I think I have a problem
Comments
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Hi Annie,
Certainly I think you should proceed with the radiation ASAP, at the same time as sending all your records to Johns Hopkins.
About the Celebrex study -- it only involved 42 patients, and the "punchline" only involved 22 patients whose tissue was available to assess Cox-2 expression. And the punchline is: "should be further evaluated in larger series of patients."
So from just reading the abstract, I wouldn't say it's much to get worked up over. And anyway, I think it's about taking Celebrex while receiving capecetabine chemotherapy. But I'll read the whole paper, because maybe it gives real numbers, whereas the abstract just says the difference in outcome was "substantial."
Jesus Christ -- keep you off the internet? Hello, you're the only person who's persisted in obtaining correct diagnoses at every stage of this journey, abetted by your use of the internet!!! In any case, it would be obnoxious for a doctor to say that -- but in your case, you've had to grab doctors by the throat (and now, apparently, will have to grab lower) to get them to pay attention to what you correctly perceived as SOMETHING WRONG.
I'm sorry if my anger is too much -- hope it's useful, but if not, I will dial it down...
Love you, and praying for every blessing, Ann
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Hi Annie , I probably shouldn't be here cause I'm in a bad "mood" anyway. BUT , I sure agree for you to start rads and get that second opinion. And excuse me , "keep her off the internet"!?! I'm sure he means keep her away from sites that will help sue incompetent doctors! Or , that you might learn something and actually have question for his royal hindass! And how dare you question the great Oz! You know whats best for you. Listen to your gut. Hugs and prayers to you Annie. Now , get out of the paralysis state and put up your fists! xx Melody
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Well, he's definitely threatened, Annie. A doctor who is threatened by logical inquiries such as yours is in defensive posture and usually not thinking as clearly.I'm a little confused about the scar finding. Is this the scar over the prior axillary dissection site? So he cut out the prior axillary scar, and the pathology on it showed the micro-satellite cell problem.Maybe while you undergo your radiation your records could be sent to your choice of second opinion. Johns Hopkins has a strong oncology unit, with Nancy Davidson, MD and also Antonio Wolff MD.A triple negative breast cancer expert of course is Lisa Carey, MD, medical director of the University of North Carolina Breast Center, Chapel Hill.Your doctor apparently doesn't know about the strength of support and insight/wisdom here at breastcancer.org. Tsk, tsk.Tender
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Annie,
Making my blood boil, "keep you off the internet" indeed! What an ass! It's not like you're inquiring about a magical herb remedy for heaven's sake, you are inquiring based on your knowledge of your body (and any doctor worth his salt understands the importance of that) and your knowledge of this disease, gained from REPUTABLE sources on the internet. Again, what an ass!
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Yeah, that guy wants patients who will submissively believe his very word and not be a problem by asking pesky questions and bringing up the possibility that he's not infallible!
I live in Texas, and it sounds to me like he "just needs castratin' so he doesn't go make another one just like him!!
I agree, by the way, go with your gut.
Sue
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Annie - I had a problem with my PBM and immediate reconstruction. It was horrific and many bad decisions were made by my medical team. Through a thread on this site, I got the name of a doctor who dealt with the materials that were used in my mess-up. I was scared and at my wits end. My necrotic breasts were escalating to the point of some pretty serious stuff, like gangrene. The original turkeys who did the surgery/reconstruction were making no decisions, just waitin' and watchin."
Enter a new doctor, lots of bad bumps along the way, and a very slim chance of any reconstruction but - I got out of the mess with my life. The Dept of Health of my state is now involved in reviewing my case. The reason I am writing this is to tell you that we are smarter than many doctors. They are our techies. If a doc wants you off the internet, he might have something to hide. Annie, take a deep breath, put one foot in front of the other and show what you're made of. Do what has to be done. This site saved my life.
femme
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Hi all,
I just found Lisa Carey's contact info, and am emailing her this evening to ask for her opinion. This is really hard for me to do since I've been trained since early childhood to never, never, never question an authority figure. Now I have to do it, however. Gary screwed up twice; he can't do it a third time. I have to become strong and proactive. I need to find out if my treatment is standard, or if there's something else I should be doing considering these new developments. I might find out that at this stage of the game there's nothing to do but go with the flow, but I need to know.
Thanks all. I could never have found the strength to do this without you all.
Annie
PS: My mom has told me I can move in with her if I lose my job or otherwise can't go on.
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Annie,
I'm so proud of you.
Sue
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((((((((((((((((((((((((Annie)))))))))))))))))))))))))))))
You go girl! I'm so happy you're being proactive! And I'm so happy your mom is being supportive! Hang in there!
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Hi Kay,
I read and read your story again. I was shocked and very tearful about what happened to you. I hope things are better with better your New Goobers.
Jerri
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Annie,
I live in Texas .... Bryan/College Station to be exact. What part of Texas are you from? I have found a WONDERFUL FEMALE breast surgeon in a dedicated Breast Cancer Center at Scott and White. In fact, she and I think another female physician there are doing some experimentation with ductal lavage as a way to detect BC. It is located in Temple, Texas. Are you within driving distance? The oncologist there is a butt but she is marvelous!
Praying FOR YOU!
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Hey all,
I'm in Laredo. I just wrote an email to Lisa Carey; hopefully she'll respond that she'll give me an evaluation. Now I can only hope my local team doesn't just dump me in retaliation because I MUST continue working in order to survive! Going to my mom's would be a last-ditch measure -- it would involve losing my house and my job. However, it's good to know she's there for me in case all else fails.
Kay - what's going on with your MRI?
Ohmygod, things are so scary.
Love to all our Elephant sisters.
Annie
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Your doctor cannot dump you in retaliation Annie. Big kimshee (?sp) if he would.He can notify you that in due time, which would be extended time since you need immediate therapy, that he wishes to terminate your doctor patient relationship and give local doctors names in place. But given what's transpired, imho, he would not do this because the laws on patient abandonment are very supportive to the patient, especially in times of stress, and this might be perceived as such given the circumstances. So, it would take much time, not short order.It's wonderful your mom offers you a safe haven. Always nice to know someone cares enough to open arms wide. Again, your job is protected by various employment rights, and of course the ADA (Americans with Disability) laws, which are strong. So don't worry about these issues, and if you do, well, you can always come here to get information.Best,Tender
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Annie, I know I've made a nuisance of myself by gently nudging you toward a 2nd opinion. Johns Hopkins, UNC/Chapel Hill, Mayo, ... any of the big-league cancer centers should do. Laredo is down the road from Houston--have you ruled out a consult at M.D. Anderson?
I swore I wasn't going to tell you a story about 2nd opinions, but heck--I'm going to have to do it anyway.
About 15 years ago, my MIL was having vision problems. She lives in a suburb of Tulsa, so she figured the credentials of doctors and medical centers in her area would be fine. Her doc referred her to a local neurosurgeon.
The local neurosurgeon did some scans and determined that a tumor was pressing against her optic nerve. He surgically removed the tumor, but there was a problem. The pathology report said the tissue he removed was "normal brain tissue." He shrugged, and told her to come back in 6 months so he could re-evaluate the situation.
We, the family, went ballistic. My MIL gave up and took her scans and reports to M.D. Anderson. There, a neurosurgeon determined that the first neurosurgeon had missed the tumor completely. The scans done at M.D. Anderson showed that the first surgery had removed tissue right next to the tumor, but the tumor was still there. Why the first surgeon couldn't see that on a repeat scan is still a mystery.
Anyway, a second surgery was done at MD Anderson to remove the "real" tumor. The tumor was benign, but eventually would have damaged the optic nerve and caused blindness. After a slow but uneventful recovery, my MIL is fine.
Laredo is not a small town. Plenty of cities that size have competent oncology centers. Your situation is complex, though, and I think even if you were being treated in a large metro area like Dallas/Fort Worth, a 2nd opinion would be a good idea.
OTOH, I can't imagine a scenario in which your next step would be anything other than rads. And, according to a BC colleague of mine, even a hospital as small as the "regional medical center" in my town can have a very good radiation oncology unit. So, you could continue on to rads even as you pursue a 2nd opinion.
As for a doctor who would suggest that you stay off the internet...my first oncologist told me (to my face) that I "read too much." That was in response to my question about possible cardiac effects from Adriamycin and my desire to consider alternatives to the AC he was planning to use on me. I asked for a different oncologist. I cannot work with or trust a physician who wants his patients to be totally dependent on him for information.
I would hold off on the Celebrex stuff. I think it's too premature. There is concern that Celebrex, like Vioxx, may contribute to cardiac problems. [Edited to add: Deb mentions in the next post that Celebrex works well for pain. It sure does. Sometimes a COX-2 inhibitor is the only option and will work even better than a narcotic pain med for certain types of pain. But, as a way to slow or prevent BC recurrence? I still think it's too soon, but a good onco's advice should clear that up.]
Yes, it's all very scary. The standard response on Traci's thread in the Moving Beyond forum would be, it all sux.
Big hugs, Annie.
otter
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I am taking Celebrex before and during my current chemo (Avastin, Abraxling, metholtraxate, and zometa). My PCP and I had several discussions about my pain during the time when I had such bad bone pain while the oncs kept testing for mets and not finding it. It helped a TON with the pain. I started the Celebrex about 3 weeks before the mets in my bones and nodes were found. Seven months about 75% of my mets were gone from my bones, nodes and liver were gone. The bad news is that I now have cancer in the CSF.
The Celebrex really helps with my mets pain.
Hugs
Deb C
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Annie ~ there is never anything wrong w/ getting another opinion, NEVER. I am struggling w/ wondering if mistakes were made along the way w/ me, too. I was dx'd 6/07 & knew it had also gone to my lymph nodes (felt like a golf ball by then) but the bx was just done on the primary since it would be pretty obvious if the primary was malignant then so was the enlarged node, so why go to the addn'l pain etc. Went to Mayo for a 2nd opinion before starting tx & they did an MRI & found a 2nd primary almost as big as the first, so when they bx'd it they also did the lymph node just to be positive what we were dealing w/. Mayo placed clips when the did the bxs. Fast fwd to surgery (after TAC) ~ I had 10 positive nodes... I also had the other side removed, but no nodes were removed. That bothered me ~ why not at least the SLN? They said no traces of cancer in that breast tissue, so no reason. Sure. Well, when carefully reviewing a PET report, I saw it noted seeing clips in the axilla... hello? So does that mean BS didn't get the node that had been clipped, the one that was bxd & PROVEN malignant? And now I have progression to the axilla on the other side... you know, the one that didn't have any nodes taken because the breast tissue was clear? So here I am Stage IV and have to wonder if things would have been different if my BS had taken more nodes & had taken at least a couple on the other side? Of course it does not matter now, there are no do-overs w/ this, but it's hard not to dwell on it. Annie, in your case you DO have time to have this fixed ~ do not wait until something more has happened. You are absolutely right to be proactive NOW ~ this your life & it's your right ~ I've said it a million times, but YOUR ARE YOUR OWN BEST ADVOCATE.
KPolasek ~ ah, B/CS... I'm an Aggie, class of '87, Whoop! sniff, sniff, having fond memories of my time in Aggieland...
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Annie,
Everyone's said it so lovingly and wisely. Go with your gut and get what YOU need. It's hard to go "against" patterns of upbringing, but you know when you need to. Accept help when you need to, like Mom, and go for it, sister!
Proud to know ya.
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Annie, you've received so much great advice. Sometimes this thing beats you down so much you just want to curl up in a ball. Luckily you have the strength of all your wonderful sisters behind you so you can do what's best for you.
Vicki my heart goes out to you.
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Thinking of you all this morning, Vicki and Annie and all.Special thoughts for you and yours, for strength in the face of adversity.Tender
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Annie camel/elephant,
I am with the others, start your rad treatment and find another doctor. He has goofed up 2 times don't give him the third strike before he is out. My surgeon looked at what I found on the internet and said that he liked the fact I was pro-active in my treatment plan.
Vicki, My surgeon was pro-active when doing my surgery. I had previous biopsies in both breasts for precancer before my DCIS dx and insisted on doing the SNB on both sides during my bilat mast. He didn't want to try and have a do-over lymph node dissection if a surprise came up in either breast. Fortunately there were no surprises in the path report, just more pre-cancer in both sides.
thinking of all women on this wonderful site.
Sheila
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Hey, Annie, didn't your surgeon try to get you off the net many months ago? So when do you start listening to men who obviously don't have YOUR best interest at heart? Tell him to go screw himself and the camel he rode in on.
Time for another opinion. I agree with all the girls here.
You keep reseraching and questioning and working to understand. You are an intelligent woman, with tons of education--and good sense to boot.
Hang in.
Anne
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VickieG
WHOOP!!!! From Aggieland!!!
They are still losing their games ... but their spirit is alway high
)Annie ---- when we are in the midst of going through these things it is so difficult to know what to do. I feel your pain. I am still waiting to hear back if my MRI is approved or not .... Yesterday was a week ago that it was ordered. Uuugh
KNow I am praying for you all!
Blessings,
K
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Annie, can you get ahold of the path report from your surgery last week? I'm still puzzling over the "microsatellite" remark, and your surgeon's concern about the mysterious appearance of the tissue along your scar.
If you can get the report (and you should* get the report), send a scan of it, or transcribe the relevant sections, in a message to me or to Tender or one of the Anne/Ann's...or to all of us, if you want a collective interpretation. We can do that. If you've filed my email address, pm me and I'll re-send it.
As for what you can do that will further decrease your risk of recurrence ... it seems like there ought to be something, doesn't it? We're constantly reading about this or that habit or foodstuff that can increase or decrease our risk of BC. You know I'm a biological science-type by trade. The problem is, my education and career have taught me that cancer is way more complicated than most of us want to acknowledge. We'd like a little more Vitamin C, or maybe an additional half hour of exercise per day, or perhaps fewer servings of red meat or cow's milk, to knock some percentages off our risk. And, we'd like to know we're making a difference by adopting those changes.
But there is no way to know for sure. We do the best we can do, while still maintaining a decent quality of life. For me, cutting back to maybe 1-1/2 or 2 small glasses of wine per week helps psychologically; for you, that would be too great a decrease in an essential pleasure of life. I honestly don't think it matters anyway. The whole entire thing is a game of probability. It's also a house of cards. One deviant gene that was mutated by god-only-knows-what will bring down the entire structure, and for the most part, we're powerless to prevent that from happening.
I hate it, too. It sux.
otter
*A gentle reminder: Do get a copy of that path report. Do not accept "No" for an answer. Even those of us who trust our doctors get copies of essential reports, just to have them for reference. In your case, it's crucial, since you're trying to arrange a consult at another center.
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Annie and all,
I got word this afternoon (Tuesday, 10/21) about my MRI -- 8 th day after it was requested ----- they denied coverage. The girl I talked to said that she was re-submitting it and could not believe that they denied the request ..... so she is trying to word it different to see if they respond. IF I do not have word by Friday I am going to call them myself (she said she would give me their #). They really don't want me to do that
)Blessings,
K
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Dear Siselephants --
Sorry for the dearth of reaction today; I didn't sleep much last night, and just now got home from campus.
I asked the BS's office to fax me the path report, and they promised it would be done first thing in the morning (I got the office personnel as they were locking up for the day). Talked to the oncologist this morning, and strangely enough the BS had not seen fit to share the path report with him, or even tell him about the results! I find that odd in the extreme. However, he called the hospital and then called me back after he'd talked to pathology. He feels the disease is still local, and can be controlled through radiation. I hope there's some truth in all this, and that it's not all smoke and mirrors to cover serious medical error.
Can one still be brought back by radiation from this sort of situation??
I still haven't heard back from Dr. Lisa Carey, but will try to get her on the phone again tomorrow (I also sent her an email). I imagine she must be very, very busy. If I find she doesn't respond within a day or so, I will contact MD Anderson as you all point out I should have done from the start. I'm now going to be proactive as I keep telling others to be, but haven't been myself. Actually, I should myself have insisted on starting radiation much sooner than this, but trusted the path report from my first surgery that said the nodes were sterile ... "Never trust anybody or anything" is my new motto to live (or die) by.
As far as diet is concerned, I don't eat meat of any kind, and only take skimmed milk in one cup of coffee in the morning and one cup of tea in the evening. I eat essentially vegetables, nuts, and fruit, and my weight is normal. Yes, I do drink wine, but in moderation and only at meals. From time to time I'll have a Margarita or even a vodka Martini, but everyone in my family has drinks upon occasion, and nobody else has had BC. In any case, mine is medullary (basal cell) so, at least according to the docs, alcohol plays no role that we know either in its development or in its recurrence.
I hope the radiation can at least keep the beast at bay for a while. I have an appointment with the radiation oncologist at 9:30 in the morning, and suddenly realize I've committed to giving a speech on the importance of learning different languages at the International Fair on Thursday. Yikes! Off to the drawing board.
Love,
Annie Camelephant
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Dear Annie,Hoping today's radiation stimulation went well, and your radiation oncologist has layed out a schedule.Keeping you and yours in my thoughts,Tender
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Dear Annie,Just wanting you to know how much I and others are thinking about you and pulling for you to have strength as you begin radiation.I understand you may be off line per your doctors request to have a unified medical voice and surely can respect this. But I miss you and just wish to say I hope you know we're joining hands in a circle of support.Lots of good thoughts being sent your way.Tender
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Dear Annie, Hopefully you can get your course of action lined back up, even if it is with another doctor. sometimes we do have to look out for our best interest when it seems the professionals are not doing it for us.
Sheila
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Annie,
I wouldn't beat myself up over the whole diet vs BC thing. It's sounds like you have a very good diet and there's nothing you could change for the better. There are many people on this board (myself included) who have different diets, perhaps not "worse", but different, and still got BC. I don't think I will be changing my diet very much with the one exception of looking to reduce or eliminate phytoestrogens, because they just don't know enough about them. It's a quality of life thing for me. I just don't think life would be worth living if I had to drastically change my diet and cut out all the special things. However, it will be easy to reduce things like potatoes, peas, edaname, corn, and yams. I'd much rather have broccolli and brussel sprouts anyway.
My gut says your remaining lymph node was surrounded by necrotic cells so it was being attacked from the outside by the chemo which was working it's way in. I have this mental image of "the fort is surrounded and is under siege, with no place for escape." I think it doesn't definitely doom you to anything other than slightly more vigilence. Everything else is so indefinite that it pains me to think of anyone worrying so much about it.
The only difficult thing about radiation is the logistics of going every weekday for several weeks. It plays havoc with schedules, especially for working people. But you'll get through it. I was surprised just how quickly it went.
Finally, I hope any further medical opinions you get give you comfort and eases your worries.
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Hi all,
My apologies for having been incommunicada for a couple of days; I somehow got a terrible virus in my computer that overrode even my Norton (wouldn't let me run live update), and threw out multiple pop-ups urging me to buy some sort of anti-trojan horse protection. It took DH two days on the phone with Symantec to weed the bug out of every file it had managed to infect.
My BS had a conference call with Lisa Carey yesterday. She recommends going ahead with the radiation pronto, and starting back on the Bevacuzimab within three weeks. I start radiation treatment on Tuesday, and am waiting now for a call from the cancer center at the hospital to be scheduled for the Avastin. After I'm done with the radiation (six full weeks; five fields including full breast, mid-chest, axillary region, and neck), I'll have another PET scan. If that comes back clean, bi-lateral mastectomy at the beginning of June (I simply cannot take four weeks off before then).
I hope everyone holds me in their prayers. I need a bit of a hiatus from this stuff; but then, don't we all.
Love,
Annie Camelbutt
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