Calling all TNs
Comments
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Melissa, there isn't a 'one size fits all' answer to that. I suspect you'd get answers across the spectrum. A lot of it depends on the type, size of tumor, whether you have positive nodes, your age, your own personal level of risk you're willing to accept, etc. If you just want to gauge our own differing philosophies and then see what feels best for you, that's fine.
For me, I chose BMX, but haven't decided on reconstruction yet. I went for the most aggressive chemo they offered me (a clinical trial), and opted for radiation, too, although it was borderline whether it would be helpful. But that's just me. I hate uncertainties and this is a biggie. I feel more at peace knowing I've done everything I could, but know that's not for everyone, so I'll let others chime in now with what they chose.
Just know it's a personal decision that you need to feel comfortable with.
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Melissa: You may find this interesting, from a couple of the top doctors in triple negative BC. http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/#q20
Riley702 is right... you will get all differing opinions from women here. Get as much information as you can, and then make a decision that's right for you.
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lrr493: I am really glad to hear there is some research being done comparing outcomes from neoadjuvent chemo versus sugery-first in triple negatives. It's obvious that neoadjuvent can inform the onc about the effectiveness of a regime and that seems pretty important to a trip neg with no other systemic treatment options. But does altering the regime make a difference in outcome? Does delay matter? Maybe chemo is more effective on the cancer cells floating around the body than the tumour mass itself? These are the questions I'd like to have answered (or would have liked to have answered when I was diagnosed).0
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Melissa no one even suggested MX or BMX to me... they felt lumpectomy w/chemo and radiation was the way to go. So far it doesn't look like its in my nodes. (but if we keep screwing around that will change!) I have very large breasts, so they've got plenty to work with.. if I was smaller the size the of the tumor would likely dictate a MX. Right now the plan for me is lumpectomy with matching reduction to the other side. (My stats say 3cm - it measured 3.9.. )
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laurajane - Over the weekend the pain in my knee has seemed to go away so I think I may have pulled something or it could have been a delay of the Taxol who knows. We put so many chemicals in our bodies with this crap that one can never tell. Hope yous stops soon:) (HUGS)))
Going in today to see if they will restart rads. Hoping so only 7 left and the skin has cleared up really good. Still some spots of red but NOTHING like last week.
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Got another question? Are rads given during chemo? or is it completed separately?
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Melissa: Rads are usually given separately, as the last phase of treatment... following chemo or following surgery if neoadjuvent chemo was done.
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on changing protocol in the middle of the protocol at http://pinkpeeca.blogspot What a week. The one thing my three docs agreed on is neoadjuvant chemotherapy, then surgery, then? Even the surgeon agreed. I can't take Taxol (rash, knees, chest pain, difficulty breathing) but there are similar ones available. So sad to see so many new names posting, do we all just go away after one or two years? To the old timers (more than 6 months) thank you for staying, this has been a huge help to me.0
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I agree Pink Pee! Reading the posts of those "on the other side" is so comforting. I respect what you all have to say and enjoy your good humor! Thank you!
Tiffany
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Melissa: You've gotten some really good advice from the other ladies here. Throwing in my two cents here. BMX or MX or lumpectomy... it's all a personal decision, one that you must make based on all the information pertaining to your specific diagnosis. Some women, such as myself, weigh unilateral mx versus bilateral mx based on our BRCA status. I was positive, and felt it was a no brainer to have bmx. I originally would have chosen unilateral, based on the fact I'm very small and my BS felt I would most likely be disfigured by lumpectomy. These all carry the same prognosis... there is no difference in survival or recurrence between them. The only difference would be if you find out you are BRCA positive. Rads... I've read some studies where they have been given during surgery... like a spot dosage right in the area needed. However, most often rads are done post surgery, and post chemo, if needed. You are in a whirlwind of decisions right now, none of which are easy. You're probably getting all kinds of info, which is good, but can sometimes (often) be overwhelming. I recommend a second opinion, even if you love your BS. It's never a bad idea to get someone else's opinion. But ask your BS if lumpectomy will leave a good result for you. Consider that you might not have to have rads if you have mastectomy. Rarely you do, but most often you won't. Rads are hard on the skin. If you want immediate reconstruction and know you'll have to have rads if you get lumpectomy, ask your PS advice on this. Some women choose mx or bmx because of the damage rads leave to the skin, or for symmetry purposes. If you haven't checked out the picture forum here, I strongly recommend you do. There are several women who can help you get to that site, and it will give you a wealth of info via pictures of what to expect!0
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I am almost 1 year out of tx - finished December 31, 2009. Hard to imagine I can be considered an oldtimer on this thread!!
For what it's worth, I had lumpectomy, chemo (DD AC/T) then radiation.
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Yeah Gill! One year out!! We need you "old timers"! LOL Keep coming back sometimes to reassure the rest of us! I'm in the midst of chemo right now and feel it could actually kill me instead of the cancer. Had neutropenic fever, got neupogen, and had a reaction to it which gave me tachycardia. And my reports indicate I may have had pneumonia! I thought I was doing so well with the first round. Now I'm really anxious for the next one next Monday.
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Long day today. Everything OK but lots of stressful doctor's exams & further testing that encompassed the entire day and three different locations within state (rescan of lungs showed previous questionable area resolved) If this damn cancer doesn't kill me these fricking tests (and the anxiety they produce) will. I'm *BEAT* and feel like I have *once again* dodged another d*mn bullet.
On a lighter note, I have all the Dept. 56 video taken and am just putting it to some music (iTune isn't cooperating with my music choices for upload, even though it's my d*mn music CD!) And right now I am too pooped to work on it (maybe tomorrow-- after scanxiety overload has time to diffuse via a good nights sleep).
Time to decompress---am I rambling? Two xanax earlier, 2 mint/peppermint schnapps ice cream soda like cocktails (very Christmasy and pretty to look at <Applebees>) and a pasta dish. All sinfully delicious and damn the calories--- I had clean scans and an excuse to celebrate!
OK, I'll shut up and go to bed now. Tomorrow's going to be a better day.
Heidi (warming her buns by the den fire and listening to happy pups chewing on knuckle bones)
ZZZZZZZZZZZZZ
PS- I'm with those who wanted their nasty-assed tumors out ASAP and both med onc and BS concurred (no neoadjuvant chemo). FWIW
ZZZZZZZZZZZZZZZZZ (over & out)Funky post tonight, huh?
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Heidi - Hope you get to totally relax tonight and that all settles down for you. I relate to your "dodging another damn bullet." While I have not YET had to have any other testing since treatment ended (and I say that with both fingers crossed on each hand), I too feel exactly as you do and say it after each 3 month and 6 month vists with onc and BS. It's as though I hold my breath after each visit until the next one. I detest living like this, but then again, I am living so that helps!
Can't wait for the video. Now I'm going to lay down on the floor after a busy, busy day at work and chew on my knuckle bones - I go for my next 3 month with onc next week.
Linda
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- Heidi - glad to hear all is okay from your test. You deserve to celebrate.
Linda - here's hoping all wlll be good for your onc visit next week.I finished chemo in Feb. and rads in April of this year so not sure if I'm an "old timer" get but I'm feeling well too. Still can't believe I HAD breast cancer (i'm preferring to use past tense)! It's freezing cold here. The doors on my car were frozen shut this morning when I was "trying" to go to work. Now for a hot shower and a warm cup of tea and my pjs. Good night all.0 -
Just wondering...the original plan for me was to have surgery, chemo, then rads.. now with my second opinion the plan is chemo..surgery, then rads...I have read in many different boards and some ladies have them together...I haven't thought to discuss with my onc..i really didn't know it was an option..and in what cases they do it..pros and cons.??
Ultimately, im trying to get the most information so that i can make sure im covering everything...sometimes i think i may be worrying to much about everything...but i'm not sure how to stop...
I appreciate all the info you ladies give me... i want to be well informed!
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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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Ditto, swiftbird. If there is new info (good or bad), I want to know. And I love you guys, too!
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Aw shucks... group {{{hug}}} time. Now, back to bed (just had to watch Princess Bride--- it's a real pickmeupper)
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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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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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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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Linda: BTW: 80 in Los Angeles today.
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Heidi: Love, love, love the Princess Bride.
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That's inconceivable!
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LOL! As you wish!
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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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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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