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worse news

crazylady
Posts: 544
Joined: Jun 2004

Hi everyone,
I will see my oncologist tomorrow, but spoke with him on the phone today.
Apparently I have 2 lesions in my lung. The second one did not show up on the pet scan, but showed up in the ct scan. He decided not to tell me about the second one because he thought it might not be cancer since it didn't show up in the pet scan. He didn't want to worry me until he knew for sure which left me totally unprepared for todays news. He told me that I would have to do chemo, that it is now incurable and that I have 2 years to he didn't know how long.
I will find out more details tomorrow. I know that statistics don't mean anything, but I expected to hear that I would have surgery and then do chemo. The whole conversation really threw me.
I am going to get a second opinion and also look into some alternative things to do in addition to chemo. I may even give juicing a try.
The weird thing is that I don't even feel sick. I feel better and have more energy and stamina than I have had since my original diagnosis.
I am so sick of cancer!!!!!!!!!!!!!!!
Jamie

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Jamie,

When I was reading your post, I couldn't help but think that, as Jana said in a previous post, this is just a turn in the road, not the end of it. It's really hard when you have your kids to think about; that is exactly how I felt--be brave for them. My kids were 2, 4, & 7 when I was diagnosed, stage 4, 4 yrs ago. I have a VERY hard time when docs begin to hand out expiration dates. Please remind him that you are not a dairy product, and that those dates should be reserved for them. Additionally, if he likes to hand out timelines, be sure to tell him you will pay his bill in 2 yrs until you don't know when. Maybe then the medical profession will learn a better way to deliver news. I understand they want to be truthful, and I am ALL for that, however, if a doctor is going to take the time to tell you what his prediction is, he should also provide you with a list of all those who have blown the odds right out of the water.

Anyway, roll up those sleeves and jump into the good fight. You have it in you. I remember saying exactly what you did, that I won't do surgery or chemo again in the event things came back...perfectly normal. E-mail scouty and 2bhealed through this site to get some diet suggestions. Those two women amaze me with their success.

Please keep us updated, we're all here for you!

Stacy

finner
Posts: 232
Joined: Jan 2005

jamie, I am so disappointed for you! i agree with Stacey that doc should have been more discreet. As you prabably know I have inoperable liver mets and nobody has ever talked in terms of time, even when I hint at it. All I can do is to send you good supersize positive thoughts and encourage you to try and disregard the 2 year bit because he doesn't know this for sure, and it will wreck your head if you don't.

Catch these good vibes I am sneding you.

Margo

joanneire
Posts: 75
Joined: Jun 2005

Hi Jamie

Am really sorry to hear your news but that doc is wrong!! no one can predict the future. They can only judge prognosis on what would have happened in the past. There are so many new drugs out there that as long as people are still breathing there's hope. All the old survival stats for stage 4 prognosis are hopelessly out of date. While it's important to be realistic, it's also vital to stay positive. My boyfriend is 26, and had mets to liver and possible lung lesion. I will not give up on him- in fact his last scan was clear and than amazed the onc more than us. Cancer is well on the way to being a chronic but treatable disease. While people may not be technically cured more and more people are living a long and full live while containing and treating the disease. Sorry for ranting on, but I really think that docs need to change the way they deal with patients!

All the best, Joanne

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Jamie!
Pay no attention to those words of your onc regarding the years you have left. He has no way of knowing. Believe you will be able to beat this! I've never asked, nor has my onc ever offered how lomg I have left (i'm stage 4, with numerous small lesions in the lung). My onc did say it was incurable (don't think he used that word, but that's definitely the impression i got), but to me that just means i will either be in treatment or will be monitoring it when i'm NED-not cured, but no evidence of disease. Take some time to take in this news, then take a deep breath and get reafy to fight!
Mary

Moesimo's picture
Moesimo
Posts: 1075
Joined: Jul 2003

Jamie,

Take a deep breath, again and again. I don't know where you live, but I would definitely get a second opinion at a major cancer center.

Keep us posted on your appt. tomorrow, and like the otheres have said, get ready to get in the fight again.

Maureen

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Jamie,

So sorry to hear the news dished out by your onc. I LOVE Stacy's advice! I would love to hear your onc's reply to that one!

Anyway, I truly hope you will make juicing your #1 option and allow your body to kick cancer hinder in the way it is wired to do. Cancer cells can be corrected if given the chance rather than obliterate ALL cells through chemo. It opens your body up to secondary cancers among a host of other problems.

Think about feeding your body at the cellular level through a vigorous dietary approach (plant based) and add on enzymes, anti-oxidants and mega greens and voila! If anything your "2" years will be incredibly healthy rather than your body being molested with chemo.

I highly recommend finding a Naturopathic Doctor who is well schooled in cancer healing nutrition.

Just think scouty.

peace, emily

taraHK
Posts: 1961
Joined: Aug 2003

Hi Jamie,

I am so sorry to hear that you received discouraging information. I guess I would encourage you to seek a second opinion.....

I have been greatly assisted by a good friend with ovarian cancer - Stage 4 - who suggests that some of us might look at our situation as a chronic condition....yes, we may have recurrences periodically (hopefully with long, healthy periods between!). But modern medicine progresses rapidly....We may have to have a lousy 4-6 months of treatment now and then....but that we can survive for many, many years. (And of course there are alternative approaches...).

I am thinking of you and sending prayers and best wishes your way.....

Tara

jana11
Posts: 708
Joined: May 2004

Jamie,

OK, cancer just sucks... but SO DOES YOUR DOCTOR!! What a jerk!! First of all, my entire right lung is affected because of where the lymph nodes are located and I have a small left lung met that lit up on PET. AND the docs at MD Anderson said I AM still a surgical candidate, they just wanted me to do chemo first to make sure it responded to chemo. I don't know if I want surgery and will get a second opinion at another major cancer center first BUT IT IS STILL AN OPTION!!

My friend, you need to get yourself to a major cancer center and talk to the big guys. Go to Houston, NY, or Boston. They all have big GI centers.

DO NOT LISTEN TO THAT NONSENSE!!! YOu still have conventional treatment options in addition to juicing your way to cure.

Take some deep cleansing breaths and gather your medical records and get yourself to another MD for more opinions.

Channel all your good energy and stamina to fighting the good fight.

I am so sorry you are dealing with all this, and for needing a new teammate!

You will remain with me... stay strong. Make a list of things that make you smile and start doing them. Live life to the fullest extent every single day.

jana

oneagleswings
Posts: 425
Joined: Jan 2005

Hi Jamie:
Please please do not listen to silly stats that the medical profession love to pontificate on...stage 1V colon cancer CAN be managed as a chronic disease (think diabetes) and you must, must believe that and stay positive- there are numerous new drugs coming onto market (did you read about the Phase 1/11 clinical trial for Trovax Vaxine (awesome results)...
From talking to my husband I know it is so very hard to remain optomistic and strong but know that we are all sending our positive thoughts your way...I remember many years ago a slogan with the cancer society was CAN-surmount...so take a deep deep breath and believe you can "surmount" this obstacle...one day at a time....
Bev

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

((((((Jamie)))))))
Your right, cancer does suck, but I loved Jana's remark that your doc does, too.
When I was in treatment, I went to hear an oncologist, Jerome Groopman, speak on his book "The Anatomy of Hope: How People Prevail in the Face of Illness". He strongly believes that an oncologist's first job is to instill a sense of fighting this beast together, not to prognosticate. Many docs use numbers as a way of keeping their distance, but you need an ally, not a statistician. I think your plan for a second opinion sounds great; if you stick with your first doc, I would let him know how devestating his manner of presenting this news was to you. My sister in law is LIVING with metastatic breast cancer for 5 years now, and went skiing in Utah this winter despite bone mets.
It's great that you feel well; time to do battle! As our own Andrea says, I may have cancer, but cancer doesn't have me. Her story is another positively inspirational one, and also includes mets. There are many other folks here who didn't comply with the statistics; keep us posted.
Sending many positive thoughts your way, Judy

PhillieG's picture
PhillieG
Posts: 4679
Joined: May 2005

Hi Jamie,
I too have some mets to the lungs (after having liver ones last year). I think it was very reckless of your Onc to say that to you. I go to Sloan Kettering in NYC and they would never say anything like that to me. They can't predict how long you will live. I have a CT scan tomorrow to see how the Erbitux/CPT11 is working. My thoughts are with you.
phil

taunya's picture
taunya
Posts: 392
Joined: Jul 2002

Hi Jamie,
I can't add anything new, but I want to second what everyone here has said. That Doctor is not good enough for you. Please take their advice and find a major cancer center and get a real cancer expert's opinion. Try anything, but don't give up. This is not the end of the story.
Love and Hugs,
Taunya

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