Calling all TNs

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  • swiftbird
    swiftbird Member Posts: 177
    edited December 2010

    pinkpeeCA, I think we're going to find  a lot of 'old timers' on here because we just don't know as much about TN as we do with the others.  I'm done, have been done with chemo since June, and I check this thread every day.  In addition to forming relationships, I just worry about what I don't know and things are moving in TN so fast, I check back often, and will continue to do so.... and hope to be an reaaallllly oooold timer soon!

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  • riley702
    riley702 Member Posts: 1,600
    edited December 2010

    Ditto, swiftbird. If there is new info (good or bad), I want to know. And I love you guys, too!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Aw shucks... group {{{hug}}} time. Now, back to bed (just had to watch Princess Bride--- it's a real pickmeupper)

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Thanks, Sugar.  I hope it goes well too.  I am feeling pretty good, but I just hate all the blood work, tumor markers, etc. - so far everythings always been great, but you still go in there apprehensive and hope they don't find anything in the blood work that blindsides you.  I will be two years this coming February and hope I can tip-toe thru the next year without cancer seeing me!  I hate this disease - hate it, hate it, and hate even more how fearful of every thing it has made all of us.  

    And if it makes you feel any better - I'm in Atlanta, GA - and it was a bone chilling 20 degrees today and supposed to be single digit tomorrow.  Oh, how glad I am that I moved to the south never to see the NY cold winters again.  Lol!

    Be well,

    Linda

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    JenC:  Glad the pain went away!

    Melissa: I was not high risk and opted to keep my non affected breast.  I would have lost my entire breast and didn't have a lumpectomy as an option, but I was relieved to not have to have radiation as it can make it more difficult for reconstruction.  As stated above, it's a very personal decision.

    cc4npg:  So sorry you are going through it.  Hugs and hoping things go better for you.

    Gillyone:  Yay for you!  Love your new avatar!

    Heidi:  Glad you are done and your scans were clean.  Sleep well-you earned it!  Pepperment tea for me.

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Linda:  Good luck with your 3 month check up and I hope yours is as uneventful as mine.  Though chewing on your knuckles won't help much LOL!

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Linda:  BTW:  80 in Los Angeles today.

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  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    Heidi:  Love, love, love the Princess Bride.

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  • riley702
    riley702 Member Posts: 1,600
    edited December 2010

    That's inconceivable!

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  • MBJ
    MBJ Member Posts: 4,352
    edited August 2013

    LOL!  As you wish!

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  • riley702
    riley702 Member Posts: 1,600
    edited December 2010

    swordfight

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  • kelben
    kelben Member Posts: 269
    edited December 2010

    Good morning from Ontario, Canada.... very cold and snowy up here today.  MBJ would love to be sipping peppermint tea with you today, on the back patio, with my shorts on catching a few rays.

    When I first heard I was triple neg. I thought that was good????   I thought 3 negatives that means I don't have hormones or protein overloading my cells.   It wasn't until I came here and "got educated" did I understand what TN really was.  Thanks for all your info. it has allowed me to ask more questions of my onc. and BS to make sure I'm doing everything I need to do to stay healthy.  You're the best.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Good morning ladies,

    I am still in the process of uploading video and adding a few stills (since low light video is grainy at times).

    A few thoughts:

    Yesterday, my onc (and later the radiologist) strongly suggested sticking with just one imaging provider. Their reasoning is that different machines and other eyes can produce different results. I was kind of thinking that that was a good thing, since more eyes on the problem might result in earlier detection.

    However, they felt it could result in MORE testing and false positives. I already know how stressful all this "be careful what you wish for" testing can be. Up until now I was seeing my BS at MSK (now annually) and getting my in-between digital mammogram locally (at a new and terrific imaging center where the radiologist gives me the results immediately following the procedure).

    I love my BS but really wonder how necessary it is to see him now, since he doesn't even go over the mammo with me-- in fact, I don't even remember who did! I think someone in the office told me "it looked fine". Keep in mind that this visit requires a four hour ride to NYC and the stress that goes along with it. I do have great friends I stay with though, and always enjoy that visit afterwards.

    I'm thinking about eliminating this doctor and going with yesterday's recommendations of staying with one imaging provider. My gut feeling that it is really the medical oncologist who holds the responsibility of over-seeing my care at this point anyway. Plus I have an excellent GP who will go along with anything I ask to get done (and code it accordingly for insurance purposes).

    MSK's policy is annual mammo (even considering the BC) but my GP and med onc prefer the six month for awhile longer. At this point, I feel I am ready to cut loose some of these doctors and feel it would not be reasonable to do so. I'm weary of being naked from the waist up for medical procedures! White coat disease is a definite factor here--- I am so sick of this almost monthly BC intrusion into my life (not to mention the *daily* intrusion into my thoughts).

    So, I'm 16 months out, have had my share of scares (all apparently under control) and no longer feel I want to keep looking for trouble (beyond the routine 3 month exams with onc & mammos). I'm even thinking of forgoing tumor markers (more "coats" more needle pricks), as my onc only does them because I'd asked and they are always way low (7-9 = zip, basically).

    I weary of this disease and the emotional toll it continues to take on me, especially when faced with the never ending tests I seem to have had in the past 8 months. I'm ready for a change of plan, but it is still one that falls within a reasonable standard of care. Thoughts?

    You know mine: F*ck cancer!

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    So, a question for all you "old timers". I have one more treatment, then I'm done. What happens next? Are we TNs just pushed out the door and told "hope we don't see you again"? Are there scans or anything or just 3  or 6 months mammo on good breast? I feel really weird. I know this has been probably been discussed on this thread before, but would appreciate your personal stories. My insurance denied my PET scan right from the start and my onc told me I would not get one unless there was reason to believe there was a problem-how scary is that!

    Tiffany

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013
    Tiffany- read my post above. There are pros and cons to "routine" 3 month follow-ups and more pro-active ones. You have to find your comfort level, and be prepared for it to change, as mine did.
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  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    TifJ,

    You should read former posts when BC patients memories and feelings were fresh in their minds.   Also, hindsight is 20 20.Smile

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    Heidi-thank you. Somehow i missed the entire last page of posts before i posted my questions. I think I need to pay more attention!!! I'll just chalk it up to chemo brain!!

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited December 2010

    Tiffany

    That is my fear too! I two more treatments to go and I am scared out of my mind after treatment ends. Oh well, I'll just keep pressing forward.

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  • Titan
    Titan Member Posts: 2,956
    edited August 2013

    Oh Tifj and Fighter..it IS scary to walk out of your treatment center after that last treatment... You know you should be excited because your are done but scared because ..well..no more infusions..and you wonder how long this treatment will last and will it work?  We have all been through this..

    But....don't think they are going to let you off the hook.you will be seeing your onc every 3 months for at least 3 years. your BS every 6 months for at least 2 or 3 years..plus throw a few mammograms in there..plus alot of breast exams...

    At first I was very nervous going to these first few appts...now I'm not really nervous at all.

    Still get a little nervous about the mammogram though.... 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    OK, here is the external link that I have created to my on-line photo site. A few heads up:

    * There is a LOT of stuff in here (almost 45 minutes if you do the slide show). If you don't have high speed Internet you will probably not be able to view it.

    * I have included photos and videos. Each video is preceded by several photos of the houses in it. I did this because the low light required to feel the ambiance of the houses also creates graininess in the video. This is a hand held tiny Flip video so I apologize in advance for its quality. It does great outdoors in natural lighting but, under these conditions, there's no room for exposure compensation. Plus, it is being filmed by a near-sighted old nag whose (if you listen closely) knees can be heard creaking on occasion as she muddles her way around the village in a vain attempt at preventing you from becoming seasick while watching.

    * Depending on how much time you have (or how bored you want to get), you have the option of either doing the slide show (45 minutes) or just clicking on the group of houses that interests you (a minute here, a minute there, etc.).

    Oh yeah, I spelled "Edition" wrong ...

    One more thing- no need to clog this thread with responses. If you enjoy it just PM me a smiley face or something. (I prefer Laughing to Yell)

    http://albums.phanfare.com/isolated/KfBE9k7F/1/4939153

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    Titan- thank you. I guess the fear of the future is beginning to take over the joy of finishing treatment. I don't want to be afraid all the time. I suppose my best option is live life to the fullest and not give myself too much time to dwell on the negative. Having 2 young children, I guess that won't be too hard!! Also, knowing all of you wonderful ladies are here for support during those negative times is comforting! I feel better already!

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  • tnbcRuth
    tnbcRuth Member Posts: 454
    edited December 2010
    ok, a change in attitude is called for here!!!!  Please let's celebrate the ending of nasty chemo, terminating hurtful rads and finishing surgery(ies) on our precious ta-tas!!  After nine months of hell, I've had my last visit to my onc, had my last post-op with ps today and I can't distance myself fast enough from this mess.  In my mind, ITS OVER.  I was not fighting cancer in February of last year, and at this time, I'm not fighting it any more.  ITS OVER.  If something comes up that causes alarm, I'll check into it as well as having the 3 month blood tests for any indications of abnormalities.  But I'm not putting one more ounce of energy into worry or what-ifs.  I hope this doesn't sound too harsh, but I want to lovingly bump you on to letting go of this new habit of worry, anxiety and fear.  Yes it was the most terrifying event of my 57 years, but I keep telling myself, its over, its over, its over~  I have my bad days, but like Heidi, I say F*** cancer and as of today, I am adopting a new mindset of joy and thankfulness and will now be looking around the corner with optomism and hope.   
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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    Ruth - Well said! May I borrow your attitude???!!!

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  • char123
    char123 Member Posts: 82
    edited December 2010

    CC4NPG:  I just read your post around Dec 10, when you ended up in the hospital.  i am shocked that when you called the Onc office, no one immediately called you back.  i did Chemo last February-May, Had similar experience, fever after 5 days chemo, called my Dr office and they immediately told me to calmly pack a bag and get to the nearest hospital emergency room and tell them my Dr office suspects Neutropenia. ( I lived one hour from my Dr office and hospital) I did this and the hospital emergency room acted very, very fast and also put me in a secluded room so I would not be around people.  both places took this very seriously. Mine was 4.. Sorry to hear you had a bad time of it... 

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited August 2013

    Hello Ladies.  I am 3/4 of the way through my radiation, and feeling great. Sometimes my breast hurts a little, but so what. The arthritis and pains in my knees and neck and shoulders are dissapating. Generally I have more energy than I've had in a year! For about  6 months or a year prior to my BC diagnosis I had been feeling unusually tired, and just thought I was getting old. Now my old energy is returning. I know I may feel fatique from the rads any day now, but so far so good. I hope this continues. 

    Also, see how my hair has grown. Its still baby fine and no sign of curls. I keep hoping for the curls.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    MBJ:  Thanks for the good wishes.  I am getting less nervous about the visits, but the apprehension begins to sneak in a little as I get closer.  Just hate even going into that cancer center - ugh!  80 degress!  I am jealous!

    Heidi:  I agree - I think you should keep going to the same place for your all your mammos.  I still go back to my BS for them, but they have a dedicated center where they do nothing but breast cancer related tests, etc., so I always have one of the three female radiologists reading all my testing, and then my BS goes over it with me.  There are 4 female BS and three female radiologists that opened this practice, after leaving the practice groups they were in previously, about 9 years ago and you get your mammo and US results immediately which is great, and the same eyes are always looking at everything. It's not open to just any woman wanting to go there, you have to be a breast cancer gal or at high risk.  I am fortunate to have them.  And since I'm on this thread, I want to just say - the slide show was amazing.  So very beautiful - thanks for sharing it with us.

    And sending hugs and all good wishes to everyone else on this thread. 

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  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2010

    I LOVE the Princess Bride......."Hello my name is Indigo, you killed my father, prepare to die".  My oldest daughter watched the movie so much she knew it word for word when she was young.

    Ruth - Congrats on finishing treatment!!!

    Heidi - thanks for sharing the pictures and videos - beautiful!!!

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Mitymuffin - you look adorable!!!  Love the new pic.  I too wished for curls - never got them - same old baby fine hair with not even a wave.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    mitymuffin- I had to take a second look! Hair! Congrats!

    I had a grizzled look and soft curls on top when my hair grew back but, alas, it is mostly brown again (hubby keeps telling me I still have the silver-back look on top) but the curls are definitely gone--- damn. I really liked them. Now I just have this boy cut look that everyone thinks is cute, but I miss my curls. With styling gel I can coax a few waves out of it, but not much more. Frown

    tnbcRuth- I agree--- on with life. I think I can finally chart my next course now that I've sailed around all the minefields that were in my way.

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited December 2010

    Mitymuffin - hair is coming in nicely...yay you!!

    Ruth - I love your attitude. I'm going to try to follow your approach myself.

    Heidi - I agree with Linda about having mammos at the same location every time.  That's what my onc. recommded to me. BTW, the village is lovely.  My DD and I just watched the slideshow together. Laughing

    kelben - where in Ontario are you? I'm in Mississauga.

    As usual, there's too much activity on this thread to respond to every topic.  Wow, what a busy bunch we are...

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