Need Some Advise

dorookie

Hello all,

I have a couple of questions that I need advise on and I knew I needed to come here because of all the great people here and all the combined experiences;

1. What are others thoughts on getting a second opinion? I was DX with stage 3c in July of 07, did surgery, chemo and radiation, cancer free June of 08. November of 08, DX with stage 4 with mets to right lung. I am scheduled for surgery next week (from talking with my surgeon the surgery is going to very extensive)and then I will start 6 months of chemo (not sure what drugs this time my ONC is working on that will see him again on Dec 12). I have had complete faith in my ONC from day one. I know I can trust him and during my last two visits he ended our time together by giving me and my partner a hug. I just wonder should I get a second opinion? If so how would I do that, what should I look for and most importantly do I really need a second opinion?


2. I have been doing a lot of reading as we all do when we find that we have cancer. A lot of what I read states that stage 4 is much like a death sentence. It scares me to say the least, but then I think of all the stage 4 people on this board alone that have survived and go on to live a normal life. I guess I am confused somewhat. I know I need to have a positive attitude and faith that this is all going to work out. What are some of your thoughts on this subject?

3. One last thing, I know its not good to think bad thoughts or to think about the cancer coming back. However, it has come back for me in what I consider a very short time. My thoughts are is this going to continue to happen? Go through hell to get better for only a few months? How many times can this happen? How many times can I really go through this? When do you say enough is enough, or do you say that? When do you weigh quality of life verses quanity of life? I know most will say its to early for me to be thinking like this, but am I the only one? Again your thoughts and comments will be greatly apprecaited!

In no way am I even thinking about giving up, I am just tossing out there some thoughts that have gone through my head and need some feedback on.

Thanks in advance for all those who respond.
God Bless
Beth

Buzzard

Advice
OK, first of all stay off the internet and quit reading all the stuff you find out there, it will scare you to death. It is normally way behind in fact and cancer treatments get better everyday. I too thought that the "C" word was a death sentence after reading everything I could about it. Come to find out I found this website and actually found people just like me with the same disease that could tell me things I wanted to hear.
As with the 2nd opinion, it is your health, why not ask your surgeon and onc about it, what they think about your prognosis and if they will refer you to someone for another opinion. Any surgeon with any salt will do this for you if they are any type of caring individual. Yes, if I wanted a second opinion I would get one, I did and I am very glad I did, it turned out that I had a Dr that maybe did one of these types of surgeries a year and went to a Dr that did 10-20 a month. There is your difference in care.
Thirdly, about giving up........Im kinda like that frog thats halfway down the birds throat with a death grip around the birds throat and saying "Never Give Up", Why would you if you have someone that loves you not fight for your life ? If you were terminal in which you are not then maybe you might have a reason but treatment options are getting better everyday and that thought alone , the chance of a complete cure is what keeps everyone going. I always think of my sister that passed away when she was 6 years old with polio, the vaccination for polio came out the same year that she passed away, i was born 8 months later, I never knew her but just the same "if" it had been a year earlier I might have known her other than about her. So you see there is always hope and even a day that you feel bad is another day spent with loved ones. But, its not a choice for me to make for you, its only the way that Im looking at it...
The will to live becomes a survival instinct when your mind wants to give up but your body won't allow it. Your not going anywhere, why? because of everything you and your partner has already gone through why quit now?
God Bless ya hun you and your caregiver..........

msccolon

don't give up
I echo what Buzzard said. I also thought that it was just going to be a slippery slope downhill when mine returned after a year post-chemo. However, my mother died of lung cancer while i was recovering from that second surgery and I saw how that affected my family. It was awful! I realized that this was no longer a personal fight; it affects EVERYONE that loves me! I owed it to myself, but mostly to them, to do EVERYTHING I could to overcome! It hasn't been pleasant, and my caringbridge site will attest to the fact that some of those days were downright crappy! But I am still here, I have toasted at my daughter's wedding, I witnessed the birth of my first grandchild and am looking forward to MANY more milestones to come! I am currently awaiting results from a multi-phase scan of my liver to see if a suspicious spot on my liver is anything to be concerned about, but you know what? I AM NOT CONCERNED! No matter if it turns out to be cancer, I will do whatever's necessary! More likely it's fatty deposits, as I have put on a large amount of weight since my last recurrence! So what! Again, I am here and my loved ones love being able to call me up and to visit with me when possible! My girls are still able to call when they are having a bad day (as well as when they are having a good day!) and I am thankful that they WANT to call! I have begun addressing some issues from chemo, such as osteoarthritis, and I am feeling great! Thanksgiving and Christmas are almost upon us and I am SO excited! Take the time to grieve the loss of the hope that the initial fight would be all you needed to do. I know, it's a mourning process. But then, once you are done, pick yourself up, dust yourself off and put the gloves on. Take the recurrence as a dare and show it who's really boss! You are strong and will be around for a long time. Keep us posted.
mary

CherylHutch

Questions
Beth,

Let me also chime in here... the questions you are asking are very normal questions and thoughts, considering what you are going through in your life right now. I would be shocked if anyone, bet them a Stage 1, 2, 3 or 4 didn't have the same thoughts going through their head... in particular, anyone who has been diagnosed at a Stage 4 DX. If you talk to oncologists/doctors, be them your own or any others... and give them a hypothetical, "When someone is diagnosed as a Stage 4 cancer, do YOU believe there is a good chance they could be cured?"... I bet you get pretty much the same response from all of them... a shake of the head and a "Stage 4 is incurable" or "Stage 4 is terminal" (if they are older and still of the old school of thought). This does NOT mean they are not good doctors or that they are lacking in knowledge... it means that they are thinking in the ways they have been taught and that is pretty hard for them to break out of that way of thinking. They are also covering their butts to a certain extent.. there is no way they can say to any patient, "Oh sure... as long as we follow Treatments A, B, and C, then there's a good chance you will be cured". NO one can make promises like that and especially doctors who can be sued for just using the wrong words.

1) A second opinion can be invaluable because a different doctor may see the same problem, but has a different solution for how to tackle it. Both doctors' solutions/plans may be good but they may be coming at it from two different angles. The more options you have to choose, is always better in my opinion... on the other hand, it could also cause more confusion because if there are two different options, then which one do you choose?

I'm in the same boat as you... I LOVE my oncologist and have total faith that she is always searching for the best treatment plan for ME as an individual and I'm more than happy with that. If, for a minute, I thought that she was offering the same plan for all her patients and not looking at us as individuals, then I would be out there asking for a second and third opinion. But that's just me. You have to search into yourself and ask yourself some difficult questions... Are you REALLY happy with your onc/doctors and if so, why? Occasionally, do questions come up where you think that maybe he's not following something that is important to you, or you feel he hasn't got your best interests as a priority? If the end result is that you are happy with him, then you can just enjoy knowing you have the best that works for you... and if at any time you do start to wonder, then go ahead and ask for a second referral/opinion.

2) Stage 4 = Death Sentence. Oh, can I relate with you on this one!! Like you, and everyone else here who has access to a computer and the internet, I read as much as I could find on Colon Cancer, Survival Rates, Consequences, Spread of Cancer, and a whole bunch of other terms... including the 4 stages. I was diagnosed as Stage III, so I already was scaring the daylights out of myself when I started reading... but at the time said, "Well, at least I'm not a Stage IV"!! You see, with the reading I had done, I had already set myself up that if I had been a Stage IV, then this was a death sentence... any other stage was something I could handle. Of course, when they found out my cancer had spread to the adrenal gland and the lung, then that made me a Stage 4 and I had a bit of an emotional breakdown, I'd say. This was the worst of my nightmares... I'm now a Stage 4, so I'm going to die!! I could not, no matter what anyone said, get this out of my head. I'm incurable!! I'm terminal!! I'm going to die!! That's all I could think of and there are no words to describe the terror I felt... pure, 100% terror.

So, I totally understand what you are feeling and going through right now. But there are a few missing pieces from the scenerio you read on the internet about Stage 4 = death. I feel fine. I don't have any of the "symptoms" of someone who is dying. I'm certainly far from "wasting away" ... the pictures we have in our head about someone who is skin and bones, can't eat, can't feed themselves, and must have 24 hour care. I am totally living my life the way I did before I was ever diagnosed, so what gives?? When does the "dying process" start, if I'm supposedly dying??

It was then that I realized... as much of a tool as the internet is, and it does have a lot of information out there, the best information you can get for yourself is to talk to others who have been, or are going through, the same condition you are. Doctors are fabulous, but they aren't going through it themselves so they are giving you medical opinions/treatments/plans. Family and loved ones are a necessity as a support team, but they too don't know what it's like to go through this because they aren't going through it themselves... but they are going through their own fears and symptoms knowing that you have this condition and it scares them. No, the best thing is to surround yourself with us semi-colons... because we DO know what you are feeling and we have all had the same questions you have... and some of us have answers, some of us are waiting to hear the answers... from those who have been there. And as you and I both know, there have been quite a few Stage 4 folk on these boards who have been where we are and now 5, 6, 10, 20 years later are still around to talk about it. In case you didn't know, YOU and I are going to be one of those and we are going to come back here to talk to others about our experiences and what we've learned along the way

3) When is it time to give up? Again... a very good question and one that we all have given some thought to. The "pat" answer of course... "never give up"... but that doesn't really answer the question. WHEN will we know it's TIME to give up? I think that is a personal choice and it's one of those things that you will know when it is... it's not a time that you plan for and say, "Well, I'm going to give up when I have to go through Procedure #15 or Procedure #6". If you are asking the question, then it's not time to give up.

I remember when I was a little girl...probably around 6 years old. I didn't really understand the concept of death and I guess someone our family knew must have died. I wanted to know WHY they died? What makes someone die?? I don't know what the answer was that I was given in my 6 years of being on this planet but I distinctly remember thinking... well, dying is stupid. If you stop breathing, you die... so obviously, if you refuse to stop breathing then you won't die. And I remember making a pact with myself saying, "No matter what, when someone tells me it's time to die, I'm not going to stop breathing... so no one can make me die as long as I keep breathing." Out of the minds of babes But to this day, I know that unless I give permission to stop breathing, I am going to continue living.

One last thought on what has turned into a saga ... when you think Stage 4, think the word "INCURABLE"... then break that word down - "IN CURE ABILITY". What this means is we ALL have the ABILITY to CURE from withIN. Filling our minds with negative thoughts, the end of a procedure being death, leaving our family and loved ones, and thoughts along this line, will in fact produce this. Our MIND from WITHIN is incredibly strong and powerful and we can actually make our thoughts become a reality.

What do YOU want at the end of this journey? What are your goals? I know that I want to grow old with my friends. I don't have children of my own, but so many of my friends do and I want to be there to see them graduate from university, I want to see them perform, I want to see them settle down with someone they love and carve a life for themselves in our crazy mixed up world. But most of all, I want to continue having the fun, love and crazy times with these friends until we are all ancient and screaming at each other "WHAT?? I DIDN'T HEAR WHAT YOU SAID!! SPEAK UP!!"

So yes, the lung surgery is going to be extensive... so? You are up for the challenge because you have a lot going for you in your life and the whole reason you are going through this surgery is so you can continue this life you love. You say that the surgery is next week... then you will be seeing your onc Dec 12th to start the chemo. Well, you know they won't start the chemo until you are healed from the surgery... so if you are seeing your onc a few weeks after surgery, then chances are you are going to be doing pretty darn ok a few weeks after the surgery... so we are only talking a couple of weeks that may take up all your energy for healing. But if this DX of being a stage 4 was a death sentence... they would not be putting you through the surgery and chemo... they would be more focused on just keeping you comfortable

You have a LONG LONG ways to go... so throw out that thought of death and when you should give up Neither fit into the equation

:::end of saga::: (for now )

Huggggggs,

Cheryl

Karmar

Wow
Dear Beth,

I am very new to this site. I have not even gotten a diagnosis yet. I do know stages as my father fought a battle with it for 7 years before he lost. I have been in such great pain and many trips to doctors and er. There have been many times my thoughts have been is it my time,without even knowing what is wrong. This site has helped so much.One post reve,ed in what was accomplished each day. So now when i get all the laundry done and put away-Even though it takes me 4 hours to do so-and then i have to be on pain meds and not move for hours for relieve-I take joy in knowing I accomplished something. My faith tells me everyday I am here for a reason- So I too have those crazy thoughts racing through my head. I pray for the best for you
Karen

kimby

Advise
Beth,

I hope this finds you well today. I don’t know that I can be of any further help from the great responses you’ve already received, but here goes:

1. I was diagnosed stage III 8/07, surgery, folfox, colostomy reversal surgery in May, bad PET in August with mets to liver/lung. At the time they found the mets, I had an oncologist that I ADORE and trust. She is very good, caring, and has a wonderful staff. I decided to get a second opinion on treatment from a major NCI cancer center because it progressed so quickly to stage IV. I needed an opinion from an oncologist that specializes in crc, not a general oncologist. I just don’t think I have time to waste. I figure a second opinion is always a good idea – if you get the same answers then you are confident to move ahead and if you get different answers you have choices. I LOVE choices! If it makes you more confused you get a third opinion. If you get answers you don’t like you keep get opinions until you find a cure!

I ended up changing oncologists to the major cancer center. It was the most difficult decision I’ve made since my original diagnosis because I do trust and admire the one I left. But I get better care at the large center (neither are local for me, but both within a reasonable commute), I get specialized care for my type of cancer (the infusion area that I use is for colon, bladder, and other intestinal cancers), the liver surgeon there is far superior to the ones available at the other center, if chemo doesn’t make my liver respectable the major center has more options for me…..

2. You are not a statistic. Statistically, you won’t get colon cancer at your age or stage IV. You don’t fit the ‘mold’. By the time the stats are published they are outdated. We now have different/better treatments, more treatment options, not to mention that you don’t fit the demographic of the patients that they followed. The stats don’t apply to you! You are only 5% likely to have colon cancer prior to 50, so why can’t you be in the 5% now? Create your own reality. It will keep you positive. Besides, reality isn’t all it’s cracked up to be!

3. When the ‘will this be enough’, ‘will I fight this forever’ demons arrive I take a deep breath and visualize those tumors shrinking and disappearing. I can (at any given moment now, with practice) physically see my tumors shrinking in number and size. My plan is to live with cancer. If it comes back I’ll live with it. If it doesn’t, I’ll live with all the testing and waiting. I will LIVE. LIVE MY LIFE every.single.day.

You can do this. It will get better. Life is wonderful! This ‘new normal’ cr*p takes awhile to get used to and I don’t always like it. It also isn’t all bad. Everyone on this board are fighters…not sure what brings us here, but only fighters seem to arrive.

Best Wishes,

Kimby

butterfly23

Stage 4
Hi, I am also stage 4. When I heard it I also thought "death sentence" but as my onc explained it to me, because my tumor broke through the colon wall and had mets to the lymph nodes it was considered stage 4, if it did not break through wall and no mets it would be a different stage. I had 6 months of chemo and just had surgery to remove tumor, I go to my onc this week to see if he wants to do more chemo as a precautionary. It is NOT a death sentence!!! When I was 1st diag. my onc suggested I got a 2nd opinion, he thought maybe in Boston they may be using a new treatment that he is not. I did go and they would have done the same treatment as my onc in rhode island.. I thought it was very noble of him. I absolutely LOVE my dr. I wish you all the best and you are in my thoughts and prayers!!
Karyn

dorookie

Buzzard said:

Advice
OK, first of all stay off the internet and quit reading all the stuff you find out there, it will scare you to death. It is normally way behind in fact and cancer treatments get better everyday. I too thought that the "C" word was a death sentence after reading everything I could about it. Come to find out I found this website and actually found people just like me with the same disease that could tell me things I wanted to hear.
As with the 2nd opinion, it is your health, why not ask your surgeon and onc about it, what they think about your prognosis and if they will refer you to someone for another opinion. Any surgeon with any salt will do this for you if they are any type of caring individual. Yes, if I wanted a second opinion I would get one, I did and I am very glad I did, it turned out that I had a Dr that maybe did one of these types of surgeries a year and went to a Dr that did 10-20 a month. There is your difference in care.
Thirdly, about giving up........Im kinda like that frog thats halfway down the birds throat with a death grip around the birds throat and saying "Never Give Up", Why would you if you have someone that loves you not fight for your life ? If you were terminal in which you are not then maybe you might have a reason but treatment options are getting better everyday and that thought alone , the chance of a complete cure is what keeps everyone going. I always think of my sister that passed away when she was 6 years old with polio, the vaccination for polio came out the same year that she passed away, i was born 8 months later, I never knew her but just the same "if" it had been a year earlier I might have known her other than about her. So you see there is always hope and even a day that you feel bad is another day spent with loved ones. But, its not a choice for me to make for you, its only the way that Im looking at it...
The will to live becomes a survival instinct when your mind wants to give up but your body won't allow it. Your not going anywhere, why? because of everything you and your partner has already gone through why quit now?
God Bless ya hun you and your caregiver..........

Great Advice
Thanks so much!! I really appreciate your reply as well as the others. I knew I could rely on you and the others to help me out. I feel so much better after reading everyone's reply. I will stop reading so much, it just brings me down. I have my surgery in 7 hours and in a strange way looking forward to it, guess cause its the first step toward being cancer free. Once that is done, then that is just one less thing I have to do.

I joined a local team that is raising money for the Relay for Life, its an ACS fundraiser. We will be raising money for ACS to find a cure. Then in April we have a relay walk, we walk for a straight 24 period, while the walk is going on we will be doing things to raise money, like raffles, selling food and other things. I am excited about it, gives me something to look forward to. I might not be able to do alot, but the walk is during my chemo treatment and no matter what I will be there and even if I only walk one lap, well then that will be an accomplishment.

Please keep me in your prayers and you all are in mine.
God Bless
Beth

ldot123

butterfly23 said:

Stage 4
Hi, I am also stage 4. When I heard it I also thought "death sentence" but as my onc explained it to me, because my tumor broke through the colon wall and had mets to the lymph nodes it was considered stage 4, if it did not break through wall and no mets it would be a different stage. I had 6 months of chemo and just had surgery to remove tumor, I go to my onc this week to see if he wants to do more chemo as a precautionary. It is NOT a death sentence!!! When I was 1st diag. my onc suggested I got a 2nd opinion, he thought maybe in Boston they may be using a new treatment that he is not. I did go and they would have done the same treatment as my onc in rhode island.. I thought it was very noble of him. I absolutely LOVE my dr. I wish you all the best and you are in my thoughts and prayers!!
Karyn

Inspiring
Hi all,

Inspiring messages from everyone. I love the positive energy. It is palpable even through the internet. We ARE survivors. Nothing holds us back1

Lance