Calling all TNs

Meadow

Mags, I just read about your lymphodema, so sorry to hear about that.  Can I ask when you first noticed symptoms? was it right after surgery, did it creep up on you?

Mo I am in Springfield too and would be happy to meet you some time. As far as reconstruction, I chose to have implants at my mastectomy, my plastic surgeon did have concerns about that as I had to have 33 radiation treatments and the skin definitely has changes that affect the shape. I just could not go the tram route, it just wasn't an option for me although the tummy tuck was VERY appealing! So far I think the radiated implant has held up good, I see my plastic surgeon soon he can tell me what he thinks and if some enhancements could make it better. So now you have two recon stories, and are probably as confused as possible! 

shorfi

Hi ladies...I heard the news this morning about Samantha Harris, past host on DWTS.  This news has sent me into a tizzy. Seems like when I get myself together mentally, I take 10 steps backwards and become all gloom and doom.  My MO did prescribe Zolodt for me, and initially it seemed to work. Now I'm in such a dark place after reading material on the internet about TNBC.  I am so tired of crying and being sad, and it seems no one understands how I feel. 

Please, any suggestions on how I can conquer this. As a side note, my MO said my prognosis was excellent. I had the MammaPrint test which said I have a 90 percent change of not recurring.  I just find everything so difficult to believe especially when I read info on the internet saying prognosis for TNBC is poor. It makes me physically sick to my stomach. 

Have any if you felt this way?  I apologize for sounding so negative, but I can't get myself together. I am off work for another week. Just had final exchange surgery on the 9th. And it doesn't help that this is my second time dealing with breast cancer. It was a new primary in the opposite breast.

JAN69

Shorfi - I think what you are doing (reading lots of things on the internet) can be oh so dangerous.  I did it too at first.  And then I realized that I was never going to find what I was looking for.  I wanted to see what my "chances" are of dying soon from TNBC.  Well that wasn't productive.  I was never going to be happy or reassured with what I read.  Die soon?  Live long?  I decided I needed to listen to my MO and believe that I have a good prognosis.  Hard, I know, and sometimes I get down with the side effects, mostly lymphedema issues.  When you go back to work you might be hit with all those sympathetic offerings.  Perhaps you could tell them all you really need is for them to tell you some really good jokes.  That just might perk up the atmosphere.  Good luck from someone who has been there.  Jan

slv58

Shorfi, be kind to yourself, you have been through a lot. Don't expect to process everything on a schedule, but if you feel that you are abnormally depressed, can you ask for a referral to talk to someone? I think we all go through the fear and sadness, none of us expected to be here. I know I dipped my foot in the pool of darkness but was able to turn that around. My aunt who had gone through breast cancer years ago told me to start a grateful journal and every day look for something to write in it. Some days it was very difficult for me and only a couple words were written. Some days I could only post a picture, but you know what...after some  time I actually looked forward to starting my day and finding something to put in my journal. Doing this for my difficult year has turned sadness/fear into a true joy. Now every day I try to say or do something nice for someone. I don't know if this helps you but it's worth a try!

And stop reading things on the internet! Come here for comfort and support!

simplelife4real

I haven't posted here in a while.  I'm a third of the way through rads and fatigue has set in much quicker than I expected.

Inspired, in my book, you are a very positive and supportive person.  I appreciate all your comments.  I like the idea of putting broccoli in your juice/smoothie.  I was adding broccoli to mine for a a while and then somehow it dropped off my radar screen.  Thanks for the reminder.

Fiercebluebird....wishing you the best.

Hugs to all,

Kay

belleeast

Cocker Spaniel,I miss the way the thread was in the "old" days,less stats,more personal,I guess!

Even tho,I haven't posted much! I read  it everyday! I want you to know your humorous posts got me thru some dark days,I really miss them!! Thank you so much for being you:)))

JAN69

Cocker Annie Ditto what belleeast just wrote.  Jan

Cocker_Spaniel

Meadow I did not say Inspired was not positive I said her posts on recurrence were not positive.  You are correct in saying that the last few posts have been in answer to questions however, previous to that it was post after post, day after day on recurrence.  And yes, those posts may me feel down because they were so frequent.    Of course recurrence goes through our minds,  often,  and probably always will but I for one do not need to see this on a daily basis.  The newbies are trying to fight with their diagnosis, treatment and coming to terms with dealing with this cancer beast and don't need the added worry of recurrence and the ladies who have gone on to find their new normal need to be encouraged to continue that way.  It is totally unnecessary and unfair when you are trying to cope with treatment or trying to stay happy and positive.    

Meadow

Cocker, I think we agree on more points than we disagree, I want to be happy and positive, laugh and even cry together, and be known by others going through this. I also have a lot to learn, and this is where I come to learn, from the sisters who are so knowledgeable. I was not on the forum before last month, and I do not know how it was a few years ago, but I have every confidence it was as wonderful as it is today. It is hard to read a persons' tone in the printed text we communicate with, and so perhaps your post to Dolce was not intended to be as harsh as it sounded to me. I find I am very tender with my feelings even more than ever these days, and we all have enough on our plates without having to defend ourselves. I find that  brings me down, I just cannot deal with strife as all my energy has been fighting the beast. So can we please move past this episode, and be friends and friendly toward each other, while still educating? I need both.

megomendy

NavyMom, thanks for writing your post and coming on to give us newbies support. I cant wait until more time has passed and I can have some perspective on this like you and many others do.

Cocker_Spaniel

Meadow I agree with you.  I hold no malice towards Inspired at all and if someone said to me today they think they are going through a recurrence I would advise them to talk to her because she is a mind of information on the subject but I just cannot take so many posts on recurrence on a daily basis, some yes, but not all that amount.  I sincerely hope you will be happy, positive and laugh as much as you can. That is what I try to do each day. I'm not saying those horrible feelings don't creep in because they do but its pushing them to the back of your mind that is the trick and the more you do it the better you become at it. All our feelings are tender after a diagnosis of breast cancer and we need positivity, laughter and total encouragement on here which is what I always had previously.  Yep time to move on,  good thinking.    

tekwriter

Cocker and Dolce I value the input of both of you.  Being new to the arena I value the stats and the positive.  I got my philosophy for living with this beast here and I treasure you both.  You both  have much to give.

Meadow

Cocker my heart just felt brighter thank you

Coopdizzle

Daughter- I find myself second guessing everything. It's normal. This is a huge deal and there are so many options that it's hard to choose what to do. You could do everything right and it still come back. You just never know. For me I stick with what I know works. So far my chemo is working. My tumor is shrinking and breaking apart. My heart goes out to you and your family. HUGS!

Just finished round 3 of Taxol. I am more sleepy with this one. So far no numbness. My hair on my head still hasn't fallin out. BUT my armpit hair and some hair down there has! Looking forward to not shaving! Taking it one day at a time. My doc measured me on my first week and it measured 6x6. Last week it was 5x4!! The carbo. is working!! I left there feeling so helpful. I also got a package from a friend in Australia and turns out SHE had triple negative! She's been clean since 06. I couldn't believe it! Gives me so much hope!!

Hang tight Ladies! We can do it!!

InspiredbyDolce

Last year, I wrote a post, that was publicly attacked on this forum. Those few who responded with criticism of my post, said that we should be allowed to write whatever we want. Ironically, my post at that time was about trying to write more positive posts.  I believe that you, Cocker were one of the members stating we should be allowed to write what we want.  

I would like to say, in the interest of trying to answer questions asked of me, I have to use the word recurrence, when the word is warranted.  As a professional researcher, I can tell you it is unnatural to swap out the word recurrence in favor of another word, when the article is about recurrence risks.  And recurrence risk does not have to mean something negative, it can be a positive message, especially when that risk is lower due to an item mentioned in the article.

In the interest of trying to understand and learn, I have gone through each and every post, and reflected back on what it was about, and why it was written.  In doing so, I have come to the conclusion that this attitude Cocker, that you have towards me must be more of a personality clash between the two of us, because I have not been able to find a doom and gloom post, at all, by me.  Every single one has been written with the focus on the positive side of the stats. In fact, it would be highly unnatural of me to not post something that provides a positive message in the setting in which it was asked. Example: If someone is fearful about chemo and asks "should I do chemo" and I reply back with "chemo can reduce recurrence risk 30%" that is in fact, a positive post. As a professional researcher, I am going to write in a technical way.

Here is a recap of my posts:

Apr 14 - Response to ongoing conversation about MX vs LX:  Response included the word recurrence to provide data on local recurrence stats, which is a valid part of deciding on a MX vs LX

Apr 13 - Response to question asked of me again about chemo and risk %:  Response very positive, chemo reduces risk

Apr 12 - Response to question about pCR:  My response was that even without a pCR survival is achievable

Apr 11 - Post on aspirin - valuable info that was from the Fitness Forum

Apr 11 - Response to question asked of me about chemo:  Response very positive

Apr 9 - General miscellaneous post

Apr 7 - Post on cancer anniversary dates - Very positive post - posted this info because often people ask on here what date to go by.  I further referenced the exact trial where this info came from, and how it said we could use the dx date. This was extremely positive, means some people can choose to change from when they start counting and they can reach the goal of 5 years perhaps sooner than if they were counting from a different point, and since we all know the importance of the 5 year milestone, this was extremely important post

Apr 6 - Post on excerpt from article - Article was a Q&A on TNBC - this was extremely positive because it mentioned that many women at first are worried of their TNBC dx, but really it has a high survival rate. The Q&A was done to help medical professional alleviate the fear in newly diagnosed women, so the article had excellent positive qualities

I would like to also mention that I appreciate everyone who has written me, called me, posted about me and supported me.  

I do totally agree with Meadow's last post.  I will also no longer be partaking in any confrontations about any of my posts in the past, present or future.  I will continue to post relevant, helpful data, and I will continue to post from a place of caring and nurturing, as I always have done in the past.  

NavyMom

slv58:  We are of the same thinking....Being grateful.  Even though I do not keep a written gratefulness journal, I have made it a daily habit of reminding myself that there are so many reasons to be grateful.  And I have been much better about telling people that I am thankful that they are in my life.  And sometimes it can be much simpler...like being thankful for rain or sunshine. Or seeing the scale read 2 lbs less this morning!

So tonight, I am feeling grateful for being able to be here and to enjoy a nice spring day.

DorMac

It's been over 2 years since my surgery and I don't think about recurrence. I know it's a possibility but until I have a reason to suspect that it is happening, I choose to believe that I am NED. I would like to advise the "newbies" to try to think positively - to believe that the surgery removed everything and the chemo and rads was just to ensure that nothing escaped! I know that there is so much you want to know and Inspired is truly a font of information but at times it is good to step away from the cold, hard facts and do a little "dancing". I think that is what Cocker was trying to say. While we need to answer your questions and share our experiences and knowledge with you to help you deal with your diagnosis, treatments, side effects and emotions, we also need to occasionally bring a bit of light and humour to you. Lately we have been missing this aspect. So, I would like to challenge each of you to either post a joke, share a funny story or, at the very least, tell us about something positive in your life. I hope no-one takes offence at anything any of us say on this site - we are all "sisters" who have been or are going through a life altering experience and we all need to be patient and understanding. So now I challenge you to add something positive here, ok? Here's my small contribution:

Let's face it - English is a crazy language. There is no egg in eggplant, nor ham in hamburger; neither apple nor pine in pineapple. English muffins weren't invented in England or French fries in France . Sweetmeats are candies while sweetbreads, which aren't sweet, are meat. We take English for granted. But if we explore its paradoxes, we find that quicksand can work slowly, boxing rings are square and a guinea pig is neither from Guinea nor is it a pig.

And why is it that writers write but fingers don't fing, grocers don't groce and hammers don't ham? If the plural of tooth is teeth, why isn't the plural of booth, beeth? One goose, 2 geese. So one moose, 2 meese? One index, 2 indices? Doesn't it seem crazy that you can make amends but not one amend? If you have a bunch of odds and ends and get rid of all but one of them, what do you call it?

Doreen

Spica16

Just a quick question, Dolce...what do you mean by "professional researcher"?  In what area do you have expertise to do research? Do you have medical or healthcare training? Might give us an understanding of where you're coming from.

Nite all ~ Shar

lilyrose53

Dear DorMac, 

You are a hoot!  It is a pleasure meeting you!  I can't think of anything funny to add, as it's late at night here, and I am pooped.  But I certainly hope we can all continue to support each other.

Hugs,  lilyrose53

shorfi

Jan and Slv...thank you very much for your kind words. Your suggestion about the journal is a great idea. And Jan thank you for sharing your feelings with me. I can so relate to how you felt. 

Inspired...you are the absolute best and I appreciate you so much. You are so positive and I appreciate all the info that you give. While I am not a medical researcher like yourself, I am an assistant to physicians and grants administrator who do research on breast cancer and other modalities.  Your knowledge is much appreciated by myself. Hope to keep in touch.

I am signing off the board for a while. I wish you ladies all the best health and that you keep dancing with NED for years to come! 

tekwriter

dolce thank you for ending this awkward moment so graciously

simplelife4real

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

Meadow

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.

LPBoston

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

simplelife4real

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

Allydp

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. 

Kruise

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!!

tnbcRuth

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 !!

Teka

FierceBluebird having surgery again today, private posted the following------------------------

Please tell everyone happy Easter for me!

TifJ

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.