Calling all TNs

Luah

Retrievermom:  So nice to hear you got to spend time with your DS on campus.  I know how special that can be!  I also have a 21 yo DS; his campus is only about an  hour away, so occasionally I pop up there and take him out to lunch. My younger DS is 18 and will be off to Whistler next week to ski and work for the season.  He'll be a little farther away!      At least we have the (Cdn) Thanksgiving weekend together - so looking forward to having all the family together, even all my in-laws!

Lynn18

Swanny:  How nice to take a nap.  I have had company and havn't been able to take naps, but they are wonderful,

Heidi: Good to hear how you are involved with the Coalition. I know you will be a great peer mentor.

Interesting to hear how everyone has thicker hair after chemo.  I have never had thick hair but I would love to.  It is great to have just a little hair coming in.

Laurajane:  I had apple pie for breakfast, yum...

LRM216

Wish I got thicker hair back after chemo!  I have always had fine, limp and straight hair that liked to do nothing - and that's exactly what I got back after chemo.  Not one curl - not even a wave.  Same ole, same ole.  Oh well, at least I got it back - better stop complaining.

Sugar77

Luah - I hope you have a nice Thanksgiving with all your family.  We're supposed to have terrific weather this weekend. 

My hair is about the same thickness as before chemo but it's now curly. That's the only difference for me.

kad22

Haven't been on here for quite some time - 4 pgs to catch up on!!

Laurajane - sorry to hear about your setback and glad to hear surgery is scheduled for this coming week! Prayers and warms thoughts are sent your way!

Hello to everyone that is new to this thread - hate that so many of us have to go through this - it's just not fair!

Luah & Sugar77 & anyone from Canada - Happy Thanksgiving this weekend - enjoy!!

((HUGS))

laurajane

Well my surgeon said without sugery I might have 5 months, with surgery and chemo maybe 1 yr 2 if I'm lucky. This really sucks.

laurajane

I guess with the lymph invasion. I am hoping to get an MRI before I opt for surgery if it has spread as aggressively as they think I will live the next couple of months to it's fullest. and skip the chemo and surgery. I am also requesting the blood test. I wish to god they would have done all of this last May. I am in a state of absolute shock. Small town doctors. Hard to believe I am dating am unbelievably wealthy man for 4 years that cares more about remodeling his condo in Utah than to be with me when I get this news. LOL. What can I say to my son and daughter. Last night I came home after a fabulous dinner with my wanna be boyfriend. Wow! He went soft after my wig fell off. I came in crying about that and everything else and my daughter proceeded to explain to me how hair doesn't mean anything and she cut all of her waist length hair off right in front of me and had it shaved today. She is so strong. She is really right. Who cares about hair anyway. I think I want to live life to its fullest and not waste time recovering from surgery and living the last year of my life on chemo. I want to carve stone and create beautiful paintings and landscapes and love my kids and run with my grandson.

LRM216

Laurajane:

You DO NOT have an expiration date written on you - any place!  Please do not lose hope, there is always something to try after the surgery - and that can prove successful.  I am just so sick to my stomach that you have to go through all this again.  I hate this disease and what we have to endure.  We are here for you - each step of this new journey. 

Linda

MonikaV

Hi Titan, I am doing well . Getting ready for my bilateral MX October25th. I finally found doctors that I feel comfortable with .  Hoping everything will go smothly.

MonikaV

Laurajane: Please do not be discouraged!!!!! I agree with LRM216 . We do not have an expiration date. God is in control of our life and through him all things are possible. Trust. I will keep lifting you up in prayer ,if that is okay with you.

Luah

Laurajane: I am so very sorry you got such devastating news from your surgeon. But I agree with the others. Don't give up. What does your oncologist say? Can you consider another opinion? Is there a trial you can join?  What about the PARPs?  I can only imagine in my darkest moments how overwhelming this must be for you. Your daughter sounds like an absolute gem!  I hope you can draw comfort from your family, and put a plan in place.  (((((((HUGS))))))))

Lynn18

Laurajane:  WTF I don't see how a doctor can tell you how much "time" you have left.  Even if a person is stage 4, doctors cannot predict what will happen with them.  Lots of people have had lymph invasion.  Also, if you havn't had a MRI or scan how do they know what is going on? 

Please consider getting a second and third opinion before you make any decisions.  Maybe it would be better to go out of town for a second opinion.  Please don't give up!

Anonymous

laurajane- My God, I don't know what to say. I am sick reading your last two posts. I can not imagine what you are feeling right now (or maybe, I can imagine too well, since it is all our greatest nightmare).

I hope, with a bit more time to think, you will regain some of your balance, perspective and sense of hope. The others are right; you are not a statistic. This website bears evidence of many women who have gone on to beat the odds, despite dim and terrifying prognosis. I do wonder about what you have been told in the absence of corroboration (MRI, etc.) I don't understand this.

Try to hold on to positive thought, laurajane, and find comfort in it if you can. Your daughter is amazing. I wish you peace, hope and comfort in this troubled time.

love, Heidi

Claire82

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!

Anonymous

Thank you Claire! for providing immediate feedback on the folly of "expiration" dates.

laurajane- take heart!

Swanny

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?

jenn3

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)))

Teka

laurajane,

Try to keep your mind off boyfriend.   Focus on family and BC treatment.   You were going to have surgery and chemo from the get go.   Some doctors are blunt.   You could live for years.

Anonymous

A little landscape humor for lj:

 

Anonymous

Good morning lj,

 

Anonymous

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!

Luah

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.)

laurajane

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. 

MicheleS

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

Jwatrlily

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

riley702

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.

Swanny

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.

riley702

Laurajane, I sent you a pm.

JenC

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.

Lynn18

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.