured it was just a bad flare up of MCTD. I also noticed that no matter how much I washed my left armpit it had a smell, deodorant didn't help at all. I thought it was menopause.... When I had told the BS that she told me my breast tissue shows I had went through menopause 3 to 4 years earlier. Had a Hysterectomy in 2007.
I'm sorry this is so long but this is the first time I could tell anyone how difficult this whole situation has been since the pup found the lump to now it's been a roller coaster ride. Thank you all for being here under the circumstances we are joined together and I'm so glad I found a place to learn and share and listen.
Stephanie
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Stephanie, what an ordeal you've been through already! I am retired military and I have to commiserate a little with you because I had a similar situation with a BS when I told him I wanted to be treated at a major regional cancer center, not the VA or his private practice (he wanted me to get chemo "across the street at my buddy's private practice" which I drove by and was a low budget "chemo parlor" type place, yikes). Anyway, that BS got sullen and tried to scare me and tried to mess with my referrals and did some of the same things you describe - which made me all the more certain that I NEVER wanted to see him again for ANYTHING. I did get in, after some painful waiting, to the bigger hospital which is a 120 mile round trip but worth every bit of that hassle. Once you do get started on your treatment plan you WILL start to shake some of this initial stress and worry off. I hope that happens for you soon. I am glad you found this place to talk and vent, it's helped me a lot.
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oh, I also wanted to comment on the "every ache and pain" part of the conversation. I am so in that club, even in active primary treatment. I am so worried that suddenly I will discover that I have mets that were too small to be seen on the initial CT scan but now show up and start causing problems. I know that *could* happen but seems unlikely at the moment and there are so many reasons for aches and pains during chemo it is crazy to obsess about them but I still do. I have a pain right now that comes and goes in the gallbladder/liver/right lower rib area. I know my liver enzymes and other liver functions are good, even better than a few weeks ago. I also know that I can't really put my finger on where it hurts, and that if I put my hand on my lower rib cage the pain either stops or moves - so referred pain from the tumor area is my guess. But it sure makes you crazy, doesn't it?
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Oh jeeze. Can I chime in on the "random rib area pain" convo? Because i have that too, on my left side. Lower rib area. I also get it in my back where the radiation came through, and the end of my scar zings and throbs like crazy! Stupid cancer. Oh, wait. It isn't cancer, its the treatment that caused this! One thing I did, was knowing how paranoid I am, I made a list of all my "usual" pains pre-cancer. I've also added pain that started during chemo, figuring that most pain that started then would not be due to mets. Yrrrrf. Fun stuff.
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Thanks, all, for the good wishes!
Lower rib pain? Yes!! Since rads and on the radiated side. Owww!
Steph713, yikes, how awful. So sorry you've had such a hard time getting a diagnosis and treatment plan in place. Please let us know how things develop. A year ago my dog got very protective of me, to the point where she growled at friends and extended family who came to the house. Recently someone suggested that maybe she sensed the cancer. Who knows? Now that as of yesterday I'm theoretically cancer free, maybe she'll relax.
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Steph I am so sorry to hea rof all that mess.....good grief. And I agree with Peabrain, the diagnostic phase is the most stressfull, and now that you are getting a treatment plan things can settle in and you can fight for good health again, instead of fighting the stupid system you were in. And tell your hubby thank you so much for his service.
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Rib pain here - comes and goes in frequency and intensity. We were at a habitat for humanity house earlier today helping and i kept thinking i am so going to pay for this later. here i am with my rib throbbing. mine rib pain started after my mastectomy - i think i developed a layer of scar tissue. i did myofascial release which helped when i had frozen shoulder after surgery.
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Adagio, congrats on graduating to the six month checkups! That's awesome!!
Hi Stephanie, my name is also Stephanie! I'm so sorry you've had to endure all the mess you're going thru right now! What a mess! I can only imagine the stress you feel right now. I'll say lots of prayers for you. We are all here holding your hand and thinking of you! (((((HUGS)))))!!
Notdoneyet, my pains are actually in the same area you mentioned. It's so frustrating the way my mind is wandering. I didn't have radiation so it kind of makes me worry a little more. Before cancer I probably wouldn't be thinking the pains must be cancer. Sigh...
Anyway, you ladies are wonderful. I'm just sorry any of us have these worries! Hope everyone has a restful night! XOXO!!
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Not yet read all the posts that I missed..
Just to quickly update the biopsy results. It is not cancer!! But we still don't know what it is. But it is not cancer...!!! Sigh of relief...
Thank you everybody for the support!! I am touched and feel so blessed to have you all...
Love..lots of it!!
P.S.... let me quickly read all the messages that i missed reading.
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BanR, thanks for the update! I'm so glad it's NOT cancer!! XO!!
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Peabrain,
Next month I will be 3 years out. No problems so far. I don't go looking for problems but they just might find me.
I stopped chemo after only two treatments of AC. I would have died of chemo poisoning. Pet scan, CT, all say I'm NED's.
I feel good. I exercise, eat better, get my blood test done, take supplements ( B12 & D3 along with others).
So living a while with stopping chemo early is possible. I just going to try and live as long as I can. I have days when my body says, you're not 69. Other days it says, oh but you are.
I come on and read every few days and get caught up. Welcome to all the newbies, this is a great place. The emotional support is so necessary. I don't post often, as I don't have any problems. I just try & get out & live. I feel attitude is a major factor in our struggle. I don't feel cocky, but I'm not going to give up without a fight.
Best wishes to all our ladies and couple of gents. May our holiday seasons be merry and bright. Love to all,
Marsha
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Hello everyone. I hope you're feeling well and everything is fine.
My name's Noor and I'm writing for my sister's diagnosis. She is 24 years old. She was diagnosed on September10th with IDC, in her left breast, stage llA /pT2NO, Grade 3, Triple negative, Nottingham histologic score 9/9 also it has Medullary carcinoma features (slow growing, and has immune system cells at the edges of the tumor).
On 3/11/ 2015, She had bilateral skin and nipple sparing mastectomy and reconstructive surgery at the same time. The surgeon removed 8 lymph nodes and all were unaffected 0/8.Also, we have a strong family history, my mom and aunt. Fortunately both are survivor after 2 years (mom) and 30 years (my aunt).
One of her specialists says that she can forego chemo because the cancer has not spread to lymph nodes and tissue of both breasts is removed. While the oncologist recommended chemo and should be 6 roundsbecause she is very young. Other oncologists assure that chemo is very important, that means there is no escape from chemo.
I would just like to ask the ladies have my sister's situation about, how many rounds of chemo did you go through, and what What drugs were you given, and how were they administered?. Also, I came across many articles that refer to the treatments that are used with standard treatment like PARP inhibitors. did you go through any of those treatments.
I'm sure that all of you will win the battle against cancer like my aunt, my mum, my mum's friend and others. it just needs patience and strong will.
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Marsha, thanks for letting us know you're doing so well!!0
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Hi Noor, glad you found us over here and I hope your sister is doing well!
Being young (I was 34 at diagnosis), all my doctors and the cancer board at the hospital all pretty much demanded that I get one of the strongest chemo regimens out there. I had 4 dose dense rounds of AC, one ever other week. After that I had 12 rounds of taxol (once every week) and at the same time I had carboplatin every 3 weeks for a total of 4 Carboplatin treatments. I ended up being BRCA negative so I'm not sure about the PARP inhibitors (I believe that's mainly for BRCA positive??? I could be wrong though, sorry).
All of my drugs were administered intravenously through a port that I had surgically implanted on my left chest area. The port was removed 4 weeks after chemo.
Please let us know if you have any additional questions, it's a great group over here!
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Hello Nooralkad and BanR,
I just wanted to say that I am glad you took my advice and posted on this thread. You are in good hands with these lovely ladies and will get lots of support.
Take care,
Fond thoughts,
Sylvia.
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BanR - WOHOO! Awesome news!!!
Noor - you're a great sister to come here and do the research for her, although I'm sorry to hear of her diagnosis. I was the same grade and stage, IIA, T2N0, grade 3, had a double mastectomy, 34 years old, and all opinions I got said chemo was absolutely necessary. I did ACT + dose dense Carbo before surgery. I tested BRCA+, which is why they added Carbo for me.
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