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Mets in both lungs - feeling sad

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

Yesterday my friend Mark went for the usual check up with the oncologist. Unfortunately I wasn't able to make this appointment and I really felt anxious about this since I was afraid the Dr. would break down and show him his scan of six weeks ago before starting on the current trial. I saw the scan by accident and it looked alarming. Mark asked to see it then but the Dr. just said "let's not look at this right now."

I don't love the oncologist guy but I thought this was a good move. I was hoping Markd would never see this scan but yesterday the regular oncologist wasn't there and whoever was in his place DID show him the scan. This did exactly what I imagined - devastated Mark. He's been doing so well lately, has a good attitude, finally having some energy. I was upset that the doctors apparently had no communication. I had emailed the Dr. ahead of time asking if maybe he could put off showing the scan until there was some better news. I guess he didn't get that email or my phone message.

Later that day I went to visit Mark. He talked in detail about what he saw - the size of the lesions, the fact that the cancer is in both lungs (worse that I thought - I thought it was just one). He also said he was glad he saw it. That made me wonder if my trying to protect him was such a great idea. I'm his power of attorney but does that give me the right to withhold information no matter how dismal it may be? He asked to see the scans and the doctor was just obliging.

I'm feeling horrible that the cancer is worse than I imagined, that Mark knows that now and that I tried to keep that from him although I thought I was doing what was best. I know I am rambling but if anyone has any thoughts I love to hear them.

Kathryn

alihamilton's picture
alihamilton
Posts: 348
Joined: Jan 2004

Kathryn, we all know and Mark knows too that everything you do and every decision you make is done to help him. I know how you feel about protecting him as I feel the same way about my husband, especially when he was so ill nearly three years ago. But I also learnt we can only do so much to protect anyone and they will have to know the truth eventually. If it were me, I would want to know!. I am sure Mark, with your support, will face this with the same courage he has shown in the past, especially as he has been doing much better. You are a wonderful friend to him and I am sure he appreciates that and realizes that you only want to help him.

Take care of yourself too.

AuthorUnknown
Posts: 1560
Joined: May 2006

Hi Kathryn,
My mother who has a dimentia with psychosis and is in nursing home was diagnosed with colon cancer in february of this year. I am her conservator. I did everything I could to fight the doctors for them not to tell her the diagnosis. I knew that it would mentally "kill" my mother. She has never been a strong woman even when she was mentally well, and especially now the news would have been devastating for her. When she went for surgery I told her that she has a tumor in her colon that needs to come out so that it would not prevent her digestion. That worked. She is on chemotherapy now in the form of oral pill and she still does not know the diagnosis. Not knowing the diagnosis has greatly helped her to recover very quickly from the surgery and maintain a relatively good mood throughout all this time.

Also, I come from Europe, and in my culture it is not customary to tell the patient about the cancer diagnosis. A doctor would first talk to the family and let family decide what should be told and what not. I think the medical care in this country does not care about patient's feelings. They wanted to "kill" my mother.

So, with that said, I totally understand your concern. It is very unfortunate that Mark's doctors did what did. You just now have to handle this the best you can. Tell Mark that you are there with him all the way and love him and that you are one team - you, him, doctors, etc. and you will fight this illness.

He is very fortunate to have you on his side. My thoughs and prayers go to Mark and you.

Eleonora

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

Kathryn you can only do so much, dearheart! If Mark wanted to know, he should know. Sometimes it's easier to FIGHT if you can visualize WHAT you are fighting.
I saw my 2-inch 'baby' and did just that! Visualized blowing it to kingdom come!
I shed a tear for YOU, being so well-meaning, trying hard to protect Mark. PLEASE don't beat yourself up about it...what we do for the people we care about can never be wrong.
Hugs to BOTH of you!
Kathi

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Oh Kathryn - I can so understand how you feel and how you were only trying to protect him. I'm sure he understands that too. But, they are his scans and if he asks the doctor to see them, then that is his right. Don't feel bad - you were only trying to preserve his mental health - which is very important. However, given that he is a mentally competent adult, no doctor should legitimately deny him access to information about himself that he himself asks for.

A story about my diagnosis. I received news of my original colon tumor in the recovery room after colonoscopy. Then the doctor wandered out and I heard him talking to my husband - "....positive attitude so important...., in for a rough ride, take it one step at a time blah,blah, blah...." I said to my nurse ' Damn it - they are already talking about me as if I am no longer even an adult". She said "You go girl!". And when they both came in I proceeded to tell them both that I didn't appreciate being talked about - thank you very much - that this was my problem and I wanted to be involved in any discussion of its solution. Yes it would have been nice to not know anything about all of this, but since that is not at all possible I wanted to be as much in control as possible and not feel relegated to the background with my husband filtering information etc. Haven't had that problem since. This whole experience has SUCKED big time, but I feel better being the one to get news first and being the adult who is still in charge of herself.

So, speaking of rambling I am sorry. Only point Kathryn is that even when the news is bad, facts can be empowering once you recover from the shock. And sometimes what you imagine is even worse than the reality.

Take care (of yourself as well as of Mark)

Betsy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

YOU GO GIRL!

I feel exactly the same way....though nothing like that happened. I saw my tumor on the colonoscopy screen and ever since I have always asked to remain awake to watch and see....

As for telling/not telling Mark.....I definately fall into the Tell Me Don't Protect Me catagory. I don't like others thinking they can have that power over my health (oh surprise) be it emotional health or physical health. I like to be the judge of myself...of what I can/cannot handle. Give me the choice, don't decide for me.

peace, emily who likes knowledge for empowerment and doesn't like to feel patronized

cherriann
Posts: 156
Joined: Mar 2006

hi kathryn,
i have been on both ends as i also had a relative who i took care of and did not always let her in on everything but she was also not of sound mind. i think if mark is able to understand and wants to know then he should be told. i have ask my own doctors to be very upfront witn me about everything and although my prognosis isnt the same as marks i still believe i would want to know. he is so lucky to have someone like you who cares so much. my thoughts and prayers are with you and him.
take care, cherri

AuthorUnknown
Posts: 1560
Joined: May 2006

It does not sound to me that Mark was insisting on knowing. And if he was not really insisting, it would have been much more merciful not to disclose these test results. Especially considering previous postings that he was very sick and very down. Not all people of sound mind are able to take this news. I know few of them.

If a patient is of sound mind, and is very insistent and blunt about knowing, then, yes, of course, the patient should be told the reality. But if there is no insistence, I don't see any necessity to devastate the patient. If a patient changes his/her mind about not knowing, the option to tell is always there.

I have noticed for 14 years being here that doctors here are very much in a hurry to smack the reality right in a face, when there is no necessity for it.

But this is just my opinion.

cindybob's picture
cindybob
Posts: 61
Joined: Aug 2004

Dear Kathryn,
First of all, bless you. I can tell you being on both sides of the fence that I believe that the caregiver or decision maker has a much more difficult time emotionally than the patient. The patient's goal is to survive, as painfree as possible, not to be too burdonsome, and still contribute to the lives of the people that we love. But the caregiver has the fear and guilt and constant second guessing. I am so grateful to you and all of the caregivers and true friends out there that truly want what is best for the people that the care for and love. I also know that we patients can be real pains in the "tushy." (Get it?!?!?!) ha ha ha
Anyway, Tell Mark we love him and are sending hugs, good thoughts, prayers, and all his way.
Both lungs, that's more than most of us can handle, but to tell or not to tell, just depends on the person.
Eleonora, I am amazed that in Europe the docs tell the family first. That is exceptional. I think that it is lovely also that you are able to keep the diagnosis from your mother. I'm so sorry that you have so much to deal with, with your mother. You are a wonderful daughter and it must be so stressful. I will be praying for you too.
I guess this is just an ethics question and there is no perfect answer for all patients. But the European plan sounds great, unless like Betsy, if you're gonna fight this thing, you have to know the enemy. So far, I'm with Betsy, tell me everything and more. But I'm young and currently NED. I just think everytime I have any little thing, it's back! And I absolutely want to know. My imagination is way worse than the truth, thank heavens. And I do not take that for granted.
Love to all,
Cindybob

pink05
Posts: 553
Joined: Mar 2006

Kathryn,

I know how you feel. I am my father's health care proxy and my brothers and I basically make all of my dad's healthcare decisions for him. He is an able minded individual, however, he has a difficult time understanding english, especially medical terminology, so we have to interpret everything. Right now, I am having my own dilemma: My father is stage IV and when I asked the onc how long my dad would be on chemo, he said we would have to take it on a step by step basis. Then I hear stories of people with stage IV that are basically on chemo forever with some breaks in between. My dad asks us all the time how long he will be on chemo (he hates going through it, then again, I don't know anyone who enjoys getting chemo). It's hard on me because I don't know what to tell him. I feel like I shouldn't give him any indication that he could be on the chemo for a very long time. That would really bring him down. Some people are telling me to just tell my dad that for now, he will be on it for 3 more months (which was the original plan until a spot was found on his liver). In my dad's case, I think this may be the right thing to do, because if he thinks he will be on the chemo a lot longer than he expected, it would devastate him. I do agree with the others in that maybe this is better for Mark because now he knows exactly what he is fighting. He really is blessed to have you.

God bless the both of you,

-Lee-

StacyGleaso's picture
StacyGleaso
Posts: 1249
Joined: Mar 2003

Lee,

I was stage 4 and haven't had chemo in 3 years. Don't plan on ever being on it again, either! Tell your dad to keep going! He'll be fine!

Stacy

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

Keep talking to him and make sure that you are giving signals of hope because that is contagious.

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

I so appreciate everyone's kind words. All of you are my heros - I admire the courage and support everyone gives to each other. Mark is stronger than I imagined and is coming to grips with what's ahead somehow. I originally came on this board to get support for him but it has actually become a lifesaver for ME! Thanks so much to all for being there once again.

Believermjh
Posts: 36
Joined: Feb 2006

I understand how you feel, my husband is stage IV..wants to know everything..I still feels it knocks him down, but it is his choice...God Bless you both...tia

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