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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-22-08 02:44 PM
Original message
Hey guys - help me.
I've been going for CT scans, x-rays, bloodwork etc for a fracture of the pelvis. They found a lesion near the fracture and did a biopsy and this is what they said it is: perisymphyseal lytic lesion. Now the orthopedic dr. is refferring me to an oncologist. I go Nov.4.

I'm scared to death - this just came out of the blue. My husband is devastated and I don't know where to start or what to do. I'm 59 and haven't been very religeous and now I'm starting to wonder if this is punishment for things I've done in my life. I've always considered myself a good person. Not great, not perfect, but a decent person. Damn this is so hard. :cry:

We just moved to NC from NJ last year and don't know a lot of people. All my dr.'s are at Duke except for my primary care. So if this had to happen at least I'm near a pretty good hospital. But, I'm still a wreck.

I originally posted this in another thread but, then noticed the last post was in May 07.
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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-22-08 03:04 PM
Response to Original message
1. Of course you're upset!
Anything associated with the word "cancer" can be frightening. I googled lytic lesion and found some information that indicates that it is usually benign. Here's one source: http://www.squidoo.com/lyticbone

But whatever the outcome, please don't consider this punishment for anything you did or didn't do in your life. It just doesn't work that way. Bad things happen to good people and some bad people live forever with no disease.

I'm glad that you're getting excellent care and hope for the best possible outcome! :pals:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-22-08 03:21 PM
Response to Reply #1
2. Thanks, Longhorn
I've read some of your posts on other threads. I hope you're doing well.

Thanks for that link. You're right anytime the 'C' word is mentioned we freak.

Before the biopsy we all wanted to go with benign but, then the biopsy found malignancy so I guess we go from there.

The weirdest thing is trying to pretend everything is ok when your world is turned upside down. I feel so bad for my husband. He's trying to be strong but, I know him and he's a mess. His Mom died of breast cancer when he was 15 so he's been through that.

I feel better now that thru DU I feel like I have a lifeline here with fellow travelers. :hug:
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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-23-08 03:31 PM
Response to Reply #2
3. I didn't realize they had already determined a malignancy.
Most cancers are treatable -- I hope your's is, too! Even mine -- Stage IV uterine or cervical cancer -- has responded very well to treatment. Right now, I have the gift of time and as new treatments come along every day, time is what I need the most! :)

Let us know how you're doing! The best therapy of all is talking to other cancer survivors. :pals:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-27-08 11:53 AM
Response to Reply #3
8. DU saved my sanity over the stolen 2000
Edited on Mon Oct-27-08 12:04 PM by madmax
and now a Cancer group to learn from those who have been on this journey before me. Elad, EarlG, Skinner what a bunch of GREAT GUYS!! I love this forum and the people who make this place what it is - a sanctuary for the soul and food for the mind.

Yes, the biopsy showed the cyst located near the fracture in my pelves is malignant. Now they want to find the primary location. There is a cyst on my ovary but, the GYN said that is not malignant.

Bear with me if I'm a little incoherent - I'm a little stresed. Anyway, Duke called this a.m. and moved my PET scan and bloodwork to this Thursday. Then on the 4th I see the oncologist and get a mamogram.

Longhorn, I'm sorry about your cancer - you have given me hope and that's a BIG thing for me right now. I have felt so hopeless and confussed. Been doing the google thing and it's a bit depressing for a layperson. Don't know where these tests are going to lead but, regardless I feel more hopeful reading these posts from you, Forkboy and JohnnyLib2. :grouphug:

My son is coming to NC from NJ for 10 days. He's a cancer survior too. He had Non-Hodgkins Lymphoma and has been cancer free for almost 5 years.

Being told you have cancer sure puts a whole lotta s*it in perspective. Time wow... No matter what they tell me I'm going to keep a positive attitude and fight this thing.

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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-27-08 12:21 PM
Response to Reply #3
10. If I'm not being too personal
can I ask you when you where diagnosed and what type of treatment you're recieing. Did you have surgery?
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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-27-08 08:11 PM
Response to Reply #10
11. I was diagnosed on March 2 of this year.
I haven't had surgery since it had spread. I had radiation therapy (twelve total) in March and April followed by chemotherapy beginning in April. It was delayed while I got a second opinion at M.D. Anderson. I just finished my ninth round (three days every three weeks) and get new CT scans tomorrow. Previous scans have shown marked reduction in the tumors. Once they're gone, I can stop chemo. Surgery might still be in my future once the tumors are gone from my lungs.

I got a lot of support, information, and positive feedback by posting on DU. Many of those posts are saved to my journal.

One thing I learned about the information online -- most of the studies and statistics about cancer do not pertain to you! That's because most studies are conducted on people for whom conventional treatments are not working AND they were started a few years ago. The results are almost always much better after the initial treatment and new therapies are being developed all the time. My radiological oncologist told me that no one has cancer that is identical to mine because my cancer is made of my DNA. He also said that while my cancer may be incurable, that doesn't mean it is untreatable. He compared it to diabetes, which is also considered incurable. I later read an excellent article in the New York Times that pointed out that there is a whole new attitude about managing cancer, sometimes for many years. Apparently, Elizabeth Edwards' doctor made the same comparison between cancer and diabetes.

Forkboy is right that the toughest time for me so far was in the beginning. Even then, I continued to teach, missing very few classes, because teaching helped keep my mind off of it. I also took some sleeping pills prescribed by my doctor for the first few weeks so that I wouldn't lay awake worrying. I haven't taken them in months. It's hard to believe but I have become used to having this diagnosis and going through the treatment. It's just a part of my life right now but fortunately, it doesn't dominate my life. I told my husband this weekend on our little getaway to Niagara Falls that I just don't believe that this is going to kill me. It just doesn't seem real in that regard. It's how I choose to live my life right now, believing that I will overcome this. I don't know my future but I wouldn't want to live my life believing anything else.

I hope you have nothing but good news from now on! :hug:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Oct-28-08 10:57 AM
Response to Reply #11
12. Your post is so inspirational - you lifted me up
:hug: Thanks for passing on your strength and hope. I've been thinking of Elizabeth and wondering what type of cancer is treatable but not cureable. I understand better now that you explained it and that helps me work on my attitude.

I'm taking Tramdol for the pain in my back and leg and it's made me feel ill the past few days. Thanks for sharing and I Hope you guys hang in here with me even if I don't answer right away.



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Upfront Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-25-09 05:04 PM
Response to Reply #12
33. Gall Bladder Cancer Treatable but no cure. It is Bull Shit
My gb Cancer is treatable but not curable, at least that is what I was told. Also told the best I could ever hope for would be remission. Eight month's later I have no sign of cancer in my body after pet/ct-scan. This was after heavy chemo for a long time. I like you felt shock at first and not much hope. However I met a lady on line who had my exact kind of rare cancer and was clean and one year later still is. She has held my hand and lead me through this all the way. Make up your mind that cancer won't beat you and you can win. I think it is a big part of winning your fight. I am starting radiation to hit area's where my cancer was after the 1st of the year. My goal is cure screw remission. I was not a religious person either but had much help from friends who were. I even went to a church and thanked them for putting me on there prayer list. I was getting lots of calls so I decided to send out an e-mail to all the folks who were calling. In it I told them exactly what was going on. It kept them informed and they were and are able to help me fight. I now pray every night. Something happened here and I don't discount prayer, good doctors, a evil spirit dance that was performed for me by an Indian chief. Who knows, but I am greatfull. My advice is leave no stone unturned, and fight like hell. You can do it. Just so you know, you mention going to Duke , great place. How do I know that, my angel said so and she went there. They can do it at Duke, believe!!!! I know you will win this fight, just believe!
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Forkboy Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Oct-25-08 04:34 PM
Response to Original message
4. You're in the worst part of the ordeal in many ways.
Edited on Sat Oct-25-08 04:35 PM by Forkboy
Right now you just know there's something wrong, and the uncertainty is what plays on the mind so bad. You do start to wonder about all kinds of things, like what might have caused it, etc.

My attitude was that it had to happen to somebody, and better me than some poor kid (I can't handle seeing kids go through this...it reduces me to a blubbering wreck every time). I'm not religious, so that angle never even popped into my head. I didn't see this as a punishment. It just is. Remember, religious people get cancer, too. You shouldn't blame yourself for this happening.

Once you see an oncologist you'll have some actual information to process, so it's not just your brain running through every imaginary angle, and then some. You'll have some concrete info to take in, and knowledge helps you get a handle on the fear. It's still a scary thing, but the knowledge makes it a lot easier to deal with.

Be sure to take your husband in the office with you. I don't bring anyone with me, and I find it hard to remember everything the doc says (it doesn't help that my endocrinologist is a stunning beauty). I wish I had an extra set of ears to help with that, because it can be hard to absorb all the stuff they'll tell you. So let him come with you (I'm assuming he'd want to anyways). It'll help him a lot, too.

Good luck, and keep us posted.

:pals:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-26-08 02:37 PM
Response to Reply #4
5. Thank you so much Forkboy
Your kind words and insight are appreciated. These next 9 days are going to be hell. Not only for me (my appt. is Nov.4) but, for the election. I voted early and on that same day I was given my appt. Couldn't resist an "I told you so" to my husband that I wanted to vote early because shit happens.

As far as my DH and best friend he's been great and he comes with me to all the appts. He a great guy.

Why don't you take a tape recorder with you to tape instructions or information from your dr. I'm sure she'd understand. It is hard to assimilate all this stuff when your mind is racing around.

Sending you best wishes and good vibes. :hug:

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Forkboy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-27-08 04:14 AM
Response to Reply #5
7. You know, I never even thought about taking a recorder with me.
I got one, too. DOH!

What a great idea!!!! Thanks!!!

I'm glad you voted early. This damn election is hell on the nerves, and adding an appointment on the same day as the election would make me a wreck.

Hopefully we'll have many things to celebrate on the 4th. :)

:hug:
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JohnnyLib2 Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Oct-26-08 07:52 PM
Response to Original message
6. Slow to respond, but--
if you haven't, take a look at American Cancer Association's website:
www.cancer.org/docroot/home/index.asp

They can send up-to-date info on darn near anything having to do with cancer, especially articles on specific kinds and specific treatments.

We linked up years ago (23!) when my wife had breast cancer and have requested material for many others since then.

Also, sometimes it helps to focus HARD on work or plans or (ahem) election news and put off the frettin' and stewin' until..... say, 6 p.m. or tomorrow or Thursday between 1 and 2 p.m. You get the picture!

Hope you can get some support in warding off the awful questions that come to mind in the night. Bad cells happen -- to anyone.

All best wishes.


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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Oct-27-08 12:00 PM
Response to Reply #6
9. Hi Johnny
Thank you for the info I'm collecting a folder of resources. Focusing is hard now... you've got that right!

Here's one for you. I found this http://www.blochcancer.org /

the fact that he survived 26 years after his diagnosis and being told to get his affairs in order - offers hope. And we Obama kids, we got HOPE.


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LeighAnn Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-29-08 01:20 AM
Response to Reply #9
13. That guy is from my hometown
He's a real American hero. I'll bet it would be hard to count the lives that Richard Bloch has saved.

Wishing you peaceful and happy thoughts, and praying for your speedy recovery!

~*Peace*~
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latebloomer Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Nov-25-08 07:25 PM
Response to Original message
14. You are NOT being punished!
Edited on Tue Nov-25-08 07:26 PM by latebloomer
If life was like that, Dick Cheney would be dead now. :D

I was dx'ed with acute leukemia 18 mos ago, and was told if I didn't go into intensive treatment I'd be dead in 2 months. I went with the program (duh! I have a great husband and 2 wonderful teenagers!), finally got a stem-cell transplant last Dec, and all tests have shown me to be cancer-free.

It is a tough battle but you pull up reserves of strength you never knew you had. Fight,pray, visualize perfect health, eat well, rest, talk to friends if you want to and don't when you don't. Take the best possible care of YOU. I always tell people to cry, rage and rant when needed. I think I tried too hard to be positive and then, after the transplant, I went into a depression from all the built-up, unexpressed feelings.

It sucks royally, but you can beat it!
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-08-08 06:23 AM
Response to Reply #14
16. Thanks love
Edited on Mon Dec-08-08 06:24 AM by madmax
This whole thing has been one insane ride. I don't have a diagnosis yet and have had EVERY SINGLE TEST done... I'm really having a difficult time mentally. I haven't checked this thread in a bit so I just want to let you guys know that I do need you and think that 12/12 Friday I'm going to get something concrete. I'm going to fight but, i'm fighting a ghost now. Once I can name this sucker I'm gonna kill it.

This freakin cancer thing I have must be the size of a gnats ass.....yet what they did find is a small sarcoma near in my groin near the pubic bone. Maybe it's a freakin ingrown hair ...ya think!!!!!!!!!!! :grr: :banghead:
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noiretextatique Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Dec-04-08 06:22 PM
Response to Original message
15. hi madmax
how are things going now? forkboy is right...the waiting is the absolute worst part. last year at this time, i was waiting...and waiting...and waiting. it was sheer hell. once i found out the stage, etc of my breast cancer, i was better able to deal with it.
i don't know if there is anything anyone can say to comfort you, because i know nothing comforted me. but, just know you won't always feel as afraid, and you are strong enough to face and conquer whatever it is. :hug: you are not being punished...you have a dis-ease :hug:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-08-08 11:54 PM
Response to Reply #15
19. Hey noirethblu!
I'm still hanging in there :hug: I added a post below. Please feel free to kick my ass. :evilgrin:

Thank you so much for the hugs. I never really thought I was being punished - I never expected anything like this and I also don't wonder why me. I just repeated what is oft heard in a movie in these situations. I guess in my mind I need to have a reaction and I borrowed what I've heard said. My first reaction and thought was, "Oh, BULLSHIT" There's a mistake - now I've got to waste time with tests and appt's. I have things to DO!! And as more and more tests were done and nothing is being resolved and I'm told I'm gonna die in 3 years - I'm just having a total meltdown.

I use to smoke - If they said you have a verrrrry small spot on your lung. It's lung cancer and was hard to find but we found it. I could understand that!! I DID smoke! But, this is some freakin invisible cancer. No one in my family has ever had cancer, I never gave it a thought. Heart attack, stroke but, not cancer. I had no idea what to expect regarding anything about this shit.

It's irrelevant. It is what it is. My post below explains my frustration with the whole mess.
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Tracer Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-08-08 07:40 AM
Response to Original message
17. I'm truly convinced that ...
... people's emotions and thoughts when given a diagnosis of cancer, follow very closely Kubler-Ross's stages:

(from Wikipedia)

---------------


1. Denial:
* Example - "I feel fine."; "This can't be happening, not to me!"
2. Anger:
* Example - "Why me? It's not fair!" "NO! NO! How can this happen!"
3. Bargaining:
* Example - "Just let me live to see my children graduate."; "I'll do anything, can't you stretch it out? A few more years."
4. Depression:
* Example - "I'm so sad, why bother with anything?"; "I'm going to die . . . What's the point?"
5. Acceptance:
* Example - "It's going to be OK."; "I can't fight it, I may as well prepare for it."

---------------

The only difference is that these days, cancer is not necessarily a death sentence! The various treatments that are available, although they can be rough --- are quite effective in many cases.

Waiting for test results is a strain, but once you know for sure what it wrong, you will definitely be able to cope better and your focus will be on your treatment --- and the future!
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Dec-08-08 03:32 PM
Response to Reply #17
18. Thank you for the great post
Edited on Mon Dec-08-08 03:35 PM by madmax
The problem is I've had all the tests!! CT Scans with and without contrast, Gallons of blood, x-rays, PET SCAN with contrast, mammogram, breast sonogram, internal vaginal sonogram, CA125, Pap Smear, Endoscopy, Colonoscopy, bone scan, bone density, biopsy... nothing absolutely NADA shows up except from the small biopsy of the lesion in my groin.

They say the cells are adeenosarcoma sp?... but.... and here's the THING .. I've got 3 - 3.5 years left of my life. HOW?!?!?! NO diagnosis...No identifiable organ involved. This is from DUKE - if I were in some mid city general hospital I would have said, ok... being originally from NJ I would have said ok, I'll try Mount Sinai, or Sloan Kettering in NY.. what do you say to DUKE. Uh, ok. I'll think I'll fly down to Tijuana General and see what THEY say??? My guts were left on this med/onc's floor. I haven't even started the game and I'm benched. I hear screaming... 'dead woman walking here' I want to fight. I can kick ass with the best. From thinking I have a strained a muscle or something lifting boxes and stuff around here - we just moved into a little townhouse. I had the biopsy 10/17 and on 11/04 I met the hemo/onc. In THREE WEEKS I've gotten a death sentence. And no damn GAME TIME. I can't wrap my damn brain around that.

I've been drafted into a club no one wants to join. I've not been assigned a uniform, or a position to play, or the name of my opponent, I'm unarmed against a phantom.

Join a support group???? I can't I'm not pigeon holed anywhere yet. I need an ORGAN or a # All the support groups I've found you have to be either, breast, colon, pancreatic, gastro..something. I'm a cipher!

My dear friends. THIS is the only place I find real answers, real, people, laughter, joy and tears. Not just here: Cancer Support. All of DU the politics, the lounge, the craziness, in fighting, thought provoking, maddening everything. I LOVE DU. Throughout the hell of the last 8 years. DU is always the best place for me to find a center. To affirm that I'm not insane.

My love to you all and I assure you I am going to pull myself up the the hairs of my ass if necessary and I'm going to start kicking and stomping someone or something right quick.

On Friday I have an appt. with the biggest, baddest dog at DUKE in charge of GYN type cancer. He's worked with Boxer and Dole on the Ovarian Cancer Detection bill.. blah blah

BERCHUCK MD,ANDREW SURGICAL ONCOLOGY
Location Duke Clinic Durham, North Carolina 27710
http://www.dukehealth.org/physicians/AD70B4522529481185...
http://www.dukehealth.org/HealthLibrary/HealthArticles/...
http://www.cancer.duke.edu/modules/firsthand47/index.ph...

If I get the bum rush and shuffle this time. Then I'm going to sign off on what the surgeon said while doing the biopsy. 'We can remove this surgically and inject some bone marrow to promote the healing of the small fracture in the pubic bone'. OK, I take it and now let me live in peace for whatever time there is left. I want to LIVE IT - it's not always about the quantity but the quality and right now even though my body feels great, my soul, my head and my heart in great pain. It's hard to function. What's the point? I want to do the things I know I can do or should I just sit around and wait for 'something' to start hurting or my energy to leave, or whatever the fuck it is I'm suppose to be waiting for???

And yes, I've find cursing like a Marine to be very liberating. :evilgrin:

So sorry to vent my spleen on you guys but, I know it's safe here to just vomit it all out. I'm careful not to splash your shoes, right? :grouphug:
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Tracer Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-09-08 08:02 AM
Response to Reply #18
20. Ah. I wasn't aware that you had all those tests.
I am mindboggled that you were told a specific survival time-frame. The utter nerve of some doctor deciding to "play God" is infuriating.

Contrast that with what my oncologist said to me:

During a visit, I mentioned that I'd stopped reading about ovarian cancer on the web after I had come across a physician's article that began --- "Recurrent ovarian cancer is invariably fatal."

This is precisely what I wanted to know, but no one had ever said it to me -- and I understand why they wouldn't: Dread of my reaction (doctors are human), loss of hope, the possibility of a cure, distress at not being able to cure cancer (this really bothers them).

Anyway, after I quoted the article's sentence, my doc was silent for a minute and then said, "Yes, it is. But we don't know when. And we do absolutely everything we can to keep that day away."

Surprisingly, it was comforting to hear that.

BTW, I'm 4 1/2 years out from the first time I went to an oncologist -- and I feel perfectly fine!
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-09-08 05:08 PM
Response to Reply #20
23. Tracer, Longhorn,
Tracer, so happy to hear you're feeling good that gives me strength and hope. I know exactly what you're saying. I didn't really want to know a damn time line. Shit, he ripped out my heart my hope. If it's 3 years ok, but, shit I'd like to enjoy them and not be purging myself from the life I shared for 26 years to my best friend. I'm going to dance, laugh, eat Paula Deen's Instant Heart Attack food. Damnit, I may even walk along the beach at the Outer Banks buck ass nekkid!!! I can ya know - if I want to.

I have Barack's HOPE button and wear it all the time - it's my talisman. Barack Obama is HOPE!!
Longhorn, you were my first. The first reply to my cry for help. I love you girl. :hug:
I admire you're guts lady! We're going to keep on and on and on...

noiretblu, thanks for the links. Since I'm without an official 'support group' I've adopted you guys and collect anything you post. I need to work on my own behalf, with a little help from friends. :hug:

Sorry to take the easy way out and do a group answer but, I'm mentally fried. Aren't we all.

I saw my GP today for the second time in my life. As I was going into her office for my first visit my husbands cell rings and it's the biopsy results of a malignant lesion. Suffice that first visit went no where. I was dumbfounded. But, despite that nothing visit the hubby has called for sleeping pills (that didn't work) etc. so she wanted to see me and we got together today. I copied ALL my files. Paperwork, test results, dr's names - addy, phone, specialty, dates, etc. Plus provided her with access to my duke medical results which I have access via the internet. Now she can access and read my results without having to kiss any butt at DUKE. I'm good with that. Plus she'll be reading exactly what I'm reading and know if I'm misunderstanding anything. Who me? lol

She also suggested a second opinion and will make contacts and told me what to ask the GYN/Cancer Dr. on Friday. She asked if I would be willing to travel to another Cancer Center. YES!! She asked if would be ok with me for her to make some inquiries regarding any questions she may have about my test results with some her colleagues etc. GO FOR IT DOC!! I'd climbed Mt. Everest and scream for help at the top of my lungs. Why would anyone want to keep having cancer a secret!

I asked for and got an Rx for Lexapro and valium for sleep. The valium for a week until the Lexapro kicks in. I NEED TO GET MY HEAD OUT OF MY ASS. And my shit together. I need to sit down with all my results..make notes. List questions I have to ask the GYNO/SURGEON .. I don't even have a freakin clue because I'm going in blind but, I'll think of something... if I can think where he may be coming from I'll be able to anticipate or at least take a stab at asking questions. But, I need to get some sleep, be calm and do the best I can at this appt. The GP said, ask him what are the pro's and cons' of putting off any surgery and radiation therapy for about 2 weeks until I could get to another Cancer Center for a second opinion. Check - will do.

Hopefully tomorrow I'll sit down and see what I can pull out of my brain.

I'm grateful to you all for sharing your strength, hope and love.
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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-09-08 07:23 PM
Response to Reply #23
24. Your GP sounds wonderful!
I already feel better for you knowing she's on your side to help you through this. I'm glad she's helping you with sleep medications, too. I would have gone crazy those first few weeks if I hadn't had something to help. I haven't had to take them for months, once I got on the treatment path.

I think this is the beginning of your recovery! Hang in there, Hon! :hug:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Dec-11-08 12:12 AM
Response to Reply #20
26. .
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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-09-08 02:20 PM
Response to Reply #18
21. I, too, am shocked that you would be given a prognosis of remaining time.
First, you don't even have a diagnosis! How in the hell can they make sure a declaration? Second, no one knows how much time any of us has left. Like tracer, I came across some dire statistics but that data is always a few years old and doesn't pertain to me. I've never asked how much time I have left because I don't want to be limited at all in my mind. If I get close enough that the end is inevitable, I'll still have time to take care of business. But my job right now is to do the best I can to beat this and I won't be handicapped by someone's most likely inaccurate prediction.

You most definitely should get another opinion, regardless of what the Duke big whig says! I'm going to Cancer Treatment Center of America next month for a third opinion and my second opinion is from M.D. Anderson. No one person has all the answers and there has already been some disagreement on my diagnosis between the first two opinions so I'd like to get a third. Plus, CTCA will treat all of me, not just my cancer, so that I feel better and remain strong enough to help fight the cancer.

I can't imagine how frustrated you are right now and it really pisses me off that you're having to go through this on top of everything else. :hug:
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noiretextatique Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Dec-09-08 03:39 PM
Response to Reply #18
22. resources that might help
Edited on Tue Dec-09-08 03:39 PM by noiretblu
this is a rare cancer forum
http://survivor-support.rare-cancer.org/forum/groupcp.p...

the national cancer institute has lots of good information
http://www.cancer.gov /

i live in oakland, ca and there's a place here called the women's cancer resource center. once you have a better idea of what's going on, i can do some research there.

hang in there...we're here for you :hug:
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Dec-11-08 12:12 AM
Response to Reply #22
27. .
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anneboleyn Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Aug-27-09 08:04 PM
Response to Reply #18
32. How did your visit with the new doctor work out?
We have to travel for my treatment and it is very difficult but it is worth it knowing that my doctor is one of the best.

Sometimes the doctors do give time frames and some do this in a better manner than others -- I was given one in the kindest way possible whereas my husband's father, who died of colon cancer, was told that he had 6-9 months when the doctor wrote it on a board in his hospital room. I didn't realize that you tried support groups but couldn't find one that was appropriate. I am surprised there are no general cancer support groups. But there is a lot of support at DU!
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madmax Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Dec-10-08 11:32 PM
Response to Original message
25. Why!!!
Why did that sonofabitch tell me 3 years. I'm spending my thoughts and time on cleaning out my life. All I htink about is the end.. I can't stop eating. I EAT ALL DAY LONG!!

I did get some paperwork done and my GP consulted w/a Dr. Sarah Thayer from DanaFarber/Harvard Cancer Center and suggested 2 more tests Duke hasn't done. The GP is also going to call Duke Pathology and ask them to do some more testing on the biopsy. BUT BUT .. I was awake during the guided needle biopsy and they weren't even sure that had enough material .. so they took it to the lab and said it was very small just some fluid and cells. She wants them to do something more and I doubt they have enuf. Oh wtf do I know.... and shit does it really matter now. It's stage IV.



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Longhorn Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Jan-09-09 09:14 PM
Response to Original message
28. What's going on, madmax?
Edited on Fri Jan-09-09 09:14 PM by Longhorn
Have you been able to get a definitive diagnosis from a doctor you trust? I'm thinking about you! :hug:
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Tab Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-10-09 06:16 PM
Response to Original message
29. Oh, if I was being punished for not being religious

I would have been dead or maimed long ago.

I was diagnosed at age 46. This stuff happens. I am going through colon cancer. If you want to talk, PM me and I'll send you my number, but in the meantime, I'll keep you in my thoughts.

It's curious how this stuff evolves. Did I eat too many charred hot dogs growing up, or too many bright red/orange/yellow food thingies? I have no idea. So many things we ingest in our life (or are exposed to) are cancerous, it's hard to say. With a rare few exceptions (e.g.: smoking = lung cancer), you'll never really know. Be healthy, or get healthy from this point on.

I wish you the bext, and DU is as good a place as any to call for support.

- Tab
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gleaner Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jul-13-09 09:27 PM
Response to Original message
30. You're not being punished.......
Illness is not a punishment from God. I believe it is something that happens to many of us by chance and misfortune. If illness were linked to spirituality or evil think of what some of the really bad people who walk this earth would have. Most of them are healthy as can be.

My husband's mother has cancer which is how I came to read these threads. She has Atypical Carcinoid now at stage 4. She is kind, gentle, warm and good. She believes in a higher power. She says that if you think of a loving god in the same way that you would think of a parent, you can see that no parent would cause a child harm to punish or teach a lesson. She doesn't know why she got cancer, but she says what she can do is live through the rest of her life with as much grace and serenity as she can muster. She is determined to fight back with all the strength she has.

Of course you're scared. It is the response of a sane person. You are fighting a formidable enemy, but at least you have some powerful allies. Duke is a top notch facility and what you are going to do will come to you and your husband when you begin to deal with the cancer. In the meantime, take all the good wishes I have and a big cyber hug with wishes for your recovery and peace of mind.
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anneboleyn Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Aug-27-09 07:50 PM
Response to Original message
31. Cancer is NOT a punishment! Children die every day from leukemia and other cancers.
Edited on Thu Aug-27-09 08:06 PM by anneboleyn
There is no way that cancer is a punishment for "sins"! Please don't believe that for a moment. Cancer happens to millions of people -- advocates for the poor, priests, nuns (in fact I knew two nuns who died of breast cancer), and entirely innocent young children, including babies. In my experience (I am not talking about myself and my own cancer -- I was diagnosed at 36 with a very, very rare cancer -- but others that we have known) many of the BEST people suffer from cancer, not the worst.

You have access to a superb hospital with one of the best cancer treatment centers in the world. Take comfort in that fact. And there are many fantastic, advanced treatments available out there now. You will find a lot of support here -- many of us had a diagnosis out of the blue and it shattered our lives. I had a diagnosis that changed my life when I was 36 and I had to give up being a university professor after I had worked incredibly hard to earn my Ph.D. and it was devastating.
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