Calling all TNs
Comments
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I'm a newbie....still in treatment and I have really appreciated ALL of Inspired's posts over the past six months. I have never considered them to be negative....quiet the contrary.
Inspired, I hope you stay with us. You are much appreciated by many of us newbies.
Today is radiation zap #14 (of 33) for me....but who's counting! I'm finding that I really like knowing I get two days off over the weekends. I feel like it gives me a little time to recover.
Wishing everyone a peaceful day.
Hugs,
Kay
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Simple, I just finished rads a week and a half ago, and I also got to where the weekends saved me. I am a ginger by birth, complete with freckles. My skin just did not tolerate rads in the long haul. My radiologist prescribed Silvadene like they use in the burn unit, and It was a lifesaver. My Spouse says they push you right up to the edge where you cannot take it any more, then stop! So hang in there you and all in rads now, hang in there.
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MOLawMom - I had the double mastectomy with Tram Flap reconstruction done at the same time in April 2013. I didn't feel having implants was the route I wanted to take. Maybe I should have because a year later I am still having a lot of discomfort with the tram flap reconstruction. I think it is always going to be this way. Some days are better than others. I have a lot of pressure and tightness and as far as the tummy tuck yes that's great but the fat has to go somewhere so if I gain a few pounds it is noticeable on my sides and into the back of my waist because my entire stomach is mesh so it's hard for the fat to go there naturally. At least that is how I feel. As far as the look well I have a scar from one side to the other in the abdomen, my belly button is now an outy made of skin, my breasts have scars all the way around them and my nipples were made from skin graphs from my thighs and are little and very soft. I feel like Frankenstein's daughter but I am alive and am so impressed in what surgeons do. Not having breast was not an alternative for me because I am in my fifties, still feel young and didn't want to give in to this horrible disease. My body looks fine from the outside so no one would ever know what was going on in the inside. I am very greatful I am alive and don't complain about the discomfort - I just deal with it and go on with my life. It is a personal choice only you can make and weigh all your options. Good luck.
LPBoston
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Meadow, I have often wondered if the way they came up with the number of treatments for rads had a lot to do with how much was the maximum that the average woman's skin could handle. I also think it's odd that my RO doesn't schedule his first post-treatment follow up until 6 weeks later. From everything I've read, it seems to be the week after rads finish that most people have the hardest time. Not everyone has a tough time, so I'll just have to see how it goes. I'm of Irish descent with very fair skin that was already sun-damaged in childhood so I'm nervous about last few weeks. I just try to remind myself that I'll cross that bridge when I come to it....and it's not there yet. I do think being aware of the potential problems immediately post rads is good mainly because it made me decide to wait until two weeks after rads to do any traveling. Hubby wanted to take a long trip the next day. At first, I was going to agree to it, but I realized that really wasn't in my best interest.
One gift of cancer for me has been to think twice before I make a commitment to something I don't feel comfortable about. I've learned to listen to my heart better and go with my gut. It's far less stressful.
Hope everyone is having a good day.
Hugs,
Kay
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I had my appointment with an RO this morning and am very surprised at the outcome. I walked in armed with all my studies - ready to fight for radiation since I'm node negative and guidelines suggest I don't need it - but he had already reviewed my case and immediately recommended I radiate the chest wall after surgery (no lymph nodes). He said the size of my tumor (>2 cm), being pre-menopausal, and the fact that my lymphovascular invasion was indeterminate, all warranted radiation. Having just one of those factors, he would've said the risks outweigh the rewards, but having all three was a different story. He doesn't think my lymph nodes are involved and didn't want to risk radiating them for fear of lymphedema. I'm a little unsure about that, but will trust him. Had I not pushed my BS on this issue I would've miss out on this treatment, so I'm feeling pretty darn good about being my own advocate today…if I do say so.
I'm concerned about how this will impact reconstruction, but will deal with it as it comes. Treatment is more important to me. Hope everyone is having a good day.
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great news Ally.....(well you know what I mean) - funny saying great news to someone about to have more bc treatment!!
Reading about the broccoli in your smoothies has definitely motivated me to start making some....pity we can't all have turns making a big batch up and sharing it out between us..lol. Smoothie parties!!
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HI there!
Just popped in to ask a question on the gummie board, so came over to check on TNBCs...Ally, I would look at the recurrence data for your stage when considering radiation. I would also honestly review the downside of radiation on your tissue before you make your final decision. You say you will deal with it....easy to say...can be very hard to do...and impossible to undo. As you can tell, I advocate very conservative measures. The doctors talked up all the bc treatments, and in the 4 yrs since then I've met many women who got the same pitch. In this highly emotional state, you are apt to go for it all. Read up and make your own decisions (as it appears you have)
Best of luck !!0 -
As a member here for well over 3 years, I have seen so many disagreements (not just this thread) from simple misinterpretations of one's words to all out verbal war. The result is so many wonderful ladies leave the boards. That means we lose valuable information and support. I hope as a group we can get past this latest "issue" and continue on as we have in the past. I don't always agree with every post nor do I read a post if I feel it is something I don't care to hear. I have up days and down days and that affects what I do or don't read. I can only speak for myself, but I would be heartbroken to lose anyone on this thread over a disagreement on what we think should or should not be posted. We are human and cannot be expected to agree all the time. Just my opinion.
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Kruise I would come to your smoothie party!
Ally your avatar picture is adorable!
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Can I put my 2 cents about the research/study issue? Maybe we can start a thread with just research studies on it...it would be easier for us to navigate one thread instead of searching around this thread....our researchers have posted great information...but sometimes I just want to be on here and see what everyone is up too...sometimes I want to read the research....it would be great if it were separated...it would give us a powerful tool to use...all in one place....what do you guys think?
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Oh, I like that idea Titan!
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Titan ~ we can get articles posted to our profile page based on our interests (such as "TNBC", "clinical trials", etc), which are selected according to the information we post in our personal diagnosis and treatment areas. These are from BCO - more up-to-date and reliable, since this website uses breast cancer experts to input and filter reports from all the various studies. I believe it is the same articles we see highlighted in the "Breaking News" box on the left side of the discussion page.
Since none of us are medical doctors, much less oncologists, we really aren't qualified to interpret research studies. In the medical and healthcare fields there is the concept of "scope of practice", meaning you work within the range of your training/knowledge. To go beyond that "scope" is irresponsible and unethical. Of course anyone here who posts this type of info is only doing it with the hope of helping others...after going through the hell of cancer treatment, how could we not be compassionate? But...we really need to leave the medical/technical info to the experts.
The beauty of these discussion groups is in the sharing of our experiences. The doctor can tell you that AC will make your hair fall out, and that Taxol might make your feet numb, but WE can tell each other how we coped with that bald head..."wig, scarf or BOLD?...or those wonky feet..."why are my toes on fire?"...or that greatest mystery of all..."where did my eyelashes go? they came back two weeks ago, and now their gone again"???!!! It's reassuring and comforting to talk to someone who has already been through it. As is often said on these forums...someone who "gets it".
Plus, doctor-speak. Not always easy to translate, and many times misunderstood. Just a while back here, someone thought the doc or nurse told her to "get your affairs in order", but later found out they meant to "get through treatment and then get on with your life" Whew - that had to cause some major hyperventilation. Doctor-speak. I worked with pathologists everyday. They really like the word "unremarkable" when describing surgical specimens during gross examination and dictation. ("Unremarkable" means normal, not diseased or abnormal.) Now wouldn't it make more sense to just say "looks healthy and normal"? Um, No...not in pathologist-speak. Our young pathologist was doing a gross exam of a surgical specimen from a woman, and dictated that it was "unremarkable". I told him that no woman wanted to hear that she was "unremarkable". He came back with "she sure wants to hear that from this department!" Yeah - he had that right! Oh the fun we had in the pathology lab, affectionately known as the "Parts Dept".
~ Shar (hey, blame it on the formaldehyde!
)P.S. Titan ~ Thank You for starting this thread - it helped me to get through those toughest years. I reached 2 years out from final treatment on April 6th. Now I'm heading for the 3 yrs since dx goal, in August. I plan on getting there as "unremarkably" as I can!
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Sorry ladies but I am not prepared to let this go after reading Inspires last post to me about being hostile to her.
Inspired perhaps the ladies on here would like to track back to the posts dated 28th October 2013 which is when you accused me of being hostile to you. If there is anything hostile in my post then I am a frigging monkey's uncle. So I believe you should retract your statement of me being hostile to you and apologise.
Plus why have you deleted all the posts of yours where people didn't agree with you???
Secondly I have been a medical, surgical and radiological typist for over 40 years and I could tell these ladies on here a great many things concerning their treatment and on the subject of recurrence, but you know what, I wouldn't dare, because I have no right to. I am not their doctor, their surgeon or their oncologist and I have no right to increase their anxiety with outdated data and incorrect recurrence details. NEITHER do you. You say you are a professional researcher but I believe you have only just got that title, am I correct????. However, you are not a researcher in the medical field. Be careful on that one Inspired.
You also point out in your previous posts that none of the doctors can deal with you or handle you and that only your oncologist can because of your insistent nature, well let me assure you I am not afraid to tackle you especially when you post pages and pages of incorrect data to mostly newbies on here. Yes I did say we should be able to say (SAY) what we feel on here and that didn't include posting those stats, percentages and recurrence. The doctors, surgeons and oncologists should be providing that information to patients nobody else.
Titan, just like Spica, I have always received all the help in the world from you ladies on here, without you all I would have had a far harder cancer journey to get through. You have all been there for me through thick and thin and always with the right and correct advice, albeit most of it with laughter. If you feel I should leave this thread then I will gladly do so but I won't be edged out by Inspired.
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Spica, I just wanted to say congratulations on being two years out from your last treatment! I love seeing people hit milestones and posting about them.
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IMHO feuds would be better dealt with in private messages. If you disagree with an opinion, why not just say "I disagree because.." and then explain your position in a logical manner. Or maybe just ignore it and move on to the next message. We're all coping with TNBC in our own way. As far as I know, none of us is a board certified oncologist.
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Just popping in here to say that we think we're all feeling frustrated after
reading this back and forth ladies. Please, it's time to move forward, be open and
supportive.Also, just a reminder that if you do not agree with a certain post or poster, and/or her/his opinions and comments here, feel free to use our Block Member feature, or simply choose to
not read her/his post.Thank you each for your cooperation.
The Mods
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Moderators,
I didn't even realize there was a BlockMember feature - what if the particular user shows "cannot block user"?
Doreen
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out of hospital, feeling better. Spring is in the air. I don't have much to add other than good luck and positive thoughts to those in chemo and rads.
Healing thoughts to those with hard feelings. No need to justify position, let's all move forward as mods suggested. Thank you mods for all you do.
It's a great forum for information and friendships. Wouldn't want to see it any other way. Hoppy Easter!
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Chirp chirp FierceBluebird! So glad to see you are back home! What's next for you in the process?
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Life's too short and too precious to waste time or energy on all this drama. Glad to see you're out of the hospital bluebird! We're finally getting some spring weather here in the Midwest - hope everyone gets a chance to get out and enjoy it! Hoping everyone a very Happy Easter!
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Hello DorMac (Doreen)
I am just popping in to
say hello from the UK and to say how much I enjoyed your post about
the absurdities of the English language. It is so nice to have a post
that can make us all laugh. How about the differences between English
English, American English and even Canadian English? How about the
different pronunciations of rough, cough, dough, plough, bough, bow,
row, sow? My husband and I spent 17 years in Canada, 9 of which were
in Ottawa, in Lynwood Village in Nepean. We really loved Canada,
especially Ottawa. It must have changed a lot since we left in 1993.
We remember Beaver tails in the Byward Market.Sending you fond
greetings.Sylvia xxxx
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ally: regarding the query related to radiation..even i had the same question.
i asked my radiation oncologist that why did i need radiation after completion of 8 dose dense chemos. The cancer cells which would have survived so many chemos will they die with rads or are they still near the tumor area or breast?!! She gave me a new information. She mentioned that when surgery is done, chemo therapy drugs don't reach the area of surgery too well. They travel all around the body but less around that area. Hence radiation is required there as a local treatment.
just wanted to share this new piece of information with all of u.
Jianchi and Simple...hope rads are going on smoothly. I have just 3 more to go. Fatigue was high initially and with time it came down or maybe i learnt how to live with it...
I guess once we have dealt with a diagnosis like TNBC and Chemo, a lot many other things seem like a breeze.
wishing everybody good health...i hope we keep chatting and i wish each one of us ..ripe old age!!
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Annie - don't you dare even think of leaving this thread. And, Titan - wonderful idea for research going into another thread. I've been on this thread from my diagnose 5 years ago and was one of the first to sign on to this thread when Titan began it. It's been a very large part of my world and has gotten me through so very much when I have had you all to share the good, the bad and the ugly with. And ugly we have sure seen with the loss, so quickly of so many of our very dearest sisters that we seemed to lose in groups a few years back and which put us all flat on our backs. If someone wants to research, and someone wants to interpret it - go for it - I personally get my research from my doctors, who I am sure are very capable of reading it and explaining it very well. The separate thread could be called TN Research or something of the ilk so that any research put on there would apply only to us and we wouldn't have to wade through an ocean of other info not even pertaining to our cancer.
Wishing every single sister on this thread a wonderful weekend (Happy Easter if you celebrate such) and my wishes are wrapped in love.
Linda
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bluebird, glad you are out of the hospital and hoping you are feeling better. Wishing we could all get along with each other, I have always come here for the support and understanding that only we can share. We are sisters and sometimes there will be disagreements, but please let us support each other through this journey. Sometimes I start to read something and if it's not something I want to hear-I move on to the next post. Simple. I am grateful for all the encouraging posts and sympathize with the others.
Thank you everyone for helping me get through this with the warmth and knowledge that everyone shares.
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FierceBlueBird....so happy to hear that you are back out of the hospital. I hope your procedure was suceessful.
BanR...thanks for the encouraging words about rads. I've started coming home and lying down for a couple hours after rads and that seems to have helped significantly both with the fatigue and the irritation to the damaged nerves from my ALND. I'm done with week 3 now and this week actually seemed better than week 2.
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Bluebird, sending loving warm thoughts your way
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LRM your post brought me to tears. I have had so many lovely supportive PM's this morning and I appreciate all the love you girls give me on here. I don't harbour grudges and hope we can move on and hopefully bring some laughter back into the threads mixed with love, compassion and support to help us all cope. In my book you are one of the most courageous ladies I have ever met and although I hope I never have to go through what you yourself did I don't think I could do it with so much courage, love, warmth and total unselfishness as you did. Love you heaps. xxx
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Love you right back, Annie.
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Good news Bluebird!
Annie...this wouldn't be "our" thread without you girl! You have made me laugh so much....and that's what we need on here...laughter....we already have enough to deal with....laughter helps us all.
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Bluebird glad to hear you are out of hospital and feeling better. There is no better time than spring to put a smile on our face and a "spring" in our steps.
Cat just wondering out you are getting on. Hope your treatment is not to hard on you. Still deep in your pocket and hoping you are feeling better.
A Happy Easter to you all who celebrate it. There's nothing like chocolate to make you smile, so enjoy plenty of it.
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