TRIPLE POSITIVE GROUP
Comments
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Rozem....not sure if this helps, but with my port, anytime I was having some kind of surgery/test in the hospital, I went to my oncs office and had them access the port, so it was ready when I got there. With my kidney stones, they did have to call a nurse from another floor who was trained to remove it.
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moon - can't tell you how sorry I am about the TE, such a PITA to have a setback like this - I know it was not in your plans. Sending you a big hug.
I am here in Washington D.C., it is beautiful outside - just as it was on Sept. 11,'01. I posted this on another thread, but wanted to say it here too:
I am here in Washington D.C. for the vaccine trial and it is strange to be here on Sept. 11th. We lived here in 2001 and my husband was inside the Pentagon when it was hit. Our neighborhood was heavily military and federal civil service - we lost two neighbors, one we knew well, and had a number of injured. My DH was about 150 yards down the hall from the impact, but deeper into the building. I didn't see him until about 4 p.m. Later that evening a bunch of us were outside talking and Air Force One with a fighter escort flew right over our heads in that very quiet sky, all other planes were grounded. We all just looked up and then at each other in utter disbelief at the events of the day. I am staying with my son while here and he is a fireman. He was at the fire station for the night last night so his girlfriend and I went over to visit since I had never been there. I have always been proud of him, but seeing him there in his uniform around all the fire equipment, I was happy to see him less as my little boy and more as the man he has grown up to be. I am not a fan of tattoos but he has one in the middle of his back that he got when he was 18, he designed it, it is a pentagon shape with twin towers as the eleven in 9/11/01, with a red, whte and blue fire helmet at the bottom. It just says "Remember" underneath. My heart squeezes a little every time I see it.
fluff - I have a couple of big itchy goose eggs on my right thigh!
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Kathy, Wow, reading your 9-11 story and about your wonderful son, made me cry..So glad that your DH was not injured..Hope all goes well with your vaccine trial. Enjoy the time with your son.
Eileen
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Special I was living on the boarder of Boston and Brookline during 9/11 about 10 minutes away from Logan Airport (if no traffic). I remember all the loud military planes in the air for days after. I was talking to my friend who had a friend that was interviewing that morning at Twin towers. She too lost her life that day.0
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Specialk-your post reflected exactly how I was feeling today. I know we all talk about how terrible it is to have BC, and it certainly is, but when I see our soldiers come back missing limbs, it makes me feel like it is not so bad. Not nearly what they went through, or the people whose lives ended that day.
So sorry about the goose eggs. But hopefully that is a good thing. I felt crummy after my last one, but only for that day. Had the big D, kind of tired.0 -
eileen - that is sweet - I am so fortunate to have been a military wife for 28 years and I never had to face serious injury or casualty, I thank my lucky stars. My husband was a family escort for a young widow and her toddler who were greeting her husband's casket at MacDill as it arrived from Dover for burial in our local area. He said it was one of the worst days in his career to see her grief for her spouse who was the age of our son. Whenever we have one of these kids arrive at MacDill everyone, and I mean everyone, comes out of the buildings and homes and they drive the hearse and family car down the streets on base so the family can see the thousands of salutes for their loved one. We have been at war for so long I hope people don't forget that these ongoing losses are just as heartbreaking as the ones on this day eleven years ago.
fluff - I felt pretty bad yesterday (like chemo) and not that great today, but better. The Rn coordinator said that the itchy leg would get worse with each set of injections. I tried to read the label on the syringe bag this time but I could only see one and it was the sargramostim. So I still don't know much. You are right, sometimes remembering what others have to endure allows us to see our BC experience with a different perspective.
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Moon,
So sorry to read about the TE. That stinks.
About radiation. I met with the BC group last night. With the new radiation recommendations our RO Dept. is calling women who finished chemo within the last year and had positive nodes and no rads. They're asking them to come back in to take radiation.
Can you imagine being 8 months or 10 out and being called to come back for radiation?
Yikes.
But there seems to be such a survival/non-recurrence benefit that they're going back about a year. (Which makes me really wonder why they gave me such a hard time when I wanted to wait 6 extra weeks after chemo before starting rads!) lol
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My friend was supposed to visit her friend in NY that weekend. My friend did got to her friends apartment in NY to pack up because the mom was stuck in Portland Oregon.
So sad but then there are stories like your Niece that thankfully someone was watching over them.
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SpecialK - wow and I agree you must be very proud of your son.
Kayb - how scary for your niece.
TonLee and others - I know y'all are getting sick of hearing me talk about this but it's just getting worse. I finally got a call back but it was the nurse and not BS. She told met BS had talked to the RO and decided that the surgery would go ahead as planned (including TEs) and radiation wouldn't be decided until after the final pathology. I told her thank you for the information but I wanted to talk to BS myself. Of course she didn't call this afternoon. The conflicting opinions and lack of communication is driving me crazy.0 -
kltb don't let this drive you crazy. Just double and triple check everything. These days you have to be your own advocate. Sucks but you really do. I don't know one person who hasn't had to deal with some kind of BS like this. Don't get me started!0
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Yes we must look out for ourselves. My latest example is that my breast surgeon failed to tell me to stop Tamoxifen 4 weeks before my operation! It was only when I checked with a nurse that I discovered this potentially life saving fact. I now have to weigh up the risks of coming off Tamoxifen against my cosmetic reasons for having reduction surgery. I'm still have very scant periods each month so I kinda feel like I need this daily drug. No easy answers ever.....
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I need your two cent's worth, ladies. I just turned 48, very premenopausal before chemo, physically active (yes, before taxotere). Asian. I have observed almost everybody's had bmx on this thread. Should i? Im nearing the end of my 8 cycles of chemo. Onc doesnt think i need Prophy mx on the unaffected side but is considering ooph plus tamoxifen.
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BCBarbie,
I didn't have a double MX. I kind of have the "if it ain't broke, don't fix it" mentality about things though. I'm so glad I kept my real boob. Mostly because I have normal sensation! lol My PS made my reconstructed side match my natural side. Looks great
And statistically my odds of getting it in the other side aren't much higher than they were before...tho it does go up but not by significant amounts (sorry, I can't remember the numbers I did all that research TWO YEARS ago...lol)I also had an Ooph. Now that was one of the best things imo. THAT gave me more peace of mind than the MX.
Hope that helps.
It may appear "everyone" does double MX, but in my RL experience, I'm not sure if it is as common (as here). None of the women in my older BC group did the double, and my younger group, out of 15-20, maybe two?
I do know this. The more stuff you take off/out, the more recovery, blah, blah, blah you have to deal with.
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lago - we had many hours of fighters flying in D.C. too - some of those pilots were friends - made me feel better knowing they were up there. Everyone's stories of luck and loss on 9/11 take me back to that day - so fortunate for some and so sad for others.
kltb - keep pressing for answers - i know it is frustrating
jackboo - i came off Femara for surgery and it worried me because of how highly ER+ I was, even though post-meno. What does your onc think about a short term break?
bcbarbie - there is a mixture of surgeries on this thread, what does your surgeon think?
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bcbarbie - that is strictly up to you - I know that in my case of choosing BMX (in my case over a lumpectomy option), it is actually more of a mental thing than an actual risk factor. I know with me and my mental state (or lack thereof), I would just be more comfortable with that decision. But like TonLee said, if it ain't broke, don't fix it! is also a very valid decision.
jackboo - ack! I am getting conflicting opinions from BS and PS on coming off of warfarin for a brief time for my BMX...one feels it isn't enough of a dosage to matter, the other wants me off for 3-4 days. You are right, there are NO easy answers!
lago - thx...I am already there (crazy) lol!
BS didn't call yesterday...let me say, I am in no way letting her make the rads decision for me. I just want her opinion and her reasoning. I will ultimately do what I think it necessary and I am still definitely leaning towards rads. I don't see how final pathology will change anything as I had chemo already and ideally, that S*** will be mostly gone - maybe they can tell from necrosis? In any event, the irony is that in this situation, I am getting what I first wanted - the BMX with the TE's and the possibilty of rads. So nothing has actually changed! Thanks for all the input and for listening to me whine
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jackaboo my BS's nurse told me i have to come off tamox for 2 wks b4 surgery, my MO said 1 week - so who knows???? i am going to call the surgeons office today and ask about some shot that my friend said she did instead of coming off tamox - i will post the answer that i get. I agree, very nervous about coming off tamox although my other BS said that it stays in your system a long time so even 2 wks wont completely clear me of the drug
kltb04 your situation is EXACTLY what happened with me- RO said rads BS said no. I have no idea why the BS would even weigh in on this decision. They want to look at your post chemo pathology. If you have a complete response (fingers crossed!) then they might re-think your rads. This is what happened to me, I had a complete response so the rads was questionable. I pushed for it because of course once they planted the seed in my head that i should have rads (re-chemo) i was uncomfortable skipping them.
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BCBarbie,
For clarification, I don't mean to imply a BMX is a wrong decision...we each do what we can live with. You asked for our two cents, and since I've only had a uni, that's all I can comment on.
I will support whatever decision you make
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My docs both said 14days prior to come off Tamoxifen for surgery as it has a 14 day "wash out" period. The injection to prevent clotting is likely Clexane which my PS has already charted for me to be given in pre-surgery. It is pretty standard to give it prior any large surgery here in Australia...
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bcbarbie - I was 45 at dx last year with no signs of menopause in sight. I had a lumpectomy, chemo and rads. I'm happy with my decision. You need to do what is right for you. I have not had a period since just after my fist chemo in December. I hope it stays away and that Tamoxifen will be my friend. I've been on it since May with no real issues. Good luck and know that whatever decision YOU make will be the right one for YOU.
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I was also 45 at Dx. I had a DMX/reconstruction, Chemo and Anastrozole. When I found out I had cancer I just wanted them off me. Thankful I did, my non cancer breast had a large benign lump that never showed up because it was deep. It is a hard decision. Go with your gut feeling! I have no regrets. None of it is fun but we are Survivors!!!
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BCBarbie in my case, once my BS saw 4 suspicious areas in my "good" breast, one he was particularly concerned with, it was recommended to do the double. I would have had to have biopsies every year. That one spot was LCIS.
Here is a good article to read when making the decision. I had 3 of the 6 listed under #2:linky
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BCBarbie: Lumpectomy only here.
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BcBarbie...
Lumpectomy only for me too although I weighed MX/ BMX decison very heavily. In the end it was my renowned Asian American BS who made the final decision . He and My MO were always advocates of breast conserving surgery for me. It's a very personal decision.
My final thinking was this....the worry never really ends no matter which option we take once we've been told we have cancer. There will be lumps and bumps and SE's and tests that will worry us for therest of our lives . I'll wait till the doctors who are trying to save my life tell me they should go.0 -
thanks jenn so you are getting the shot and stopping tamox....hmmmmm i will have to ask about that one!0
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Hi Moon....
Hope you're feeling better!0 -
I chose BMX because I was 34 at diagnosis and didn't want to be constantly checking etc forever. Plus, I did the DIEP procedure, and needed to do them both at the same time since you can't go through that twice. I'm happy with my decision as I had very dense breast tissue. I found the lump myself and I think had I not done the bmx, I would be constantly fearful and checking myself all the time.
My BS felt like I'd want to have a BMX regardless, although he did present lump as an option once they realized how well I was responding to chemo. I asked him what he would tell his daughter to do, and he said BMX, so I listened to him.
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Update on me, I know you are all waiting with bated breath.
Finally heard from BS aroud 2 p.m. Long story short (hahaha as IF I won't type a book), she wants me to wait til after pathology from surgery and get a second opinion. Encouraged me to do all the research and ask all the questions but not to go strictly off this one RO's opinon. She was trying to be nice about it but basically said he was brand spanking new and this is his very first year to practice...which is good that he is up on all the latest and greatest but he has little to no experience. That he was very thorough but that she felt that with my particular case (the one sentinel node nonwithstanding), the position of the tumor in relation to my boob, and even my age (cause let's face it under 40 at 39 is different than under 40 at 32), she wants me to get more input before I make a decision. And that she would know more "once she got in there". Truly she doesn't have a dog in this fight so to speak - there is nothing to gain for her to discourage me from rads so I am taking her opinion into consideration.
So we are back where we started...BMX with TEs...and another RO consult.0 -
I think that makes sense. I didn't see my RO till after surgery and after I saw my med Onc. They really need to know your final path.
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lago, I could have saved myself all this trouble if I would have just waited to see the RO, lol.
New question for BMX folks - I had been looking for a recliner for post surgery, with the thought that we need some new furniture anyway so might as well go ahead and get one. Can't find anything I like that I can afford (with the power/button operation) in the style I would want to keep. But I did find out my insurance will pay for the rental of a hospital bed. Would this be a good option? Or would I be better off with the recliner?
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Just trying to catch up - I had a revision surgery today and have been sleeping all day.
SpecialK - sounds like you have a good boy to be proud of
Kltb - I only used recliner a week or so and then preferred being propped up in my bed with lots of pillows.
TonLee - you mentioned women being called back for rads after treatment due to new guidelines. Im sorry if I missed the explanation somewhere above, but can you tell me in what circumstances
rads are now recommended when they weren't before? My therapist keeps pointing out that I need to come to an acceptance of all I've been thru and the treatments I've had, but I can't stop questioning and worrying about whether there is something else I could've / should've done, and rads is one of those things.0
