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No hope for Mark - should he know that?

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Today I spoke with a radiologist who has looked over Mark's latest CT scans. He's a known liver specialist who does resections and radio frequency ablation. I thought it would be a good idea to get one last opinion before Mark gets on the freaky trial where he'll be getting drugs so experimental they don't even have a name yet. I am regretting that decision now. Apparently Mark's cancer is so widespread and involved in the liver, lungs and even in the soft tissue that the doctor can do nothing for him. Chemo at this point he said would just buy him time.

Meanwhile, Mark has been off chemo for four weeks now. Who knows what has been happening during that time. He's looking well, has an appetite, is getting out when he can. The only visable symptom he has other than being rail thin is his insatiable sleepiness. He tires very quickly and take tons of naps all of a sudden.

It appears that the doctors have not been letting on how bad off Mark is. He still thinks all this chemo is going to help him. I know I am going to be reprimanded for saying there is no hope but at what point do I tell Mark how it really is?? He has the right to know so he can make arrangements and do whatever it is he wants to do. This information may make him change his mind about being on chemo at all. Or perhaps it will be so devastating that he will give up and really become sick.

I'm lost - I don't want to hurt him nor do I want to hide anything from him. It seems the doctors approach at County is to keep him optimistic. He is optimistic - so much so he's not done a will or made any plans. Perhaps plans would be different if he know he didn't have much of a chance.

He is waiting to hear from me regarding the doctors response. Is it better to know the rotten truth or be blissfully hopeful? I need some feedback here...

debcanmcg
Posts: 32
Joined: Jul 2005

I am sorry! I know what you are going through. I would not tell him. My husband and I never talked about how bad he was getting we held on to the hope that something would change even though We both deep down knew he was getting worse. I held on till the very end when I had to make a DNR decission. When my husband quit breathing and I made that call then I gave up. Don't take away his hope you will surive but telling him will only make his living now not worth while. Keep all those good memories close. I would not let the doctors tell him anything, but he knew and the night before he died I held him close and told him how much I loved him and that he still had to fight the battle it was not over yet.Not till the doctors were about to shock him did I step in and say enough is enough no more pain. And I held the love of my life till past the end. That was one of the hardest thing I ever had to do the hardest was when I held my 15 year old as she died from a car wreck. Keep believing that he will get better and maybe yours will turn out different than mine. Good luck, be strong Candice

oneagleswings
Posts: 425
Joined: Jan 2005

The mind is a powerful thing...sometimes if you "believe it..it can become so"..I think in the fight against cancer hope is the biggest ally..and really who knows..the new drug may prove to be "the one" that can keep the cancer at bay longer and give him more quality time..why not see how he handles the new treatment and if it makes him worse maybe that could be the time you suggest enough is enough...I was under the impresssion that when the doctors feel there are no more options..they tell the patients to get their affairs in order?? but that being said- I know of some people who are alive years after being told that nothing more can be done..the will to live can be really stong..I would think long and hard about taking that away...especially when he is feeling well...as one caregiver to another though I feel your pain and uncertainty and I guess really each situation is different and we don't know how we'd react if faced with the same choice...follow your heart..you know Mark the best...if the tables were reversed what would you want him to say to you?
Take care..you'll make the right decision
Bev

levensweg
Posts: 55
Joined: Jul 2006

I had a situation last year where my friend/ coworker was diagnosed with pancreatic cancer. As a stage 4 cc survivor myself, he confided in me. When hefirst had symptoms I convinced him to go to the doctor and then to follow through with scans, specialists, treatment options. All along he didn't know how bad pancreatic cancer was. His doctors didn't tell him right off. I chickened out and didn't say anything either. I don't think they even used the word cancer. They just gave him bottles of pain killers and said come back anytime for more.

I let him figure things out on his own terms at his pace, staying by his side as a friend. It took a few weeksand some research on his part. I supported his decisions. He refused chemo, but I did research and listed doctors for him organized a small file just so he knew he had options.

Later I told him I knew but was too afraid to tell him, and he ended up calming me down about it. What he really appreciated was my being there to help him and listening to him.

I'm not sure if I'd tell anyone they're terminal. What does that really mean anyway? Even the best doctors make bad predictions. My friend Ken had his own clarity and came to his own conclusions. I just hung in there for the ride and felt honored for it, though it was hard as hell and made me think of my own situation.
I don't think your hiding anything from Mark. But I do know that I would want to know what any doctor said about my case regardless of how bad it sounded. But only you know Mark. I think it's most important to ask him how he feels and what he thinks and help him as a guide to come to his own conclusions, whatever they may be when he is capable.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

No one told me that I was dying. It was not even in my radar. My beau knew...kept it to himself. I was left to my hope. And I fought. And I fought.
For whatever reason, my situation improved. I sometimes reflect on the fact that I was to be dead June 05. Unless I missed the e-mail..well...
That said, I got all my affairs in order. I have a will, and an advance directive. I held my family close, told them not to worry.
I wondered if I did right by my friend who passed from brain cancer. I was his biggest cheerleader. I asked his sil after he passed if he knew...she said "Yes, deep in his heart..but he fought with strong hope that he would be the exception".
'Miracles' do occur....really, these are things destined to happen. Just make sure Mark wants to do this trial....you know, he could be saving countless other lives....
Big, Warm, Fuzzy Hugs,
Kathi

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hello,
I personally do no think you should say anything to Mark about there being no hope. I understand where you are coming from about wanting him to get his affairs in order and that maybe he would not even want to do chemo if it would do no good, but if he believes it may do good, then maybe it will.
If he has a poor response and it makes him ill, then he can always quit. I am sure he is aware that the stats are not in his favor. He probably knows more than you think.
I never had any symptoms when I was going through all my tumors, chemo, surgeries, etc. I often thought that it would be nice not to even know that all of this was going on inside my body, at least when the mets were seen, that is. Obviously I had blood in my stools which led me to the doctor in the first place.
I did not have any clue that I had a tumor in my liver though, or my lungs....I wondered that if I did not know, how long would I live? Would I have a higher quality of life during that time, etc. etc.
I am very grateful now that I had the knowledge and did something about it. However it has taken me a very long time to recover mentally from all of the anguish.
I would not recommend adding to Marks mental anguish by giving him negative information.
Just see how the trial goes. He has already made his mind up that he wants to do it. Do not give up hope.
One doctor told me essentially that I did not have a chance in hell of surviving. Others told me that there was a _____% chance of being ALIVE 5 years from diagnosis, not cancer free.
I rejected all of these negative doctors and sought more positive ones. Strangely, here I am, still alive and NED.
I feel I am starting to ramble, but I would wait until things are very dire indeed before I would say anything of this sort to him. Just say that the doctor said he cannot help him - that he is not a candidate for RFA, don't say he does not have any chance of getting better. I know a woman who has been alive and doing quite well (stable) after 7 years of going through a very poor prognosis. Just wait and see what happens. Cross one bridge at a time.
JMO,
Take care,
Susan.

AuthorUnknown
Posts: 1560
Joined: May 2006

Kathryn,

I would not tell him anything. Noone should be told they are to die soon. Take care of his affairs without telling him about the real situation. Just imagine what people on death row feel when they know they are to be executed tomorrow? It is exactly the same in this case. Who knows how long he has got. Let him be in peace while he can. He might realise it himself if he starts feeling worse. But maybe he would not ask questions.

Look at my posts about Protocel at the below post. If there is nothing to loose, maybe you can try it. It does not cause any harm. Let him be in peace and enjoy the time has has. And you also, enjoy the time you have together, cherish every moment.

It is very difficult for you, I know. May God give your strength.

Best wishes and God Bless, Eleonora

stage4mom
Posts: 22
Joined: Aug 2006

I agree with Eleonora....at this point I would try an alternative method. Ty Bollinger's new book has several stage IV treatments, none of which will do him any harm, and who knows, maybe one will work for Mark. At this point, Mark has nothing to lose by trying something else.

As far as telling him what the doctor said, I would do so, but at the same time I would provide him with information on other treatments that are available. There is always hope.

Jane

midnte0708
Posts: 166
Joined: Jul 2005

Although it seems the odds are against Mark...just remember some of those who replied above should be gone now according to their doctors.
My father seems to be under the impression his chemo for liver mets will "cure" him. I don't say anything different. He doesn't do any research, I do it all and I'm sure it's better that he doesn't know the stats because of course they are not very good. I've also read that doctors say the stats on stage IV colon cancer should be rewritten because of the many new treatments out there today and new procedures. The doctor gave my father 1 year to live in November 2005. This depressed and surprised him so much...his condition after that declined (he was so depressed) for a while then after Christmas the chemo suddenly started to finally shrink the tumors a little bit and his overall health improved. Well it's October 2006 and he is still going strong taking his chemo and working full time. I don't give any thought to the November 2006 deadline given by the doctor.
I also read about a woman who has been on chemo for 6 years with colon related mets
Even though the new trial seems like a long shot at helping.. remember some of the chemo drugs used today came out of those trials and took years to get on the market. He has a good opportunity to try them now.
I don't know how you feel about Alternative treatment but here is a link below someone posted a while back that I saved about stage IV patients that were given up on by their doctor.
http://www.cancertutor.com/index.html

I've only glanced at it but it seems very interesting. It's overwhelming the amount of alternative treatments out there and hard to sort out the ones which may or may not help.
Stay positive for Mark's sake. The mind is powerful and just positive thinking may produce good results.
Don't give him the doctors "opinion" because it can do more harm than good.
If that time comes where he will needs to get affairs in order I think Mark will know it.

Sue

houseofclay
Posts: 63
Joined: Nov 2004

I think the real issue here is what does Mark expect of you? If you agreed at the beginning of his cancer journey to be the one to look out for him and help with the hard things, then maybe he is counting on you to tell him when it's time to get his affairs in order. I think that all of us should have these things regardless of whether cancer is present in our lives or not. (I have said that before, I know.) And while his prognosis is not good at this point, losing hope doesn't help. I still think there can be a way to handle wills, estate planning, etc. without giving up hope. Attending to these tasks while you feel up to it, and Mark certainly seems able to now, makes more sense than some more emotionally charged moment when everything looks more grim. If you think he has property that he wants handled a certain way, I think you have to remind him to make provisions.

A gentle reminder to handle his affairs does NOT have to be communicated in such a way as to dash his hopes. I think you can nudge him to do these things without mentioning the latest consult if that is what you think he wants you to do. And like others suggested previously, you can volunteer to handle your will, etc. at the same time so that you both are doing it.

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I am going to add my 2 cents worth. I would want to know if I was not going to get better. I would want to get my affairs in order and also to say my goodbyes to family and friends. I have been lucky that i was only a stage 3, and so far i remain NED after surgery in 6/03.

I have been a nurse for 28 years and i have seen far too many patients that were not told the truth. I would not want you to have Mark give up hope, but I think he should know that the liver ablation would not help, but maybe the meds would.

I have seen far too many patients have painful procedures done and also treatments with many side affects and still not get better. Sometimes enough is enough and patients should not suffer so much.

Maureen

musiclover's picture
musiclover
Posts: 242
Joined: Oct 2005

Thanks so much to all of you. Your posts really help so much.

I spoke to Mark today - I just couldn't do it last night without falling about. I told him I had heard from the doctor re: the CT and that the location of the lesions is precarious for that procedure right now. I omitted the soft tissue detail and that this procedure is most likely never going to be available to him.

If Mark really wanted to know the nitty gritty of it, he could ask to see his CT. The doctor will tell him if he asks. Luckily, I know he'll do it in a gentle way, unlike the last guy who was brutally honest. Mark was in a constant state of depression under his care. He was offering just too many dismal facts.

Thanks again!

Patrusha
Posts: 488
Joined: Jun 2006

If I ever get to the point that my dotors have nothing else to offer me, then I have instructed them to tell me so. True, I am "only" stage 2, but others have progressed from this stage. If my husband knew things about my condition and withheld them to "protect" me I would be furious. That's why I've made it clear to everyone that I always want the whole truth, nothing but the truth. How I deal with that, react to it, is my own burden. I can't react to something I don't know.

If I was Mark and you sat me down and told me everything his doctor said, I would thank you. Then I'd probably do the trial drug cuz I would know that I would have your support. But that's me. You know Mark best. What do you think his reaction would be to the whole truth, as it comes gently from you and not abruptly from some doctor? He might never ask the doctor for more because he believes you've already told him everything there is to know.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Kathryn -

I am so sorry about Mark and I understand your dilemma. It is tough to know what to do - to some extent you need to let your friendship for him and also "the moment" guide your conversation.

I so much agree with Patrusha. I don't want anyone to tell me I am dying, because I don't want to die. But, I absolutely do not want my husband "knowing things" about me that I don't know. (I realize you and Mark aren't married, but I still think this is something to think about since you are so close to him.)

I can so relate to Patrusha's feelings. When I was first diagnosed after colonsocopy in May 2005, the doctor told me what he found with my husband present and then they wandered off while I continued to "recover". I could hear them talking - "positive attitude important...blah, blah, blah........ surgery.....blah, blah, blah......oncologist.....blah, blah, blah.....lots of new treatments....blah, blah, blah.........! I love my husband, but this was hugely annoying. Then a nurse came to talk to me and I said "I hate this - THEY are already talking ABOUT me!". She said "you go girl" - "tell your husband this is the first and last time he talks to a doctor "about you". And when you meet your sugeon and your oncologist, take your husband along if you want to but make sure you and he both understand that YOU are the one who is talking to them. DON'T BE TALKED ABOUT."

I've stuck with that advice and it has worked well. So, if I were Mark, I would not want to hear bad news, but I also would want to feel like an adult in charge of my own situation. I think that Mark will let you know how much he wants to know - and I think you should stay tuned to that - but I also don't think you should refuse to share information with him when he asks. And, as a responsible adult, I have to say, that while I hate this sucky disease, and while I love my husband, I would feel even worse if I thought there was something he knew that I do not. (As it stands, I know all there is to know and share with him what seems right - not bad news at all, but he doesn't do well with details, whereas I actually thrive on details and get depressed on generalities.)

Wishing you and Mark well,
Betsy

themis01
Posts: 168
Joined: Feb 2005

I don't think any person or doctor needs to continually beat into someone's head that they are going to die. He will figure it all out in his own time. Our family did not give up until my mom was no longer here to fight. I still believe in luck for a very few people out there that have it as bad as you have described he does (sounds like my mom's) so why take that tiny chance of a good ending away??

finner
Posts: 232
Joined: Jan 2005

It's a difficult one alright. But as some people have already said, if Mark really really wants to know, he will ask the question. I, personally, am not at that stage yet, altho' stage 4, liver and lung mets. I did, after last ct results, say to onc. that if I were to ask the question, how much longer do I have, would he have an answer for me. He said he would,(and i liked this part), with certain caveats, whenever I wanted to know this. I don't want to know yet, but with ct scan approaching on Oct. 10th and depending on how things look, I may change. my mind. This is a bit rambling, I know. I suppose waht I am saying is that when Mark is ready, he will ask that question.

Best wishes and big applause for being such a good friend to Mark

Margo

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