Calling all TNs
Comments
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I'm not much of a poster, but I do carefully follow everyone's story. I'm fortunately NED, but some SE still bug me. I wish all you dear women the best care available. I know what this bucket load of manure is like and too many of you have had too many buckets thrown at you.
May I bring up another topic? I had a single mastectomy, and have a very heavy form to wear in pocket bras. I find this very uncomfortable and hot. Lately, I've been going around (in public!)without bra or form. I wear a snug tank top under my shirt, but my 69 year old remaining boob just hangs and bounces at will. No one has said anything, but it has got to be quite a show! I'm strongly considering surgery to remove my surviving breast. Any one with similar experience and solution?
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Regarding metformin and stopping it for xrays, surgery, etc... I've been on it for 10 years and I've never, ever been asked to stop taking it. I've had the breast MRIs, PET/CT and several xrays, not to mention LX, BMX, and a couple other surgeries. The biggest concern is whether or not your renal function is good. And because I am diabetic, I've had labwork before any tests that involve contrast or radioactive glucose to be sure my function is good. I have not found it to be a big deal.
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Jan69 - I had a BMX with TEs, then later the TEs were removed. I tried shopping for a form and hated, hated, hated the ones offered to me. I ended up buying what the "youngsters" call chicken cutlets. They are not very big but I didn't care. And I bought these bras:
This is a camisole pocket bra that can be ordered from Amazon, Elita Les Essentials V Neck Camisole with Pockets - $20
I also ordered a few Coobie bras, and I really like them, too. They are all way more comfy than true mastectomy bras, and way less expensive. Again, $20 each. They also have pockets, plus a small foam pad so you can use both.
Look for breast enhancers...they are made of silicone but just a whole lot less bulky than true forms. And again, much less expensive.
I hope this helps!
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Luv, Thanks for the bra info. I did a quick look at the two bras and they both look like what I've been dreaming about. I hate the thought of elective surgery to remove my healthy breast, but I've got to come to terms with my shape, one way or the other. Janice
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Lovely face...yes my co workers have to take a pill once a day but I talked to to them and it really is not an issue...they take it in the morning with a little breakfast..they are monitored by blood tests..not sure ..maybe once or twice a year to be sure the levels are where they should be....yes they have these tiny little scars on their necks but if you didn't know it you wouldn't notice it...I hear that there is a new way to do this thyroid surgery..through the armpit so there is no scar on the throat... for what it is worth..my daughter is on thryoid medicine at age 23...it has helped regulate her weight...it is amazing that this tiny, tiny gland can create such havoc...
welcome to the new kids here...we WILL get you through this...!
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Hi all. I wanted to share my story. I am 37 years old. I found a lump in early March, which ultimately came back positive for metaplastic spindle cell carcinoma, an extremely rare type of breast cancer. The tumor was 1.9cm, grade 2, zero positive nodes. I had a right mastectomy, and am I glad I did because I recently tested positive for BRCA 1. I just had 3rd AC treatment today. One more to go!!! I plan on having a left prophyllactic mastectomy, as well as hysterectomy and oophorectomy. I have three children ages 13, 11, and 3. My Mom was diagnosed with a breast cancer 5 years ago (age 60, also triple negative with 10 positive nodes.) She is doing well, with NED. She also just tested positive for BRCA 1. Oh, forgot to add that the tumor was triple negative.
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I bought Been-a-Boob. They are essentially bean bags that you can swim in and wash in your washing machine. They are light and are easy to wear. I prefer them to the usual prosthesis. They come in various shapes and sizes. They also have them where you can take the beans out as you are undergoing reconstruction.
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Hello ladies,
I'm sitting here trying to decide if I have fluid in my abdomen, or I'm just fat! It feels the same as it did when I had a seroma. Like jelly. Of course this makes me sure I have liver mets. I know... Last week I thought I had brain mets - but maybe my brain feels bad because my cancer encrusted liver, can't filter my toxins!!!! Yes, I took an Ativan. I'll try to get a blood panel drawn this week. Maybe my PA friend will feel me up, and tell me I'm fat
Crazy week here, my 17 year old son, is flying out to LA, to go to his
girlfriend's senior prom Thursday.0 -
Been a Boob site is very informative. I might just try making my own boob using some micro beads. The pictures and description make it look like it could be worth a try. Thanks Born to Survive for the information. Janice
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OBXK - Oh Sweetie! Maybe you and I both are just fat, so who cares? Let your 17-year old fly to LA, he has his own destiny to fill, nobody, not even mothers have control over their children's destiny. Everyone is God's child even though we mothers think that he is my child. My son had left me in N. Calif and moved to S. Calif for 9 years (the worst days of my life). By prayers alone, he was brought back to me after 9 years, lives half mile from me now with his wonderful new wife.
As for your horrifying thoughts, will it make a difference if I told you that I care about you and love you and don't want you to feel miserable and have horrifying thoughts. Hope you can watch an inspiring movie or something until your PA tells you it is just plain fat.
Titan - thanks much for the info. I have already begun to research "how to reduce the size of thyroid nodule via natural methods". If the biopsy is negative for cancer, I plan on trying acupuncture. I am finding out that low hormones maybe one of the causes of nodules. Haven't I been telling you guys that my estrogen and progesterone have both been low. Also finding out that chinese herbs and acupunture works for some people. I have some hope today, thank God.
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With chemo brain, forgive me if I told my story a while back.. ha! My palpable lump popped up overnight, I swear. I was two months into 56, my current age now (well until this Friday when I turn the big 57) ha. It was on July 12, 2011. I had a feeling it was BC, even though I'd had several b9 scares in the past. My Mom was the only female in our family to have BC, and she survived it for 30 years until she was diagnosed w/ AML. I'm betting it too was TN since there were no after drugs. (don't know if those were even used back then. She was only 38 or 39) As we've read before, treatment was radical mastectomy and heavy-duty radiation. She had only the affected breast removed and it never recurred in the other.
I was in the middle of a hurry-up work project, as a business operator.. so put off the doctor until I could devote my time to the medical world. And boy did I. Like many others, it was a whirlwind of tests... 4 core needle tissue samples proved I was Grade III TN, KI-67 @ 99%, poorly differentiated IDC. No vascular invasion present.
My first official consult after my regular GYN was with an oncologist rather than breast surgeon. Simultaneously it was suggested I have a BRCA test and I was actually surprised when it turned out positive. My onc. was determined I'd need surgery first. I wanted a BMX before I knew of my BRCA status, so those plans didn't change. I consulted several general surgeons and came close to proceeding with the surgery. A little voice told me "no.. don't do it." There were no real oncology surgeons in our state at the time drove me to a university hospital out of state seeking a TN savvy oncology breast surgeon. My stage I 1.88 cm mass very close to the skin surface had grown quite a bit while waited 5 weeks to be seen. I was then a stage IIa. No evidence of node involvement, but we couldn't be sure. I saw the medical onc. first and the protocol at their institution was neoadjuvant therapy. I had to look at it a whole new way.. but it turned out so well for me. TX PLAN: 12x weekly Taxol followed by 4x FEC or FAC. Taxol failed after 3 treatments (a 41% growth by ultrasound) and we immediately switched over to FEC. After the 1st FEC treatment I had a 91% shrinkage in mass. The hardest part of chemo for a while was residual neuropathy from only 3 Taxol treatments. I SO sympathize with those who went the full 12 and developed this awful SE. The subsequent FEC treatments.. a total of 6 every 3 weeks to make up for the inability to use Taxol went smoothly. Fatigue was my biggest complaint. After my blood counts came up to have BMX surgery I had surgery out of town..making it clear not to place Tissue Expanders if it interfered with clean margins or compromised my surgery in any way. I woke up with them. Fast forward to finally receiving pathology. What little bit of tumor I thought I felt was scar tissue. Thanks to chemo I achieved a pCR- no detected carcinoma under the path microscope. Again, much to my surprise! When chemo works it works well! I was already prepared to go into a trial for residual tumor.. albeit I thought it would turn out to be quite small residual. My radiology consultation was a resounding NO to rads. The risk was much greater than the 3% benefit in my case. Only time will tell. My surgery was March 19th. Making plans to have either rad hysterectomy or just BSO end of this summer. Boy.. wish it were sooner. With my BRCA1+ status and post meno age.. ovarian cancer scares the snot out of me.
I'm out of fight mode for now, and it feels so weird. I know many of you can relate. My university cancer institution MO wants to see me every three months for 5 years. That may change after the first 3 years.
Wishing my TN sisters, younger and older all the best.
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LuvRVing-thank you for the info. I am having a hard time finding something I like. I have the silicon really heavy prothesis, but my pt doesn't want me to wear them, so I bought the microbeads, but they are a bit too small, maybe a bigger size, plus they are not heavy enough to keep my bra in place, but work ok in my compression cammi, but it does ride up a bit.
Still having tightness and LE issures, but I will just deal with it. The sleeve and compression cammi are helping quite a bit, but it does get a bit hot on those nice days!
adgirl, welcome! I also have brca 1, had bmx and will have hysterectomy soon.
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Karen - Nope. No brain mets, no liver mets, no fluid in abdomen, no toxins, no seroma. Just a tiny tiny bit of central obesity and you need a wee lol.
Just love the sound of your crazy household. As for your son he is in love and everything stops for that. Dr Annie
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adgirl5 - Wow! what a journey!!!!! Strong woman! What's up with being diagnosed in July? I was diagnosed on July 20, 2010, you on July 11, 2011. I hate that month. I am wondering what is K1-67, what kind of report is that? I also had a little bit neuropathy, had 4 X taxol, every two weeks. I am also being seen every 3 months by my Onc. and every 6 months by the BS and Rad. Onc. MRI every 6 months for 3 years.
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Karen - do you have any pics of your big old farmhouse. Annie
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Gotta little bit of a worry tonight. My grandson Ben was born with a heart murmur and he has always been closely monitored. He is only a little chap at five years and still wears a size three pants and tops and little size 2 undies. The doctor thinks it sounds like a valve problem now and he had to go for a blood test today. Took two nurses, a doctor and his daddy to hold him down so small or not he's strong. Just a bit concerned about him and can't settle tonight. Maybe because its taxol tomorrow as well.
Oh well ladies have a good nights rest. Tomorrow is another day. Annie.
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tnbcRuth, I have my wig sitting on a stand on my closet shelf also, superstitiously afraid to get rid of it. It too was longer and blonder than my current short, light brown hair with highlights.
This is the latest I have seen on TN treatment. http://hormonenegative.blogspot.com/2012/05/erlotinib-before-doxorubicin-kills-more.html but it is still in the experimental stages. As another survivor of the Red Devil, I'm interested in new treatments coming along, and hope they will be gentler than AC, and very effective.
Ladies, I'm reading your stories frequently, but not posting. I am thinking about you all who are going through tough times, and sending you my love. My heart goes out to you.
For those of you starting this journey, I am two years down the road and feel fine. I'm busy with aging parents, a daughter with a new boyfriend, a screen porch the dog destroyed, walking daily, exercise class, having friends to dinner, etc., in other words, normal life. It feels great!
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Bak94 - I tried the micro-bead forms and didn't like them, either. They move around too much and they can change their shape much too easily, especially if you're carrying something up against your chest. Just not quite enough structure for me. I had ordered mine from the TLC catalog. I've definitely felt the best with my chicken cutlets and the two bra styles I posted. And they are waterproof so I use them in my mastectomy swimsuits, no problem.
Welcome Adgirl5. Sound like you've had quite a ride so far.
Annie - any invasive procedure, even a blood test, is so tough on the little ones. I hope everything turns out ok for him. Good luck with your next Taxol treatment!
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LovelyFace, For what its worth, I recently went through a whole thyroid nodule thing also. They found them as incidental findings on a CT scan, and my doc could see them when I swallowed. I did ultrasound, and then biopsy. They turned out to be benign goiter nodules. Who knows why I got them, but apparently lots of people do. Maybe its not enough Iodine in the diet, and I have certainly avoided added salt (which would have had Iodine) for about 30 years. I think these nodules are very common.
I was also a vegetarian who lived mostly off of vegetables and fruits, and yogurt (few starches or white foods) for ten years before I was diagnosed with BC. I had been on a carefully low-fat diet for about 35 years. So, I was plenty mad that dispite all of my efforts at health I ended up with BC. My reaction has been to start eating meat, and I am enjoying it.
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Hi MaineMama. I too have metaplatic BC. Have you joinedour facebook page for women with MBC. It is a private group so you have to ask to join. Bena Roberts is thr facilitaor of the page. Lots of great info for this rare type of Bc. welcome to the Tn family
Maggie
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mitymuffin, I hope my nodule experience goes exactly like yours, thanks for uplifting me today. I think they will do the biopsy tomorrow and after that it is the waiting of the results, the worst part. Do you know whether yours has grown in size since the biopsy? Thanks much for the assurance that it is common. I hope I can join the common group pretty soon. I think this nodule explains my neck pain, even though the doc doesn't think so. Why wouldn' one have pain if there is an extra thing which is not supposed to be there?
Mity, I feel exactly like you. I always bought expensive healthy food items, always chose the better product in a grocery store, better brand, no matter the expense. Only to end up with this horrible diagnosis. I get so mad when I think about some of the things other people eat. I sit with some people at lunch everyday and all I see is high fat burgers, fries, and coke. I might have had at the most 10 cokes in 3 years, honestly. And a donut maybe one or two every two years. This diagnosis has no rhyme or reason, it sucks!
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Thanks Ladies.
Have Dr. appt. next Wed. The fluid was less this AM. No fever - so I think I'll live until then
Annie - PM me your email and I'll send a photo, I don't know how to do it here. It no longer has the farm - smack dab in downtown (one and a half blocks long) It has a wrap around porch, which is covered in jasmine vines - currently blooming.
Off to polish shoes, for the son...
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lovelyface-
July sucks - My most unfavorite month from here on out. KI-67 is cell proliferation rate- speed in which the cells are dividing.. just another aspect of aggressive TN. Mine was high... don't think I've seen higher but many are right up there. The good news is chemo usually works pretty well with those aggressive cells.
I wasn't actually treated until October, which is even scarier. I think my hysterectomy may be moved to July from August. It's just as well since I have absolutely no love for that month.
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mitymuffin - I too ate what I thought were really good foods. Loads of vegetables, fruit.. mostly organic. I'd too cut out all "the white foods" for 12 years before diagnoses. Rarely had a glass of wine, stayed active.. was the picture of health. Who knows though.. it may have prolonged the inevitable being BRCA+. I do know some of the healthiest people with healthy lifestyles get cancers while others who junk food it out, smoke and drink like a fish come away unscathed.
I still think maintaining a healthy diet once diagnosed is extremely important. Exercise is proven to at least moderately lower recurrence risks.
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Hello all of you wonderful ladies! I have only posted a couple times, but usually pop in every day just to see how everyone is doing. I myself have not had a diagnosis (yet), but my mom has. She was diagnosed with triple negative breast cancer at the age of 55, stage 1, 1.5 cm, no nodes in December 2006, then again this March, same exact thing, opposite breast. In 06 she had lumpectomy, chemo (not sure what kind, just remember it was not a very strong dose) and radiation. This time she is having dose dense AC then Taxol, then double mastectomy. Tomorrow is her last AC! We also just learned about a month ago that she has the BRCA1 mutation. We always kind of figured this genetic mutation was somewhere in our family, as my mom's mom died of ovarian cancer when she was 37, (I believe she also developed breast cancer after her ovca dx), my mom's sister died of ovarian cancer when she was 48, and my mom's aunt died of peritoneal cancer when she was, guessing on this one, about 65? She too had also had breast cancer, we believe was probably triple neg., but she recovered from her breast cancer just fine. Thank God my mom has already had a complete hysterectomy. Her and her other sister decided to have it done after their sister was diagnosed with stage IV ovca. Up until my aunt's diagnosis, none of the women in my mom's family had been getting screening for ovca. My sister, brother and I have not had the BRCA test done yet, but will very soon. My sister and I are getting complete hysterectomies whether we test positive or not. I have this gut feeling that my mom will beat this again. But I am scared to death that she will later develop peritoneal cancer. Her aunt had it, but she also never had a complete hysterectomy, she still had one ovary. I have always been a worrier, ever since I was a very little girl. I worry every.single.day. I wake up worrying, and the last thing I'm thinking about before I fall asleep at night is cancer. I have visisted the FORCE website, but sometimes I think doing all this research and hearing everyone's stories makes it worse. I'm thinking maybe I should take a break from the internet and see if it helps with my stress. Anyways, just wanted to share my mom's story. I wish she would join you guys. Maybe sooner than later I can get her on here
I hope you all have a wonderful day!0 -
I done with chemo and doing the happy dance!
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Congratulations, Naan1004! We're all very happy for you!
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I am doing the happy dance for you Naan1004!!! GREAT job and enjoy time resting and recovering
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woohoo Naan! Dance the night away!
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Congratulations, Naan1004
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