Calling all TNs
Comments
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Ah Cocker...I know the ticking time bomb well..but what are you going to do....? You just keep on being your own loving sweet funny self and we will worry for you ok?
Oh yeah..the lx vs. mx stuff...agree with you Luah..reading on here and hearing the "doing everything you can stuff"....I hear ya..and I wonder to myself..did I do the right thing..or not? but this isn't all the equation here...some of us have chemo before surgery...some don't...some have taxol before AC..some don't....some don't have adriamycin at all....and that is supposed to be the "best"...so anyway..all of our treatments are so different......guess we won't really know what is the "best' for a few years...like we all say it is a crapshoot.
I just wish we knew what really is the BEST treatment..triple negative is such a broad diagnosis and even though we are all triple negative..the biology of our tumors could be soo different that some things work and some don't..dang it.
And yes Gilly...we are not doctors on here..we just have opinions..but I think some of our opinions are right on...
I love the information I receive on here...and I take it to my onc and talk to him about it..but bottom line..it is his and my BS's knowledge that I go with in the long run...I have to...
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I have had 3 rounds of chemo and the bottom of my feet and my hands are becoming real sensitive like they have been burned or the skin is thinning. Has anyone else had this? My husband wants me to call my onco but it is not bad, just my feet really bug me after my Zumba class with the sweating. No numbing or tingling just sensitive.
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The5owens - Thoughts are with you tomorrow! We are there with you in spirit!
Brower - Zoomba while in A/C?! You are Wonderwoman! I had no problems with sensativity in my feet and hands...... But way to tired to dance and sweat. You go girl!0 -
Hhh
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I was never given a choice - they just said they were going to take the lump out. I really think they were surprised that it was TNBC instead of the hormonal kind. So can't really comment on the BMX vs LX thing. I agree it is a crap shoot.
I just have the belief I will be fine and all the cancer is gone! I know it is a bit polyanna, but I'm ok with it now!
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brower: my feet were sensitive before they went numb. I would try to keep off of them as much as possible and sit with them up when I could. A good soak helped too. And yes.....you're a super star if you're rocking the Zumba while on A/C. The only thing I was rocking was my bed, the bathroom floor and the chemo suite. You GO girl!!
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Titan, my point was, that yes we have opinions, and sometimes they ARE right on, but that others reading the information internalize it as fact and then spout it out inappropriately. Opinions get turned into facts from repetition.
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Annie, we are all ticking time bombs - but I never thought I would get cancer even when I had cancer and didn't know it so I know my "gut feelings" are often wrong. I was cleaning the water bowl in the indoor/outdoor fenced cat area a couple days ago. I picked up the water bowl and felt something brush against my hand. I looked down and saw a black widow spider. Our poisonous spiders here only include the black widow and brown recluse, but the sight of a black widow, with its large glistening black body and bright red hourglass sends me into full fright mode. It happened to be my hand that has the numb index finger so I spent the next couple hours watching my finger because I was afraid I could have been bitten and not have known. Turns out I was fine - but I was thinking how ironic it was because I am so afraid of this cancer taking me out and it might well be something random like a poisonous spider bite. BTW, your cartoon is hilarious, and that definitely resembles me in the mornings.
The5owens, sending you the best for tomorrow. Brower, I had sensitivity on the balls of my feet and still do.
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The5owens - Good luck with your surgery. Let us know how it goes, and give yourself time for a good recovery.
Annie - Yeah, the ticking bomb... I'm also at a point when I feel like I should be celebrating my 'victory,' but I'm not ready to yet. But I think what I read on this thread and a few others about tackling that day in day out has really helped me get my mind around it. Hang in there. You've got great spunk.
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You know I don't regret having a MX or an LX if my oncologist had chosen that for me but I do regeret being a TN and not receptor positive as I feel I would basically have had a better chance. Only my opinion.
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Oh my god Christina. I would have died just seeing the spider. Those brown recluse ones are huge as well aren't they. I have never been able to stand those creepy eight legged creatures. The black widow is poisonous in England as well. I think I might just visit you but not stay lol
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I wasn't going to weigh in on the lx vs mx discussion, but I just can't resist! I originally had right lx in 2003, that is what I wanted at the time, even though I did second guess myself a bit. Fast forward to 2011, new primary opposite breast, found late because of dense breast. BMX this time. And radiation to left side now. My docs did not test me in 2003 for brca, they thought bmx and hysterectomy would be too aggressive anyways so I didn't fight to have genetic testing, even though my mom died of ovarian cancer and 3 aunts had breast cancer. My new docs tested brca right away, which I tested positive for. I hope I have the facts right, but I believe that there is a 20% chance of a new breast cancer popping up within 5 years if you are brca pos. Wow, don't you think my first docs should have steered me in a different direction?I did do research at the time, but went with what the doc said, and did not do a second opinion. My gyn today said that they recommend hysterectomy for women of brca 1 pos by the age of 35. 35!!!! Another wow! Mine is now scheduled October 15th, at the age of 45. Do I wish I had bmx in 2003? Yes! Would it have guaranteed I stay cancer free? NO! It may have prevented my second tumor though, as it was definitly in my breast. I just think there are so many different situations and there is no way to say which treatment is better, unless you now ALL of the specifics, and then, even then there is not a clear cut answer. So, while a lx and bmx have the same recurrence outcome, an lx certainly can not prevent a new tumor in the opposite breast, a bmx possibly could. I realize not everyone is as high risk as me, but my thoughts are if your body made the cancer once...My intention is not to scare anyone, but to really have them consider ALL treatments available to them and make an informed decision, based on at least 2 opinions from top doctors. Sorry about my rant. And like I said in the beginning, I was happy to have a lx the first time, and of course I couldn't predict the future!
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Joe and Wanda had a small apartment in the city and they decided that the only way to pull off a Sunday afternoon quickie with their ten-year-old son in the apartment was to send him out on the balcony and order him to report on all the neighbourhood activities.
To a young boy, they thought, spying would be a lot of fun and would distract him for an hour or so.
The boy began his commentary as his parents put their plan into operation.
"There's a car being towed from the parking lot," he said.
"An ambulance just drove by."
A few moments passed.
"Looks like the Andersons have company," he called out.
"Matt's riding a new bike and the Coopers are making whoopie."
Mom and Dad shot up in bed. "How do you know that?" the startled father asked.
"Their kid is standing out on the balcony too," his son replied.
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bak94 ~ I agree having the most information will help with decisions, and everyone has a different level of comfort.
I had my LX last Oct, wasn't tested for BRCA until after chemo but before starting radiation. I am BRCA2+, so I put off radiation. I had a hysterectomy/oophorectomy Aug 20th, and will have a BMX w/reconstruction this Monday, Sept 10th. It is so hard not to look back and second guess my decision last Sept. I am looking forward to getting this behind me and pray for clear path report.
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Hi TN ladies
bak94 and sandlake - I am BRCA 1+ and was told that an oopherectomy was all I needed. Is it recommended that BRCA 1&2 + have a hysterectomy too??
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I have my final round of DD A/C next Tuesday (yay half way through) Other than fatigue I have slipped through unscathed (developed a rash). But I am looking for your experience with the taxol side of the treatment.
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journeyu-I miss spoke! The guidelines my doctor cited was for an oopherectomy including fallopian tubes by the age 35 if brca 1 and by 45 if brca 2. In my particular case he recommended a full hysterectomy because I am on tamoxifen and because of my age. Also, there have been very few cases where ovarian cancer shows up after ovaries have been removed so my mo wants everything out because of my strong family history. I wish I remember which guidlines they were:( My mo had his conference on ovarian cancer yesterday. I guess people come from all over to go to it. I will try to find a link to the guidlines!
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Bernie-facebook question! I am still confused! If I post in the private group, will my post show up on my wall and those of you I friended? I just don't want a bunch of my cancer worries to show up on facebook, but I like the other fun stuff to show up. How do I keep the cancer stuff private, and the other stuff not?
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Hi bak, there are two ways to do this
1 (the best) you send me a friend request. I add you to the private site and then you delete me as a friend in the main site. Plus you do not befriend anyone else. Only post in the new group.
2 you can add as friend and then go in and remove from news feed
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Bernie... ok dumb question - how do I unfriend you? I really am so technically challenged where FB is concerned
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OK - I think I have done it... just went to your profile and unfriended you. Went back into my profile and I think it worked - woo hoo.
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check out my message on fb
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Ok, so I don't want to unfriend anyone, I like getting the photos and stuff on my wall, so I just can only talk about what I want everyone on facebook to know? I just still don't understand why what is posted in the private group shows up on the wall, there has to be a setting to change that! What is posted to the private group should be able to stay there, like when you post a message to a friend it doesn't show up on the wall, only if you post on the wall. Ughhh, so much for me to learn! and I thought I was computer savvy!
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Tooky / so glad you have had so few SEs! Taxol caused a lot of nerve damage for me - but everyone is different. Wishing you all the best...
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bak - thanks for clearing that up! I was in a panic thinking I had to schedule a hysterectomy.
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journey ~ I asked my Onco-GYN "if I was your sister what would you recommend?" I've had to make so many decisions this past year and needed a little guidance. Since I'm 52 I don't need those parts anymore
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Hey there all. Just wanted to pop in and say hello. I have had 2 occurances of BC one on each side. BOth were TPN and was tested to find out I was BRCA 1 positive. I had a bi-lat mx in Nov with a bi-lat Diep in April and in Oct I will be having my ovaries & tubes removed along with the 2nd phase of my DIEP surgery. I asked the OB/GYN and he stated there is no need to have a hysterectomy as it is only the tissue in the ovaries and tubes that are at risk. I"m at no greater risk for my uterus.
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Now I'm really confused! I went to an old-school OBGYN (referred by trusted PCP) several weeks ago to see if I would be well-served to have a prophylatic hysterectomy. He said no since I'm triple negative. MO won't test for BRCA because I was 68 at DX. After reading the above messages and a few other places, I'm not sure what to think. Jan
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Ladies I'm also not computer savvy when it comes to things like this. I don't really like having my private details on FB cause anyone can hack into things now. Why can't we just PM our phone numbers etc and do it that way. Annie
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She has obviously been reading 50 shades of grey!!
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