Calling all TNs
Comments
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Hi Rachel,
I did have the tight heavy elephant sitting on my chest feeling. I remember it well. I attributed some of it to that tight surgical bra I was in for a while. You are about 2 weeks out, you should start to feel that pressure let up maybe after 4 weeks, it will be a noticeable difference. However, I got the pressure back when the PS started the fills. I also spaced the fills out and did not do them weekly. I did them every other week to give me time to adjust. After a series of fills, one appointment was where I couldn't breathe when I got out to the parking lot. I called the office later that afternoon and they tried to tell me it would 'settle down' in a few days. I called back after a few days and continued to insist there was something wrong. Finally I insisted to see the PS and I told him it was too big for me and making it hard to breathe. He reduced the previous fill. He also told me that the front office never conveyed to him my call-ins or what I was experiecing, he was not happy with them. He said anytime it doesn't feel right to let him know. So on my exchange surgery I still wanted to be smaller. He had ordered in 2 sizes of implants to fit on me during surgery, but the day before surgery, I called in and requested one smaller size, so he did order that smaller size in. He took all 3 sets into surgery and I awoke with the smallest one.
That pressure will continually go down as you start to heal. I was also told to drink lots of water and no caffeine to aide in healing, which I did follow. I was banned from caffeine for 6 months by the PS.
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I asked my Oncologist about the dates during chemotherapy (after the 2nd treatment is when I asked this). He said I was cancer-free since the surgery date, which was Jan 4th. I call it a healthy-victory date, because we don't like to reference 'c' terminology around here. So my 20-month healthy-victory is this Thursday! When I looked up the meaning of remission this morning, it said 'the absence of symptoms'. So with that being said, I believe they are probably subject to interpretation by their medical team and the date refereneced is probably reflective as well of other things such as final pathology report. I've seen people report their status from different dates on here, I haven't really seen it lean more one way or the other.
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here is link showing how common failure of implants are after radiation...just some info...not pressing my oinion either way...helps to have more info to make your choice
http://www.sciencedaily.com/releases/2012/04/120417102405.htm
The radiation can make such a difference in any way for reconstruction. Many PS who do natural breast reconstruction also recommend waiting at least 6 months before recon to allow some time for the skin to heal a little...I had a failed diep side (the recon side) which my surgeon has a 1% failure rate...lucky me I guess :0 Went back in three months and hap a gap on that side which looks great! One thing also is that natural recon usually involves more that 1 procedure to get em just the way you want them. More Plastic surgery than I ever dreamed I would have but man gotta admit I am starting to look good haha. It is a commitment for sure but for me I love my choice. Happy researching
Maggie
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here is a link to the Nola thread. also try the Charleston bound thread as there is a center there that specialized in natural breast recon
http://community.breastcancer.org/forum/44/topic/736412?page=819#idx_24547
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Hi Bluestars and Rachel welcome to you both. There is always room for another TN Bluestars but its sad you have to join us.
Lana and Gwenie I had a single MX too. Was not my choice, I was recommended to have that without reconstruction and so i went with my BS's decision and never thought to question it, though I wouldn't have done anyway. The less surgery the better for me, not very brave!. Anyway when I first lost my breast I was very self conscious and thought everyone would notice when I went out (I'm sure it was all in my head) so I used to wear a light jacket as it wasn't cold to hide the fact I only had one breast. The day I got my prosthesis was wonderful. The breast lady was great, everything fitted well and I came out feeling like a million dollars because I now had two breasts again and didn't need a jacket. It's not a problem to me, the bra's are really really pretty with gorgeous colours and are made very well but looking back I think I would have chosen to have both breasts off and being as I was fairly large breasted like you, would have chosen slightly smaller prosthesis as I have a small frame. It is always an individual choice but I must admit looking back I would have been scared that the cancer came back and it got missed somehow underneath reconstruction. Only the person concerned can make a decision like that but it's always wise to be fully informed on different levels. My righty took to my adopted one very well and I really don't have any concerns.
First day of spring here ladies but its not very warm yet as a southerly is blowing. Roll on the warm weather then I can keep up with all of you ladies. I hate winter and after having had cancer I still hate winter!. Wouldn't you think I would be satisfied that I am here to go through winter lol. It's Fathers day as well so got a special dinner to cook for all the family.
Keep well. Hopefully all of you having treatment won't experience too many side effects. xx0 -
Wow ~ thanks for all the good info...
Lana, I was also very large breasted, DD+, and the doctors advised me towards a double mastectomy due to the left breast having so many "hot spots" they were concerned about. I was so shocked about having cancer and it being TN that I did very little research on procedures and mostly on Doctors. I love and trust them completely. So that is why now that the reconstruction failed in the radiated breast and I am looking up info I am surprised that I didn't truly think about it failing. HA! I thought all was done and over with! Just so thankful to be alive.
Maggie, thank you for information about New Orleans. I will look them up. I am too scared of the DIEP flap, anesthesia,all the recovery time and failure again. I will look into the NOLA thread and read there.
Debra, what a great idea about the other forums! Will do!
LOVE the healthy~victory date as the surgery date!! Congratulations for your 20 months this Thursday! I will be one year September 22. Also, just ordered me a SURVIVOR sweat shirt for the fall because not only am I surviving I want people to know I am THRIVING and living full! (My oncologist doesn't use the cure word either, but she does say I am statistically the same as she is about getting cancer in the first place...kinda liked that)
2bluestars, I am your story with the chemo first! I wanted the off as well but the MO said you can actually feed the cancer if not the right treatment and since TN is a hard one to treat at times she wanted to see from first 2 treatments what would happen. Mine also shrunk immensely and when I actually had the double mastectomy there was NOTHING left in the breast of cancer! I took the "red devil" treatment and did great on it just tired as all get out. But I did take the meds for nausea and such. Taxol was slightly tiring but no reaction and didn't even have to take meds. Also, concerning radiation, was a great success and that is why my PS thought I would be a good canidate for expanders at MX. He didnt fill them until after the radiation was over and we waited 8 months to make sure I would have good vascular support. But POOH 3 months after recon the radiated side had to come out.
Rachel, I also had the post depression and heaviness on my chest. Good advice by Debra, I agree.
Cocker Spaniel, I just put on a sundress (minus the right one, Pancho) and am going grocery shopping! It's too dang hot here in Texas (103) to cover up. Thank you for telling me about the prothesis, I am going to give it a try but can't for a few more weeks. Doc wants me to heal more. I also asked him if insurance would take out Lefty's implant (she is healing fine) and just wear a sports bra and be flat! He said it would but for me to slow down and consider the options. Good idea!
I've also considered looking into a sling bra for the good one! haha! Just teasing! Got to have humor here! 😍
Hope and Hugs to all, gwenie0 -
Karen some of your delicious soup would soon get rid of my sniffles I'm sure. On my way over to get it.
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Hello ladies,
Someone has kindly pointed out that I shouldn't tell people to demand scans and I do agree with her to a point. This is just my opinion, I am not a Dr, if I tell you to jump off a roof, would u? Please ask your drs what is right for you as an individual. I said demand scans because I didn't know I had the option. When I looked back at my journal notes from my previous breast cancer battle, I saw that they were going to do scans, but nothing was scheduled, I changed onc in between cause mine opened up his own practice so maybe that was the missing picture.
Who knows, but the fact that my new onc is asking me how do I know if I really was all clear after chemo, surgery, and radiation when I had no scans done? I was in shock, I didn't know! Once stage 2 triple negative, now Stage 4 of unknown origin with mets to brain, bones, lung, appendix, left neck, left shoulder, pretty much everywhere! They're still working on pathology! How crazy is this! I thought I was in the all clear! Living a happy healthy life with my 2 young girls (10 & 7yrs old) and husband! Why? Why? Why wasn't I given scans, what happened to close monitoring for the first 5 yrs, I didn't make it to 1yr? Why why why!!!!!! This is so frustrating!!!!!
I'm sorry to the new folks if I am freaking you out, but I want to believe I'm a minority and this doesn't happen to most of us. It just seems unfair! I did everything they told me to do, ate right, exercised, got blood tests done like clockwork, all normal. How can they be normal when I am Stage 4 with mets. I guess blood tests aren't very accurate either!
I apologize, for my rantings and ravings, but where else can I do this. My family is devastated right now and I have to act strong in front of them so I'll let myself go here. My elderly parents have to see their only baby daughter go through this not once but twice! If one of my children got this disease, I don't think I could bare watching them struggle and just die! I feel like such a burden on my family! They are all so supportive, but at what cost?
I will beat this no matter what! But I really really hate FCA! Where's the damn cure already, enough people have suffered and been lost! Stop taking mothers!!!!!! What will our babies do without us?0 -
Oh naan...you can always come here to rant, rave, scream. anything. When you said to demand scans I knew exactly what you meant. We all need to take control of our own situation sometimes by making sure we get the care we need. We know when something just does not feel right in our bodies and must sometimes ask, beg, plead, or demand that we get a test that a doc sometimes does not do as part of their "normal" protocol. My MO does do pet scans regularly for the first 3 years as she believes in them and other docs do not waiting instead for the patient to have symptoms before ordering such a test. Some of us may never be in your situation and therefore could not possibly understand. Others of us can use our empathy to only imagine how you must feel right now. I wish they would hurry up and get a cure already. Too many people are too affected by this. YOU WILL BEAT IT! They are going to find the magic bullet soon. BIG HUGS TO YOU!
Maggie
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Hi Naan, I am new on here, I have been reading for weeks and following your journey. You ARE incredible, I didn't realise I was TN until after my year of treatment. Found lump summer last year then lumpectomy September. Chemo twelve sessions, then twenty five radiotherapy. All finished June.
For some reason the Triple Neg part was never mentioned, only that it wasn't hormonal and that was why they were giving me chemo. I live in England and don't know if that is the way they always treat it here.
It was a clue from another thread that made me ask and my Onco just said yes it is and that was that. I made the mistake of googling and went into a terrible depression.
This thread has helped a lot and I am sending out thoughts and prayers to you every day. The ladies on here are wonderful.
Hope all goes well with your future treatments. You are so right there SHOULD have been a cure years ago for ALL cancers.
Big ((( HUG ))) Edi.
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(((naan))) Hang on, honey. We get it.
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Edi - I also had my surgery Septemer 25, 2012 and I had a lumpectomy! Looks like you and I had our treatments around the same time. I know what you mean about the depression that occurs when reading about triple negative. I try not to think about it for that very reason.
Naan - thoughts and prayers are with you - I totally get what you are saying ...hugs!!!0 -
Oh naan, it does completely and utterly suck, you are so right - Where is the bloody cure!!!!! And leave us Mum's alone, and our children. We're so hard on ourselves, you may feel like a burdon - but if the shoe was on your husband's foot - what would you tell him??? That you'd be honoured to love and care for him no matter what!! Vent away, how you feel inside so so so many of us can relate to it and it helps immensley to know that we're not alone.
You are a strong brave beautiful woman and you will beat this!
xox
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Titan,
Great idea! I feel the same way about not being on topic….
Myself: age 49, diagnosed 7/23/13, bilateral mastectomy 8/7 w/sentinal node dissection both sides. Had lumpectomy on left breast 20 years ago – ended up being benign (no surprise as there is no breast cancer in my family – recent diagnosis shocked me, to say the least!). Pathology following BMX shows cancer has spread to lymph node on right side and verified original pathology of TNBC. Treatment – still waiting. Have Oncology appt on 9/16 but my surgeon told me he met with Oncology regarding my case and I can expect, at a minimum, 4 months chemo. Already preparing for chemo by cutting my hair short (just 3 days ago) and my husband, bless him, shaved his head yesterday to show Bald is Beautiful! I’ve no clue what type of chemo I will receive but worry about infection during as I work with the public and germs are all around! I suffer from psoriasis and Purell type products are murder on my hands – they get so dry they start to crack and bleed and always get infected – so it’s going to be a challenge!
Hope to see others join in. Never knew there was anything called TNBC so all the info I can get thru these discussion boards are a great help.
Lisa
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{{Naan}} Big hugs to you sweetie, my heart/soul is crying as I read your post. You and your family are in my prayers ~ you are not a burden, you are a loved one of many...especially your family. It is hard to believe you have mets! I read where you were 0 out of the nodes that were taken. I know so little about this cancer.
You've given me the courage to ask for a brain scan...I've been feeling dizzy somewhat here lately and once while driving I had a very quick but scary black out. Felt it somewhat coming so I had just pulled over into a turn lane...it passed and I called my husband to let him know so he could retrace my drive if I didn't make it home.
One thing I do know from these girls that write on here is that WE CAN DO HARD THINGS not only living but surviving. ❤
Cry or rant anytime you want, I'm probably doing the same in the shower!
Hugs, gwenie0 -
Oh Naan, I read your post and can totally feel your emotion. Brought tears to my eyes, what you are thinking and going through. I know you'll be here always for your babies!
Gwenie, I understand your Onc's wording about statistically the same percentage as she is. When I was genetically tested and went back in for the results, the Genetic Counselor told me I did not have the BRCA mutation, and the expanded test (the BART rearrangement test) came out normal, she said I was "back in the general population, with the same statistics as everyone else." It reminded me of when I had the MRI report on non-affected breast and it said "unremarkable". I've never been so happy to not be unique, i.e.: general population / unremarkable. I use those terms proudly now.
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Naan my medics don't offer scans as part of their 'normal protocol' either but if I was you or if I felt I needed one I would ask and then demand one if they were not keen on it regardless of what anyone else said. It is your body, your life, not theirs, and nobody has the right to tell you what to do in this situation. I agree with Mags do what you feel is right for you and again she is right "you will beat this". If you feel like a rant then come on here. Thats what we are here for.
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Ooo Gwenie its time for a check up if you are having dizziness and a black out. Go ask for a scan and if they say not needed DEMAND it.
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Cocker_Spaniel ~ since I am new to this forum it has been such an eye opener and is giving me courage to pursue my own health recovery better. My family and friends do not have TN BC and somewhat think it is over now that treatment is done. My faith and my optimism is my greatest gift to myself and to be encouraged to follow my intuition is good for me to hear. I've always been one to take care of everyone else, physically and emotionally. Since this is a private forum I somehow feel free to discuss me.
Thanks again for all the support from everybody. I am now reading some other topics and gathering info.
Hugs, gwenie0 -
I just read of Lori Redmer's passing. Link below. Former executive director of the Triple Nehative Breast Cancer Foundation.
Sorry, everyone. Thank you, Lori, for all you did for us.
I went to a 3/3/13 event in Fairfax, VA soon after surgery. It helped a lot.
http://forum.tnbcfoundation.org/lori-jasperse-redmer_topic11441.html?FID=1&PR=30 -
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I bought my own PET scan. I knew something was wrong with my liver. Everyone who thought I DIDN't need a scan, was very surprised by the findings. I now tell them, you might be an expert in cancer, but I am the expert when it comes to me.
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Karen how did you know there was something wrong with your liver? For some reason I keep getting little spots on my chest. The first one came up above my scar, then another below it, when they got a little top on them they faded, then three came up very near my scar and they eventually faded and now I have one on my righty. A bit baffling. my BS took a look and said don't forget your skin is different now you have had radiation but I didn't have radiation on righty. Any suggestions ladies?
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Thank u so much for always being there for me, u are truly my sisters! I only have 2 older brothers, so I feel very blessed to have all of you as my sisters!
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On a happier note! My 2 little girls now 10 and 7yrs old have been the most patient and loving kids a mother could dream of. Since I was dx in Oct 2011 til now I was not able to throw them a decent birthday party, but neither one of them complained once and just asked for play dates with friends once I felt up to it.
I threw them the biggest, most awesome belated/pre-birthday party money could buy yesterday at Chuck E Cheese! I gave them a hint, but they were still very surprised! Their real birthdays are in December, but they deserved this, so since I was having guests over for dinner, I asked a few to join us for a lunch party at Chuck E Cheese as well. They had such a great time, although I think my husband loved it more! They ended up getting so many tickets for prizes that all the other guest were able to pick the best prizes that were there! We were all so happy, but mostly the kids couldn't stop smiling! I loved that!
After Chuck E Cheese, we headed home to prepare a big Korean BBQ feast/pool party for initially a very small 3 family get together, but grew to 11 families, most with small children. Everybody had a great time, especially me, couldn't stop laughing the whole night, ate so much, gain like 10lbs in one sitting! My awesome high school friends came out, so good to see them, some I haven't seen since graduation. It was so much fun for everyone who came and for our family too! I bought so much food, we'll be having leftovers for weeks to come! I love get togethers!
I feel so energized and happy that I have so many people who pray for me, who think of me, and who believe in me being cured! I can do this, I will do this, I will beat this!0 -
Cocker, I have heard about liver spots - someone at the gym told me. She mentioned we all get liver spots, but she mentioned it in relation to the liver not working well - saying that we should cleanse or something. She was really into nutrition and holistic stuff. But just now on Mayo it says "age spots are sometimes called liver spots" and are only harmful when accompanied with certain symptoms. Here is the link. http://www.mayoclinic.com/health/age-spots/DS00912
On Wikipedia it says the name liver spots got its name because they were once incorrectly believed to be caused by the liver, but they are physiologically unrelated to the liver. http://en.wikipedia.org/wiki/Liver_spot
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Just saw a post from a new member on another thread named Hope. It got me thinking about about our Hope60 in NYC. She hasn't posted since Jan. I know she was having a rough time with her new chemo. Does anyone know anything?
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Hey Gang,
I been trying to post for a few days now but with all the sadness I just can't seem to make myself read all the post so I won't leave anyone out. I try to be here to offer support but find myself failing with that because of my own insecurities. Every time I get my fears put aside for a bit, I will come read and someone has passed away or got mets and it sets me back. I fell so sorry for the ones dealing with it and selfishly worry about myself when reading it. Reading of the people who have fought it for several years but still lost the battle makes me think WHY THE HELL BOTHER, WE CAN NOT WIN!!! Then there is part of me that says we are not statistics and doctors are not God and he will call us when our time is done regardless of what causes it but I think knowing what it might be is worse. I have until the 11th and then my radiation will be done. I started boost Friday. My underarm is burnt with blisters and nothing we have tried has worked on it. It started out as a yeast infection the first week of treatment. The doctor ask me if I was diabetic because that is usually who she sees in it, so I was told to ask my primary to run the AC1 or A1C some kind of test that test for the past three months. The results are in but I have to wait until tomorrow to get them because we were just 5 minutes late getting the message. Here is a big dilema that I have. I know I have to eat better and get exercise and I CAN NOT make myself do either. I am so upset with myself because good help is the only hope we have and I can not make myself give up the wrong foods, or get up off of my butt. I just don't know what to do anymore. Then I get on here and I read and I think does it really matter. How do you all get throught the sadness? I do think that the reason we lose our battle is the lack of scanning but we can't be scanned to much either.....and like they told me, we can scan today and nothing be there and then tomorrow it would have all showed up. IT SUCKS!!! There is no right or wrong answer. I just know it is all scary and there is still nothing you read good about TNBC. I have never had a brain scan and it worries me a bit too. My bloodwork was great and if it was not for my BS still following me, we would not have caught it before it spread.I am sorry to all the new members for having to be here.......
I am sorry to all the ones with mets........I am sorry I can not be here to support you all like I would like to be.
Forgot to add that I am going to lose possibly 3 fingernails.......:(
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Stupidboob, I had he same issue duing radiation with sore cracks in the pits and blistering. My radiation onc prescribed me a special burn antibiotic called, "SSD, 1% Silver Sulfadiazine Cream," it worked wonders. Ask your radiation onc, right away to prescribe it for you. It should help. I know exactly how u feel. I had to walk around with my right arm in the air cause it was so sore! Sorry that you have to suffer so badly, this is why you have to post questions. There are a lot of experienced cancer fighters here who can help, like myself. This is my second run, so any other questions or concerns, don't hesitate to ask here or u ca PM me too. I'll do my best to answer the ASAP. Just to warn you though, my memory is not as good as it used to be, so if there is something I can't answer right away, I'll ask around and find out for you, so don't worry, ask away. Like people say, there is no studpid questions!
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