Calling all TNs
Comments
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Laurajane
I have a friend who was told she had 6 months
10 years later she is living life to its fullest - dont give up!
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Thank you Claire! for providing immediate feedback on the folly of "expiration" dates.
laurajane- take heart!
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Laurjane - I am so sorry to hear your news. I saw this quote "A prudent question is one half of wisdom." Ask all the questions, get all the tests, talk to all your loved ones, then decide and I am sure everyone will support you in your decision.
Can I ask where in Indiana you live? Is it far from Chicago?
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Laurajane - I can't even imagine to begin to understand what you must be feeling. I am so sorry that you are having to go through this. I just want to reach through cyber space, hug you and then sit down and have a big glass of wine with you. Like the others said, please look to another surgeon and/or oncologist at least for another opinion before you make such a big decision. (((HUGS)))
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A little landscape humor for lj:
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Good morning lj,
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Yah know lj, as I stepped into the shower this morning I tried to imagine (I have a *really* good imagination) what you were feeling; the fear, shock & despair.
You know what came to my mind instead? Anger. Real anger. How dare that surgeon give you that "5 months - 2 year" bullsh*t!!!
Surgeons have the mindset that if cancer can't be cut out it isn't fixable. F*ck that. Oncologists take a different perspective; treat it as a chronic condition. Chronic conditions can be managed.
Don't you dare buy into that "x months to live" bullsh*t!
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Well said hhfheidi! (I happen to have an amazing surgeon who thinks big picture, but I think she is an exception - and maybe because she is a woman.)0
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Thanks to all of you for your encouraging support. I'm praying for a miracle. I need to be here for my kids.
hhfheidi- Thanks for the humor. Sure made me smile. Anger pure absolute rage is exactly how I am feeling today, that and pure exhaustion.
My personal doc is going to try and get a hold of the oncs at the BC Research Center up in Indianapolis today and get some straight answers from them and forward that info to me. Time is moving so fast and at the same time not fast enough.
I'm wishing everyone a great day.
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LauraJane~ I am furious for you... just totally pissed off. To start with, have you even had a PET?????!!!!! Brain MRI????!!!! Bone scan???!!!! If not, you need to demand these tests. RIGHT NOW! Do you want me to call for you?? I would be happy to tell them that they are mis-handling your case and put the fear of G-d into them. Secondly, no- there's NO WAY to know that you have "just a yr". NONE!!! ESPECIALLY without the scans listed above! Third, you tried a single chemo regimen. ONE!!!! Metsters (and you don't even know if you are a metster) try different regimens and scan to check progress. If you become "stable" on a given combo, then they maintain you there. There are soooooo many maintenance chemo drugs: gemxar, imexpra (sp?), avastin to name a few. Many don't even cause hairloss. FINALLY, there are trials and "compassionate" care drugs. The PARP inhibitors are going to be our herceptin. You can get it on trial or through compassionate care. There is also a new class of drugs- EGFR inhibitors that are showing promise for us but are earlier in the pipeline. IMHO- your MD should lose his/her job for pulling this shit. S/He hasn't upheld the current standard of care...
off my soapbox-- ooxx
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Laurajane. No Doctor knows when we will die. I'm fairly religious and I believe that Dr.'s NOR cancer gets to decide when I die, only God does. I can't imagine what you are going through as you try to keep your focus and make decisions. I can, as we all can, share your fear of this though.
There is a great place called Cancer Treatment Centers of America. Don't know where you live exactly but there is one in Zion, IL. and another in Philadelphia, PA. as well as a couple other places in OK. and AZ. They do innovative new work in cancer care and I know they have actually cured some people after they've been told to prepare to die. Your Dr.'s have muffed this whole thing up all the way through so I would not be so ready to take their opinion as final word on your outcome. Whatever you decide, we will support your decision but know that we all have such hope for you.
I have a friend that has been battling colon cancer for over 16 years. She has had one recurrence after another and got it in her bladder. She had a toddler when it all started and has had another child since and now is in palliative care as there will be no cure for her but she has exhausted traditional chemo and radiation and while she is bagged for bowel and bladder, she enjoys life and is still here with her husband and 2 daughters. She is on some kind of chemo cocktail now and goes to my Oncologist. She is so strong and her will to not be defeated by this has helped her to stay in chemo care and she has lived many years she would not have had. This was her decision and I know we all have to have our own opportunity to decide what is best for us but my point is, she's been Stage IV many times and after 16+ years, she is still with us and fighting strong for as much time as she can have.
(((HUGS))) Laurajane. We support whatever avenue you take on this but I agree with everyone else, that Dr. is not God. Only God decides when we are called Home.
Juanita
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Laurajane, you said your doctor was going to contact someone in Indianapolis. If that is close enough for you to travel to Indy, I'm being treated in Indy at St. Vincent Hospital. My oncologist is Dr. Birhiray (beer hurray) with Hematology/Oncology of Indiana 1-317-415-6600. My surgeon is Dr. Schmidt at the Breast Care Center of Indiana 1-317-875-5461.
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Lj - If anyone suggests treatment in the Chicagoland area, I live in the southwest suburbs of Chicago and I have a spare bedroom you can have as long as you would need it. Just an offer. Free of charge. I work during the day so you would pretty much have the place to yourself. Keep it in mind if one of your options are in the Chicagoland area.
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Laurajane, I sent you a pm.
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laurajane - I am so sorry to hear about your diagnosis. But you are right, live life to the fullest, do all the things you want to do, no regrets:) Big hugs and my thoughts and prayers are with you and your family.
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MicheleS: I am impressed by all of your knowledge! I think LJ should get you working on her case!
Laurajane: You are in my thoughts and prayers today.
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laurajane - just a drop in to say I'm thinking of you. The ladies here have given you some wonderful advice and they are right...no doctor can put a time limit on things.
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(((Laurajane))) I have no words - these wonderful ladies have said it all. Just know we are in your corner.
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Laurajane - just wanted to pop in and let you know I'm thinking of you.
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I'm home from my bilateral, very sore, but preliminary results indicate NO lymph node involvement. They took 3 out, and they say the preliminary results are about 95% correct.
Laurajane: I woke up from surgery praying for you.. as odd as it sounds, you were on my mind immediately. You've been in my prayers constantly. Please don't give up. Have you tried calling the Cancer Treatment Centers of America? Your surgery is Tuesday, right? I will continue praying for you.
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cc4npg: I bet you are glad to be home after your surgery. Sounds like it went well. Hoping you heal quickly.
Monika: Looks like you and I will have surgery on the same day.
Laurajane: I hope your personal doc was able to get some information for you from the research center. It sounds like he really looks out for you.
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Question - I had a CT Scan before I had surgery and of course the mamogram when I found the lump. When do we normally have the next CT Scan. I would think since we are TN and our BC is aggressive we would have another CT scan between chemo and radiation? When has anyone else had a second CT scan or do they not do one unless they feel a lump or some other sign of a problem. Curious as to what is next and how they are going to keep an eye on this "aggressive" cancer. Can anyone tell me what their experience has been?
LJ - You are in my thoughts.
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Laurajane: so sorry and angry to hear what those doctors have told you!! My mom was told 3months and lives 20+ yrs!! Don't believe or give in to time length of what doctors say! I think sometimes it is mind over matter and you need to FIGHT!!! I agree gets more tests done before you decide anything! You are young and need to fight this with everything and miracles can happen! ((((HUGS))) Your daughter sounds like the best!
So I have noticed that almost everyone has the diagnosis of IDC - I have DCIS? What is the difference? I know I should know but my chemo brain is getting the better of me! Plus I was reading an article in HEALTH and there is a doctor who is fighting for the 50+ rule of getting mammos and she said in this article that those of us with DCIS shouldn't be considered having cancer! WTF?! Then why did I have a bi-lateral mas. and 6 months of chemo?!! Too confused right now?
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Dr.'s deal with science...they look at numbers and averages....While we are looking at LIFE and LIVING...no Dr. has the RIGHT to tell any of us how long we have to live....I too am a spiritual person and only God can take us and only God knows how much time I have left on this earth....I sorta see it this way though....it is not a matter of how much time I have to be here but it matters how I use the time I have here...Live on and Live Strong....Good luck LJ on this journey explore every option available and when life smakes you in the face smack it right back....Keep on fighting on you are in my thoughts and prayers...
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Laurajane: I am so sorry to hear what the doc said, but am of the same mind as others who have already posted. I realize one day at a time can be difficult considering the shock they've given you, but they truly can't put a timeline on your life. They are dealing with statistics. Scary ones, but still, they're stats. Sending love and concern your way.
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tatasista - well said!
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kad22- DCIS is Ductal Carcinoma in situ- it means the cancer does not have an invasive component (InvasiveDC), though some become invasive (science does not yet know which may become invasive and which will not).
The prognosis is usually much better for in situ, though it can progress. Some in the medical field feel it is more of a "pre" cancer than cancer itself. You probably had a bi-lateral because the DCIS was spread throughout your breasts, so it was safer to remove them than to risk missing a progression to IDC.
This is a really simplistic answer; it's late and I've had a long day but I figured I'd chime in since I was working online for my Naturalist course.
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LJ...can I say bull..well..crap? Your BS is indeed BS! They don't know anything unless you have had tests! Have you had any other symptoms besides that f'ing tumor and your nodes? Cough, back pain, bone pain, vision problems, headaches..haven't heard you say anything about those...alot of people have cancer in their nodes...and while it is an issue..it doesn't mean you are going to die tomorrow or even soon!
I love my breast surgeon..but..when it comes down to it..my ONCOLOGIST is the one that I listen too..he or she is the one that knows cancer and what to do it about it...
Please flip off your BS next time you see him..from me...
Love you sweetie..hang in there..and try to get some sleep..I know it won't be easy..drink alot of wine or something...but try.go out doing your landscaping thing and wear yourself out or can something...I just wish I could bring you into my house and hang out with you...sometimes I hate this cyberspace..when sometimes what we need is a little human contact.
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Hi all thank-you for all of your wonderful thoughts and prayers.
My Doc called me this evening and said he talked to everyone he could think of calling including the BCRC. The pain I am experiencing will only get worse if I don't have the surgery. He said that it is highly possible that in only a few weeks it could become unbearable. So I will have the surgery on Tuesday and wait until I come to the next road. The oncs at the BCRC said that because of my immediate resistance to Taxol that they did not have a guarantee on any kind of chemo available to me at this time. Cisplatinin would give me a remission but they could not say if it would be for a week , month or more. The quote was "A year or more would be challenging". I am so happy for all of you that had complete recovery from Taxol. As we all are I am praying for a cure for those of us that don't.
The best thing that happened to me tonight was that when I was in the restroom earlier I had a sudden profound thought and that was how can I feel this good right this minute physically and have such a short prognosis. I am going to love every minute I have feeling this good or at least try.
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